View Full Version : Melanie Reid of The Times (UK)
11-05-2011, 08:18 AM
Sitting here, with tears rolling down my cheeks.
11-05-2011, 08:19 AM
I did try writing to Melanie, well send her a small present, and I sent it to a Spinal website office that knew her address but I never heard back. I do hope she liked it.
11-05-2011, 08:23 AM
an interview with her.
11-07-2011, 01:39 AM
I live in Hong Kong and am unable to listen to the interview: "not available in your region". Any possibility of posting it on YouTube? Thanks.
11-26-2011, 06:25 AM
I think that would be in breach of BBC copyright.
Leave it with me and I will see if I can do something!
11-26-2011, 07:16 AM
Still working on it!
11-26-2011, 07:27 AM
I don't know if they will permit it but here goes.....
11-26-2011, 03:40 PM
Frances144, thanks so much for posting the interview. I wasn't able to get access to it with your first link but the YouTube one was perfect.
So much of what she relates in her interview rings true with me. I can remember, in the first moments after being injured, thinking....Hmmm.....I think this is very bad.
I know she's worked very hard with the abilities she has. When she posts that she's had some improvement, it's such good news. I feel like I know her!
12-28-2011, 10:22 AM
Inevitably, one of the first things that everyone says to me is, “How are you?” – the verb trembling in the air in a sort of Kate-Winslet-at-the-Oscars way, vibrating with emotion. If you think about it, this is not the way you would usually greet an old friend or acquaintance. Normally you’d say, “Lovely to see you,” or “Haven’t seen you for ages,” or “How are things?” or “Great hair!” or “Where did you get those wonderful boots?” Not, “How are you?” like there’s just been six months of gruelling chemotherapy and the prognosis hangs in the balance.
It’s the same when I go out in company and everyone makes a fuss, standing up and rearranging furniture around me. People are just being kind, but the end result feels like they’ve either used a Tannoy or erected a big plastic banner to announce: “There’s a cripple in the room!” I’m aware this is all frontier territory for me, that I’m a wheelchair rookie, but I know already that I’d much rather be ignored than fussed over.
And first confession of the week: if I’m brutally honest, I’m sometimes averse to being in a group with other wheelchair users. Often I don’t want to join in; I want to escape, not be labelled. How horrible am I? Genuinely pretty horrible, I sometimes think. The spinal version of a Holocaust denier.
Similarly, I struggle when anyone, again just trying to be kind, pushes my wheelchair without asking me first. It feels almost like being groped: it’s such an invasion of my personal space that I sense the red mist rising and want to shrug them off angrily.
As we head for the party season, can you imagine trying to socialise in a crowded room in a wheelchair? It’s impossible. You just get jammed in one place, parked at crotch height. One cannot mingle. Accordingly, all conversations in wheelchairs outlast their natural life span. Small talk is replaced by overly heavy talk. One’s radar for whom to avoid is rendered useless. One’s body language is neutralised. You can’t do what everyone on two feet does, which is to dance the subtle waltz of social gatherings, bouncing and drifting from person to person, ducking and diving, seeking lightness, laughs, gossip.
Going to the loo becomes a crowd-parting performance – the Tannoy blares again, “Cripple heading for ladies! Make way!” – rather than a useful way of escaping from a conversation that has run its course.
But all this stuff I must internalise, must hide behind a smile and gracious thank yous, because to show my feelings would be utterly churlish and offend those who have nothing but goodness in their hearts towards me. And yes, of course, it is lovely to get invited to things. And yes, inevitably, when I venture out there are loads of times when I do need help getting through doors or up kerbs, and then I am profoundly grateful not to be ignored.
So I want it both ways. Of course I do. I want every door, every slope, every car park to be so wheelchair-friendly that I can zip through life without drawing attention to myself. I want to socialise, but on my terms. I want to be ignored for my situation, and treated as I would be on my feet. But life isn’t like that, people aren’t like that, and buildings and pavements certainly aren’t like that, so sometimes I’m desperate for help. Especially because my hands and arms, with their much reduced capacity, mean that I’m pretty pathetic out in the real world. Independence, I am learning, is a more complicated process than I ever imagined.
Anyway, when people ask how I am, I say, “Very well, thanks,” as brightly as possible, while inside I have a mental image of the FTSE 100, jagging its way across the screen. Trying valiantly to continue an upward trend towards 6,000, but constantly being hauled into another dip. The Greeks, damn them, are equivalent to my bladder infections; they keep foiling my progress, I keep battling back. I am that fragile little FTSE arrow in the top left-hand corner on Sky News, flickering upwards then downwards, but always optimistic in intent.
As some of you may have guessed, I am under the cosh of another infection, after six or so wonderful weeks of feeling great and making progress; I mean, walking without ankle splints, how fantastic is that? But just as you get accustomed to life without the handbrake on, the bugs get you again. The legs cease to function and start to spasm; one’s pee begins to smell like a year-old pile of rotting turnips; one sizzles from the waist down, as if seated in boiling oil, while one’s skin is cold to the touch. Nice, huh?
But I’m coping better. The reason I’m coping better is the second confession of the week: I am on antidepressants. According to the Daily Mail, I belong to that weak, shameful and (particularly, in my case) spineless army that constitutes the disgrace of Prozac Britain. The reality is that accepting I needed help required more strength than weakness and was one of the best things I have done. I still feel exactly like me, but I feel a more mentally resilient and much less tearful me. The peaks and troughs have been subtly smoothed out.
Last week, when I told my consultant at the spinal unit, she was absolutely delighted. “Tell me who was brave enough to suggest it to you,” she said drily. The answer is Emma, my community physiotherapist, a wise and perceptive woman. One day about two months ago, when I was feeling very low, my knees suddenly buckled on the parallel bars and I slid in slow motion to the ground, with Emma, half my height, unable to hold me. As we rolled on the dusty floor, I wept tears of utter despair. At which point, she fixed me with a fearless eye – she used to play rugby – and asked if I would consider antidepressants. “Superwomen don’t need them,” I sobbed. “Superwomen do,” she said gently. “Sometimes Superwomen need them the most.” And so, for once in my life, I took some good advice.
12-28-2011, 10:24 AM
One of the really humbling things about writing for The Times is the quality of the feedback I receive. Ninety-eight per cent of my correspondence is truly life-enhancing: practical, perceptive, generous and hugely intelligent. I do not exaggerate if I say that readers have lifted me up and carried me over some of the biggest humps along this rocky road I’m on, and for this I am ever grateful.
The other 2 per cent? Well, half of it is delightfully quirky, barmy even; dry to the point of obscurity; the meaning, long before it reaches me, having evaporated like raindrops in the desert. I enjoy that too in a perverse sort of way. And the final 1 per cent, I have to admit, is simply a better class of scolding than a journalist would get on any other newspaper in the world – and I’m proud of it as well.
Last week, following a column where I mocked the miracle spinal recovery storyline in Downton Abbey, I received a splendid e-mail from an upset lady reader. “For goodness’ sake, get over yourself!” my critic exclaimed. “Really, just because you’re in a wheelchair, it does not give you the right to talk to the rest of us as if we were morons! You are not the centre of the universe, you know, and not everything has to be good for you. I’m going to stop reading your column if you go on like this.” The best bit? Listen carefully and you can hear Maggie Smith as the Dowager Countess saying it.
Now, being a well-brung up girl, I can take a serious telling-off, so I hang my head and apologise. I do not believe I am the centre of the universe, never have, never will; and I am genuinely sorry if I have seemed patronising or a humourless pro-disability type. I hope I am, in real life, rather more subtle than that.
What I can not take, however, is some of the nastiness that swirls around electronically, on the internet and in messaging and texts. Trolling, I think it’s called: the beasting of strangers by anonymous, twisted individuals; the human capacity for monstrous cruelty set free by modern technology. All of which, thankfully, one can avoid and ignore if one does not live online.
Except when the nastiness arrives on one’s private mobile phone at 4am. The text was a hoax, but of course, when I woke and read it at 7.30am, I fell for it. I can spot spam e-mail and sniff out a Nigerian bank swindle at 50 paces, but I’m a novice in the way phones get hijacked and abused. Sent from a number I did not know, the text purported to come from my son, telling me he loved me but had a crisis in his life and could never come home. It read exactly like a goodbye message; one written, distressed and perhaps a little drunk, in the middle of the night.
Shock and icy calm shut me down to autopilot. I phoned and texted him – no answer – and left the kind of messages a mother would in such desperate circumstances. According to the grim, unbending schedule dictated by paralysis, I spent my mandatory two hours in the bathroom, my phone never more than a lurch away, my head whirling, computing. I forced myself to stay calm and think logically. Was that why he had sounded distracted, vague, earlier in the week? Was that why he had not responded to my texts on Wednesday night?
Then, after my carer had left, and I was sitting trembling in my chair, frozen mentally as well as physically, the boy phoned me. Dopey-early-morning-student voice. I started sobbing.
“What’s wrong, Mummy?” He sounded bewildered. By now I was I howling, hyperventilating.
“Darling, are you safe? Are you OK? Your text in the middle of the night…”
“What text, Mum? I didn’t send you a text. You see, I was at a Hallowe’en party last weekend wearing a dress and two guys picked me up from behind and tipped me in a hot tub and it drowned my iPhone… That’s the third one… I knew you’d be cross… I haven’t had a phone all week.”
And then I sobbed even harder, the terror and tension flooding out of me. I was trapped, it was apparent, not in a tragedy, but in an episode of Hollyoaks.
As it turns out, I may have been, unintentionally, the butt of horrid black humour from some bored Scottish squaddies (and nobody does it blacker). My son’s beautiful girlfriend had left her mobile in a taxi – what is it with students? – and the taxi driver, when he found the phone, dropped it off at the guardhouse of the local army barracks thinking it belonged to a subsequent passenger, a soldier. So, to the prankster who found “Dougie’s mum” in the address book and then played such a cruel, random joke, I forgive you, but please understand that some things aren’t funny. Ever. The whole affair aged me about ten years. (Besides, I’m still fretting about the hot tub. Student party? A hot tub? What’s the world coming to, for heaven’s sake? In our day it was six cans of lager and a Blondie album.)
Back in the peace and solace of my gym, the door shut on a mad world, things continue to progress slowly but steadily. I haven’t been on the treadmill for a while, because there hasn’t been an extra pair of hands around to help, but without ankle splints and using a frame I am able to walk about 15 steps, and would go further if I had more space. The freedom from splints is marvellous. Moving in a straight line is relatively easy; turning, or going in a circle, as yet exhausts my reservoir of energy.
What most excites me is the increasing flexibility and strength in my torso; when I stand I now feel comparatively secure and steady. And the act of standing up, while not yet rivalling Matthew Crawley’s impala spring, is requiring noticeably less effort from my arms. Oh God, who mentioned Matthew? For goodness’ sake, my dear, get over yourself!
12-28-2011, 10:26 AM
The dog and I are playing her version of grandmother’s footsteps. The rules are simple. We always play it in the kitchen, where the food is, and I’m always It. When my back is turned, she stalks me with her eyes, her ears up, devil-dog-style, alert as a wolf, ruthlessly evaluating her chances of getting something to eat. The split second I start to turn my head, the ears droop pathetically and she freezes in an impression of a baby seal about to be clubbed to death.
She’s good at it. Because of my lack of mobility, I am slow at turning, and by the time I meet her eyes she is already in seal-pup mode, her little black Staffie face as soft and innocent and endearing as anything resting on an ice floe in Frozen Planet. But sometimes, if I’m quick enough, I manage to catch her out, get to glimpse the predator in full-on hunting mode, calculating her chances behind my back.
“I can read your mind,” I tell her. “You’re such a con artist. You’re five moves ahead of me, aren’t you? Crust of pizza on that plate there – you think that’s got your name on it, don’t you? You know there are at least two things in the fridge past their sell-by date, plus the remains of that dine-in for two; that’s why you live in hope every time I open the door.”
She pulls that pitiful “How can you be so cruel? All I want is love” face. I haven’t seen anything as heartbreaking since David Attenborough’s film of the skua snatching a cheeping baby penguin from its desperate parents. This is a terrier with first-class honours in applied anthropomorphism.
“You misunderstand me,” she says. “My whole life is dedicated to making you happy. Food means nothing to me. Honestly. But seeing you’re parked by the dresser, how about a dog biscuit? At your left elbow. In the green box behind the cereal.
“And besides,” she says, warming to her theme, “you’d be really bereft if I wasn’t here.”
If this dog could play the violin, she’d be playing it now. She yawns, swallows hard, utters a tiny, sad mewl. “I bet there are lots of things you don’t miss since your accident,” she says. “Like getting up at 6am to muck out horses. But I’m not one of them. You love me. Really you do.” “What other things do you assume I don’t miss?” I ask her, suddenly intrigued. “Easy,” she says.
“Having to shampoo me after I roll in fox poo. Pulling sheep ticks off me. Hay bills. Commuting to the office and massive diesel bills. Farrier bills – though I have to say I really miss those lovely chewy, smelly toe clippings from the horses.”
She’s on a roll now. “I bet,” she says, “you don’t miss shopping, making small talk, worrying about how you look or what clothes to wear. Trivial stuff. You don’t miss feeling responsible for all the practical stuff that needs doing round the place, either. You don’t miss being a chauffeur for Him-who-gives-me-plentiful-biscuits-especially-when-he-comes-back-from-the-pub. You surely have no regrets about not washing dirty clothes when Young- him-with-lots-of-hair comes home from afar.
“And what about Christmas? You’re freed of all the toil of choosing cards and presents and cooking and fretting about whether your table decorations are fashionable. You’ve always been a festive killjoy, whinged predictably about the commercial tyranny of Christmas. Now you’ve got the perfect excuse to leave the rat race. Your wish has been fulfilled.”
“For a supposedly intelligent dog,” I retort, “you really aren’t that bright. If you think I ever wasted a nanosecond worrying about whether my table decorations were fashionable, then you’re even dumber than I realised. But on the other matters…” I pause.
Pip should be right, of course. There are all sorts of grotty chores and superficialities and triviality I am now spared. But in truth I would take on every single one of them every day for the rest of my life, with a smile on my face, if my spine could be repaired. I’d bounce gladly out of bed on the coldest, darkest winter morning to shovel manure or fill haynets. I’d willingly pay bills of any kind, drive a million miles, sit in traffic for hours, wear M&S trackie bottoms every day until I die.
There is no penance that I would not exchange for my physical freedom. I’d humour people for hours, be a chauffeur for anyone. I’d live in penury, happily do a menial job. I would give anything to be able to wash my son’s dirty clothes or climb up the stairs to clean his flat or prepare a Christmas dinner again. It’s that old bit of wisdom you never learn until it’s too late: you never know how much your health is worth until it’s something you cannot buy.
I offer Pip the crust. She approaches and I get a whiff of something unmentionable. “You might be right on one thing,” I say. “There is something a broken neck might be worth.”
“What’s that?” she asks, eyeing me.
“What you said about the fox poo.”
In the gym, I can report a big milestone: this week, for the first time, I managed a sit-to-stand from my wheelchair to my Zimmer frame. I was laborious, wobbly and the Serena Williams sound effects were considerable, but I did it. It might not sound very spectacular, but it’s significant in physiotherapy terms. Standing like this, from what is a relatively low, bucketed seat to a frame that is effectively in front of your centre of gravity, is much harder than standing using parallel bars, when you can push with your arms behind you.
Potentially, it points to a new functional purpose in exercising. I should now, in theory, with months more practice, be able to use the frame in the house – standing up from my bed, for instance, and shuffling to the bathroom. All this comes with the usual caveat: given the slowness of my progress and my continuing lack of stamina, I expect to be an octogenarian before I walk the length of my home.
“And you, you stinky little dog,” I say, “will by that time thankfully be departed to the kennels in the sky.”
12-28-2011, 10:31 AM
If one is polite, one calls it spirit, or get-up-and-go. If one is more honest, it’s rashness. Months ago, I said I was going to buy myself a girl racer’s car, a Subaru Impreza, for Christmas, which was rather typical of the kind of outrageous goal I set myself in hospital. I played that game a lot, lying in bed, trying to build a new world without a body. The theory behind the bluster was simple: it helped the night to pass and if I eventually got halfway to the goal, I was doing well.
Top of the things to cross off my Christmas list, I am proud to say, is a car. There’s one in the pipeline. Sadly not of the racy variety, on the rather insurmountable grounds that Subaru doesn’t make them with automatic gearboxes any more. No, a far more modest VW Polo, fully adapted to hand controls, is due to arrive in the next couple of weeks. “Thank God she’s seen sense,” my close associates are heard to mutter. “Bor-ring,” I reply.
But there are other things to put on my fantasy festive list, to send glowing and sparking up the chimney. Here, in no particular order, are the things I’d love to receive from Father Christmas. And with all due apologies to the makers of luxury tat, cashmere underwear, high-heeled shoes, jewellery, handbags, silk cushions and scented candles, what I’m wishing for are the things you won’t necessarily find in the glossy Christmas gift specials in the magazines.
1. A bird table. A simple, rustic, freestanding one that I can have on the patio, not too high, and one I can reach to put food on myself. As a hungry novice, I have the binoculars and books at the ready; there is so much to learn.
2. A new left thumb with some grip/a left forefinger with some feeling. One or the other; I’m not greedy. Either gift would make life… oh, 50 times easier and quicker. Trouble is, I simply can’t find anywhere on the internet that sells such things.
3. A new design of catheter to prevent bladder infections. What is inside me, tormenting me at the moment, is an anachronism: it was designed 70-odd years ago and, because this is not a sexy subject, has been scandalously neglected by biotechnical advances. This is the real Cinderella of medicine. Urinary infections account for 40 per cent of all healthcare-associated infections worldwide, more than any other cause, and the catheter is the factor behind 80 per cent of these – quite apart from the scale of human misery this represents, it’s no exaggeration to say the situation is costing society billions. At least 10 per cent of the total NHS budget, if not more, goes on bladder-related infections. This money could be saved. A group of eminent retired urologists from around the world are working on innovative, state-of-the-art bladder drainage, but they need multi-disciplinary support from governments, bioengineers, catheter manufacturers and academic institutions. So come on, Coloplast. Come on, NHS innovators. Come on, the Chief Medical Officer. Contact Roger Feneley, one of the urologists mentioned above, who initiated the 21st Century Catheter Project. Let’s get working on this pishy subject once and for all. It’s holding me and thousands of others back.
4. A digital watch from a 99p shop. Who needs Longines or Patek Philippe? I want a child’s cheapie with a big display, nylon Velcro strap, easy buttons and a simple stopwatch function so I can time how long I can stand, using only my arms for support. Two minutes today; three tomorrow; four the day after.
5. A pair of buttocks like Rihanna’s. This request is rather like No 2 above, in that such things aren’t easy to source. I used to have some – well, not quite as good as hers, you understand – but they’ve disappeared. Gone. Empty space in my trousers. The remaining glute muscles, which are starting to work again, are so weak and spindly that I despair.
6. A secretary. Characteristic messiness, combined with clawed hands, has made my paperwork uncontrollable. But there’s a bit of conflict here. I know Dave would like a young woman, preferably Swedish, and ideally one of those hair-bunned, severe-specs types who would throw it all off and transmogrify into a sex goddess at 5.30pm; but I rather fancy a polite, house-trained, handsome young man with a first class honours degree in classics or literature. Difficult, because all these men already have jobs in McDonald’s.
7. The boys from the black stuff. To tarmac our farm track and prevent carers, nurses, etc, falling into potholes. (Message to one very dear former editor of mine, who came to visit in his precious, classic, 25-year-old 7 Series BMW: dear JS, I feel so bad about what happened. Your gearbox is in the post.)
8. A four-wheel drive wheelchair. So the dog will stop staring at me in that indignant, beady way, demanding I take her for a walk. Actually, dear Father Christmas, there’s conflict about this too. Dave and Dougie would like me to get a John Deere Gator or an Argocat or a Kawasaki Mule (it feels so good to baffle this magazine’s fashionistas with designer names they won’t recognise), but you’re not stupid, are you, Santa? You know this is purely because the boys want something new to play on.
9. A set of experimental exoskeleton robotic legs: Rex, Ekso, ReWalk. OK, I know this is veering towards the expensive end, six figures or so; and actually, dear Father Christmas, I could cut you a deal on this one. If you could guarantee to get me No 5, Rihanna’s bum, then I think I might just be able, by the end of next year, to walk as well without an exoskeleton as I would walk with one (going by what I’ve seen on YouTube). You see, this week I managed, on my feet, leaning on my waist-high frame, to navigate out of my gym and onto my new runway of smooth rubber matting, and I staggered about five metres, sat down for a rest, then shuffled back. A bit of a triumph, it was.
10. A new riding hat. But sssh. To find out why, you’ll have to wait until nearer Christmas.
12-28-2011, 10:36 AM
Big excitement this week: my new car has been delivered to the specialist who will adapt it for manual controls. Like it’s a wedding dress, I am to go for a preliminary “fitting”. We pull up at his garage and there it sits, a shiny, silver (I could have any colour as long as it was silver, otherwise I’d have had to wait until March) VW Polo with what looks like a stubby silver ski box on top, almost the same size as the car. The whole outfit is as tall as it is long. A cube on wheels. It resembles the mobile home of a family of optimistic midgets.
The rooftop box, in fact, is a wheelchair hoist which, God and cack hands willing, will allow me total independence. The idea is simple but brilliant: I slide from wheelchair to driver seat; press a remote control; the box above extends automatically over the driver’s door and down comes a hook on a wire. I then fold up my wheelchair (more on this later), slide the hook under the seat, press another button and watch the hoist lift the chair, stow it sideways into the roof box, and slide shut. When you get to the other end, the process is reversed: thereby, in theory, allowing someone in a wheelchair the ability to drive themselves anywhere and get out at the other end on their own. ON THEIR OWN. Savour those words.
More immediately pressing, however, is the matter of getting the car controls organised. The doors are massive and I can get into the seat easily enough, although my legs are doing their made-of-yew imitation. The seat height I am able to adjust manually. They’ve already fitted a special lever on the handbrake so I can deploy and release the button; the automatic gear lever will soon be customised likewise. The accelerator and brake hand controls are yet to be fitted. I lean back and survey my dashboard, not with pleasure, not inhaling eau de new car with the heady satisfaction of fun to come as one normally does, but as another grim challenge to meet.
“Switch the engine on,” says Paul Lough, the boss, he of infinite patience and ability to answer the same questions over and again of drivers suddenly bereft of the tools to drive.
I turn the key halfway, the dash lights come on; all I have to do is turn it another notch. Suffice to say I’m feeling cocky: my right hand is the strong one; of course I can do this. Paul leans in and deploys the brake (as you must do to start it); all I need to do is turn the key. Doddle or what?
Except it isn’t. Except I can’t. It won’t turn. My palm can’t grip the fob firmly enough. My clawed knuckles jam against the dash when I try to use my wrist to help. I feel a sudden rush of disbelief, then anger and frustration. It’s just a bloody car ignition. And yet I am less able to start the engine than a neglected toddler running rampant while her mother is in the supermarket. My right hand, which I have convinced myself is not too far off functional, which I depend on totally for whatever normal life I can grasp, is in reality too twisted and scrawny with nerve deficit even to turn a key in the ignition.
Of all the countless other things I can’t do, somehow, suddenly, this is symbolically heavier than anything. The wheels just came off my wagon of dreams. No engine. No escape. “Bastard,” I mutter at the steering column; and then apologise to the poor bloke who’s just trying to do his best for me.
“It is quite a distinct turn,” Paul says gently. “It needs a bit of strength.” He twists the key; the engine fires. Dave tries it; he finds it easy too. I watch their hands reach into the car in front of me, effortless, subtle, co-ordinated. Ordinary limbs doing ordinary things. I feel utterly deflated. Suddenly this isn’t about bad choices, about my failure to buy a Renault which would start if my car keys were in my pocket; this is a landmark for some bigger helplessness.
“Don’t worry,” Paul says. “I’ll try to improvise a right-angled extension of the key fob. Failing that, we can fit a push button start. It’s not a problem.”
Earlier in the day, the extent to which the NHS featherbeds every one of us from true costs was brought home to me. In order to use my roofbox, I will need a folding wheelchair. My NHS chair, which I am aware is a good one but have no idea of its value, is a rigid frame. So I must go shopping – resentfully, because all this palaver, I vow, is temporary. One day I will walk to a car and step out the other end.
But I have to live in the present and be patient. Rows of wheelchairs sit in the showroom; it’s like a poignant version of a bike shop. The children’s chairs break your heart. The assistant brings me four different makes to try: in every case I mimic leaning out of the car and folding the chair up. It’s like being in a clothes shop and trying on dresses across the price spectrum: there’s the sublime inevitability that the best one will have the extra zero in the price tag.
The cheapies are maddening: heavy, stiff things which will not fold for me. The last one I try is an Otto Bock. “It’s the Audi of wheelchairs,” warns our adviser. This one, wouldn’t you guess, is beautifully engineered and I can manage it easily with one arm. Naturally, it is as overpriced as an Audi: £2,000-plus by the time you include the gel cushion.
Later that night, out of curiosity, I check the price of my NHS Kuschall wheelchair: horrifyingly, it’s in the same bracket. Guilt gnaws at me. Dear NHS, I had no idea. I’m glad I’m still paying lots of taxes and I will never, ever take you for granted again.
12-28-2011, 10:39 AM
The hoist tightens round my thighs and ribcage and scoops me gently into midair. Both body and mind have entered a kind of private Ice Age; I reckon it’s quite a while since I stopped breathing. Below me, impossibly insecure and narrow, is the back of a horse. They’re lowering me now, I’m in the saddle and the helpers are gently stretching my legs down Nelly’s sides. The mare is relaxed, uninterested; just a normal day in the office for her. The hoist is removed and I’m miles high, it seems, perching unsupported but for my hands wedged in a strap in front of me. “Breathe,” advises Sara Smith, my mentor at the Riding for the Disabled Association (RDA). She’s grinning at me. “It helps if you breathe.”
You know that kind of weird, detached sensation you sometimes get, as if you’re an observer instead of a participant in your own life? As if things are happening to someone else, not to you? That’s how it feels. I can’t quite believe what I’m doing; can’t decide if I’m crazy or brave or a bit of both. Twenty months after my catastrophic riding accident, in which I broke my neck and back and was left paralysed from the armpits down, I’m back in the saddle.
This article is an attempt at a review, an appraisal of the year in which I left hospital and returned to real life. This time last December, I was still in the spinal unit; exhausted; an empty husk, burnt out by the challenge of trying so hard in the gym and by the demands not just of my column but of things I had agreed to do for worthy causes. My doctors, allowing me to go home for Christmas, ordered me to stop writing and start focusing on myself. At that point my rehabilitation was stuck: I could stand, but only just, from a raised position, and only with my knees blocked in front to stop me collapsing forward; try as I might, my legs did nothing more than that, and I felt the chill of my discharge date whistling down the corridor. I feared my days of recovery were coming to an end.
How far, then, I have come. These days, as I clamber, still laboriously but with increasing confidence, from my wheelchair to a waist-high Zimmer, and then shuffle several metres across the floor of the barn, I should maybe start to appreciate what I have achieved. My abdomen muscles are still improving; I have tiny, patchy returns of skin sensation around my hips and ribs. When I lift both hands to the keyboard, for the occasional attempt at two-fingered typing, I no longer flop forward and head-butt the desk. Had you promised me this a year ago, I would not have believed you.
So being asked to look back is a rewarding exercise. It forces me to have a perspective on the progress that I find so agonisingly slow, day to day, week to week. I need to do this, to silence some of the doubt that whispers continually. Despite my best efforts to live in the moment, and block out corrosive fears for tomorrow, I still hear a chill wind whistling, and this one is more ominous, less controllable. Tempus fugit, it warns me. The window of neurological improvement may not last much longer; there will come a point when the nerves cease to regrow and reconnect. Nobody can predict when recovery stops, and I’ve already been blessed by more time than many people. If most experts agree things tail off after 18-24 months post-accident, then all I can do is ignore received wisdom and continue to be as positive and stubborn as I can.
Going home for good, early this year, was fairly seismic: the loss of the umbilical cord to the spinal unit; the nurses, the physiotherapists: those whom one relied on to be there on call. Isolation was a new experience for me. Suddenly I was back in a familiar place, my own house, but the landscape had irrevocably shifted; and I was trying to build an entirely different kind of life with a whole new set of largely absent helpers. My district nurse and council carers are wonderful, but they aren’t a few yards away at the end of a buzzer; they’re several miles away with a zillion other responsibilities and limited time. If I have a crisis, I can’t just bleat: I have to deal with it.
My community rehab team, likewise, were by necessity rationed. From three hours of organised physio a day, I was down to one hour a week. My hospital hand therapist, who had devoted an hour a day to straightening and exercising my damaged fingers, did not have an equivalent in the community. My local occupational therapist set me goals, provided me with various aids and gave me a lesson, then left me to it; I no longer had an OT on call.
Rehabilitation was clearly my responsibility. The only person who could drive me was me. My motivation, as always, was my family: to make them happy and become less of a burden. My husband and son had lives of their own; I could not allow any more sacrifice than they had already made. So I created a new set of goals for myself, all of them springing from my desire not to be dependent on anyone.
First, I was going to learn how to put myself to bed at night. That would give me vital confidence about being alone and would free up Dave and Dougie. Second, I would manage my own paralysed bowels and avoid being dependent on my district nurse to visit – much as I love her, too. Third, I was going to learn to drive and get a car. Fourth, I would see if it was possible to get back on a horse. Fifth, I was going to become so independent at showering and dressing that I wouldn’t need carers any more. And sixth, I was going to practise walking to the point where I could stagger around the house on a Zimmer.
Suffice to say I’ve achieved one, two, three and four. Five and six still elude me and I can’t guarantee what their outcome will be, though I’m maybe 60 per cent of the way there. My apologies if all this goal chat makes me sound like some tedious management type. I’m not. I’m far too anarchic and disorganised for that. I’ve never in fact written these things down until now. Instead, I carried them in my head, fierce aspirations that spurred me on when I felt weak and tearful. Which was frequently.
When one goes from being an active participant to an observer in one’s own life, things have to change. When it takes ten times longer to make a cup of coffee than it used to, or two hours to get up in the morning, you become slightly detached, bypassed by normal events. The act of living simply takes up the day. I don’t know if my view of the world has changed, but I have developed an acute sense of what no longer matters. I am more tolerant of vulnerable people and have much less energy for the thoughtless and selfish. My husband thinks I am a more positive person than I was before, which just goes to show I’m not such a bad actress after all.
I’m bitter about only one thing: that my rehabilitation is being hampered by repeated bladder infections, something that modern medicine seems unable or unwilling to tackle. Certainly they don’t tell you about this in hospital. Two good friends from my time in the spinal unit are also being crippled by continual infection. The pattern is established: we finish a course of antibiotics, but a week later are dragged down by another bug. Increasingly gloomy e-mails fly between us. I was back in hospital recently having a cystoscopy – an examination of my bladder with a camera; conveyor belt stuff, like inseminating cows – which almost descended into farce. Protocol questions. “Do you have discomfort when you urinate?” “No, because my bladder is paralysed.” Then the classic: “Sorry,” they said, “you’ve got an infection; we can’t do the procedure.” I confess the red mist came over me at that point: I raised myself up, eyes blazing, and hissed: “That’s precisely why I’m here! That’s the whole point! I’m not leaving without one!”
The nurse who did the cystoscopy was very pleasant – “Your bladder looks fine,” she said. “Nothing nasty there” – but gave me not a single answer to my questions that I hadn’t heard before. Drink more bloody water. Take cranberry juice. La-la-la-la-la-la. In the States, I’ve discovered there’s an underground movement among desperate members of the spinal community who flush out their bladders with a veterinary wound wash – apparently it works wonders. Apart from growing a tail and fur. Until I’m desperate enough to try that, I continue living life with the handbrake hard on, fighting the spasms and weakness the bugs bring. I try not to think about how much further forward my progress in the gym would be if I could only get free of infection.
I’ve learnt stuff over the past year. Odd stuff. Clothes, for example. When you’re paralysed, clothes wear you; you don’t wear them. You put on things that once looked so nice but because they can’t hang they distort around you, the seams twisting you into that classic dressed-by-carer look. And one has a finite amount of energy, which must be used wisely. I could put on my own shoes in the morning but it would take until lunchtime and I would be exhausted. Far better to get help and save the time and energy for the gym.
The third thing I’ve learnt is that having too much time to think is not good. Analysis leads to despair; what I need is to be as active and as busy as possible. Hence the daily gym; hence the need for mind wipers where I can find them. And horse riding, of course, is one of the ultimate mind wipers, because one is so busy relating to the animal that one forgets about anything except the here and now.
All of which is a roundabout way of explaining why Melly is riding Nelly. Post accident, a lot of people assumed I’d never want to go near a horse again: that it would be too upsetting, if not for me then for my family; that it was also too dangerous, if indeed it was physically possible (and that didn’t look likely in the early stages). Why, the rational person is entitled to ask, would anyone whose life had been ruined by a large, unpredictable animal ever want to go within a mile of one again?
And I accepted all that. Indeed, I probably agreed in the beginning. Everything was too upsetting back then: I couldn’t even listen to music, any kind of music, without dissolving into tears. On an early visit home I asked to see my dressage saddle – one of my most treasured possessions – and became distraught with grief. Then, as I recovered a bit from the psychological trauma and realised I had a fight on my hands, that some recovery was possible, I decided to turn the emotionally loaded horse question into a personal physical goal. I wanted to have a choice about whether I rode again. That way, it became part of my overall physical challenge: not just to get on my feet again, but to see if I would ever become strong enough to hold myself upright in the saddle and stay on board. Even if I only got on a horse once, it would be a pretty strong symbol of defiance. Up yours, fate.
But only when I had the choice would I choose. This autumn, when I felt I might be strong enough to sit in the saddle, unsupported, I replied to Ed Bracher, the chief executive of the RDA. For a year I had been hoarding his generous, handwritten letter to me, in which he hesitantly suggested that should I ever want to ride again, his charity would try to accommodate me. Heart in mouth, I wrote an e-mail telling him that, if waiting lists allowed, I would love to see if I was able. My stomach lurched as I paused before hitting “send”. My husband rolled his eyes and shook his head when I told him; then backed me 100 per cent. My son was so supportive he wanted to skip lectures to come and watch. “Absolutely no way,” I cried. “Go to lectures.” And other people? Well, I don’t care what they think.
Thus, last month, I found myself being lowered onto Nelly, a wise, special, multitalented 12-year-old 16.1 hands-high bay mare. Nothing bothers Nelly: she does dressage; she’s a vaulting horse; she puts up with tense, helpless lumps like me teetering on her back without taking one false step. She even, for the purposes of the photographs you see here, stood under huge scary umbrellas containing electronic flashes. She snorted the first time and her skin flinched when the lights flashed; otherwise, heroically, she didn’t move a muscle.
By the time you read this, I will have been back to the RDA in Bannockburn, Stirling, three times. How did I feel the first time? Terrified. Terrified, bizarrely, not of falling off, or hurting myself – I am cavalier about that – but of failure. What if I couldn’t balance? What if I made a fool of myself and wasted everyone’s time? But even in that first brief taster, the feel was enticing: the sway of my body with the horse as she walked; the sense of connection and rhythm. I was a sack of potatoes by able-bodied riders’ standards but I could, to my delight, hold myself upright and balance. My “side-walkers” did not have to grab me to stop me toppling, although Tanya, my friend at my right knee, looked faintly pale with anxiety.
The second time I went was so much better. My legs relaxed and I breathed. I got a taste of how much good Nelly’s movement could do in terms of my rehabilitation. The mind wiping was authentic – there were brief snatches during the session when I was concentrating so hard I forgot I was paralysed. Sara, the manager of the centre, a woman possessed of a special serenity, smiled at my improvement and said simply: “Muscle memory is an amazing thing.” She’s seen it all before. She thinks my next goal should be to get on the horse without the hoist. I fancy it should be holding the reins. Tanya, meanwhile, reckons the London Paralympics dressage may be a little too close for me, but wants to groom for me at Rio de Janeiro in 2016.
Joking apart, every member of the 2012 medal-tipped UK equestrian Paralympic team has a connection with the charity. The RDA is one of those quietly magnificent organisations, catering for people with needs right across the physical and emotional spectrum – riders, carriage drivers, troubled teenagers, children with everything from autism to cerebral palsy.
I’m profoundly grateful to Sara and her staff for giving me the chance to face a few demons; to seek a little more redemption. Emotionally, I still haven’t quite processed the experience of being on a horse again. My brain is still boiling, as unhealed as the body. But maybe I should just take my lead from dear, relaxed Nelly; maybe that’s the secret. Don’t fret. Don’t analyse. Accept. Live deeply in the now, don’t think about anything further in the future than a good haynet. Therein, perhaps, lies peace and a greater wisdom.
To donate to the Riding for the Disabled Association, go to bannockburnrda.org.uk
12-28-2011, 10:41 AM
There are no “maybes” about this. I’m feeling quite assertive. Seeing that it is Christmas Eve, I really want to bring you gifts of good news and contentment from my shrunken little world. I have no part in the Government’s happiness agenda; I can’t heighten the recent cheering statistics showing that most people, after all, are a darn sight happier than the cynics would have them. All I can say is that things are a whole lot better than they might be for me.
Two days ago, for the first time, I managed to shuffle the length of our living room with the aid of a Zimmer. I stood up from my wheelchair by the bookcases and my wobbly, irregular steps – directed by my eyes, willing where my feet should go – carried me all the way along the room to the top of the ramp leading into the kitchen. It is a long room and it is the furthest I have ever travelled in one go. No splints, no raised seats to help me stand – just up and keep moving.
Of course it’s not walking as normal people would recognise it; it’s not yet functional, but it fuels the slow burn of hope in my heart. “Now that’s a breakthrough,” said Dave, beaming from ear to ear, as he brought the wheelchair up behind me and then leant over to hug me.
I’m going to tell you, too, that I can now ride a horse balancing just on my seat bones – hands up off the saddle, holding the reins. In my last session, although I wasn’t aware of it until afterwards, the Riding for the Disabled staff had quietly disconnected the leading rein to the horse’s head, so that in effect the only person in control of the mare was me. Nobody leading her, just two people walking alongside, to catch me should I wobble, or should the horse do anything sudden. (But of course she doesn’t, because she’s Nelly and Nelly is a star.)
Unbeknown to me, I rode her twice around the indoor school in this independent fashion; the feeling of exhilaration, when they told me what I’d achieved, was overwhelming. Suddenly, riding has started to feel like it used to: studying my position in the big mirror on the wall; trying to lift my upper body; to keep my shoulders back; to point – if you’ll excuse the vulgarity beloved of riding instructors – my tits at the horse’s ears. In the mirror, there was just me on a horse, striving for self-carriage and lightness, as in the old days. And again, fleetingly, I didn’t feel paralysed any more.
For my long-suffering husband, watching from the gallery, it was poignant. “It was just like seeing the old you riding at home,” was all he said. But if relationships work, at their deepest level, it is by generosity. He was delighted to see me so thrilled. Happiness is the result of trying to make someone else happy. The joy of giving, not taking. And you know what? Suddenly, gloriously, there is nothing corny in stating that.
Isn’t this where, remarkably, wider society finds itself right now? Consider the success of the John Lewis television ad starring Alfie, the little boy who longs for Christmas morning: not because he’s a greedy so-and-so expecting ten Xboxes and a new bike, but because he’s desperate, just desperate, to give his mother and father their present. The quiet genius of that ad is in capturing the public mood; the yearning for old-fashioned love; the knowledge that there are more important things than possessions in the world. Suddenly all other adverts, the noisy, the glossy, the party-party extravaganzas, look a little tatty and vulgar.
The wellbeing figures from the Office of National Statistics earlier this month can be seen to reflect the same kind of public mood. In terms of “life satisfaction”, the average scored was 7.4 out of 10, which some commentators found counter-intuitive in a world of declining wealth and opportunity. Which just goes to show how out of touch such voices can be, for they have fallen for the myth that says the perpetual growth of income is the sole measure of national happiness. The inconvenient truth that free-marketeers and trade unions alike seek to ignore is that happiness is only loosely linked to wealth and possessions. Instead, in an act of glorious subversion against global markets, ordinary people are rediscovering the positive joys of family and loved ones. This is something that goes beyond politics and it’s extraordinarily healthy. (Though that is not to exclude the comedy that politics can bring: even North Korea has a happiness index, which found its people to be the second happiest in the world, while America was ranked last.) So whisper it this Christmas Eve; laugh in the face of the frantic inducements of the retailers: there are life and profound riches beyond GDP. On this, David Cameron has quoted the late Robert Kennedy, who said GDP measured everything “except that which makes life worthwhile”.
We can choose to find happiness, therefore, whatever our circumstances. Most people, noted Abraham Lincoln drily, are indeed as happy as they choose to be. I suppose, by the nature of what has happened to me, I have a ringside seat in this debate. The misery of paralysis could have washed away my family; could have destroyed me. Together, inspiring each other, we chose a different route.
“Are you happy?” I asked Dave as he drove me home from my riding lesson. Little doubt about whether I was: I was grinning like a Cheshire cat, wriggling my hips and legs on the car seat, convinced they were feeling looser. “I’m content,” he said. “Contentment is how you feel when you’re doing nothing; happiness is what you feel when you’re doing something, like taking the first sip of a pint.”
To all cynics, politicians, statisticians, eurozone traders, ordinary people and especially my readers, I wish both contentment and happiness this Christmas. Thank you for your good wishes, prayers and support and may you have a lovely, peaceful time.
12-28-2011, 12:39 PM
Thanks for posting these.
12-28-2011, 02:07 PM
Many thanks for sticking these up F.P.F, well worth reading as always.
12-29-2011, 11:48 AM
Many, many thanks, FPF!
12-29-2011, 12:42 PM
What an enjoyable read.
Thank you for posting FPF.
12-29-2011, 05:54 PM
12-30-2011, 10:26 AM
Sniffle, sniffle xx
As usual she eloquently, exactly, poignantly describes paralysis life so well. I wish these would be collected together in a book.
12-31-2011, 10:29 AM
Last one of 2011. Happy New Year ladies and gentleman!
Until very recently, there was a dying albatross draped around my neck. Its fishy breath, increasingly shallow, ruffled my hair; its wings stirred mournfully against my shoulders; I knew it was going to expire if I didn’t do something quickly; and I knew that if it died I was in real trouble. God save thee, ancient Mariner/ From the fiends, that plague thee thus!/ Why look’st thou so?
And yes of course, I know this is a rather extreme reaction to one’s tax returns, but it’s genuinely what it felt like. The accountant needed the stuff; she needed it fast. My husband, for whom paperwork is akin to anthrax, developed a peculiar facial twitch whenever I asked him where his P60 was. “That’s why I married you – so I’d never have to answer a question like that again,” he said plaintively.
It was down to me, before the year’s end, to riffle through trays piled with 18 months’ mail, to find our respective bank statements and our tax notifications and his moth-eaten diesel receipts. I put it off and put it off. The days darkened, not just because it was December, but because the piles of paper requiring to be sorted blocked off the light from the windows; all the while the albatross grew heavier and sicklier on my back. Jarndyce and Jarndyce had nothing on me.
The problem was, I couldn’t do it. Physically. My hands are incapable of lifting more than a couple of bits of paper at a time; my ability to pick up a file and shuffle ruthlessly through its contents is gone. Imagine, if you can, trying to do a job as a high-pressure PA wearing a pair of extra-thick skiing mitts. That’s my plight. It takes me all my time to open an envelope (although I’ve got better since a kindly Times reader sent me a Reader’s Digest-style plastic gadget with a razor embedded in one corner).
Anyway, HMRC’s inspectors will be glad to know that, after two utterly torturous days and a few tears, I eventually managed to get it all together for them; assuaging the accountant and allowing the albatross to recover enough to head out to sea again. Until next year.
I write about this not because I think I deserve a rebate for the effort involved, but because among the scraps at the bottom of one wire tray I chanced across a startling declaration, written in my B.A. (Before Accident) handwriting, which I read with a sense of… not bitterness, perhaps, as much as profound poignancy at the cruelty and the randomness of life. And then sat in silence for a very long time, staring out of the window with unseeing eyes.
Two years ago, at the beginning of 2010, I went to a bootcamp, Apples & Pears. It was a very good experience. What started out as a bit of fun with a couple of friends became a real physical wake-up. At the end of the week, leaner and fitter and aware there was a lot more in us than we thought there was, we were asked to jot down a personal goal or two for the rest of the year. And here, in my hand, was that very bit of paper.
“Lose two stone and become a better rider and compete in more British Eventing competitions,” I had written in bullet points.
“Do this by the summer – just six months.“Think euphoria, excitement, confidence, connection. See myself coming through the finish – focused, adventurous, thin. In best boots.” (A reference to my gorgeous bespoke riding boots, which I hadn’t been able to fit into since I took up running 10ks and developed calf muscles like a prop forward.)
“YES. This outcome is just for me. “I did it! I CAN do it. I look good! I am not a spectator!” The last sentence underlined.
All of which would be woefully cheesy if it weren’t so tragic, because of course it was only a few weeks later, while on a training session for the new eventing season, that I had my fall. It wasn’t a big jump – I competed at entry level – but I committed and threw my heart over it, focused, adventurous, confident, just as I’d vowed, just as I had been doing for 30-odd years, only this time my horse refused at the last minute. I hadn’t warmed him up properly. I had chosen to ignore the signs that he wasn’t keen. And I was not an instinctive enough rider either to anticipate the refusal or to stay in the saddle. A little too old; a little too heavy.
Oh, how hollow rings that final bullet point now: “I am not a spectator.” Oh no. Now you could say I’m a spectacular spectator; now I spectate on the spectators; now, on my blackest days, I’m a non-participant in almost everything for the rest of my life.
I addressed myself sternly. If rather darkly. “Well, Reid, at least you managed to lose the weight.”
The irony is that I still believe in dreams; in setting personal goals and making soaring new year resolutions. I still believe people should follow their passions; should take risks; should live life to the full. If you are permanently fearful of the bad things that might occur, you are more crippled than I am now; you are wasting your life. Accidents happen; that’s why they’re called accidents. Only micro-millimetres and split seconds decide whether something is a minor crash, soon forgotten, or a life-changing catastrophe. I could have broken my neck in a car accident or tripping over a coffee table. Were time travel possible, and were I back sitting with my friends in January 2010, writing down corny stuff to motivate myself, I’d say much the same as last time. Though I’d certainly be wise enough to choose dressage over jumping.
Goals for 2012, then? To continue to be crazily defiant. To walk the length of my house. To do a dressage test on horseback (just walking, no trotting). To start travelling again. I did it once. I can do it again. Repeat: I am not a spectator!
01-02-2012, 07:54 AM
Thank you again FPF. I have loved reading every one of Melanie's articles, she so eloquently describes her life and journey with SCI.
We are so fortunate that you are reproducing Melanie's column for CC forum, I would not miss reading each new posting of her life and journey. I love her.
03-27-2012, 04:37 PM
Dare I ask? Any more?
04-07-2012, 12:26 PM
Guys, Im so sorry I havent posted the last few. Maybe I need a PA ;)
Here they come:
04-07-2012, 12:28 PM
Yay! thanks FPF!
04-07-2012, 12:29 PM
Let me take you by the arm and rescue you from sofa slothdom. I want you to come for a walk with me. It’s a big walk; in fact, it’s going to be the walk of your life. You’re going to start at sea level, in the chill of the very early morning, shivering with anticipation and self-doubt – can I actually manage this? Is it too late to duck out? – and you’re destined for that great mountain range looming in the distance. Ahead of you lies what’s almost certainly the biggest physical challenge you’ve ever faced.
Around you is a crowd of fellow competitors, either silent, tight-faced with tension, or blabbing inconsequentially. There’s nothing like nerves for making folk gibber.
It’s like the start of the London Marathon: all of human life is there; people are all sorts of shapes and ages and sizes. Burly young men with soft midriffs, better used to running desks; lean, hungry investment bankers; wiry pensioners; fashionable women whose training has been exclusively on a treadmill. Some with the highest-spec clothing; others in Regatta’s best. Midge repellent and the whiff of raw competitiveness mingle in your nostrils.
Then the gun goes and you’re off, ducking and diving with nervous energy in those initial few hundred metres, jostling to find both your own personal space and rhythm. Away in the front, some possessed of unnatural powers are running. The majority, ordinary mortals, walk. Before half a mile has gone you will be strung out along the path in ones and twos; the collective chatter of the walking poles will have died down; you will be settling into your own stride; and, more, importantly, your own head. The head, you’re going to realise over the next 24 hours, is what’s going to get you home.
Recent years have seen a boom in the phenomenon of charity endurance events, born I suppose of affluence and of the gym generation. Our parents wouldn’t have dreamt of getting sponsorship to enter a 10k run or a gruelling mountain marathon walk; they just went for strolls in the countryside. My father never even took off his tie. Then emerged a society that worshipped at the shrine of its own body; liked its exercise seriously organised and sought increasingly silly ways to be tested. If exercise became a religion from the Nineties onwards, then we wanted a Way of St James, the medieval pilgrimage that started anywhere and converged at Santiago de Compostela in northern Spain, decades later. All in order to earn an “indulgence” – not, then, Gatorade, but a technical remission from sins.
These days the sins are more modern than they once were, perhaps, and the Caledonian Challenge doesn’t last 20 years, although there will be times when it feels like it does. The challenge is for teams of four to six to hike 54 miles in 24 hours, in the course of climbing the equivalent of two Ben Nevises. Without sleep, of course. Lesser options – for wimps – are to run an off-road marathon in 6 hours or walk 26 miles in 12 hours.
The route follows the UK’s most outrageously dramatic long-distance footpath, the West Highland Way. It starts to the north of Fort William and leads you through Glen Nevis, over the Devil’s Staircase into Glencoe, then across Rannoch Moor, one of the last great wildernesses in Europe. The mountains are high, the weather unpredictable and the scenery game-changing. Vultures wait to pick your bones if you fall by the wayside.
The concept of adventure challenge for charitable purposes was the brainchild of David Fox-Pitt, who inaugurated the Caledonian Challenge 15 years ago. In the early days State Street, the Boston-based investment bank, sponsored it and more than 70 per cent of entries were from the corporate sector. Financial thrusters still make up the bulk of entries. Over the piece, more than 14,000 people have taken part and raised more than £11 million.
Why do people do it? Predominantly for selfish reasons. Self-discovery. Vanity. Arrogance. To achieve physical and spiritual glory through exhaustion. To be able to boast about blisters. But also because this walk is about big people giving to the little people. Although competitors can now raise money partly for their charity of choice, most of the funds go to the Scottish Community Foundation, which, like Comic Relief, helps in countless small ways – a minibus to transport cancer patients from remote places, grants for apprenticeships. If that doesn’t help win a remission for sins, I don’t know what does.
I did the walk in 2008 – because my editor in Scotland dared me to – and I’m proud to be the patron of this year’s event on June 16/17. There are rivals now, but the Challenge is still the big daddy of charity trials, fairly crazy and hardcore. Certainly it was the toughest thing I’d faced before spinal injury… but I look back and I’m so glad I did it. In fact, it means more now, because I tested my body while it still worked. Now, instead of 54 miles in 24 hours, my equivalent pilgrimage will last a lifetime; or at the very least 54 steps in 24 months.
Why should you do it? Because you can. That is the message for anyone who is reading this column, feeling January-sluggish and seeking inspiration for getting fit. Don’t waste what you have. Because, take it from me, you can lose everything in the blink of an eye. Your body is an amazing, beautiful, irreplaceable thing. Please don’t take it for granted. Use it.
So I want you to come for a walk with me. No, I want you to go for a walk for me. Because I can’t. But you can. You’ve got six months to get fit. You can escape with a team of mates and climb mighty trails and experience stuff you’ll never have known before: fun, pain, self-belief, achingly beautiful scenery, the semi-hallucinatory journey by head torch through the dark. Most memorable of all, alone in the mountains, you will literally walk into the dawn, stepping across that mysterious gap between night and day; in a place where the divide between the real and the spirit world is thinnest. You’ll never forget it.
04-07-2012, 12:31 PM
What I really need, I’ve decided, as well as my dedicated medical team, are the diagnostic skills of a vet and the forensic qualities of a detective. Lots of vets I know maintain (they would, wouldn’t they) that they have to be more skilled than doctors because animals can’t tell them where it hurts. A gerbil doesn’t report hidden lumps; a labrador can’t confess it ate a football; a sick sheep, born determined to die, as every sheep is, will never give away clues which might delay its arrival at the pearly gates. A vet’s only advantage is that if they fail in their quest, they can just shoot the patient. Well, not the gerbil. Or the labrador. They’d get injected. But you know what I mean.
The frustrating thing about spinal injuries is that in the absence of normal sensation, so much diagnosis is reliant on experience and informed guesswork. For some weeks now, my legs and hands have been in revolt, going into severe spasm at the slightest excuse. Because of the nature of my injury, the two are connected neurologically. The legs are so rigid my carers can hardly bend them; the fingers so clenched I can no longer fit them into the splints I wear at night. In the morning, my hands are so sore and bent it frankly terrifies me.
And forgive me the moan, but I’m so stiff my rehabilitation has halted, and to add insult to injury I’m unable to fold my legs into my new car, which sits, useless, taunting me, outside the house. It is a tad irritating. To put it mildly.
Plainly – hopefully – these are general symptoms of some specific underlying problem. (I can’t bear to contemplate the possibility it’s down to permanent, negative neurological changes.) My body is apparently reacting strongly to some painful stimulus, but because I only feel things in the vaguest terms, I don’t know what it is or where it’s coming from. Spinal units have a checklist – bladder, bowels, skin lesions, bruises, ingrowing toenails, sprains, breaks. All these can cause this kind of symptom. It’s a process of elimination.
Funnily enough, the most positive e-mails I get are from spinal cord injured people who say they have, over time, made it their business to know their body better than any medical staff. As one long-term spinal injured woman advised me, professionals can help to a certain point, but otherwise we are on our own. “It took me a long time to realise that, especially in regard to the day-to-day aspects of living with this condition. There is a clinical v real-life dissonance: which is to say, conventional healthcare can keep us alive, but our quality of life is largely up to our own initiative.”
It is an interesting debate, but I’m only in my second year at primary school, not yet a rebellious sixth-former. I am not familiar with this weird new body of mine, so I rely on my teachers. My doctor at the spinal unit calls me for thorough investigation. We can eliminate some stuff quickly. Skin is fine. For once, the bladder is likewise. No apparent breaks or sprains. My right toenail, designated by the podiatrist as ingrowing, although I was unaware of a problem pre-accident, is ruled unlikely.
Then an abdominal X-ray shows partial blockages high up in my intestines. We each possess around 25 to 28ft of guts, did you know that? Disturbing thought, isn’t it? Paralysis, and being in a seated position most of the time, apparently makes these great gloopy essential coils… well, lackadaisical. Like contraflow traffic on the motorway. Randomly, I am reminded of a horse with grumbling colic. And the fashion Princess Diana set for colonic irrigation.
The solution for me was rather less stylish. Drain cleaner. Laxido. As Dave says, they’d be hardly likely to call it Laxidon’t. Suffice to say, I’ve been taking the bloody stuff since before Christmas and have no intention of describing the hell it has inflicted on me. But the symptoms have not diminished.
The plot then gets confused. Going to bed one night last week, I noticed my right calf was hugely swollen. Hot, tight, shiny, four and a half centimetres bigger than my left. Now my right leg is the deep vein thrombosis one; it’s the sad, sluggish, sloth-like limb which holds me back, obviously because of neurological damage but also – maybe – partly as a result of last year’s big clot. I know not.
Anyway, for once I got scared. I decided I really didn’t want to die of an embolism, and phoned NHS24. For a much-criticised organisation, I have to say the response was terrific; a doctor waded through one of the stormiest nights to give me an anticoagulant injection. One of those peculiar 3.30am conversations you have with a total stranger in your bedroom ensued. Me: “I’m really sorry to bother you.” Him: “No bother – it makes a nice change from people with a sore throat.”
There followed two days in my swanky new local hospital in Larbert, near Falkirk, where the most exciting thing that happened was that the wind whipped my blue badge parking permit out of the car and into the dark never-never. Luck? Who needs it? My leg was scanned. The diagnosis was inconclusive; the circulation in my leg is “chronic”. They can’t tell if I’ve had another DVT or not; therefore they must treat me as if I have. I am now injecting myself with daily anticoagulants; then I restart the warfarin, possibly for life, and because every action has a consequence, I have to stop taking ibuprofen. And what if it was just oedema, not a DVT?
And still the debilitating spasms and stiffness persist. Everyone is doing everything they can. But I feel like screaming: please just let me be well enough to start standing and walking again. Please just let me know what’s wrong. Send for Sherlock Holmes. Give me a clue on the plot. Or load a gun for the vet.
04-07-2012, 12:32 PM
There comes a point, in everyone’s life where you just have to say, “Right, enough. Victimhood stinks. I’m not going to sit and take any more of this.” It’s been a rotten few weeks: power cuts, hurricanes, infuriating and invasive secondary health problems. Plus, a dog that refuses to go outside if it’s raining. Which it is, all the time.
So enough of being passive. I have to get moving. Stay rational. For weeks now, outside the house has sat a little silver car carrying only its delivery mileage, taunting me. But I haven’t driven it. Because... No becauses. I’ve made a million excuses and none of them is valid. Even my new driving licence had arrived. “Take your mind off things. Just get in the damn car and go practise,” said an exasperated Sir Alex Ferguson, aka my husband. “I know your legs are too stiff for you to lift them in yourself, but I’ll help you. You’ve got to get started.”
I’m lucky, I suppose, that we have somewhere I can do my worst before venturing onto the Queen’s highway. Up and down our long farm track, dodging the potholes and the remnants of newly fallen trees. Dave came with me the first time, heroically patient because the car had kangaroo petrol in it: surging and slowing abruptly as my fingers tried to work the accelerator and steer at the same time. The dog trotted in front, and it will give you some idea of the speed I was going if I say that she had to keep stopping and looking back. I used to run down this track about three times as fast. When I was at my least fit.
After one return trip, understandably, my passenger left me because he had an urgent need to watch some paint dry; the dog went inside to watch Come Dine with Me; and off I went by myself. Hard to describe how momentous it was; how isolated and yet how liberated I felt as I drove away on my own: the new me, alone and mobile for the first time – in charge of my own destiny for a brief half an hour or so. Even just guddling around on a deserted farm lane. The stage empty but for me. It reminded me of the first time I found myself completely alone at home after my accident: no one within earshot, just an angry tetraplegic trapped in the jarring reality of a helpless body.
That time I howled with pent-up grief. This time I had wheels. I gritted my teeth and glowered at myself in the driving mirror. “This is freedom,” I said sternly. “Make it work for you.”
The singer Susan Boyle, a vulnerable woman who somehow redeems us all from superficiality, has an expression she uses, one she has repeated right from her first media interview. “Baby steps,” she says. “Baby steps.” It was obviously a comforting refrain she has grown up with. For her, it’s the sense that, from childhood, no achievement has been too small to celebrate; you go at your own pace; you take pride not in comparing yourself to others, but instead remember what you can do this week that you didn’t manage last week. If you’re “normal”, if you aren’t compromised in some way by health or neurology or disability, it’s very hard to understand this; or to appreciate how insignificant things can represent huge landmarks. Baby steps, in fact, are bigger than a giant’s stride.
Six times I drove up and down, that’s six miles, getting faster and more confident with each journey. The right forefinger and thumb, which are basically the only digits I have that reliably obey me, must do all the accelerating and braking. The further I went, the more subtle and assured they became. I parked, I turned, I reversed, I played with the radio; ultimately I started to relax. The slicker I got, the more the helplessness receded.
Then I did something a bit mad. Not illegal, just… ambitious. I paused at the end of the track, put the lever in drive, took a deep breath and set off on the public road to the village. Up the main street, successfully avoiding all cars, round the war memorial and back home. The adrenalin was flowing by now and I decided to give Dave a little cardiac stimulation. “Jump in. I’m going to drive you to the bank,” I said. He looked aghast, literally casting his head around for excuses. “But I don’t really need to go to the bank. Not that much. It can wait.” “No, it can’t,” I commanded. “Come on, let’s go. You’ve got a passenger foot brake should you need it.”
The bank is in the next village; it involves going on an A-road, albeit a quiet one. The junctions, I admit, were a challenge. Getting above 30mph was impossible. White van man got grumpy. My parking was a triumph, largely because the car park was empty.
And, God bless my dear husband, he marked me as six out of ten and didn’t scream once. Nor did he offer a word of criticism. I did not see his knuckles gleaming white in the dusk. His verdict: “Very brave but need a bit more practice at junctions. Especially when you’re joining the main road and you, er, will find you improve.” In return I gave him ten out of ten for calmness and composure. And tact.
The staff at Bannockburn Riding for the Disabled Association have asked me to say a huge thank you to readers who donated to the centre following the article about my riding lessons there. Every RDA member group has to fund its own basic running costs and the £3,000 in donations it has received will help greatly. After missing two of my weekly sessions on Nelly, due to my health problems, I am now back in the saddle. The stiffness of my legs is a serious issue, but, as I said at the start, victimhood is not an option. All you can do is crack on. Besides, give me two months and I’ll be driving myself to the stables.
04-07-2012, 12:34 PM
A remarkable collaboration between a journalist, an actor and a composer will bring a moving new work to the British stage next month, in celebration of the Paralympic Games.
Last night Juliet Stevenson, one of Britain’s best loved and most respected actresses, was announced as the narrator of Spinal Chords.
The work is a piece of new music from the composer Sally Beamish, with a vividly painful and haunting text by Melanie Reid, the Times journalist who is tetraplegic after a riding accident in April 2010.
Reid said she was thrilled that “one of the actors I most revere” had agreed to read the text. Stevenson was first choice for the role.
The work opens with a powerful description of the accident that broke Reid’s back and neck, delivering too “a compound fracture of the soul”.
Reid, 53, wrote: “One moment I am cantering my horse towards a cross country jump, relishing the unity with my great powerful chestnut Champion the Wonder Horse, high on the hill and the thrill and the freedom and the wind in my face, hearing the little girl inside me crying out with joy ‘Look at me, look at me!’ The next moment I am pinned to the ground with a broken neck and fractured lower back ... The little girl is dead. Her dreams are atomised. Dust.”
She remained conscious throughout the accident and as she was flown to hospital. Since then, her weekly Spinal Column in The Times Magazine, tracking her agonisingly slow rehabilitation, has become an inspiration for thousands of readers.
The Orchestra of the Age of Enlightenment, which specialises in Baroque music, proved the catalyst for the musical project when it approached Beamish in autumn 2010 to create a new work.
“They said, ‘Can you think of anything to do with the Olympics?’ but I couldn’t think of anything,” Beamish recalled. “I had just read a column by Mel in which she wrote about playing wheelchair rugby. She had found it hugely encouraging and fun, and it had taken her out of herself. I thought, ‘That’s what sport does. It takes you to another place’.”
Beamish and Reid live in the same village near Aberfoyle, close to Loch Lomond, and their sons attended the same school. Reid readily agreed to the collaboration, came up with the title, and wrote the text.
“Because of this work, we have met more often and got to know each other much better, which is very special,” Beamish said. “Mel is inspiring. I’ve turned a corner because of working with her.”
By the end of the piece, by dint of her unrelenting determination, Reid is able to report that, against all odds, she has made some progress, measured in the tiniest, incremental stages.
Spinal Chords will be performed at the Turner Simms Hall in Southampton on February 5 and has its London première at the Queen Elizabeth Hall, Southbank Centre, on February 10.
04-07-2012, 12:37 PM
Autumn 2010 and I was hunched over my laptop in hospital when the e-mail from Sally Beamish dropped. In it, the startling request: would I consider working with her to create a composition of words and music, a piece for the Cultural Olympiad in 2012? Sally lived in my nearby village; I knew her a little personally, because our sons had been friends at primary school, but mainly I knew her by reputation, as a renowned composer. Truth be told, I regarded her with awe, as a rarified classical celebrity. The idea of working with her was flattering, left-field and almost incongruous — she the creator of ethereal things; me, by comparison, a digger of prose ditches.
“What’s the deadline?” I replied, thinking that if she wants it by Friday she’s stuffed, because I’ve got my weekly Spinal Column to write — in which I chart life as a tetraplegic after my horse-riding accident; I’ve promised to help two spinal charities; plus The Sun wants a piece for Armistice Day to raise the profile of soldiers injured in Afghanistan — a cause too dear to my heart to refuse.
“I’d need a draft by next May,” she e-mailed back, hesitantly, as if that might be too much pressure, and I remember laughing out loud, because May was six months away and to a newspaper journalist that’s like saying “never”, or “ten years hence”. “Of course I’ll do it,” I replied. “Just remind me nearer the time.”
The Orchestra of the Age of Enlightenment (OAE), the commissioning body, asked for a suggestion for a title, and what occurred to me was the snappy, throwaway headline you might see in a column of tabloid news briefs. “Spinal Chords,” I said, thinking it was far too poppy. But the musicians leapt at it, reading into it the symbolism of the chord as the backbone of the music. This, I reflected wryly, proves mine is a trade of cheap puns and Sally’s an art form. This project is going to be a marriage of high culture and low instinct.
And then I duly forgot all about it. At the end of March 2011 I returned home, after a year in hospital, and in early April, on a rare sunny day, Sally walked up from the village to see me. By this time, I realised, things had got serious. The OAE — one of the world’s leading orchestras, I was to learn, which performs using period instruments — had been chosen to take part in the Cultural Olympiad celebrations with the commission by Sally as part of PRS for Music Foundation’s New Music 20x12, which features 20 new works from across the UK selected for their creativity and diversity.
So far, so scary. I loved classical music; I was just rather ignorant of it, and appallingly so about contemporary stuff. The OAE sought something in some way inspired by the Olympics. As Sally confessed later, sport was not something that had ever figured in her work. But she remembered how, in a column, I had written about wheelchair rugby: how the experience had lifted my mood and given me a new optimism. That had triggered her idea of a collaboration.
We talked. She reassured me she wanted me to explore themes I was already writing about: the power of the spirit over the stillness of the body; how if we choose not to take risks we choose not to live. How we must trust and keep trying. She wanted, she said, humour and my usual strong voice. “Don’t go all poetic on me,” she said, laughing. I jotted that down, heartily relieved.
One day soon after, I sat down and wrote, distilling a year’s pain and hope into a thousand words. The piece begins in the seconds before my calamitous fall, when I was cantering my horse happily, relishing the taste of freedom, and ends with my struggle to repair catastrophic injury. If I defied Sally at all, it was to be inspired by the soaring danger in my favourite poem, Gerard Manley Hopkins’s The Windhover: “ ... Brute beauty and valour and act, oh, air, pride, plume, here/Buckle! ... sheer plod makes plough down sillion”.
Oh, plough down sillion indeed. How I bit that furrow. I shaped my text as lyrically and honestly as I could and e-mailed it to Sally, telling her to amend, cut or hack as she thought fit. In trade, one is never too precious. I felt guilty about how short a time I had devoted to it, but then I figured the important ratio of words to music was 30:70, possibly 20:80. Sally, I knew, had the much harder task.
She and I both, it’s fair to say, were in uncharted artistic waters. Her reaction to my piece shows how much so. She said: “I read Melanie’s piece and found myself close to tears. The next thought, inevitably, was where on earth I fit in. And how will these words be delivered? Sung? Spoken? Before, during, or after the music? Or not at all — maybe just as silent inspiration. As a starting point.”
The title, she said, sparked off what will be the central idea for the piece. “It was hard to know how I could best serve the words, but the title Spinal Chords gave me a good starting point: the idea of the chord as the backbone of the music. ‘Cords’ (without an ‘h’) also suggest strings, threads, linking and joining. I realised the role of the music should be as a backdrop for a very slow drama — that of Melanie’s ‘spinal journey’.” She decided to use an actor, rather than a singer, to preserve the directness of the text. We are both delighted that Juliet Stevenson has agreed to read the words.
I found Sally’s articulation of the process of composition fascinating. She started from a harmonic standpoint, deconstructed and then “put it back together again”. Over the summer months, she said, as she mulled over it, juggling other work, she saw colours in her head that she tried to pin down.
“It’s a bit like throwing a pot. Once it’s started it takes on a life of its own and you just have to hope you shape it in time before it flies off in all directions,” she said. I loved that image; that sense of the music having an existence of its own. Plus, if we were talking pots, Beamish was finest bone china. This is a woman whose work, embracing chamber, vocal, choral and orchestral music, is performed and broadcast internationally. Recent projects include her second cello concerto, commissioned by the Minnesota and Hallé Orchestras, and given its premiere by Robert Cohen in Minneapolis in 2009. Her new concerto for the percussionist Colin Currie will be first heard in Sweden before coming to the UK in March.
In November, she came to see me, clutching her laptop. Her score was now in its final stages, mocked up on synthetic strings. Her son had set her up with a pair of little speakers so that I would be able to hear the whole piece while she read the text. We sat on either side of the kitchen table, she nerve-wracked, me passive, without the remotest idea what to expect.
In the event, I am reduced to tears by the sound of the strings, at times as raw as my own nerve endings, at other times yearning and soothing. I am not equipped to analyse the beauty of what she has created; all I can say is that the two things, music and words together, move me and seem greater than the sum of their parts. I am, again, awestruck at her creativity.
According to Sally, she started with 12 chords, which are stated, very slowly, three times; each time in a different key. The chords themselves are closely linked to each other: each builds on the one before. The string orchestra is treated as a large chamber group, with 13 solo lines and the chords are stated at first by broken-up groups of players, gradually consolidating into larger groups and then with the addition of ornamentation, and later, scales. The music reflects the agonising slowness of recovery and the gradual reconnecting as the body finds ways to heal.
Then Sally went away and worked on the piece in a final frenzy, filling silences, tweaking some words. I have not heard the finished work. All I know is that it will be played with period stringed instruments: violins, violas, cellos and double bass pared back to their Baroque antecedents — the way they were known in the 18th century. I know too I have had the entirely novel experience of being interviewed and photographed with Beamish for Classical Music magazine and Gramophone.
Sally says this is quite unlike any other commission and she has no idea how the audience will respond. That makes two of us.
The OAE perform Spinal Chords at Turner Sims Hall, Southampton, on February 5 (023-8059 5151) and then give the London premiere on February 10 at the Queen Elizabeth Hall (0844 8479922)
04-07-2012, 12:39 PM
You’ve read the Saturday column, now listen to the sound it makes. Melanie Reid’s award-winning Spinal Column in the Saturday Times has, over the past two years, been metamorphosing into music. And the new creation, Spinal Chords, received its world premiere performed by the Orchestra of the Age of Enlightenment in Southampton on Sunday, at the heart of a stimulating programme of Telemann, Locatelli and Handel.
The composer Sally Beamish, a friend of Reid, was commissioned to write this work by the orchestra, with funding from the PRS for Music Foundation’s New Music 20x12 project, supporting 20 new 12-minute pieces to celebrate the Olympics and Paralympics.
Just in case you’re unfamiliar with the inspirational column, Reid became tetraplegic when she broke her neck and lower back in a horse-riding accident in 2010.
The focus of Spinal Chords is a spare and robust text, written by Reid and compellingly narrated live by Juliet Stevenson. In 12 minutes it travels from the question asked by anyone who has ever had a serious accident — “How to pin down those life-changing seconds?” — and ends with the beginning of recovery. Thanks to Beamish’s music it concludes with the honesty of reiterated but now unspoken questions.
The decision to use narration rather than to set Reid’s text as song was a brave one. For song would irresistibly tempt a composer to try to “express” Reid’s “compound fracture of the soul”. And Spinal Chords does not so much express as impress: the “chords”, played only on the “cordes” — the stringed instruments of the OAE — sear into the nerves as they are deconstructed, painfully built up, fall back again into stasis, then start to reconnect and grow into fragments of melody, motif and new motivation, shared among the band’s 13 soloists. And, finally, three gently vibrant, questioning chords. The audience becomes gradually and wonderfully aware that the musical process is an almost direct transcription of the physical one. In a work that is totally devoid of drama or self-pity, it is left to the listener to supply the emotional subtext.
This works extraordinarily well. As a visit to Dignitas, the clinic in Switzerland that helps people to take their lives, is considered out of the question, vibrato-free violin chords resonate high in their registers. Just as Reid herself, in hospital for a year, found “no private place to cry”, so these stifled cries are now truly public.
Out of long passages of reverberating stasis, even silence, grow the fragments of a skirling folksy dance; strenuous double-bass bowing is given euphonious support as recovery starts; and melody grows cautiously into rhapsody as daydreams are reborn. This musical distillation of a year’s hopes and fears is as chastening as it is compelling.
•Spinal Chords will receive its London premiere on Friday at the Queen Elizabeth Hall, SE1 (0844 8479922), and will be broadcast on Radio 3 on April 21.
04-07-2012, 12:41 PM
I’m worried. I’m becoming obsessed with feeding the birds. Everyone knows the classic story of the sad old lady, pockets overflowing with bread and bird seed, who goes into town every day to service 5,000 pigeons and duly ends up in court. “But I just wanted to feed the birds, tuppence a bag, like in Mary Poppins,” she stammers, before she is labelled a pest, gets an ASBO slapped on her and is cast out from society. Do they give ASBOs to people in wheelchairs?
Actually, I reckon there’s a very narrow line between the oddball and the respectable, devoted feeder of wild birds. There is a primitive magic in feeding birds, from scattering grain for chickens in the garden to hurling chips into mid-air on the seafront for the seagulls; and there’s something addictive about holding a permanent noisy dinner party in your garden for dozens of beautiful visitors. But admit it: this is behaviour not a million miles removed from madness. We are, with our millet muffins and our kibbled sunflower hearts and state-of-the-art nyjer seed bread, perhaps just three removes from those who keep four dozen cats in their kitchen, or fill up their house with mountains of newspapers so they have to tunnel from room to room, and thus end up starring in their own Channel 4 freak show. Just as every heavy drinker loves a proper alcoholic because it makes them look moderate, so every bird-lover loves a crank to make them feel reassuringly normal.
As with all afflictions, mine started modestly. The bird table my friend Helen sent me for Christmas was self-assembly; had I functioning hands, I would have put it together on Boxing Day. Because I haven’t, it had to wait for a man. This took several weeks, a lot of portentous sighing, a cordless drill and many complaints about the screws being the wrong size. Thereafter the end result sat beside my desk for a week. “Nice bird table, but it’s in the wrong place,” observed another girlfriend drily. Unbeknown to me, she’s a birdie too; she let me into the secret of nyjer seed to attract finches.
Then, another friend, so keen she has built a separate table in her garden for what she calls her “lovely thugs”, the adolescent jackdaws, came to stay and placed the table outside. She gutted the fruit bowl and raided the village shop for suet. “There,” she announced, loading the table with goodies. “Fat balls and soft fruit – sounds like one of my old boyfriends.”
Bird-lovers, I am amused to discover, are the target of a remarkable industry. We are that dripping roast; that monied, garden-owning class just waiting to be fleeced for the sake of siskins and sparrows. I thought only horsey people were stupid enough to fall for this kind of thing. But no. Stores selling bird food actually talk about “a good entry-level seed mix for all-year-round feeding”, as if only novice bird-watchers should buy it before aspiring to better things. They’ve also launched supplements for wild birds – supplements for dogs, cats and especially horses being the most lucrative piece of unproven flim-flam yet perpetrated on the gullible pet owner. I kid you not. You can buy a powder marketed as a high-calcium “balancer” for wildlife that relies on a diet of seeds or live insects. I half expected to see a “before” picture of a skinny, unkempt chaffinch, followed by an “after three months on balancer” picture of a fat, shiny one.
In other words, we are being encouraged to treat wild birds like pets. Hence my new definition of a nutter: he or she who happily pays £8.50 for a small bag of peanuts because there’s a picture of a bluetit on the label. “Nuts cost 60p in the pub,” says my bemused husband. But of course he doesn’t realise that bird nuts are supposedly above human consumption grade, to ensure they contain no aflatoxin, a mould harmful to birds. Because I’m now one of the cognoscenti, I know this. Whether I choose to fall for it is another matter.
My son’s girlfriend gave me a bungee man made of millet seed on an elastic string. He bounces, head down, alongside three conventional nut-holders in the rowan tree. After three days, the birds noticed. The branches were suddenly alive with great tits, bluetits and chaffinches. So far I have seen a robin, sparrows and a female bullfinch on the bird table. But my bird-spotting ability is Rumsfeldesque: there are known knowns; known unknowns; but most crucially unknown unknowns. Some of the rarest birds in the world could be eating my fat balls and I wouldn’t have a scooby. I fumble with my bird books and binoculars and curse.
An update. Purely as an act of kindness, most horses with serious recurrent colic get sent to meet their maker. Happily that hasn’t been my fate over the past few weeks, although there were several times in extremis when I wished it were. You soon learn, though, that sobbing, “I wish I were dead,” into the bosom of a close friend or a loved one is probably the biggest disincentive ever to them returning. It’s bad enough for these unfortunate people having to power-hose your bottom half, without being forced to deal with a tsunami of self-pity coming out of the top end.
Anyway, enough. The worst is past; I have only six weeks’ unanswered e-mails to deal with and hours of physiotherapy to catch up on. My body no longer feels as if it is stuck in a vice, and I can straighten some of my fingers again. Last Friday, sucking confidence from the presence of Emma, my loyal community physio, I managed two firsts – to stand up onto my Zimmer from the bed and shuffle into the bathroom, and also negotiate the mildest of the ramps in the house (going uphill). These were achievements so new and so full of dizzying potential that I have been scared to try them again in case it was all a dream.
04-07-2012, 12:43 PM
Of all the things I never imagined I would do, on a list that included becoming an astronaut and modelling for Chanel or sailing solo round the world, was collaborating in the creation of classical music. These were achievements not just beyond ability or inclination, but beyond even daydreams.
How thrilling, then, to have entered a new world. Spinal Chords, composed by Sally Beamish, read by Juliet Stevenson, performed by the Orchestra of the Age of Enlightenment and written by me, has been premiered and well received – a unique venture of spoken prose and music which went where none of us, in all honesty, has been before. I have been hunkered down at home, giving radio interviews like a seasoned media tart, basking in the reflected glory, feeding off ecstatic texts and e-mails and generous reviews.
When Sally and I first got together for the collaboration, we played fantasy football about who would speak my words. Juliet Stevenson was our dream signing, our Lionel Messi. We couldn’t believe it when she agreed. I’d been in love with Juliet since Truly Madly Deeply, and so when, in the hours before the performance, she phoned me, I swooned like a middle-aged Take That fan talking to Robbie Williams. Which is about as ridiculous a simile as you can get, given the music is contemporary baroque, but you get my drift.
In the bittersweet way of things, however, the celebrations have also brought intense yearning. I really wanted to be there for the performances. I tormented myself, imagining how it would have been, pre-accident: excitedly jumping on a train or a plane, having bagged a room at a pal’s for the night. Easy as breathing. Live now. Do it. Make it happen. And all the other trite aphorisms in the gospel of the action woman formerly known as Mel.
But I copped out. In the weeks before the performances, I listened politely to friends’ exhortations to get my trip organised. We’ll book the train for you if the thought of flying is too stressful, they said. We’ll find a suitable hotel. And I sat and I sat – and the sense of stasis grew. Deep down, I knew I wasn’t up to being producer, director and star turn in the circus it would demand. The struggle defeated me before it began. The thought of trying to manage presently unreliable bowels and bladder and body in a strange environment without expert help, of discovering hotel beds too low, or wet rooms too small, the inkling of the burden it would place on dear Dave, just sent me into retreat. Today’s secret aphorisms: stay home, stay safe, watch Dancing on Ice instead.
I made excuses, ducked and dived, did not confide in girlfriends – because I knew they’d take it out of my hands and make it happen – and successfully evaded all attempts to be pinned down until it was too late. In the old days, I used to sneer at people who didn’t like driving to places they’d never been before, or didn’t even want to drive at all. Now I feel ashamed, for I understand what lack of physical confidence and fear of the unknown means.
Besides, emotionally, I was never going to be strong enough to be there. Just as it took the best part of a year before I could read anything I had written in print without breaking down, so it will be some time before I could cope with listening to my story set to haunting strings. If by writing I exorcise some of my pain, then I am not always able to examine its form when it leaves me. It is as visceral as that. What little snippets of Spinal Chords that I’ve heard have reduced me to tears. To have sat through a live performance would have finished me off. I doubt I will be brave enough to listen when it is broadcast (Radio 3, April 21).
So I stay in my comfort zone. For the time being. As I said to Samira Ahmed on Radio 4’s The World This Weekend – I drop that faux casually, the way we media tarts do – riding Nelly the horse remains the highlight of my week. It’s true. The stardust surrounding Spinal Chords belongs to a world that isn’t mine right now. If the work is culture, if it expresses the Paralympian spirit and raises awareness of spinal cord injury, then I am truly honoured. But my private release from prison is my weekly 40 minutes on Nelly’s back – me and her, slowly weaving our way around the rubber-floored indoor school, my concentration absolute, my mind wiped clean of anything but the need to sit tall and move with her walk, while her generous ears flicker to my voice commands and she takes up a contact with the bit.
I still have two, sometimes three attendants walking beside me, but I am controlling the mare on my own. We are practising dressage moves: tight, 10m circles; changes of rein; semi-circles and loops. Trying to make my clawed fingers soft but not ineffectual on the reins. I’m building up to a serpentine, a multiple “S” movement, imagining as hard asI can that I’m bending Nelly around my inside leg, that my outside leg can swing back behind the dressage girth. Maybe, just maybe, the muscles will start to remember.
And last week the staff at Bannockburn Riding for the Disabled laid on a new treat – they took me for a ten-minute hack down the road in the sunshine. Nelly invigorated, striding out; me relaxed, hands on the buckle end of the reins, almost floppy with the joy at feeling so… well, normal. I discover Nelly has another diehard fan in Neil, a paraplegic ex-soldier who comes riding with BLESMA, the British Limbless Ex-Servicemen’s Association. He describes how overjoyed he was the first time she carried him around the indoor school: “You could see the smile from anywhere.” I know just how he feels.
04-07-2012, 12:45 PM
You know how, when you’re a normal fit person and you inquire after an invalid, the people closest to them say, “Oh, good days and bad days.” And you nod sympathetically, pretending to understand. When, really, truly, you don’t have a clue.
On Planet Healthy, you lead a full, frenzied life. In the world you inhabit, you don’t have to consult your body before you do anything. You don’t have time for self-indulgent luxuries like good days and bad days; you just get on with it. Pay rises, unsuccessful meetings, late trains, romance, homework. You roll with these things. On Planet Paralysed, having good days and bad days is code; shorthand for “altogether pretty rubbish, but with the rare afternoon when your body cuts you some slack”.
It’s a weird thing, the loss of autonomy. Being ruled by your own body. Every day, the moment I wake, I can tell which way it has decreed I’m going to go. A lot of mornings, bad omens are unmissable. Legs and fingers in painful spasm, wrapped to the bed. Head swimming when I prop myself up on my elbows. Waves of nausea struggling onto shower chair. (Not to mention dozy husband forgetting to put trousers on before district nurse arrives to take my blood. Him: “It’s nothing she’s not seen before.” Me: “You need carers more than I do.”) Days like this, I just know, everything will be a struggle; life will resemble a fiendish Japanese game show.
Other mornings, by comparison, it is easier. It’s never easy. My fingers are less clawed and I can make a stab at swinging my lower legs towards the edge of the bed. These times, I wheel past the hand basin and, instead of retching, peer at myself quizzically in the mirror. That perpetual feeling of surprise whenever I catch my reflection at waist height: “How did it come to this, you twit?”
And the good news is that I’ve had lots of better days recently. For once, for a sustained period, my body seems to be on my side. It feels ever so slightly lighter, more manoeuvrable.
I can now, when lying flat in bed, start to lift both my knees up, sliding my feet towards my bottom. Considering how long and heavy my legs are – if I weigh 11 stone, they must be about two and a half stone each – I think this shows some kind of recovery. Plus I had my best walk ever on the Zimmer this week – brief and slow, but for the very first time I experienced a sense of swing and rhythm as the steps came through. It felt, for a few dizzying moments, as if the muscles were starting to remember.
When I scratch the skin down my thigh – always one of my deadest areas for sensation – I can now, just, feel it. Other improvements, tiny things, muscular or neurological I know not, stack up in my head. In the car I can, for the first time, lean forward from behind the wheel and close the driver’s door on my own. I can reach the light switch in the living room. And while it’s not remotely a six-pack, if I suck in my tummy muscles I can see the skin go crinkly. My cough is also much more powerful, presumably as intercostal muscles revive.
Last week, too, I did something really normal – coffee with a girlfriend. On my own. I drove my car to a nearby house, she brought out two mugs, sat in the passenger seat and we chatted for an hour or so. And then I drove home, negotiating three small right-hand junctions. I felt like I deserved a medal.
Besides, it was nice to escape home for a little while. It’s a gloomy place, and for reasons totally unconnected with me. Tectonic plates are shaken, eyes are moist; I have taken to tying black ribbons to the frame of my wheelchair as a mark of respect. In fact my depths of understanding and compassion, since Rangers FC went into administration, have been nothing short of heroic. In the beginning, I soothed Dave’s brow and made cups of sweet tea as he sat, transfixed, in front of the TV news channels. Now, as time has gone on, I offer a form of bereavement counselling, encouraging him to talk by asking questions in a low, sympathetic voice.
It is easy to mock, if one is not a football fan – and I’m most definitely not – the depth of feeling and loyalty that the game inspires. Many of us agree wholeheartedly with the sentiment expressed recently by my Times colleague Matthew Syed, that we have far more important things to worry about. There was a time when I would have jeered at all the fuss over the fall of the Glasgow club; at the fans who are capable of weeping over their team but not over their wives and children.
But one grows older and more tolerant, wiser to historical and cultural implications. Rangers is not just a football team; it represents a vast slice of Scottish heritage. Beyond the unpleasant associations – the alcohol, the violence, the bigotry – is a team that represents real identity and belonging: millions of shared childhoods; family memories, passed from grandfather to father to son; and in it still the vestiges of a powerful Scottish ethic: pride, hard graft, industrial might, manliness. In a sense, Rangers powered the River Clyde and, by extension, the British Empire. The Scots have never been good at feelings; this is a team that replaced self-expression for a large percentage of the nation.
And I’m married to someone who grew up watching the streets black with men on a Saturday afternoon, going to the game. So my tact has been extraordinary. “Never mind,” I say cheerfully. “You’ve got your trip to Rome to watch Scotland in the Six Nations to look forward to. Scotland are bound to win, aren’t they?” And he buries his head in his hands and starts to weep.
04-07-2012, 12:47 PM
Readers take me gently to task for using the word “invalid” last week, to describe someone with a chronic health problem. I am startled, but I should not be. Used as a verb, invalid can be heroic, as in invalided out of the Army, but used as a noun it now offends. “Outdated and inaccurate”, says one bible of disability language. Incapacity benefit, don’t you know, replaced invalidity benefit in the last century.
Invalid. Deconstructed, it is, I concede, a fairly brutal word. Not valid. Literally, from the Latin, not strong. Legally, null and void. Worthless. Untrue. Suitable these days only to describe driving licences or immigration visas, not human beings. But I fight my corner: the word has huge resonance for me, sadly, because of an age-old family mystery.
Aunt Averil was An Invalid. She had capital letters. As children, we grew up in awe of this significant, scary label. In it was supposed to lie an explanation, but we found only a puzzle. “My auntie is An Invalid,” I used to boast in the playground – and hoped that no one would ask me what it meant.
If it was a mystery to us, so it was to the rest of the world. In 1924, at the age of 12, poor Averil had been smitten by what was then called sleeping sickness, but what we now know as encephalitis lethargica. She went into decline and spent much of the next 40-odd years as a bundle of rags in a chair.
No one knew what caused the illness or where it came from. The eerie thing is, almost a century later, there still is no answer. From 1916 until about 1928, this devastating epidemic spread around the world, infecting perhaps 5 million people – many, like Averil, girls under 20. Up to 40 per cent died; the rest slowly turned into statues, speechless, motionless, often with their brains intact but frozen within useless bodies. The plague disappeared as abruptly as it came and only a tiny number of cases have ever been identified since. Virus or bacteria? No one knows for sure: despite recent work linking it to bacteria that cause sore throats, it remains one of the great unsolved medical mysteries of all time.
Averil was one of a handful of victims in Northern Ireland. England, northern Europe and New York were the worst affected places. The spread of the disease was sporadic, without obvious relation to class or geography. Another bizarre characteristic of the disease was that person-to-person transmission was rare – none of Averil’s siblings fell ill.
Family lore had it that she caught the disease from tangerines imported from Africa at Christmas as a treat. While her brothers and sisters went on to successful careers and marriages, Averil was left behind to a living death, imprisoned by paralysis, cared for night and day by my grandmother. My memories of school holidays at the family home were of Averil in her chair, distorted by spasms, eyes straining to peer upwards from a face bent towards her chest, arms stirring like twigs.
She sat in the sunshine at the front door, swathed in crocheted blankets, Mitzi, her dachshund, at her feet. Her eyelids drooped and her face had a mask-like quality, but she had a lovely smile and the intelligence shone out of her eyes. Many sufferers were comatose and most were institutionalised; Averil was neither. She would try to shake hands by offering her knuckles; as children, it was frightening but only polite to touch her hand when we arrived. Then, to my shame, most of us simply ignored her, running around playing. But if you looked up, you would sometimes see her watching you with a shy, wistful smile. I wish now, so much, that I had tried to talk to her.
Encephalitis lethargica meant Averil was unable to speak or feed herself; she made noises and, when distressed, tried to self-harm. On those days, Granny used to tie her arms down with rags and fight to get gruel into her mouth. Twice a day she would be hauled to her feet and helped to shuffle, in a pitiful, permanently jack-knifed position, from the breakfast room to her chair at the front door. There she sat, silently watching the years pass.
God only knows the absolute frustration she endured, her brain apparently unharmed but with no way of expressing herself. Long before the days of occupational therapy, Averil had only the Bible to read. Granny, I fear, did not encourage anything as flippant as Dickens or Austen. Instead, the Good Book was wedged on her lap and she turned the thin pages by stabbing at them with a clawed fist. Sometimes she would write in an exercise book – in a lucid, spidery hand – copying out sections of the Bible, or keeping what, as a child, I assumed was a diary.
She died in 1966, just before her 54th birthday, the same age as I am now. She was born, in fact, 100 years ago on April 21, the same day that Spinal Chords, the music I collaborated on to express the challenge of paralysis, is broadcast. As my sister says, what a beautiful coincidence to commemorate someone so forgotten.
Three years after Averil died, in 1969, some sufferers of encephalitis lethargica were treated by Dr Oliver Sacks with a new drug called levodopa. A number of patients made a brief, miraculous recovery, but it did not last – 1990’s Awakenings is based on these events.
There are times when I remind myself of Averil: I catch glimpses of my twisted hands or scrawny shoulders which awake deep childhood memories in me. And then I realise how enormously lucky I am by comparison. Her life, for all my grandmother’s lifelong dedication, was filled with frustration and isolation. When she died her pain ended, but the mystery and the sadness endure.
04-07-2012, 12:48 PM
If you hang out with the right kind of swashbuckling person, and make the right sort of jokey suggestions, then sometimes amazing things happen.
I turned up for my riding lesson two weeks ago and found Nelly tacked up in a normal saddle, instead of her usual flat, wide kind. For non-horsey readers, that’s akin to progressing from sitting on a sofa to balancing astride a fence – a significant challenge even for the non-paralysed.
Help, I cried inside. That saddle looks tiny. However, I was once hoisted aboard, the staff tucked my legs back behind the knee rolls and my pelvis automatically tilted forward, holding me erect. I felt astonishingly secure. So secure that I could wave my arms around and turn my torso. So secure that, three quarters of the way through my allotted time, I glanced down at Sara Smith, my mentor at Riding for the Disabled in Bannockburn, and said, genuinely 100 per cent in jest: “This is amazing. I feel almost secure enough to trot.”
Her eyes lit up. She’s an extraordinary mixture of patience and go-for-it élan. A former British ski team racer, she makes you feel anything is possible. “Well, if it feels right, it usually means it is right,” she said and, while my jaw was still flapping, she took hold of my knee, nodded at Matthew, the other helper, and asked the mare for trot. We did three strides: a bizarre, fleeting flashback of another life, another body. “Again?” Sara said, grinning up at me. My mouth was still open, wordless. We trotted right down the long side of the indoor school – dear old plain Nelly, big calm eyes and generous ears, striding straight and true, carrying me in what is possibly the best sitting trot I have ever done. “I was only joking,” I gasped, before lapsing back into speechlessness, brain boiling with joy. I’d trotted – a horse’s most bouncy pace. I hadn’t felt remotely insecure.
Reckless suggestion number two involved a different mode of transport. I’ve been driving my car around local quiet rural roads, two-mile circuits anticlockwise. A friend tells me of her elderly aunt, who would only ever turn left at junctions – sometimes it took her days to get to her destination. I decide that cannot be my fate. With Dave beside me, I tackle turning right at T-junctions onto A-roads. With my big green “P” sign (for paralysed) and yellow disabled sticker in the back window, emerging shakily into traffic caused neither road rage or embarrassment. Straight bits of road? A doddle. I reached 45mph and almost felt normal.
“Maybe I could drive my car to the stables this week,” I joked. Well, sort of 75 per cent joking, 25 per cent fishing. It’s maybe 17 miles, mostly along a fast A-road, entering a busy city. Dave reacted just like Sara: “You drive there. I’ll drive back.” I was instantly delighted, not so much because I craved the challenge; but also because I know that as he starts to set me free, he will be granted some freedom himself. Besides, for what I’ve put him through, he deserves a taxi driver on standby for the rest of his life, and that’s my next goal.
Why do we keep going, we hopeless neurological cases? What makes us prepared to fight every day? Simple. We do it for the people we love. Because we never stop wanting to get better, in some tiny way, for them. The joy on their faces when we manage something new is the most powerful motivator in the world. As one of my fellow injured correspondents wrote: “What spurs me on, even when things are at their blackest, is the need to make progress for my family. Everything I do, I do for them. So I never give up.”
But help, what have I let myself in for? I spent the night driving the route in my head, fretting over one unavoidable, tight, busy, city roundabout. I would need three hands for turning and accelerating and indicating. What if my arms seized up with exhaustion? And what would the police say when I caused gridlock across Central Scotland? I wrote the screenplay. “If you would exit the car, madam, and come and sit in ours.” “Officer, that’s precisely the problem…”
Anyway, I succeeded. Zero to hero. Pink with stress, I drove my little car all the way to the stables; roundabout conquered; the belt of independence carved with a major notch. “Maws a pure cruiser!” texted my son Dougie in fluent Glaswegian. And in the subsequent riding lesson, I circuited the school on my own. No helpers leading, just Sara standing back several metres. I controlled the ever obedient Nelly by voice and by reins with loops hooked around my clawed fingers. A whip in each hand replaced the action of my legs on her sides.
Aside from the emotional solace, riding is providing remarkable physiotherapy. Nelly’s walk mimics mine; my pelvis sways with her.
I can sit up straighter for longer. Last time I was winched off her back my legs were so loose that I could lift them into the car myself – normally they are so stiff I need someone to do it for me.
Best of all, I see an impact on my walking. This week I have achieved some of my best work on a Zimmer yet. The hips are finding a rhythm, the back is stronger. In a break from writing this column, with Dave staunchly following me with my wheelchair, I just managed the longest, cleanest, fastest walk I have ever done – along the length of the living room, rest, then up the long ramp from the kitchen and halfway back along the room.
And sure, sometimes my feet snatch hilariously up off the ground like a horse trying to kick a fly off its belly; and sure, the progress is dependent on bladder infections being held at bay (which they are just now, mercifully) but the fact is that I am still defying the conventional timescales that say recovery has to stop at some point. So thank you, non-horsey readers, for indulging me in a Nelly-filled column; and thank you, Bannockburn Riding for the Disabled group, for opening up my world and letting me daydream again.
04-07-2012, 12:50 PM
Had Botox this week, darlings. It was time. I’d put it off long enough, swithered and dithered over whether it wasn’t, you know, all a bit superficial and Desperate Housewives. I mean, is Botox really me? All I can say in defence of my gravitas is that, rather than having my furrowed face injected by some dim beautician in low lighting, my treatment was administered by a medical consultant under strip lights with me in what… well, what can only be described as a position of gynaecological splendour.
It won’t make me look any younger or prettier, but I hope a large dose of botulinum toxin in the adductor muscles on the inside of my right thigh will do the trick. The intention is to knock out the muscle a bit; to stop my wayward right leg from scissoring in front of me when I walk, like a drunk on a Saturday night.
One’s adductor is responsible for closing one’s legs. Mine is so overridingly powerful, so out of balance with its opposing abductor muscle – which pulls your legs apart – that my right leg has an unwelcome life of its own. This means that when I’m on my feet I am always turning in an anticlockwise direction.
And not that I’m into one-upmanship with all you beautiful people or anything, but I had Botox injections for my left hand too. But don’t all rush at once: it’s not cosmetically advisable, even for Madonna, she of the ageing paws. In my case, my consultant at the spinal unit, Dr Mariel Purcell, is attempting to relieve the painful, semi-permanent jackknifing of my fingers. She inserts large needles in my forearm muscles, checks that fingers and needles wiggle in sync so she’s pulling the right strings, so to speak, and then she injects the poison. I may never be able to straighten my hands, but hopefully this will ease them.
My hospital visit was on one of those days when the sleet is travelling horizontally. Cold, which once I loved, is now the enemy. Low temperatures grip you and twist you. A few days of false spring, as we have had, and your guard drops. Your fingers start to unfurl like young fern; your legs soften. Like the dog, you go and bathe in the patches of sunshine coming through the windows.
Then, suddenly, when the cold returns, you are caught in the vice again, stiff, clawed: not shivering – that requires a working skin – but enduring a kind of permafrost. This winter, a vision of loveliness, I sleep wearing a Helly Hansen long-sleeved thermal vest, a holey old cashmere jumper and kilt socks, over which goes a vast towelling dressing gown, and then a high-tog duvet, plus, often, a rug on top.
And still I feel cold. From the knees down, due to compromised circulation, my legs and feet are usually corpse-chilly. My feet have sprung little dark spots round the edges, like ink dots. Chilblains, says the podiatrist. Aaargh.
I am turning octogenarian from the feet up. Never mind, I console myself. Tomorrow I’ll study that Vogue story on how to look like a sex goddess in bed. Nothing makes women’s magazines more hilarious than a spinal injury.
It is almost exactly a year since I left hospital, which makes it almost two years since my fall. Which means, according to the textbook, I should lie back and indeed read flim-flam instead of exercising. Two years: the limit for neurological progress. Only recently someone reminded me of this. Thanks, I thought.
Of course there are some spinal injuries from which there is no recovery, no matter how hard you try. I understand that. But one of the myths surrounding many neurological injuries is the timescale of recovery. One of the earliest things I absorbed in hospital was that the first six months were critical. If things were going to happen, they would happen in that period. After that, you’d had your chips.
Thus it was that, six months after my accident, I was sitting in the day room of the spinal unit sunk in gloom because I was not yet performing Riverdance, not even with my fingers, and convinced that all hope was lost, when the director stopped to speak to me. I told him why I felt low. David Allan was cross. “This six-month thing is nonsense,” he said. “I do wish people would stop using it.”
There’s a certain institutionalised poverty of optimism surrounding neurological damage, fuelled by the professional requirement not to raise false hope; not to mention by financial pressures. It costs a massive amount to treat spinal injuries and six-month goals are sweet music for NHS target-setters. In the States, unless you have huge private means, you are lucky to stay four months in a specialist unit.
For me, it was a conscious decision to defy other people’s expectations; to choose false hope over no hope. Instead, I clung to letters and e-mails I received from readers who had suffered spinal or brain injury.
Hope fluttered, like butterfly wings, out of lines and phrases. “It was three years before my gammy hand improved…” “After seven years I can walk around the house on a frame…” “Getting new feelings after ten years…” “Fourteen years ago I couldn’t move at all, or smile, or talk. Now I can do all three… All the doctors said I would make no recovery…”
Recently, I heard from a friend who badly damaged her neck in a riding accident. She wrote: “It was the fourth anniversary of my accident in December. I am still improving. It’s slow and often hard to discern, but I know. I am standing upright for longer periods; I have almost perfect footfall pattern; I am driving so much better – I can feel the brake pedal!; my bladder behaving well and my bowels virtually back to normal. I am walking without sticks more and more.”
So ban timescales. Ban pigeonholes. Ban cold weather. And do laugh charitably at women who think their lives are being ruined by wrinkles.
04-07-2012, 12:52 PM
Show me the architect who designated this hotel room as accessible,” I said through gritted teeth, negotiating a ten-point turn backwards out of the bathroom over an abrupt wooden sill, “and I will reward him with a day in my wheelchair.”
Just a day. That’s pretty generous, I reckon. Were I the unforgiving kind, it would be a year. But really, you know, one never understands another’s life until one walks a mile in their shoes. Or pushes a mile in their chair. Forgive me, but when you go to stay in a Hilton hotel, booked into a special room for disabled people, you kind of assume it will meet your needs.
The first rule for the newly disabled, I discover, is the same as the first rule of management. Assume nothing. Ever. Even of an international hotel chain. Here I was, a speaker at a conference about spinal neurophysiotherapy, and my accommodation was so unforgiving it was funny.
Sure, it had been designed for someone with disabilities. For the one-legged, maybe – there were grab rails all over the shop; or for the very elderly – alarm cords à gogo; or the fat or partially sighted – automatic door entry buttons and special reading lights; but it certainly hadn’t been designed for a full-time wheelchair user. There was even a big red alarm light on the wall above the telly, like on top of a police car, which I assume flashed when you pulled the cord. Or played too many adult movies. I didn’t test it. I was too busy trying to squeeze through the bathroom door.
Maybe it’s just as well I don’t go out that often, as it’s all a bit of an eye-opener. And not in a good way. Before my accident, I assumed that everywhere had amazing accessible facilities. Didn’t disabled people live in a land of milk and honey compared with the rest of us? Weren’t we swamped by European rulings, stringent building regulations, and earnest left-wing councils who built ramps and painted disabled bays with a militancy that bordered on excessive? Wasn’t complaining about “better accessibility” one of the great yawns of all time, the preserve of worthy lefties, Channel 4 and mildly guilt-inducing disabled-rights campaigners?
How ignorant and arrogant I was. How little you know until your life forces you into a status you cannot change. How quickly you can be humbled. Since I left hospital, I have been to two functions in expensive hotels, both places where, as a wheelchair novice, I presumed I would have no difficulties. One outing last year was to a wedding at a five-star hotel on Loch Lomond, upgraded at a cost of millions, where, while all the smart people went through the main doors, the wheelchair guests had to go via the tradesman’s entrance, over stiff door sills and in several different lifts, in order to reach the bar. The disabled loo contained so many fixed grab rails and handles around the pan that I struggled to get my wheelchair anywhere near it.
The second function was last week, at the Northampton Hilton, where I couldn’t manage the fire doors (too narrow to let me through on one side; too heavy for me to open both) or open the door to my room (also too heavy).
The space outside the bathroom was so cramped, and the door itself so narrow, that I reminded myself of an Eddie Stobart 40-tonner stuck in a cul-de-sac. Once in, I could not turn round. There was no wet shower area – rolling in and washing properly was therefore impossible. (“There’s a wet room shower in the leisure pool,” said reception cheerfully. Yeah, right. I’ll just push myself down there, naked on my shower chair, after I’ve done my bowels.)
The bath had enough handles to support a baby elephant – in fairness, I suppose the Hilton gets more bariatric guests than spinally injured ones – and was not of the remotest use to me. Ultimately, one has to laugh, and I was lucky enough to have with me as my carer Susan, my physiotherapist from the Glasgow spinal unit, because together we recreated an awesome scene from Reservoir Dogs.
Susan wedged me backwards into the bathroom in the shower chair; I was like Alice in Wonderland stuck in the doll’s house, my elbows jammed between walls and grab rails. Without my arms I am useless (I was also suffering pre-speech nerves. Why, oh why, oh bloody why, did I ever say yes to the invitation to speak to the Association of Chartered Physiotherapists Interested in Neurology?) and, in my anxiety, I knocked a mug onto the floor, smashing it. A shard punctured the side of my foot; a tiny wound, but as I’m on warfarin it bled like an artery. Blood, water and broken china spurted across the white tiles. “Conference starts in half an hour and I haven’t done a poo yet,” I bleated desperately to Susan. The hobbit was remarkably unfazed, kneeling in her pyjamas amid the gore. “Man, this blood is spectacular,” she said coolly.
Suffice to say I owe her one. She washed me, dressed me and got me to the stage on time, albeit lacking mascara or brushed hair. The key speaker was Lisa Harvey, from the University of Sydney, who is the modern guru of spinal injury. Her talk was a fascinating insight into the gap between a spinal patient’s expectations of future goals and those of the therapist, informed as they are by hard experience. The patient’s expectations are usually unrealistically optimistic: the question for physios is how they manage that.
It was riveting stuff, especially in the light of my message, which was not to give false hope, but to continue to encourage hope. Leave the door open, I said. Funny, isn’t it, that the same message goes for architects. Leave the door open. And realise, everyone else, that one should always check with the Spinal Injuries Association advice line. Because, amazingly, “accessible” hotel rooms doesn’t mean they’re suitable for wheelchairs.
04-07-2012, 12:55 PM
When asked about assisted suicide, I tend to pause and take a deep breath. You really want to know what I think? From the vantage point of a severely crippled body?
Honestly? You want the voice from the coalface? You don’t just want an opinion from some able-bodied moralist who presumes to know what’s best for me?
I find it ridiculous that an educated society, facing an unaffordable explosion in dementia and age-related illness, is prevaricating over this issue. It is, for me, almost inconceivable that the law lags so many decades behind modern realities; and is so out of step with the feelings of the vast majority of the population.
Where is the democracy surrounding death? The fact is simply this. Because of a religious minority, a few antediluvian pressure groups and the might of modern medicine, we are condemning growing numbers of elderly, terminally ill or disabled people to a terrible lingering twilight rather than a good death in the circumstances of their choosing.
And we are condemning the people who want to assist them to the threat of criminal prosecution. This is a scandal.
Today, apparently for the first time in nearly 40 years, MPs are to vote on assisted suicide (in 2006 a change in the law on assisted dying was defeated in the House of Lords by 148 votes to 100). Says it all, doesn’t it? The Conservative MP Richard Ottaway has secured a debate about the guidelines by the Director of Public Prosecutions on the issue, which have been in place since February 2010. The guidelines make it clear that prosecution is unlikely in cases of compassionate amateur assistance to die.
We must hope our MPs are bold enough to represent the nation’s views and support this stance. A recent poll found that 82 per cent of people believe that the DPP’s approach to prosecution is “sensible and humane”. Every single person I know is of the same general opinion: that there is no point keeping humans alive just for the sake of it, when they don’t want to be, in circumstances which we and they regard as intolerable. And if they need help to achieve a good death, in the comfort and peace of their own home, we should be able to give it to them.
Yet we are being held back by a tiny number, not even 18 per cent I bet, who either believe the Bible rules it out or are so blinded by the doctrine of palliative care (or perhaps both), that they remove choice from the majority.
Ironic, isn’t it, that we can buy 50 different types of pasta or ice cream? We can choose a million styles of hair, or clothes, holiday destination or car. Tidal waves of consumer choice lap against us every waking minute. Yet when we need help to effect a simple, primary decision to ease out of life; when we want to avoid becoming a living shell, stuck in bed, in pain, staring at the wall for months on end, and thereby condemning our relatives to a similar suffering, we are denied that choice. Or, if we are able, we must leave the country and go to a grotty Swiss suburb to find it. In an age wedded to the gospel of human rights, in other words, we are denied the most basic human right of all.
I will be very blunt. Most mornings I contemplate suicide, briefly examining the concept in a detached, intellectual way. It’s always during the hour when I am sitting on my shower chair over the loo, leaning forward over my purple, paralysed feet, fighting nausea and light-headedness, sore bones and paralysed bowels. This, without intending to sound self-pitying, is the worst bit in the day of a life as a tetraplegic — a cruel Japanese game show, full of repeated tortures.
And every day I stare at my toes and say to myself: “Nope, got to keep going, got to keep fighting.” Because I choose, fiercely, to live for the people who love me; and will continue to do so until such point as they understand I cannot carry on. I hope that moment, if or when it comes, is many years away.
But you know sometimes, just sometimes, I get angry enough to wish that a few bishops, palliative care specialists and those dedicated campaigners from Care Not Killing — ah! what amazing arrogance lurks in a name — were in my skin, sitting in my shower chair, facing my future.
Knowing that I have a choice is a huge comfort to me; it sustains me on the days when I make the mistake of looking too far in the future. But the point is, I am blessed precisely because I have a choice. I can talk, use my hands to a limited degree. I could, if I sought to, take my own life without implicating anyone else.
There are many other people who, because of their illness or their disability, do not have this possibility of self-determination. Their right to choose is denied to them. They need help to escape from their imprisonment; and they want to know that their family or friends will not be punished for assisting them to die.
The debate today is narrow in scope and only the beginning. It covers the terminally ill, which rules out spinal injuries and a host of other forms of chronic suffering. But it is an important start.
Humanity and economics demand that, eventually — and yes, yes, yes, with all proper safeguards — assisted dying is extended to become legally available to all those who seek it, and not just cancer patients. People like me, living with the consequences of an accident, who dread growing old and lonely. People like my mother, who in the early stages of dementia expressed a clear wish to end her life and not be a burden on us.
There will be a whole generation of ageing babyboomers, in fact, who will seek to go out of life in the same way they have successfully run it: in control, not in incontinence pads in a care home. This debate is not about other people. It is about every single one of us.
Melanie Reid won Columnist of the Year at last week’s Press Awards for her Spinal Column, which appears in the Times Magazine
04-07-2012, 12:57 PM
One of my best girlfriends was baby-sitting me over the weekend. She and I revived a ribald idea we once had for an old-age commune, a scheme which would allow us to spend our twilight years loved, laughing, occupied – and never lonely.
Here is the plan. Please understand it is an anarchic one, but that’s not to say unattainable. When our group of friends reaches the age at which looking after ourselves or living alone is starting to become problematic, we sell up, pool our resources and buy somewhere big together. Where exactly is not yet decided: while a château in the Dordogne or Tuscany would offer an agreeable climate, the downside would be its appeal for our pious children and their offspring, who would come seeking free holidays and tell us off for drinking too much and squandering their inheritance.
The building would have to adapted, of course. We would each require our own personal quarters to retreat to, but there would be spacious, communal areas. And, needless to say, absolute wheelchair access. We would have two lounges, one for smoking, one smoke-free; a library; a dining kitchen; a TV room; a swimming pool and an enormous Jacuzzi with a hoist. I suspect we may also need a dedicated grumpy old men room for any curmudgeonly partners who survive long enough to move in with us. The property would be wood and stone, in the best of taste, warmly and eclectically furnished with our amalgamated possessions.
The concept of the commune is libertarian, democratic, compassionate and as lawless as anyone wants it to be. We will be wearing purple hats and clattering sticks along railings. We will be raucous, empowered and will turn on its head the unwritten rule that says the old should be weak and invisible.
Crucially, there would be servants’ quarters. Ah, servants. We will need lots of bright, sympathetic young staff to stop us getting too smelly and to cook us delicious meals. We will require gardeners and gofers, functional eye candy – bold, kindly young men with toned bodies who are happy to mow the grass topless. They should also be ready to chauffeur us around, or go out to acquire high-quality illegal substances for us, should some of us decide we, a) don’t want to change the habit of a lifetime, or b) are fed up with being good and want to try all the things we’ve spent our whole lives telling our children to avoid.
We will need carers, women with an unfailing sense of humour who will bring us gin and tonics before bedtime and massage us with exotic emollients. Or maybe the gardeners could do that. We will have a book club, a poker school and art classes. We will sustain and comfort each other with laughter and shared memories. We can withdraw to our private rooms to be alone, but we will never be lonely.
An administrator will deal with boring essentials, organise skydiving and concert tickets, and oversee the guest wing, where our families will stay when they visit. This is a necessary evil, for inevitably our sons and daughters will nag – they will try to stop us taking risks, or drugs. We’ll have a strategy to subvert their efforts to cotton-wool the grandchildren, though. One friend, who wants the commune to open tomorrow and she’s only 55, fancies a wicked, Hogwarts-style twist on health and safety notices: instead of “Fire exit”, the sign will light up, “Ha! You thought this was a fire exit”.
But given the commune is a private arrangement, I would hope to duck under the radar of safety bureaucracy altogether. We will set our own rules, run our own risks. All we need are a couple of good lawyers to create the framework for the shared property ownership, and as two of my chosen co-habitees are precisely that, I’m going to get them fired up.
What is critical is the core group of friends. Kindred spirits are a necessity; a sense of the ridiculous essential; a disregard for convention desirable. Intelligence, fun and curiosity are more important than a full quotient of marbles or a functioning spine. A little craziness, in fact, is no bad thing. I already have a list of a dozen suitable good women, great friends all, with whom I could happily live.
There are obvious practicalities in this regard. A spread of ages will be useful, as the commune will fail if we pop our clogs at the same time. We will also need a protocol so that, by prior agreement, the younger members know at what point to put the pillow over our face and give us a good death. This is a condition of joining: when the fun is gone, we must be there to spare each other the horrors of long-term dementia or being kept alive when quality of life is gone.
Another consideration is how to replace us when we go. Someone else will have to buy into the property. This should not be hard to organise, given our broad circle of friends and the fame our château will have gained. In fact, by the time they’ve made the TV documentary and film about us, I predict there will be a waiting list years long and private companies will be on to the idea.
Growing old never used to be something that worried me, but my accident has changed all that, putting age and helplessness into terrifying focus. The commune, an amusing fantasy a few years ago, is now a serious thought.
And it’s worth a try. Think of the alternatives, the fate of so many elderly people – trapped in beige semicircles in nursing homes watching telly, or living in exquisite isolation in the granny annexe of their son or daughter’s home, miles removed from their own friends, and regarded at worst as a burden, at best as an unpaid baby-sitter. Give me anarchy any day.
04-07-2012, 12:59 PM
Whitney Houston, Michael Jackson, a few hundred thousand addicts and me, we have a lot in common. We are – apologies; in Michael and Whitney’s case, were – all users of benzodiazepines. “Benzos” are the highly addictive sedatives that are much prescribed, much exposed in scary investigative documentaries, and, as major drugs of abuse, much exchanged on the street corner.
The superstars died alongside their lorazepam; lesser mortals go for temazepam (the most widely abused prescription drug in the UK) or diazepam (Valium, mother’s little helper). The spinally injured, meanwhile, get prescribed clonazepam (one study said it could be the second most abused benzodiazepine in the US) to ease neurological pain and spasms.
Before you think I’m permanently stoned, let me assure you I take only a small dose: half a 500mcg tablet before I go to bed, to stop my legs and hands jackknifing, and allow me peace to sleep. I cut up the pills with nail scissors, as carefully as any clubber ever cut cocaine. Sometimes, I only take a quarter. Honest.
There is no denying, however, its potency. Even a small amount puts me out like a cosh. I sleep heavily, wake rarely, and feel like a slug in the morning, though this may be coincidence: when you have a spinal injury you permanently feel like a slug, so I can’t really blame the drug.
But what if I’m hooked? Worryingly, I seem to have convinced myself I need it. I always like to know I’ve got a few days’ supply in the house; that there’s a fraction of a tablet by my bed in case I can’t sleep. Clonazepam, for more than a year, has helped me make it through the night; otherwise, spasms can wake me every couple of hours. Even having taken the drug, I have blistered one of my heels rubbing it repeatedly against the sheets in my sleep.
As I spend my life trying, in a terribly Presbyterian sort of way, to cut back on the number of pills I take, refusing alcohol and rejecting rich food, why do I regard clonazepam so fondly? Should I cut back? Is the enemy pretending to be my friend? And why, when everybody in the whole damn world seems to be ingesting something intoxicating, can’t I stop being so ridiculously uptight, lie back and swallow everything that’s going?
Although it’s regarded as one of the safest benzos, clonazepam is abused by poly-drug users and I could sell mine on the street for a few quid a pill (I haven’t actually market-tested that claim, you understand). Benzos swiftly reduce anxiety, put you to sleep and quell panic symptoms. But, according to Wikipedia, their greatest asset is also their greatest liability: drugs that work immediately tend to be addictive, and it is estimated that one third of people who use them for longer than four weeks develop a dependence and experience withdrawal symptoms. Four weeks! I’m on 14 months. That’s it. Cold turkey immediately.
One of my dear, outrageous friends, while babysitting me, took to reading aloud to me at night. Despite my refusal to reward her with clonazepam – and, boy, she pleaded – she sat in my bathroom as I prepared medication and delivered me a personal Book at Bedtime. And what she chose to read was a little gem: The Sound of a Wild Snail Eating by Elisabeth Tova Bailey, an American writer who, on a trip to Europe at the age of 34, was felled by a mysterious viral or bacterial pathogen. It resulted in severe neurological symptoms.
Elisabeth made a partial recovery, then relapsed, her body and the autonomic nervous system that controls heart rate, blood pressure and temperature rendered useless. I have to quote her description of herself lying largely paralysed, because it’s so good, so astute, I wish I’d written it myself. She said: “Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties. It was all I could do to get through every moment, and every moment felt like an endless hour, yet days slipped silently past, as if time itself is starving, and each day is swallowed whole, leaving no crumbs, no memory, no trace at all.”
A friend brought a pot of field violets containing a little brown snail to Elisabeth’s bedside. She quotes Edward O. Wilson – “The natural world is the refuge of the spirit… richer even than human imagination” – and in the snail she found something to observe and care for, a new purpose in life. She entered its world, itself a pleasing metaphor for her own illness, and ended up writing a love affair to the secret wonders of the gastropod. The snail, she said simply, kept her spirit from evaporating.
I commend her book to anyone who has ever had to spend more than a day in bed.
The natural world has become a place of refuge for me too; able-bodied, I never dreamt of the beauty to be found in stillness and observation. Snails I have not encountered, but I do find myself studying the occasional beetle which ventures into the house. Where once I would have extended a foot and squished it, now I watch it crisscross the floor, admiring its foolhardiness, wondering how it got in, what it eats, drinks, where it sleeps, what its plans are for the future. I wish it life and freedom. Pretty soon I may be a Jainite, sweeping the ground before my wheels in case I crush anything.
Quite aside from studying beetles, I have been too busy to exercise much these last three weeks, but I am confident my rehabilitation has not gone backwards. Time is on my side. I must not fret… even when I succumb to benzo withdrawal syndrome, characterised by anxiety, psychotic manifestations, aggressiveness, irritability and hallucinations. Oh dear, please, someone: stop me reading Wikipedia.
04-07-2012, 12:59 PM
Wow....I was way behind. Enjoy.
04-07-2012, 01:48 PM
Thank you so much.
04-13-2012, 09:18 AM
I have read a few of these online and hopefully caught up with the rest on this thread.
Melanie Reid is an amazing writer, many of her pieces have moved me to tears and I really admire her, I cannot ever imagine being brave enough to reveal my vunrability to the world like Melanie has, let alone do it so eloquently.
04-13-2012, 11:32 AM
Again, thanks F.P.F.
04-14-2012, 05:56 AM
Diary of a drug addict, Part 2. This cold turkey stuff is harder than I thought it would be. Pretty hellish, in fact. I’m sore, shaky; my eyes grate in their sockets; my body, weirdly, feels both weak and rock rigid. At night I dream, horribly, lost in some apocalyptic computer-generated death struggle: Avatar meets The Hunger Games. They’re trying to kill me, throttling me; I’m firing back, enjoying the sight of bodies being blown apart, splattered. I never watch movies like this; why on Earth am I dreaming them? Where, within my mildness, is this violence coming from?
Honestly, the most mind-altering stuff I view is Antiques Roadshow. I spend large parts of the day watching the birds – the latest arrival on the patio, two gorgeously vivid yellowhammers – yet my nights are trapped in a CG war zone. I know clonazepam is a powerful drug, even though it’s one of the safest benzodiazepines, but this is ridiculous. In denial as ever about my lost physical strength (I struggle to open a car door), I thought coming off it would be a doddle. A problem for others maybe, but not for me. How arrogant can you be?
The knowledge that the tablets are sitting in the bathroom gnaws at me, exactly like when you’re dieting and you know there’s a few squares of chocolate in the back of the fridge. The devil’s whisper: go on, just a little treat, you’ll be good tomorrow. Or when you’re trying to cut back on alcohol, come home knackered on a Friday night and attempt to ignore the wine rack. The reassurance that the stuff’s there if you’re really desperate – just half a glass, won’t do you any harm, you deserve it – lurks around the edges of conscious thought.
What I must be rational about, as well, is the pull between my desire to be drug-free and the acceptance that I can’t be. As so many others have discovered before me, the side effects of a damaged spinal cord can’t be defeated by heroics. Without the drug, my spasms at night are intense, waking me, legs and hands cramped in rigor mortis. Without sleep, my days are compromised. There is a delicate balance between damping down the involuntary muscle tone with medication, and maintaining enough strength to continue my physiotherapy. If I seek more recovery, I must be sensible. And patient. Somewhere in the mix is also quality of life. (I’m just reciting this now so my consultant doesn’t have to.)
Sensible. Patient. Rational. The second anniversary of my accident means this is a tough time of the year to be any of those things. I try to ignore the date, because it’s stupid to give it any significance: wasted emotion, there’s no point; but it’s like a weevil in my brain. On the day itself, try as I do to resist it, my eyes flit to the kitchen clock – half three; was I in the helicopter by now?
As ever, the best revenge is living well.
In the evening I go on the easyJet site and book flights to Paris for my nephew’s wedding, as if to say, yah-boo-sucks: I’m still alive and kicking – well, if you count wobbly leg lifts as a kick. Here I am, two years on, booking international travel when I might have been dead.
As part of laying the ghost I feel strong enough for the first time to ask Katie, who was with me at the time of my accident, to describe what happened. We were cross-country training; she’d jumped the fence and had turned to watch me follow her. She says my horse was approaching strongly and straight, ears pricked, giving every indication he was going to jump it. This is my memory, too.
In the very last split second, she says, he put the brakes on.
It was a really dirty stop. Head on, not a sideways duck out. I went straight over his head, making the mistake of trying to cling on to his neck, so my arms were behind me.
As I nosedived, my legs flipped over my back. A classic Christopher Reeve. “How fast did I fall?” I asked. “I can’t tell,” she said. “I just see it in slow motion.” Poor Katie. She now wears an air jacket every time she gets on a horse; I hope other people who were there with her were not too scarred.
By coincidence, my horse’s new owner e-mailed me to say he is well and loved in his (non-jumping) home. She wrote: “He is a charming horse with many equine friends and lots of human admirers. Knowing his gentle personality, I know he would be very sad if he were able to understand the consequences of his action. Maybe one day you will be able to come and see him.”
And maybe I will. Amidst all the withdrawal symptoms, I can tell you of some progress. The toes on my right foot, which have remained stubbornly immovable, will now lift up. My whole foot, in fact, which would only flex up towards my ankle with the aid of electrical stimulation, does so by itself lately – very slowly, very deliberately, but quite readily.
This movement is called dorsiflexion and is a vital part of walking. When my neurophysiotherapist Kenny Thoms comes, he makes me lie on my back, knees up, heels on the bed, and tap my toes up and down. I lie there, unable to see my feet, mentally willing them to obey.
Fred Astaire would not have been impressed, nor Michael Flatley, but what excites me is not just that I can make both feet flex like this, independently, but I can, for the first time, actually feel them doing it. Is this a tiny bit of proprioception (feedback from one’s joints) returning? Amid all the grot, that’s a flare of hope to keep me going
04-14-2012, 03:14 PM
Thanks FPF. I enjoy reading these more than I can tell you.
04-21-2012, 05:42 AM
There are some unexpected perks from my situation. One of them, if you possess a fertile sense of the ridiculous, is discovering the lunacy that lurks around the edges of disability. In this regard, one of the most spectacular bits of low-hanging fruit is a person called Chloe Jennings-White, a fake paraplegic who features in a National Geographic documentary to be broadcast next month.
Jennings-White is the best known proponent of a movement called transableism. Transableists claim they are disabled people trapped in able bodies and they have a burning desire either to live as cripples or get medical help to do so. Some of the transabled want limbs removed, some want to be deaf or blind and some want to be paralysed. Honestly, I’m not making this up.
Transableists are disability pretenders – they admit to doing things like deliberately falling over in their wheelchair in front of a long queue at the cinema. Oh, the fuss! Oh, the delicious outpouring of concern! While you or I might accuse such people of unfathomable attention-seeking, the transabled claim they are suffering from a psychological or neurological condition called Body Integrity Identity Disorder (BIID), first classified in 2000. Once medicalised, of course, the condition achieves a status that decrees it must be respected. For fear of causing offence to the afflicted. The far greater offence their actions cause to the genuinely disabled appears not to be a consideration. Funny that.
Jennings-White, a scientist in Utah, lives as a paraplegic, pretending to be paralysed from the waist down. She wears leg braces and uses wheelchairs and crutches. The problem, for those of us who struggle to indulge people – sorry, celebrate diversity – quite to this extreme, is that there is nothing physically wrong with Jennings-White. She lives a double life. When she’s out in the countryside, she happily gets out of her wheelchair and goes hiking. It is only in the company of others that she feels compelled to be seen as disabled.
Furthermore, she claims to want surgery to transect her spinal cord, so that she can really be a paraplegic. She calls it “Ability Reassignment Surgery”. Jennings-White, all in all, can best be described as the gift that keeps on giving. Often people who say they have BIID are transsexual or transgender men; Chloe, it has emerged, was apparently once Clive. Since becoming a woman in a wheelchair, she also claims to have suffered from selective mutism. (No, I don’t have a clue either.) On her own internet blog Jennings-White describes herself as “a disabled intersexed lesbian feminist with BIID… and deaf in one ear”.
Indeed, in the race to see who can be the most disabled, in this age of barmy victimhood, Jennings-White puts many a nose out of joint because she is hard to trump. Especially disabled gay women, a fearsome pressure group, who on the internet froth with rage. “It is already so hard for disabled lesbians… this man is appropriating so many identities and causing so much harm,” posted one.
And who could top this comment? “It’s a sexual fetish parading as an identity disorder so we can all feel sorry for them, pay attention to them, be supportive of them, and in general let them drain us of energy like vampires. Let them go back to latex and leave lesbians and disabled people the heck out of their soul-sucking perversions.” As I say, beyond parody. I haven’t enjoyed researching anything as much in a long while.
While few people add as much to the gaiety of nations as Jennings-White, sadly the phenomenon of someone with function pretending to live a life of suffering and struggle is not that rare. Many a weary social worker has to deal with clients who claim to be suffering from debilitating disability, spinal or otherwise, when there is little proven physically wrong with them. These clients, who often have psychiatric files as thick as a brick, must be treated with kid gloves under the provisions of mental health legislation and often require expensive care packages. Are they mentally ill or con artists? I’m glad I’m not the one who has to make the call.
Back in the real world, where lots of us have worse afflictions than narcissistic psychological disorder, progress is as fleeting, as teasing, as ever. My attempt to come off clonazepam has ended following my first failure of a riding lesson: last week, when I was lowered onto Nelly’s back, my body went into fierce spasm. My top half plunged down towards her neck, my knees came up to meet it. After two precarious circuits, as twisted and uncomfortable as a medieval torture victim, I gave up. Nelly, who was in season and feeling as hopelessly randy and unfulfilled as Tian Tian the panda – though she behaved impeccably under the circumstances – was deeply grateful at the chance to go back early to her stable and daydream of stallions.
This failure to sit up in the saddle has never happened before, and coincided with a week’s cold turkey off benzodiazepines. Lesson learnt; in my case, the hard way as usual. If it’s a choice between the best bit of my week, which is riding a horse, and taking a strong drug, then there’s no debate. I am back happily taking my half tablet every bedtime and getting a good night’s sleep. Instead, to satisfy my inner Presbyterian, I have practically cut out all paracetamol and ibuprofen.
In a life where hope is measured in tiny flickers of movement, I have one other triumph. My left thumb is suddenly strong enough to press a light switch on the wall. Eat your heart out, Chloe Jennings-White.
04-21-2012, 04:49 PM
She is so awesome. (Melanie, not Chloe.)
04-21-2012, 08:47 PM
05-22-2012, 05:15 AM
I am having trouble getting my head around the transableist thing tbh. Most odd. I mean why?
Anywho thank you FPF, appreciated as ever xx
06-21-2012, 09:06 AM
The Times columnist Melanie Reid broke her neck and back earlier this month. Here, from a hospital bed, she confronts her future . . .
This is me. I’m dictating this because I lie imprisoned on a hospital bed. I’m here because, three weeks ago, I landed on my head and broke my neck. In the space of 15 minutes I have gone from someone whom I considered to be a fairly high-achieving mistress of her universe to what looks like a tetraplegic.
It happened as I was doing a course of cross-country jumps at the start of the season. I’ve been riding for 30 years and I have always done so on a safe horse. It was the fifth jump, he was jumping a little stickily and with the brilliance of hindsight, the uncatchable brilliance of hindsight, you think, maybe he wasn’t going so well. But experience has taught you to kick on. So we did and we went for this little jump. I had committed, I was riding hard for it — and he stopped sharply. I slid over his head quite slowly, and was face-planted in the Perthshire soil, some of which is still tying up my teeth three weeks later.
As I landed I felt the impact on my face and thought, OW! And then there was this blinding flash, this red light, and in a perfectly cold, conscious, logical part of my brain I knew my back was broken. When I couldn’t move my legs I wasn’t altogether surprised and I just lay there thinking: shit, why did I let this happen to me? Damn, why did I let this happen to me? Damn, life is going to change for ever.
I lay with my face in the soil. My friend, who is a vet, had jumped the fence first. I told her: “I can’t move my legs.” They phoned for an ambulance.
The St John Ambulance team were very good but I think they were horrified to realise the implications of what was going on. I could speak quite normally. I said: “Why don’t we phone for a helicopter?” I could move my shoulders and so I could flip-flop my elbows, but there was no power there and I thought, keep still. Here was me, a middle-aged woman, arrogant enough to think I could compete with riders 20 years younger than I am, telling myself, it’s not going to happen to me. But it has.
After 15 minutes, the helicopter landed. In fact two helicopters landed. The journalist in me smiled. I think the Sea King got there first and Katie, my friend the vet, said: “Ooh, the winchman’s really dishy”; and he said: “Does anyone want to come to Glasgow, with the casualty?” and she said: “Oh yes, I do.” And I thought, Katie, you should be taking your child and your pony home.
They put me on the stretcher and already, in a weird way, my life was shutting down. I was strapped on to bodyboards and put on the floor of this helicopter. I love helicopters. I’ve always loved helicopters and I couldn’t enjoy riding in it. I experienced a moment of utter frustration.
The winchman was indeed very dishy, and he took his helmet off, but I was having trouble breathing, and I think he was worried that, because it was obviously a neck break, I didn’t have the chest power to breathe. I said to him: “I can’t breathe,” and he said: “Yes you can, girl. You do this for me. We’re going to be there in six and a half minutes.” It was one of these hilarious Mills & Boon moments where you think, I’m yours, I’m just completely yours, and at the same time you’re thinking, no one will ever want me again.
Then it was into A&E, from there to high-dependency unit, to MRI scan. The doctors come and introduce themselves and they tell you that your spinal cord is fractured and is unstable and the column has been damaged — not severed, but damaged, stretched on one side and compressed on the other. It’s a C6 fracture, a classic neck break. There is a break further down the back — T9 — but it’s not so serious.
With an unstable fracture of the back, you become a slow-motion emergency. You have no control and it’s hard to come to terms with the loss of that, even now. Here in the national spinal unit for Scotland, at the Southern General Hospital in Glasgow, the care begins, and the pace of life changes down.
You go from running your own life, from being go-for-it, up-for-it, get-the-job-done, to being this person who is completely helpless. The change is extraordinary. Apart from the physical shock of a spinal injury, there is the emotional shock of coming to terms with the fact that you’ve lost control over everything ... everything — from your future employment to your bowels, even to your ability to call out for a nurse in the night.
Those of us who operate at full volume, full control, we make the decisions and we make them quickly, and suddenly we’re caught up in a world where there are no decisions to be made. We just have to lie and wait. Our futures have been taken out of our hands in a way we could never have dreamt of. And we know that coming to terms with that will be an extraordinary battle.
I was operated on by one of the top neurosurgeons, Jennifer Brown, and she pinned the bone.
The nights are the worst. On the third night, I lay through the long, dark reaches of the soul. You realise that maybe it’s not going to work out. The biggest battles are fought at night-time. Sleep is difficult, but if you do sleep there are these appalling morphine-induced dreams. Every time you close your eyes the tiles on the ceiling start to crawl with animals, demons and obscene things. And you float up there as if on some morphine cherry-picker and drift in a state through this world made of knitting, cable-stitch, plain and purl, with dark hollows. You can read obscene messages written on the tiles and when you look again, they’ve gone and when you look again, there’s a rat peering out.
Whoever did Trainspotting had had a lot of morphine at some point or other. I’ve stopped the morphine now, but the effects of it are still crawling in my system. I was on it for quite a few days. I had to be intubated for the operation and remained on a ventilator until I was strong enough to breathe on my own. I then caught pneumonia. I was told by my doctor: “There was a point at which we thought we might have lost you there.”
Most of the time, you don’t know how ill you are, because you seriously refuse to consider it. You don’t think logically. You are trying to be brave for your family when they come to visit you, to make them smile and go away happy and think, she’s bright tonight, when really you just want to say to them: “Stay with me tonight. Please don’t go.”
To sustain the illusion, the nurses lie to you. They have to lie to you. It’s the only way to keep you going. So I would say: “When will I come off the ventilator?” And they would say: “Oh, it’ll be Saturday.” Well, let me tell you, that week there were five Saturdays, three Sundays and two Fridays. Then they did finally take me off.
The other enormous thing is the claustrophobia. When you’re on a spinal board the vision is peripheral. You can only see a tiny view — a dinner-plate size above you. You can’t see clocks. You’re also lying very flat because you’re in a neck brace, and when you do move you get motion-sick, so I was permanently nauseous, bringing up food. Food? I haven’t had proper food for three weeks. I was fed intravenously through a stomach tube. Tea? What’s a cup of tea? They give you drugs for nausea and you bring them up. Everything is a fight to keep you alive and to get your body through the shock.
Every night you lie and you look at your body and you try and recognise it. I don’t know if my legs are going to come back. You look at them and it’s the weirdest sensation, because you’re looking at the bit of your body that you can’t feel. It’s slightly fleecy and suedey and velvety and you can’t feel it. You can look at it and touch it, but you can’t feel it. All you can do is try to wiggle your toes — but the wiggle doesn’t happen, except that just very occasionally you think, maybe I did feel something there, and you’ve just got to keep hoping.
I have got fairly good use of my right arm and I’m right-handed. I’ve got mobility in my shoulder. My fingers are weak, but hopefully I’ll be able to build on that. If I’m extraordinarily lucky I might get some feeling back in my legs ... you hear wonderful stories. I just have to come to terms with the fact that I’m lucky to be here at all. And in my head I am fiercely alive.
06-21-2012, 09:18 AM
Ventilator, pneumonia, wheelchair . . . then
Almost a month ago, I broke my neck in a riding accident, leaving me almost immobile. This how I am fighting back
Two weeks after I came in here I was able to turn my head enough to see the clock — and it said 1.30. So two weeks before that, exactly, I was lying on the ground waiting for the rescue helicopter. A lot has happened in between.
This morning I’ve sat in a wheelchair and seen the doctor. “A week ago you were on a ventilator,” he said. “Then you caught pneumonia and now you are sitting in a wheelchair — so that’s an amazing week.”
I’ve come a long way. But there’s an even longer journey ahead. Yesterday I was put on a thing called a tilt board, which swings you upright. You are strapped to it, and manoeuvred into a vertical position to see if your blood pressure can handle it. It was physically fine for me — I wasn’t sick and my blood pressure was good. But psychologically it was traumatic because I expected to be able to step off the board and instead I realised I was this great lump of meat encased in a steel body and neck brace. For a long moment, I was filled with despair. How am I ever going to get anywhere?
But there are bits of good news, and this is when it gets pretty basic. This morning when the nurse was washing my bottom I could feel it. I can now tell which of my legs she is touching. That’s a major thing, because in the immediate aftermath of the incident I couldn’t feel a thing.
I get emotional about these small examples of progress. I guess that may be a side-effect of breaking down my huge journey into manageable chunks. Being strong is partly about being emotional too, I guess. It’s a bloody pain though, when you lie in bed weeping: because you can’t move, the tears just pour into your eyes.
The pneumonia seems to be clearing, thanks to antibiotics. The food and drink controllers have given me permission to start taking liquid by mouth because before that the regime was “nil by mouth”. I was allowed to sip hot tea as a test, but then they took it away again, much to my disappointment. I have stopped fighting the system on that. There are some things you’ve just got to take your time with. That yearning for a Starbucks fades into the yearning for a cup of watery NHS tea — and I’ve reached a point where, if I can’t have these things, it doesn’t matter because I know I’ll get them in the end.
There are some funny things I am quite proud of. The nurse who looked after me when I came off the ventilator, said that I was lucid and bright, and I’d impressed the anaesthetist, because while he was talking about my condition, he mentioned ASB and I said, what’s ASB? (It’s something to do with assisted breathing.) And as he was explaining, I instinctively took her hand as if it was a reporter’s notebook and began writing down the answer. It amuses me that even post-spinal operation I was thinking of my job.
What has happened to me has changed time. Most of us who live in the busy world would find it hard to comprehend the transformation from activity to immobility. The speed of life is marked by the discipline of small events — a visit from the doctor, meals, washing, the daily journey to the gym. It is a change that is irrevocable, and, while I remain positive, something has altered deep inside me that will never be put back. Once you could snap your fingers and move mountains; and then within a few hours you are diminished to someone who doesn’t even have the strength to call out for help in the night: reduced to just a body on a board.
I’ve been thinking about the accident itself. The dangers of eventing remain a hot topic at the moment, because it is undoubtedly a risky sport and there’s been a lot of controversy around it. Zara Phillips, the current Eventing World Champion, had a good friend who was killed doing it, and even those of us who are complete amateurs are becoming increasingly aware of the hazards.
The irony of this is that the night before my accident I was reading in that week’s Horse & Hound about a new type of air jacket they have designed for riders and motorcyclists. It’s attached to your horse or your motorbike, and if you are hurled off then the airbag deploys around your body and the theory is, it prevents the worst injuries. Pippa Funnell, a great rider, said in Horse & Hound that she believes the air jacket saved her life in a similar fall to mine — a slow motion head plant, almost like a spear tackle in rugby.
But there’s no point in dwelling on the might-have-beens of my story — they get you nowhere. Instead, I am facing a long hard process ahead. It’s going to take some months, and there’s going to be a lot of ups and downs. As to the outcome, I can’t guarantee anything — but I’d love to think I’m going to walk out of here.
06-21-2012, 09:21 AM
On life after a spinal injury
When you wake from the worst of a spinal trauma, it takes a little while to realise that you’ve been left behind. Your family are way ahead of you. They’ve been through the grief. They’ve cried the tears. They’ve already come to terms with the awfulness of what has happened to you, the seismic effect of it.
For me it was different. I found myself in a two-week time-lag, still grappling with my total dependency. That is a little journey to make, a little battle to fight, and it is one I have to face on my own.
What is the difference between me and a beetle stuck on its back? A beetle on its back can wave its legs. That’s one thing I can’t do. I’m helpless – I need a collar and a brace and a hoist before I can get into the wheelchair where I can sit up and move forward. For most of the time, though, I’m in bed, and there’s not a lot I can do about that. Immobile from the chest down, all I can do is wait for the nurses to come.
But there are advances, and those I cherish. My best friend is my right arm. Although it’s quite feeble, my shoulder and the upper arm are pretty strong, normal and unaffected, and while I don’t yet have much of a grip, I have my Camelback – a water-bag with a tube, which gives me the independence to suck water in the night. That is a big thing.
It means I can lie there and rest and think, and start on this enormous psychological journey of change. What I’ve learnt is that every day, out there, is a whirlpool of despair. It is like the Corryvreckan, the tidal race north of the island of Jura, and every day I have to chart my course around the edges of it.
You have to do this deliberately, because if you get sucked into it, you can drown in despair. You cry and cry, and all that happens is that the tears run into your ears, the Elastoplast on the nasal feeding tube gets soaked, your nose gets even more stuffed up than normal, and you feel wretched. So, tears are rubbish.
I had a chat with the psychologist on the unit here and he said that people cope with these things in different ways. And they tend to cope the way they do in real life. I’m a pragmatic person so, true to form, I’m trying to be relentlessly pragmatic. I combine that with the fact that I tend to put other people first. I worry about them more than I worry about me. That’s the way I’m charting my daily battle.
What really cheered me up at my lowest point, after I came out of the acute medical period, was this: I thought it could have been so much worse for my son and my husband. I might have been killed, after all. I might have been left with a higher neck break which would have had me stuck with a ventilator to breathe through for the rest of my life. I could have been brain-damaged. In both those cases that would have destroyed the lives of Dave and Douglas, my husband and my son. As it is, I’ve got some function. I’ve got one arm that’s almost there. My second arm, well, that’s OK. The hand’s pretty rubbish but it’s almost there – it needs a bit of work. I can use a wheelchair. I won’t ruin their lives. We’ll all be able to carry on. They’ll be able to do what they want to do. I’ll be able to look after myself.
Realising how much worse it could have been for them was a real rock, a start to my recovery. Once I’d worked that out, it helped a lot. Of course, there’s a lot of self-pity around as well. But never mind. We’ll plod on.
I’ve finished my first full week of rehab. I can’t yet write properly, and I am holding my pen like a baby. But, as my sister, who is a wonderful optimist, says, I’ll just have to learn everything again, like a baby. And babies learn everything. My son tells me it’s all about positive mental attitude – PMA – so that’s what I now believe in. The young know everything.
Last week I had my first drug-free sleep, which was amazing. I can’t describe the feeling of relief. The morphine had gone from my system. I just slept naturally and woke naturally.
I’ve started going to the gym, which is an integral part of this fantastic unit. Last week I went there once a day, though even getting to it was an enormous effort. I have this horrible collar. I loathe and hate my collar. And then I wear a body brace and the two things together are like instruments of torture, which press on my breastbone. But I know that they are my passports to progress.
My right hand looks fine. I can hold things, though there’s very little power in my fingers – my grasp is limp. The left hand feels as if it has turned to stone, I’m afraid. But I still have some wrist function there, and I have learnt from the doctors that the wrist is where the power is. I look at it as it bends, forwards and back, forwards and back, and in that movement I see my way ahead.
I’m completely cut off from the world here and that’s how I want it to be. I know loads of people have sent cards and letters and e-mails and flowers and my husband has been inundated and I’m so enormously grateful to people for thinking of me, but right now I just don’t want to face up to them. I’m not yet strong enough for all the emotion. Like I say, I’ve got to chart my way round the whirlpool.
06-21-2012, 09:24 AM
We had just arrived back from the hospital, and my husband was helping me transfer from passenger seat to wheelchair, when the frenzied barking started. Across the valley from our house, a large dog had shot out of the wood and was going crazy among the sheep.
Horrified, impotent, we watched as the dog scattered the flock, then cut one out and ran it down. Dave raced into the house for the binoculars. We briefly held the vain hope the dog might be young and merely playful. “It’s a killer,” he said, handing me the glasses. I caught a glimpse of a short-haired brown hunting dog, a pointer type, tugging at the sheep’s throat. Even from half a mile away, you could see the moment at which the hog – one of last year’s lambs – stopped struggling and succumbed to the savagery. An ugly, unfair death in the grass.
Then the dog was off, beside itself with blood lust, bounding towards its next victim. The sheep were in slo-mo, short-legged, panicky. How could we stop mass slaughter? This was real life, not a silly YouTube video. There was no graceful stampede of escape, no bumbling fool in pursuit shouting, “Fenton!” I wheeled into the house as fast as I could, fingers fumbling pathetically as I reached for the phone.
No answer from Neil the shepherd. Our nearest neighbours said no, they only had a Jack Russell. When sheep, not humans, are being murdered, does one dial 999 or the local cop shop? I dialled the latter – they said they would act immediately. Meanwhile, outside, as if from the top tier of the Colosseum, Dave watched a second sheep brought down, then saw the dog hightail it after another victim. The blood spree was over in minutes. He could have done nothing to prevent it. Infuriatingly, he had lent his camera and telephoto lens to a friend.
By the time I rejoined him outside, in the primal way of things, you could make out the black spots that were crows, already pecking insouciantly at the warm eyes of the first carcass. Death is never far away as the crow flies, is it? The remaining sheep clustered, uneasy, but by the time the police arrived they had started to graze again. Peace reasserted itself. Pip, our rescue Staffie, who lives in abject terror of both sheep and humans in bad moods, stopped cowering in her basket and ventured out. I tried to comfort myself: even if I had legs and had run down into the valley, I would not have reached the bottom, let alone climbed the hill, before the killer was gone.
The officers went walkabout and found three sheep dead and one injured; grim-faced, they took statements. Dave told them the dog looked like an expensive pet. Sleek, fit. He thought he saw, through binoculars, the glint of a metal tag round its neck. We discussed the screaming irresponsibility of some dog owners.
After the police left, we looked at each other, disbelieving. “Today,” said Dave, “has been like three episodes of The Archers condensed into one. Tum te tum te tum te tum…” We’d already had one drama in the morning, from which his blood pressure was only just recovering. I had had an appointment for a routine abdomen ultrasound at our community hospital, some 18 miles away. We’d carried out the usual military operation to get there, 75 minutes allowed for a journey that would once have taken 40; had the usual experience of finding all the handicapped spaces taken by people suffering from, at worst, a slight limp, and had, as is now also customary, unloaded in the road. Transporting me is as much hassle as boxing up a horse for a show.
We’d been sitting in a busy waiting room when the radiographer had approached us, her body language apologetic. “Do you have mobility?” she asked me. “I can transfer,” I said cheerfully. “No, I mean can you walk?” she said, looking uncomfortable. “Err, not without my frame,” I said, suddenly panicky. “I’m afraid,” she said, squirming, “there’s been an administrative error. We can’t get a wheelchair through the door. There isn’t enough room to treat you here. Your appointment should have been made at the new hospital down the road.”
They say that carers build up a lot of anger and resentment they can’t often express. A red mist suddenly descended upon my dear husband; he transmogrified into Buster Bloodvessel. “How for God’s sake can this happen? A hospital where you can’t get a wheelchair through the door of the treatment room? What kind of farce is this?” The waiting room went very quiet, relishing the free entertainment; it was my turn to squirm and, lacking the ability to kick him, to dig my fingers into his thigh as painfully as possible. I yearn for an invisibility cloak; it’s bad enough being in a wheelchair without being the centre of a scene. As we left, with me muttering, “Please don’t worry, it’s not your fault,” to the poor technician, others in the waiting room snatched up their shopping bags and tucked their feet away, so as not to hinder my wheelchair. Nobody met my eyes, but looked away, embarrassed. Pity, the hardest sentiment of all. I hate it.
No one would dare pity Claire Lomas, the former high level event rider who was paralysed from the chest down (T4 vertebrae) while competing at horse trials in 2007. Claire started the London Marathon last Sunday using ReWalk robotic legs and expects to complete the course in a couple more weeks, covering about a mile a day. She’s doing this awesome walk to raise funds for Spinal Research (http://www.spinal-research.org/).
Meanwhile my beloved son, looking increasingly like one of those 118 118 chaps, is running his first marathon in Edinburgh next month to raise funds for Spinal Injuries Scotland (http://www.sisonline.org/). My heart will be with both of these heroes the whole way, stride for stride.
06-21-2012, 09:26 AM
Sometimes, the most insidious enemy I face is acceptance. Complacency. The temptation to sit back and say, well, this is just how things are now. I’ve come as far as I can. Velvety, seductive whispers in my ear: why not relax, rest, quit fighting. Stop making life more difficult than it needs to be.
The inner dialogue runs through my head several times a day, good cop versus bad cop; anxious angel versus stubborn bastard. The angel has been the dominant one in the debate recently. Don’t bother with the leg bike today, she says. Have some chocolate and read the paper instead. Give the gym a miss and have a sleep. Those arm exercises – why do you need them when you’re using your arms so much just getting around the house?
Now and again, she pats me on the back in a congratulatory sort of way, as if I’ve already crossed the finish line. You’ve done so well to get this far, she says. You’re tired. You’re middle-aged. You deserve a break. Accept your disability is massive. Start making things easier for yourself. Eat pudding. Let your friends push you up the hill. Watch telly, don’t answer e-mails. Sink; sludge; veg; soften around the edges.
It is a siren call. These are the times when I seriously contemplate giving in. Everyone with a spinal-cord injury shies away from that horrid word “plateau”; the doomy word that announces the end of progress. The plateau, I always thought, would be something obvious I would actively discover, like when you reach the top of the mountain, see the cairn and realise there’s nowhere else to go. Now, with one of those rare disconcerting insights, I realise instead that the plateau is something that might actively come seeking me: that it might be a state of mind as much as a state of body.
And so I find myself, in weak moments, gazing out of the window thinking about taking the easy road. Options like dynamo-assisted wheels for my wheelchair (they give an extra 30 per cent power). Or a fully powered chair, one that will allow me to zip all over the place without need of assistance.
The process of giving in, once begun, would be irreversible. Stop the struggle to drive a normal car; instead, get a wheelchair-accessible van that one accesses via a ramp. Ask the authorities for a hoist, on the pretext that I need it should I fall, but really so that on the bad days I can get help into bed. Sell the cottage, with its ramps between each room and its stony paths, and buy a tarmacked bungalow in suburbia. Get my carers to shower me in three minutes, instead of doing it myself in 15.
Stubborn bastard, happily, is not dead yet. As one neurophysiotherapist once told me, physio is like pushing a pea uphill with your nose. I’m determined to keep pushing it until I find my real physical plateau, not the fake summit. I’ve always fancied those mystical sunlit uplands.
Not long ago, the Olympic rower turned adventurer James Cracknell was on the radio discussing how he drove himself on after a serious brain injury. What was important, he said, was to ignore the limits other people wanted to impose. Everyone, especially medical people, he said, were all too ready to set glass ceilings for him.
Nearly two years after he was hit by a 70mph lorry while cycling, Cracknell is still in recovery and smashing the ceilings one by one. He has regained much of his memory; he’s refinding his personality and his old super-human strength. He ran the London Marathon this year and stars in a new TV series, World’s Toughest Expeditions, on the Discovery channel. What I love about him is that he’s mad, in the sense that he has refused all along to be sensible or admit defeat or take the easy option. Only by pushing himself, by defying all advice, has he found how much further he could go.
So my anxious angel can go take a long walk off a short pier. Rather than reach some soggy state of mature equanimity, I’m going to discipline myself and keep fighting. I have been slipping recently. My arms are weaker; I feel I’ve put on a few pounds. What is required now is a set of simple, hugely unglamorous rules: no more sweet or fatty food; a daily written programme of exercise – biceps curls and tricep pumps; daily numerous sit-to-stands; free-standing and walking exercises; stretching and sit-ups. Box-ticking, much as I hate it.
Recovery from neurological injury, though, is maddening, a truly petty creep from day to day. Like it or not, both consciously and subconsciously, one spends one’s entire life monitoring every movement. Is this leg stronger? Is that hand weaker? Your body can be evasive. It’s as if some bits of you take a rest for a month or so, while the little repair men inside turn their attention to fixing something else in the wiring system. Then they get going again. The thing is, there are times when I convince myself I’m on the cusp of something. At night, now, when I stretch, I can feel my body move right the way down to my toes. It’s weird, not a remotely normal feeling. I don’t sense the movement with my skin, but by the bits moving inside – the slow, weak response of muscles and sinews.
Last week, at my Riding for the Disabled session, I rode a new horse – Caledonia, a mechanical simulator. Caledonia only canters, like a rocking horse, so it was an unfamiliar motion for my new body. My pelvis and abdomen had to remember to work in a way they haven’t since before my accident. And the delicious pain that resulted over the next five days or so was in torso muscles I thought I had lost for ever. Plateau, be damned.
06-21-2012, 09:27 AM
When, last Christmas, I succumbed to various health issues, one of the things that fell spectacularly by the wayside was my communication with the outside world: letters, phone calls and, in particular, computer housekeeping. Fighting on so many physical fronts, my capacity to answer non-essential e-mails simply stalled.
I’d respond to the imperative: “Your deadline has been brought forward”; and to the plaintive: “Mommers… pretty please, I’m destitute.” (NB, this from my undergraduate son, not a scammer.) But the rest of the messages? I’d scan the top couple of lines and then herd them into a dark recess in my consciousness, where they huddled, glowering at me. Next week, I’ll start answering them, I’d say to myself. Next week.
Next week never came. I was blocked.
Or, if you’re not into cod psychology, totally undisciplined. Only now, four months later, have I scrolled to the bottom of the pile, about 750 deep, and begun answering. Dear readers, you are wonderful. Thank you for your kindness and your patience: and if you haven’t yet heard from me, you will. By 2015, I promise.
The exciting thing is that some of the e-mails I’ve read – so far, I’ve cleared the backlog to the beginning of February; awesome or what? – contain precious nuggets of hope and information. One, which makes my heart sing, is from a man who, like me, suffered an incomplete spinal cord injury in his neck six years ago. Our levels of damage are broadly similar. There is a myth he wanted to bust.
“Firstly, the two-year so-called neurological ‘window for recovery’,” he wrote. “I was told this too. While I know that we are all different, and albeit infinitesimally slow, I have continued to improve six years after the injury. In fact over the past year, the pace of improvement has increased markedly compared with that over the first two years.”
Four years after his accident, my reader met the surgeon who carried out the operation on his neck, who was impressed with his gain in arm and hand function. At their previous consultation, his patient had no triceps function, no wrist extension and no finger/thumb pinch action. My reader asked him about the two-year window of opportunity.
“Ah, well,” said the surgeon. “We’ve changed our tune. We now believe that the brain can create new neural pathways to bypass the damaged area and that recovery can continue indefinitely.”
My correspondent wonders whether the two-year period might be a self-fulfilling prophecy, simply because most people give up as a result of the received wisdom. “But we’re not going to give up, you and I,” he wrote. “We’re determined, obstinate and stubborn; we’re not going to believe what the experts say because we know better. We have strength from within. We’re some of the band of ‘incompletes’ who will keep on plugging away. Even if it takes years we will improve – although we don’t know what the end result might be. One thing’s for sure – if we don’t keep trying, we certainly won’t find out. We have to make our endeavours an art form, a culture. We are going to progress from walking in a gutter frame, to a Zimmer, to a wheeled rollator and to walking poles and then, who knows?
“We are going to improve our hand function and improve the sensation in our fingers. We will! I also believe that a cure for spinal cord injury is maybe five years away. Whether from stem cells, nanosurgery or robotics, it’s going to happen. We must therefore keep flexible and stop contractures setting in.”
Wow, I’ve found someone more evangelical than I am! And just to reinforce his message, I can tell you that my left shoulder, which was very restricted compared with my right, has recently loosened up. I have better reach, can hug harder, and best of all my left thumb has regained a tiny amount of grip. I can actually hold a mug of coffee with my left hand and lift it safely to my mouth. Last week, with the help of two physiotherapists and my frame, I managed standing transfers from wheelchair to bed and back – instead of bumping over on my bottom; and, also for the first time, walked on my Zimmer up Everest. Well, nearly. It’s the longest, steepest ramp in the house.
As for the matter of keeping flexible, there was an e-mail in my pile from a Times reader in England who asked me if I had heard of the GlideCycle (glidecycle.com (http://glidecycle.com/)). Designers in Oregon, the world centre of bicycle innovation, have invented a remarkable machine which allows those with mobility issues to get exercising again. Amputees, the morbidly obese, baby-boomers with worn-out joints, the wheelchair-bound, and some of those with spinal injuries and neurological problems can start to exercise aerobically again.
It’s another genius bit of marketing; a glossy reinvention of the wheel. Just as the multi-million dollar mountain bike industry resulted from big boys indulging a little boy passion to cycle off-road, so the GlideCycle is a grown-up version of kids scooting along without pedals, letting the seat bear their weight and their legs do the propelling. It comes in two, three or four-wheel versions and is endorsed by one spinal consultant in Oregon as “one of the most exciting things I have seen since Botox injections for spasticity ten years ago”.
I e-mailed my brother, who lives in the Pacific North West, about it and, weirdly, he had just seen one the week before, driving through Oregon. “I wondered what on Earth it was,” he said. “Now I know.” And now spinal units over here know too, so there’s no excuse: let’s see some GlideCycles imported for rehabilitation. Gosh, me in the role of information queen. I feel quite cutting edge.
06-21-2012, 09:30 AM
On my right leg, just down from my kneecap, are two rough blue crosses. They look like DIY tattoos, inflicted while drunk. Janice, one of my carers, gave me the special skin marker pen for the job – the kind you see surgeons wielding in Embarrassing Bodies, sketching round flesh that needs to be removed from some benighted soul.
Every day, I roll up my trouser leg, stick a wired electrode on each crude mark, turn the dial on a handheld machine, and gently sizzle. It’s not comfortable, but it’s not painful. The electrical stimulation, placed on the nerve and the muscle, makes my right foot flex up towards the ankle for 15 seconds, then releases it, then lifts it again. Off, on, off, for half an hour, or for as long as I can stand it. Think Carrie Mathison in the last episode of Homeland. Only it’s my foot, not my head. And obviously there’s no threat to national security.
The results are heartening. Every day, in a minuscule way, as I do my slow-motion Zimmer walk across the living room, my right foot is becoming more obedient. Now I’m trying to improve the quality of my gait, rather than just get from A to B.
Blown away by the recent sight of the paralysed ex-eventer Claire Lomas, who conquered the London Marathon in a ReWalk robot suit, raising more than £100,000 for Spinal Research, I am striving to walk with my legs wider apart, to stop my feet catching against each other. Forget catwalk flouncing; I need to waddle. The more duck-like I become, the less energy I will expend.
FES, functional electrical stimulation, applied to my limbs, has been an integral part of my ongoing recovery. I owe it so much. In the spinal unit, I had literally hundreds of hours of it to strengthen the muscles in my legs, buttocks, wrists, abdomen. Wired to the device, little bigger than a smartphone, I would watch bits of my body move by themselves.
The machine fired up the paralysed muscles, reminded them what to do, stopped them wasting away. And ever so slowly, after the electrodes were removed, the muscles began to respond when my brain commanded them.
So much did my therapists believe in the intrinsic value of FES, one of them fantasised about creating a whole-body suit for newly injured spinal patients. The system works by stimulating the nerves that supply muscles paralysed by central nervous system lesions.
For all this, I have discovered, we can be grateful to a wonderful man called Hugh Glanville, the first professor of rehabilitative medicine in Britain. In the Seventies, as an expert in physical medicine linked to engineering, electronics and physics, he was involved in pioneering FES trials in Yugoslavia, and then introduced the method to the UK. FES has helped countless people with stroke, spinal cord injury, head injury, cerebral palsy and multiple sclerosis to regain mobility and, in some cases, speech. Thanks to Glanville, many disabled people walk normally today because of a dropped-foot stimulator strapped to their leg beneath their trousers. Taking a stride triggers the FES device, lifting up their toes and stopping the foot from dragging.
Because of him, the National Clinical Centre for FES opened at Salisbury District Hospital in 2007. Salisbury now runs the largest FES service in the world and established Odstock Medical Limited, the first NHS-owned company in England, to promote and distribute FES products.
Glanville, who dedicated his life to helping the disabled, died a few months ago at the age of 95. A modest man, his legacy is huge but in the main unacknowledged. His daughter Felicity recently contacted me to say he had followed my story and how pleased he had been that FES was helping. “Latterly,” she said, “he was very disabled due to a hip that could not be operated on, and spent his last few years in great pain in a wheelchair. He dealt with his increasing problems with great humour and could identify with every single one of your experiences. He would be delighted with your recent progress.”
Forty years after Glanville’s far-sightedness, wouldn’t it be great if some leading rehab specialist could pull off another coup – and capitalise on the buzz Claire Lomas has created around bionic legs? The sooner these robotic devices can be used as part of the NHS package of therapies for suitable spinally injured patients, the sooner they will be proven, refined, reduced in price and brought closer to the reach of ordinary people. I know this is controversial, with many physiotherapists wary of creating false expectations amongst those who, because of the nature of their injury, or their income bracket, cannot benefit, but that to me is similar to refusing to stream children by ability at school. Who knows what one can achieve unless one tries? Much the same negativity could have greeted FES in 1970; we are all lucky that Glanville took a leap of faith.
My good news this week is that my left thumb has started to develop the merest beginnings of pinch power and movement. I use the word “power” loosely, as everything is relative; my thumb is now strong enough to grip and rip a section off a roll of kitchen paper. But it’s a start.
And there is other happiness. A tiny baby siskin, as scruffy as a burst tennis ball, has arrived at the bird table. His legs are hardly visible under the fluff. He is childlike in his innocence, stuffing himself on niger seeds at our feet, refusing to fly away until the last moment. We have named him Stumpy. Protecting him is, suddenly, the most important thing of all.
06-21-2012, 09:31 AM
Once upon a long time ago, at the bottom of a sixth-form school report, one of my teachers described me as “a very smiley person”. Not “extraordinary genius”, you note, or even “diligent”, or “thorough”, or “showing FTSE 100 leadership skills”. Just “very smiley”. The words have stayed with me down the years. Because I do smile a lot. Smile when I’m happy; smile when other people are happy; smile to defuse aggression; smile when I’m embarrassed, or lost, or shy; smile when the dog bares her vile, honky fangs and grins her ghastly grin at me.
These days, most of all, I smile so that people think I’m happy. If smiles are the weapons of unarmed people, they are also an effective defence behind which the badly hurting can hide. Sometimes – often – behind the mask I’m a miserable, mean old git.
On the dark days, of which there are a few, there emerges a gnawing jealousy towards the people around me. Good friends come to visit, to distract me with chat and news, but when they get up to go, deep inside me I feel envy flare. Look at them, in their lean jeans and pretty boots and stylish jackets; see how smoothly, effortlessly they rise from the sofa, bend over to kiss and hug me, rummage for car keys in fashionable handbags, dance out of the door, down the steps. They’re all 40 and 50-year-olds who look like thirtysomethings. Like I used to do.
I lean forward in my chair and peer wistfully through the bottom half of the French windows as they leave, big smile fixed, waving my knuckles at them. I watch them spring into their cars – how easy they make it look, sliding in behind the wheel; I mean, do they have any concept of how impossible it is to pivot one’s hip out like that? – and then they’re off, checking their phones as they go. And I know, because I was the same, because they’re go-getting women with hugely busy lives, that before they’re through the gates they’re already focused on the next task in hand. And in a horrible stew of conflicting emotion, on these days I love my girlfriends and I also hate them and envy them; because they’re free and I’m in prison.
On bad days, when I am out in busy places, I find myself watching strangers’ bodies with a secret flame of resentment. This is the dark side of disability, little talked about: the undercurrent of dislike towards the able-bodied. I eye young women carrying mountains of excess weight and want to scream: “Do something about it, you stupid creature. Now! Because you have a choice. Inside you have a body that works.”
Similarly, in the street one spots so many faces wearing the impression of a permanent bad smell; people who scowl; who shout at their children; who moan about the food or the weather. And I want to confront them and say: “Smile. Because you are blessed with a body. And if you don’t enjoy it you are wasting your life.”
One can watch athletic people through the same unpleasant prism: out driving, I pass cyclists on the road, Lycra-clad sinews pumping, and I throb with envy. I pass leisure runners, begrudging them their lightness of being, the sweetness and easiness of their stride.
Then there is the inescapable sexual jealousy. In the really dark times, you cannot shake off your loss of sexual identity. I’m not a woman any more; I’m a lump of meat with tubes coming out of my stomach; with skin that doesn’t feel and iron-clenched thighs that require a strong physiotherapist at each knee and a hydraulic car jack to pull apart. Living in a society full of sexual images, one feels an immense yearning, jealousy, dislocation. This, I suppose glumly, is part of the ongoing process of bereavement.
I force my husband to have The Conversation yet again. “I don’t want you to be my carer,” I say. “I’m trapping you. This is not fair on you. You married a younger woman second time round so she could push you to the pub when the time came; not vice versa. Your expertise is in undressing women, not dressing them.
“Go,” I continue. “Be happy. Love means setting someone free.” (Wasn’t that the second best line in Love Story?)
But I mean it. There is a court of opinion that gets very judgmental about partners who leave after a catastrophe strikes their loved one. In the past I never felt that way – believing some men, some women, some relationships, simply aren’t built to cope; and in my present situation I am even less judgmental. Those who leave are not bolters; are not necessarily weak or bad or dishonourable.
But he’s angry with me. “Don’t be so bloody stupid,” he says. “You’re stuck with me.” Sobbing, jealousy-racked, I accuse him of flirting with a beautiful, sophisticated friend of ours. He looks appalled. “You know I’m a flirt. Besides, she’s right out of my league,” he says.
By now I am hyperventilating, hiccupping with grief. “That is not what I wanted you to say,” I howl. “Only a man could say that.”
“Well, it’s true,” says Mr Sensitive, acting perplexed. “Mind you, in the unlikely event of a 25-year-old blonde coming up and trying to seduce me, I might succumb. But on the whole I think I would prefer a pint of best. Can’t you take some more antidepressants and snap out of this?”
So I guess I just have to choose my quote and keep smiling. Either the world always looks brighter from behind a smile. Or, as WC Fields once said, start the day with a smile and get over it.
06-21-2012, 09:33 AM
It’s a shame this issue of the magazine doesn’t have scratch and sniff pages, because nothing would evoke the Jubilee better. Smell takes you back in an instant: to the Fifties, and the fusty, elderly floors we crawled on, the muskiness of our mothers’ fur coats. The Sixties smelt of coal-tar soap and wet dog; the Seventies of Southern Comfort and Camels; in the Eighties, it was vin chaud and melting raclette. The Nineties were scented by clean baby and Sudocrem. And so on.
If personal history is catalogued in olfactory memory, then my bet is the Queen marks the decades by the dense walls of perfume that she has to walk through. After all, if you’re going to meet her, it’s what you do, isn’t it – dress up and douse yourself in your best scent? Her Seventies must have reeked of Opium. And the Eighties? You can imagine her kicking off her shoes of an evening: “Philip, one more lungful of Poison and I shall abdicate.”
But there are constants too. Some people contend the most familiar smell in her 60 years on the throne has been that of fresh paint, but I disagree. I reckon it’s the heady, addictive whiff of horses. I’m sure it’s what keeps her going. You wonder why she beams as she trundles along the Mall in her carriage? Because that delicious aroma of fresh dung, leather, saddle soap and hot, sweet horse is filtering through her gills like a basking shark feeding on plankton. Eau de Household Cavalry has been her sanity for 80-odd years.
I recognise this, of course, because I adore the same smell. An eclectic band, from HM to Katie Price to millions of little girls, many now middle-aged, belong to this faintly embarrassing masonic sisterhood. How it strikes is a mystery. Maybe it’s a cult; maybe a virus; some (men, naturally) think it’s down to erotic obsession and fetishism. Whatever. Our brains are totally washed; a flame of passion ignited. One woman brave enough to break cover recently is Susanna Forrest. “I was imprinted like a goose when I was only a few months old,” she admits in her delicious book If Wishes were Horses: A Memoir of Equine Obsession.
In 1969, academics found that, among little girls, playing horses was almost as popular as playing hospitals. (Now, granted, probably more playing X Factor.) Forrest says: “Across Europe, North America and Australasia, millions of little girls galloped, snorted and pawed the ground as their mothers had done before them, dreaming of one birthday morning when they’d wake up and there would be a pony picking at the lawn under their window. And nobody questioned this. Why? Where does it all begin?”
Why indeed? My earliest memories were of riding the back of the sofa, a skipping rope for reins. Or roping my amiable big sister, so I could drive her up and down and around the garden. The afflicted will share these universal memories. There was a real live animal to base the fantasies on – Polly, my cousin’s pony, who lived at my grandmother’s home, where we spent our summers. Polly was an epic presence in my life: I worshipped her. If I was good, I was allowed to open the door to my cousin’s tack room, a walk-in cupboard, where I would spend hours breathing in deep drafts of saddle soap, gazing longingly up at the forbidden treasures – martingales, bits, reins, double bridles, cruppers, crops, side reins. Some psychologists apparently identify this as “stuff fetishism” and the sado-masochistic trappings of domination. All I can say is, what a kinky child I must have been.
Back home, as soon as I could hold a pen, I drew pictures of horses compulsively on the back of unwanted engineering drawings my father brought home. My parents, although wary of this strange madness, grudgingly fashioned for me a hobby horse, made from old leather and a broom handle, whom I immediately christened Polly, too. With her, I felt complete; fulfilled; fused into a centaur which would paw the ground, neigh and prance and canter everywhere.
On family journeys, one escaped from the boredom of the back seat of the car or the train to gallop across country alongside, soaring over huge hedges and ditches for endless miles. Every horse-mad little girl I know did the same. As Forrest says, horses made reality better. A horse embodied the liberation inherent in all fantasy. It freed you from the mundane.
When Polly disintegrated from wear and tear, I moved onto imaginary steeds. Now I was bounded only by my imagination. I created a vast stable of animals: blacks, bays, greys and chestnuts. They all had names and personalities and shared the ability to jump over the Moon. Inspired by Pat Smythe’s Jump for Joy (borrowed from the library every second week) I created Olympic courses in the garden – spreads, oxers and triples built from flowerpots, dustbins, broom handles, canes, hoes, shovels, upturned buckets. Hours were spent competing against myself on different horses; I can’t remember when I stopped, but it may, tragically, have been as old as 14.
Forty years on, body irretrievably wrecked by falling at a jump – sometimes one should not dwell on life’s ironies – I am a centaur again, practising for my first para-dressage competition on Nelly next week. Sara, my teacher, is pleased with me. “We have crossed a line,” she says. “Up until now, I taught you with my eye on your vulnerabilities, always ready to intervene. Now, I’m teaching you as I would any horse and rider, trying to create improvement. We’ve been set free.”
Indeed. And in my little girl’s head, I am not only free, but living the fantasy once more. The smell of leather and hot horse, I’m glad to say, is as good as it ever was.
06-21-2012, 09:34 AM
So the boy ran the Edinburgh Marathon for me, in 25C heat, fighting through every brutal, sun-drenched stride because he wanted to share my pain and my hurt and my battle. Not that I’m biased or anything, but I’m still glowing with pride at his achievement, because at 6ft 5in and 14-odd stone, he’s built as a second-row forward, not a marathon runner, and despite the flat course and the sea breeze, he admits it was the hardest thing he’s ever done.
He finished in 4 hours 28 minutes, with blood stains down the front of his T-shirt from his shredded nipples – “This means I will never be able to feed my children!” – and in the process raised about £3,000 for Spinal Injuries Scotland. His student friends, wonderful people who have sustained him through the rocky times since my accident, were at the finish with a banner saying, “Hurry up, Dougie – beer misses you”.
One of his flatmates had calculated that someone of his height and weight would burn 3,160 calories during the course of the race, which they then discovered was almost exactly the same number of calories as is found in a giant Domino’s pizza: the standard per-person, post-hard-night-out cure for a hangover in student circles. (Which strikes me as a fairly terrifying commentary on the problematic balance between fast food and exercise; and a ready explanation for obesity, should anyone in the Department of Health want to short-circuit years of expensive research.)
Earlier, while we waited for him, baking in the sun at the finish – my sincere thanks to the organisers, incidentally, for getting me there on a day when parking was controlled with military precision – one of my dear friends from the spinal community e-mailed me. “Just thought, while listening to Desert Island Discs, that being in this state is like being on a desert island with no chance of escape… ever. What would your luxury be?”
Right at that moment, my luxury would have been the ability to climb out of my chair and lie on the grass like everybody else, smelling the earth. I could just about cope with my secret feelings of envy towards all the exhausted, exhilarated runners stumbling through the finish; this absurdly wonderful parade of physical achievement. But the inability to sprawl spontaneously amid the daisies was like a physical ache.
Anyway, it’s been a pre-Olympic purple patch for the family. Dougie completes his first and possibly only marathon; his mother takes part in her first dressage competition as a tetraplegic. The test was at level 1a, for the most physically disabled riders; the competition was a Riding for the Disabled Association (RDA) regional qualifier at my centre in Bannockburn. All I had to do was scrub up, be hoisted onto dear Nelly and then be judged walking her in straight lines and circles.
Unofficially, it’s the Watching Paint Dry end of the sport – no trotting, no cantering, no music and most certainly none of the extravagant stuff you might expect if you’ve only ever seen dressage on telly: piaffe, passage, half-passes, flying changes. No, from the ratings point of view, this was the opposite of spectacular, a grey-faced woman, frozen but for the flappy elbows, steering a kindly mare around a riding arena at a very slow pace.
There was, I suppose, a bit of frisson. Nelly was in season, at the mercy of her hormones, on constant lookout for a stallion, and in order to keep her settled during the competition, a pony was brought into the indoor school as her companion. In human terms, you might describe Casper as a walker, the kind of non-threatening, asexual man friend Nancy Dell’Olio might take to parties while she hunted for prey. White-haired and gelded, he stood bored in a corner, oblivious to Nelly’s bottom-wiggling. In the event, the mare behaved impeccably and my profound thanks go to the lady who stood so patiently holding Casper while I rode – but then the RDA never ceases to amaze me with the dedication of its volunteers.
My dear friends turned me out well, grooming the two-year-old stains off my riding jacket, tying my stock (neckerchief) for me, admiring my inspired imitation breeches, £4 oatmeal leggings from Primark, chosen because they’re stretchy enough to conceal a urine bag. And lastly they put my hair in a net; giving me the timeless haughtiness of all horsewomen under hats.
Hairnets. I had a flashback, fleeting, stabbing. The neck brace. My dinner-plate-sized view of the sky. Just away from the whirling rotor blades and the A&E doctor’s face, leaning close; warm, friendly. “You are about to go into the resuscitation room. It will seem very busy and noisy but don’t be alarmed.” And then, amused, she was disentangling something from my head, dangling it where I could see it. “What this?” “A hairnet,” I explained. “To keep my hair tidy under my hat.” Tidy above an exploded spine. How silly, how eternally poignant, the minutiae of normality alongside utter, screaming catastrophe.
Live in the now. Enter at marker A, at X halt, immobility, salute. Proceed in medium walk, track left at C. The discipline of remembering the dressage test and riding the mare with what function I have left wipes my mind clean of corrosive things. Evidently, I show more promise as a disabled rider than I ever did able-bodied. The kindly judge gives me 69.4 per cent, a respectable score; in fact, one of the best I’ve had in my life. And because I’m the only entry in the class, I get the red rosette. We are both first and last, Nelly and I. And every bit of it is down to her, to the unfathomable generosity of the horse.
06-21-2012, 09:40 AM
To Versailles, then, and the city hall, a château on a scale as grand as anything ever commissioned by the Sun King. It is heady, exotic stuff for me, liberated from my hinterland of hospital and Scottish hillside. We are in a palatial upstairs room, gilt paint cascading from the achingly high ceiling.
The mayor in his tricolour sash is conducting the marriage ceremony, while the heat and the sound of sirens drift up to us through the tall windows.
My nephew and his bride shimmer with happiness, and everything is effortlessly French: the sharp, understated look of the men; the elegant hipbones of the women; the perfect demeanour of their toddlers. I reckon they must sedate them. It’s the only explanation. One beautiful little baby overbalances hard onto her face – splat! – just as the vows are exchanged: instead of starting to squawl, as every British infant would, she merely looks very solemn and reaches out her arms to her mother.
Being there to share all this was, I reckon, a fair achievement. The effort of getting me to France and back resembled nothing quite so much as air-freighting a large circus animal. Most of the time that’s exactly what it felt like, minus the sawdust. All the while repeating, for the sake of my beloved family, my mantra of survival: look upbeat; keep smiling.
But, oh Lordy, the planning, the parking, the quantities of heavy luggage, the just-in-case medical paraphernalia. The car-hire booking that had to be changed because I completely forgot about my wheelchair and shower chair and chose far too small a vehicle. Without my husband, my son and his girlfriend working as a team on my behalf, the trip would have been impossible. Without the kindness and co-operation of the airline and the special assistance ground crew, ditto.
One hears horror stories about flying as a wheelchair user; recently a businessman told me of the scandalous behaviour of one crew who refused to fly him on the grounds he could not walk to the emergency exits. For me, easyJet were considerate, as indeed were ground staff in Scotland and at Paris Charles de Gaulle, but nothing can eradicate the humiliation of being manhandled in and out of aircraft seats. Nor can anything remove the constant anticipation of that humiliation, which leaves one dry-mouthed, weak and stiff, from the moment one leaves home in the morning until one arrives at one’s destination. As the pace of life spins ever faster, as aircraft have less and less turnaround time on the tarmac, so the pressure mounts on the halt and lame. If truth be told, I suppose I feel perpetually embarrassed by my special needs. Are disabled people allowed to admit this; or must we always be strong and assertive? Am I betraying the brotherhood of the legless?
International travel taught me, a novice, certain important lessons, which are as follows:
1. When the disabled lavatory is occupied at a busy airport, the odds are it will be by a perfectly able-bodied person, who will have been doing a lengthy private poo. This person may look slightly guilty when they come out and see you waiting. The truly brazen will hold the door and usher you into a wall of stink.
Now loos, I accept, are a difficult moral issue, somewhat less clear-cut than stealing disabled parking bays. Most people, if they’re honest, will admit they use disabled toilets if there are long queues elsewhere or if they fancy some privacy. It’s a little stolen perk, isn’t it? No one will see. Once upon a time I used to nip into disabled loos myself, with only the merest flicker of guilt, so I can’t criticise. Now, were I magically to regain full mobility, I would never use them again. My perspective is radically altered. It’s about respect, simple as that. But you don’t understand that until it happens to you.
2. Security staff at international hub airports are much colder than those at provincial airports. Someone has told them that smiling compromises safety. You must leave your own wheelchair and be transferred into a low, tiny, open-sided chair from which your knees flop sideways like a drunken giraffe’s. You must remove your pushing mitts, your jacket and then be hauled up off the seat by the arms so they can pass a scanner under your backside. Your main concern will not be indignity – they are doing their job – but the fact your spouse is close to exploding with rage and you fear he will be thrown off the flight.
3. People who purchase speedy boarding tickets are generally rather horrible.
4. Generalisations are usually true.
5. Flights to Lourdes could be more sympathetic. But who wants to go to Lourdes?
6. One, if not two, young people in possession of a good sat-nav are an essential accessory. Said kids, blessed with fearlessness and confidence, are thus able to navigate a strange car across Paris in the dark in the perpetual rush hour.
7. A Citroën C4 Picasso is not so much a car as a computer game. Hire one at your peril unless you have No 6 (above) readily available.
8. Do not allow one’s husband to practise his French on smart women of indeterminate age wearing white lace who linger outside city halls watching weddings. Dave’s liaison dangereuse at Versailles was a deranged Miss Havisham, who claimed she’d been waiting eight years for her lover to turn up to marry her. She latched onto him, fingering his kilt, peering into our hire car, demanding “musique irlandaise”.
9. Most importantly of all, avoid making comparisons during the trip between how the old you and the new you would have done things, for that way lies unfathomable pain.
10. Finally, if in doubt, remember: East, West, home’s best.
06-21-2012, 12:52 PM
Many thanks F.P.F.
06-23-2012, 07:50 AM
Ditto - inspiring. xx
10-07-2012, 09:11 AM
Something has come up. I am in trouble, threatened with criminal action that carries a maximum penalty of an unlimited fine or two years’ imprisonment – or both.
I’m writing this column as a pre-emptive plea for mitigation, on the grounds that I have no previous criminal record and am, I hope, of good character. Plus, I trust that some of you will write to me when I’m behind bars.
And no, it’s not a joke. The letter arrived out of the blue, with that portentous whiff that said it meant business. “On Her Majesty’s Service” on the envelope and all that. It was from Simon Hack, head of enforcement at a government agency, the Veterinary Medicines Directorate (VMD), and to say I found it threatening is something of an understatement.
My name, Mr Hack hissed, in a Putinesque way, was on a list of 4,000 people who appeared to have purchased unauthorised veterinary medicines. Under the Veterinary Medicines Regulations, it was an illegal act to import or possess such a product, making me liable to both a large fine and imprisonment.
He warned me: “Although the VMD does not intend to recommend an investigation which may lead to criminal proceedings against you at this stage” – I liked that little touch of menace, “at this stage” – “this decision may be reviewed if further information comes to light… the fact this letter has been sent to you may be taken into account in deciding whether or not criminal proceedings should be brought against you at a later date.”
Mr Hack wasn’t done. “The VMD’s decision not to carry out… criminal proceedings at this stage does not bind any other prosecuting authority, which may take a different view.” In order, he said, “to close the case”, I was asked to sign and return to him a personalised document which basically acknowledged my guilt.
Well, it was the kind of letter that makes you feel like a terrified first-former summoned to the headmaster’s office. I sat up as straight as a broken neck allows, heart beating, and started raking through my memory. Was this a case of stolen identity? Was I losing my marbles? Was someone in the family a secret ketamine dealer? Then, from the mists of time, I remembered. This must be about Dermobion. The magic green antibiotic cream for horses. Pricey, but a small amount stopped cuts getting infected and knocked out mud fever on their legs overnight.
As a welfare tool Dermobion was, in my experience, incomparable – especially in a part of the country with wet, muddy winters when horses’ heels are vulnerable to skin infection. But naturally, as with all of the most effective horse drugs, it had been banned about seven years ago under EU rules on the grounds that it might get into the food chain and “raise the spectre of unnecessary antibiotic resistance”.
Which is of course wholly specious, because leisure horses in the UK, unlike the rest of Europe, don’t go into the food chain, unless you count dog food as the food chain, and that would mean you’d have to eat dogs. And I’m not sure that’s permitted under EU rules either.
Five or six years ago, therefore, after I had eked out the last tube from my vet, I went on the internet and bought a tub of Dermobion for about £50. That was it: one tub and I used it so sparingly I hadn’t finished it before my accident two and a bit years ago. I didn’t, until this letter arrived, have the foggiest idea I was committing an illegal act. Nevertheless here I was, a small nut cowering beneath a sledgehammer.
Fellow taxpayers, maybe my perspective is criminally skewed, but do you know about the Veterinary Medicines Directorate? It became an executive agency of Defra in 2001 and it spends £3.5 million of our money every year, along with £7 million it gets from the veterinary pharmaceutical industry (pays the wages; interesting, that) and £4 million from the food industry. Pharmacovigilance is its watchword.
And its actions may all be very worthy, but in this case they seem utterly ludicrous. We have streets awash with illegal drugs, and legal prescription drugs – methadone, diazepam, etc – being dealt illegally. Ketamine, a horse tranquilliser, is a popular clubbing drug destroying young people’s health. Teenagers die with tragic regularity from the “legal highs” they buy over the internet, with manufacturers always ten steps ahead of the leaden-footed authorities. Viagra is offered for sale to millions through every friend’s hacked Hotmail address.
Our prisons are full of inmates doped to the eyeballs, illegally, but everyone accepts it. The Deputy Children’s Commissioner tells us that child exploitation is taking place in every hamlet in the land. Elsewhere in the animal world, the rescue charities will tell you there is a worrying increase in cruelty and abandonment.
And the VMD is menacing poor bloody horse owners like me who half a decade ago committed the heinous crime of buying a small pot of cream to get the best treatment for their animals. Not exactly proportionate, is it? But me and my 4,000 co-criminals are the ultimate soft targets. Maybe it’s because we’re easier to tackle than real problems and targeting us justifies the VMD’s use of public money.
Dear Mr Hack, I refuse to sign and return your nasty, officious form seeking confirmation of my illegal actions. You can contact the Director of Public Prosecutions – or the Procurator Fiscal, as I’m in Scotland – and see whether they think it is worth bringing charges. I suspect, from a taxpayer’s point of view, they might consider it a risible waste of public money. Just like your heavy-handed letter.
Gosh, I feel so much lighter having got that off my chest. I think I’ll go and practise some sit-to-stand on my Zimmer before the police arrive to take me away.
10-07-2012, 09:13 AM
Nobody ever told me that bird-watching would bring moral dilemmas about the supremacy of different species and a human’s right to interfere with the natural process. Nobody warned me there is no Equality and Human Rights Commission for birds.
Here’s the thing. I am a witness to mass murder. The songbirds in my garden have been massacred by great flocks of rooks and jackdaws. My new life of stillness, sitting and watching, means that over the past two or three weeks I’ve seen the phenomenon several times: this ethnic cleansing, this scorched-earth policy, as a noisy maelstrom of big black corvids have swept around our garden, dive-bombing the trees and bushes. This wasn’t a smallholding in Stirlingshire; it was Srebrenica. You could practically hear the crunching of the fledglings’ skulls as they were snatched.
After the blitz, the little birds were wiped out. The vast array of fledglings that had been peppering our bird table and the garden vanished. Stumpy, my baby siskin with the look of a burst tennis ball, was an apéritif for some ruthless rook. His fellow siskins have simply disappeared; ditto the greenfinches, the goldfinches and the dunnocks. Only a tiny number of tits and young chaffinches remain – and they’re two of the most common songbirds in Britain.
Down our lane, between the fences, plentiful little ground-nesting birds – I’m too new to this game to know what they are – used to flutter, pretending to be broken-winged, in front of the car bonnets, trying to distract the shiny monsters away from their nest. Before my accident, I used to get impatient sometimes at how much I had to slow down to avoid hitting them. Now, for the first year I can remember, the lane is devoid of little birds. There are only the rooks and jackdaws perching on every fence post, alert to every movement in the long grass, laconically stirring only when the car is upon them. They are afraid of nothing, these predators. They lie in wait, like orca whales plotting to wash the seal off the iceberg.
In fields around us, where in the past we used to see curlews and lapwings, now there are only vast flocks of rooks – far, far more than there used to be – picking at the ground. What ground nests could possibly escape?
And it’s the silence that is so sad. Where once the garden was alive with birdsong, since the massacres it is spookily quiet. The dawn chorus has practically stopped. Instead, in the distance around the valley, there is the wheeling cacophony of the thuggish gang, quartering the fields, cleaning up all dead and living things as they go. I witnessed them the other day, carrying out a well-coordinated raid on an overgrown hedgerow at the bottom of the field, several dozen of them tumbling into the foliage as if it was a lunch stop at McDonald’s.
Now I know rooks are amazing, funny, joyous birds, proven to be as bright as chimpanzees. I know this because the wonderful and wise Simon Barnes told me so. Oh, they’re clever all right. But from where I sit, as useless as a UN observer, they are also murderous bullies whose numbers are expanding hugely, and something seems unfair and out of balance. So stuff moral dilemmas! They ate my babies! I want a Nato no-fly zone enforced. I want a shotgun on my lap, so I can sit and guard the countryside like some wild-eyed, trigger-happy, tetraplegic redneck.
But I gather it is politically incorrect in the bird world to say what I have said; taboo even. Only a group called Songbird Survival appears scientific enough to point out that population levels of predators such as cats and corvids have doubled in 40 years, while numbers of farmland birds have fallen by more than half. It is funding the first large-scale corvid removal experiment to examine the impact on bird populations.
Baby birds aside, I have been in an emotional trough recently due to a perceived lull in progress. Everyone tries to convince me otherwise, reminding me how exhausted I am, but I feel frustrated, angry, scattergun. Time to narrow my focus. Back to basics. This week I’m practising sit-to-stands from my wheelchair to the Zimmer. Up and down, grindingly effortful. But I notice that once up, I feel quite steady on my feet, and for the first time I am able to let go of the Zimmer with both hands. I’m free-standing, relatively secure in my core strength and my knees. Count the seconds… one… two… three… four… five.
Five seconds standing still, upright, hands-free, totally unsupported. Time for a grim smile. Four years ago, on the very same weekend, I managed to walk 54 miles in 22 hours when I did the RBS Caledonian Challenge, the mammoth charity hike through the West Highlands. Which of the two milestones, exactly, required more mental and physical courage? I’m not sure.
This year’s challenge took place in teeming rain and wind, making it a serious test. There were nearly 200 teams from all over Europe, with the fastest group finishing in a superhuman 12 hours and the majority completing the course in 24 hours. One team, the Blithering Idiots, raised more than £13,000 towards the £700,000 total to benefit Scotland’s more isolated communities.
I thank, admire and hugely envy them all, and I’m especially grateful to the teams – the all-women Blisterhood among them – who entered after I wrote about the event in early January, exhorting people to get up off their weekend sofas and push their bodies while they had them. What the participants did was magnificent; a supreme achievement that they will remember until their dying day. Plus est en vous – but you don’t know it until you try.
10-07-2012, 09:15 AM
Even after more than two years, every morning on waking I endure the cruellest split second. In the blur of semiconsciousness, before logic clicks in, I wonder if I’m cured. The first stir, the first attempt to move and feel, is a daily test. Maybe there will have been progress. Maybe overnight things will have improved. Maybe, as I stretch my right arm for my alarm, my fingers will uncurl, my knees will bend up.
It only lasts for a moment, this surge of hope. Then I’m awake and I feel the non-feeling; the now familiar inertia; the weird sensation of tendons and muscles flickering inside my legs, but no feedback of any kind from my skin. One leg could be hanging over the side of the bed – I would have no idea until I threw back the duvet and saw it.
So every morning I relearn the same harsh lesson. Yes, kiddo, you’re still paralysed. You didn’t fit the glass slipper and you missed the coach. Nobody’s lifted the spell. You’re still as anchored by your own body as you were last night. There are no miracles. Just get into fight mode for another tough day.
Will it ever stop, I wonder, this delusion? Do you get to a point with a spinal injury where even your subconscious gets sensible and accepts that, whatever recovery is possible, it certainly won’t happen overnight? I am more realistic than I was. My rational brain understands that I will never again run 10 kilometres or have full function. I realise that whatever progress I do make – and there will be more, I’m sure – will be slow, painful and hard won; that my bladder and bowels are unlikely to come back under my control; that at best I may manage to shuffle upright around my own home. But still my subconscious taunts me.
At times like this, I confess I am haunted by a dark e-mail I received from a depressed spinal injured person, able to walk 100 metres, but tortured by pain, hypertonia and useless hands. She said: “Good luck, but I’ve learnt one simple fact: that when your spine cord is knackered, it’s knackered.” Only she didn’t say knackered. I’ve been running, metaphorically, in fear from her words ever since.
Weirdly, and maybe as part of this process of rationalisation, I am starting to forget what it felt like to be normal. Can I remember what it was like to swing my legs out of bed and walk to the bathroom? How did I put on jeans standing up? Or dance? Or sleep like spoons? The answer, tragically, is no, I can’t instinctively remember. I have to think hard about it, analyse the movements. The muscle memory is fading. Like my rubbish A-level French: I have to translate what I want to say in my head before I say it.
Blame the toe. Right now, I’m blaming it for everything: increased pain, spasms, apathy towards gym. They are a funny subject, feet, and I don’t mean funny ha-ha. Unlovely things, as a general rule, and one of the most taken for granted bits of the whole body.
In fact, I bet the average healthy person, unless they work for Scholl, spends about 0.00001 per cent of their sentient life thinking about their feet. But, oh Lord, take it from me, treasure them while you can.
Remember when you were a child and you got a glimpse of your grandparents’ feet? They were like the trolls under the bridge. Scary, dark, mottled, misshapen things that lurked inside knitted woolly bootees. Well, I am, prematurely, the owner of such feet. Minus the bootees. My right big toe went a bit crusty looking next to the nail. The podiatrist (my legs are so long and stiff that I can’t tend to my toes, so the NHS supplies an expert who fits me in among his octogenarian house visits) wasn’t due for a couple of weeks. I poked at it gently with a cotton bud, and first came a gush of yellow, then came blood. Aaargh, I cried. My problem is not the wrong colour Louboutins; it is that my body is rotting from the feet up and I cannot feel a thing.
It’s just one more screaming frustration, really. Before, I never had an ingrowing toenail in my life. Now, although I spend a fraction of my day on my feet, and wear trainers the size of boats so they don’t squeeze the toes, my nail is growing into the flesh. It somehow symbolises the helplessness of my situation – just one more damn thing that’s unfair, self-destructive, totally outwith my control.
Iain my farrier arrives, cheerfully packs cotton wool twists down the side of the nail, and advises me I’ll probably need an operation. Given, because of the poor circulation, it takes three months just for a blister to heal on these hideous new feet of mine, a partial nail removal will surely set me back six months. And the general side-effects from the toe, the spasm and indirect pain, will be foul. I shy away from making a decision.
And then I compare me and my big toe to Monique van der Vorst, and curse the brothers Grimm. Van der Vorst was the Dutch cyclist who became miraculously “un-paralysed” after a road accident in 2010.
A poster girl for disability after the Beijing Paralympics, when she won two silver medals for hand cycling, she claimed that her spine was jolted back into place in the crash and she was able to walk again. Not only that, but she was signed by an able-bodied professional cycling team.
Now, inevitably, she has confessed that she was able to walk all along. “The problem was not in her spinal cord but in her head,” concluded her doctor. Fairytales, you see. You keep hoping. But they never come true.
10-07-2012, 09:17 AM
“Why,” says the husband, doing his best curmudgeonly Sir Alex Ferguson impression, “can’t you just say ‘no’ once in a while? Or, if you’re going to say ‘yes’ every time, why don’t you ask for a fat fee and give it to me?”
He is warming to his cause. “Other people charge £5,000 for stuff like this. You talk to 800 delegates at a conference and settle for a potted hydrangea in a poncey wooden basket. In fact, most times you just do it for a bunch of flowers. What you need is a good agent.”
I have no answers, really, except that: I love hydrangeas; I’m completely rubbish at asking for money; the thought of having an agent makes me snort with laughter. And besides, I have already said no to 99 per cent of the overtures that have come my way – films, books, documentaries, endorsements, campaigns; even, bizarrely, the suggestion that I should write a TV comedy set in a hospital spinal unit. Ho ho ho indeed. I said no to all these things, partly because I’m too exhausted even to contemplate them. But mostly because I am not Katie Price.
Dave is exasperated, of course, because part of him wishes I were Katie Price, and because I’ve just told him a crew from Channel 4 is coming to film me as part of their Paralympic coverage. Now the Paralympics is on my list of things worth saying “yes” to, and particularly because Channel 4 wants to highlight the work of the Riding for the Disabled Association.
But my husband, protective as ever, sees only a washed-out, tearful wife at the end of it all.
I convince him he will have a vital supporting role and will appear on national television so everyone will remark on how handsome he is, and this appeases him. Which is how, one day last week, Diana Man came into our life. Diana, a reporter recruited through Channel 4’s disabled talent search, is the first person I’ve met with a seriously damaged body that isn’t due to spinal injuries.
She’s a young, tall, striking blonde woman who walks, you notice vaguely, with a slight limp. We extend hands for a greeting – I offer a claw; she offers a thumb and no fingers. We have no reason to flinch from each other. Fate has mauled both of us.
Diana went down with meningitis at the age of 25. Fit, healthy, carving out a career with horses, she thought she had caught flu one Friday night. By the morning, when her parents came to check on her, she was desperately ill. She was rushed to hospital and spent 20 minutes in cardiac arrest.
To save her life, surgeons amputated both her legs below the knee. She almost lost her arms, too; they had to cut away much of the muscle to get rid of the septicaemia. She lost her fingers on her right hand and those on her left hand were removed at the middle knuckle. While about 50 per cent of what remained of her body was affected by septicaemia, the rest of her was used as donor sites for skin grafts, leaving nearly every bit of her covered in dressings. Alongside this, she developed epilepsy.
Four and a half years on, after 12 months in hospital and countless operations, she looks and lives like a sassy, independent woman. Her epilepsy is under control. She drives, walks on prosthetic legs, can do most things with her hands, and is carving out a new career in TV and as a dressage rider. She is a member of the Excel Talent Para-Equestrian Dressage Squad and has her eye on the next Olympics in Rio.
Meeting her, I am aware of the subtle, almost childlike curiosity of those who share disabilities; I eye her up, trying to appraise how damaged she is in comparison to me, how she copes. As “normal” adults size each other up by dress and mannerisms, so in my world we appraise by gait and fumbles and wheelchairs. It isn’t judgmental; it is sisterly, sympathetic.
For me, Diana is fascinating because, despite her terrible injuries, her spine is intact. Her challenges are as enormous as mine, but shaped differently. Confident and strong, she carries off the art of appearing able-bodied. God, I know how much mental strength she must have needed to get to this point. As I drive her to the RDA stables, we bemoan the loss of our hands and joke darkly about unholy, unanswerable barters: what’s more important – hands or feet? Would you give up an ability to walk in return for good hands?
She says she would give up an awful lot for one good hand. I say I’d trade my ability to stand and walk, feeble as it is, for the ability to control my bladder and bowels again. And then the two of us are miked up and mounted and we walk around the indoor arena side by side, chatting while we are filmed. Nelly behaves impeccably. The staff have groomed her until she gleams. Diana, on Danny, has put on her prosthetic riding legs and sits beautifully in the saddle, to all appearances an able-bodied rider but for the device she straps to her fingerless hand to run the reins over.
The experience of being filmed is rather like the one a fruit fly must have under a microscope. Hot, bright and rather relentless; and there’s not an awful lot you can do except wriggle around obediently until the cameraman has captured your good side, your bad side, your beating heart (do flies have hearts? I think not), your real belly and your metaphoric underbelly.
I start the filming smart, made-up, earringed, hair nice. By the end of the sessions, I am scruffy, flat-hat-haired, drained, the fruit flies crushed and smeared under my eyes. And tearful. Don’t tell Dave. You can see the results for yourself, if they survive the editing suite, in September during the Paralympics.
10-07-2012, 09:19 AM
To London, then, where the world spins so fast that I spend two days there suffering from motion sickness. How do you do it, you scary metropolitans? How do you speak so fast, walk so rapidly, look so stylish; how do you find sufficient breath and space to flourish in the monstrous tide of life that sucks around the streets?
For those of us who live outside the capital, whatever our circumstances, there is always a sense that we are way off the pace when we disembark within it. Magnify this feeling a zillion times when you’re in a wheelchair. Speed up or die: this is a foreign country where the rules are slightly different, the natives not necessarily friendly and wolves loiter to pick off strays.
“You’re on London time now,” teases Adam, my old mate the cabbie, amused at the sloths from the provinces. He picks us up, as arranged, in the caverns of Euston station, where we are sucking in lungfuls of exotic, industrial, underground air and I am wide-eyed, pointing, like Matt Lucas’s wheelchair-bound character in Little Britain, at wondrous things like locomotives and escalators and baggage trolleys marked Birmingham.
Everything is so big, noisy, smelly. As we zigzag across the centre of the city, my peripheral vision is full of rush and movement and I am overwhelmed by the sense of a dislocated world that can never, surely, ever join itself up. You mean people actually live here? Raise children here? Weird.
“You really do need to get out more,” says Carrie, my dear friend, who joined me on the train from her home in the Lakes. “And you need some new luggage – your holdall is suitable only for a grubby schoolboy, not for a mature woman. And what on Earth have you got in your handbag? It weighs a ton, darling. Where’s your lipstick? Put some more on.”
It’s so hard to find a decent slave these days. She keeps asking me what my last one died of. But I am so grateful for a girlfriend with the time to be my minder on a trip like this – to open an auction at the Bloomsbury Art Fair, a charitable event dedicated to raising money for Walking with the Wounded, Motivation and the Southern Spinal Injuries Trust.
What’s astonishing is discovering how much my horizon has shrunk. I was born in London; I used to love being here. Now I feel irritatingly intimidated. And the constant movement, after two and a bit years of stasis, really strikes nausea into my marrow. This is probably down to the antibiotics I’m on for the manky toe. But the queasiness starts on the train, where my wheelchair sways a little, and then continues in the taxi. It is exacerbated by the constant scurry of people on pavements. When we arrive at the venue, the swirl of faces and legs, the thick of the crowd, is dizzying, as are the crazy vertiginous heels, upon which women teeter like crippled giraffes. (Hey girls, let me give you a dispassionate bit of advice. Emperor’s clothes. The shoes look ghastly on amateurs. You’ve been conned. Really.)
The nausea rises. Suddenly I’m seven years old again, in the back seat of the car, plaiting the fringe of the tartan picnic rug in despair. “Please, Mummy, I feel sick.” And she’s whispering firmly, “Well, I can’t distract Daddy. Wind down the window a little and take some deep breaths.” Child abuse, they’d call that now.
Then I meet Annie and everything is all right, and not just because she’s wearing Converse ankle boots with stars all over them. Annie, who is older than me, broke her back in a horse fall in Somerset ten years ago and started writing to me in hospital after she read my first account post-accident. She wrote every week for a year, regardless of the fact it took me months to reply. She could have been, as far as she was aware, writing into a void – but she kept going: warm, inspirational, wickedly funny, erudite, sensitive letters that gave me a reason to live. Meeting her is a wonderful moment; she’s as special as I imagined. I feel as if I’ve known her all my life. We park wheelchairs like a kissing seat and hug.
Someone I really have known all my life is also at the art fair as a surprise: Helen and I sat down in paired desks in first form at grammar school, aged 11, and she’s been loyal to me ever since, especially during the years of teenage excess, when she used to mop up my vomit at parties.
“Helly, I feel sick,” I say as we hug, and she groans. “Forty years and nothing changes, Mel.”
If there is a theme to this column, it’s not travel sickness or London as seen through a country cousin; it’s the sheer joy of good girlfriends. Earlier in the week, by serendipity, Annette, another Times reader who befriended me in hospital, this time by e-mail, comes to meet me. She and her husband, en route for the Outer Hebrides from Berkshire, swing by our village. Annette, also older than me, had a horse fall in which her neck was damaged at the same vertebrae as me, but her cord less compromised.
Her injuries were devastating, as every spinal injury is, but left her with scope for recovery. Over the past four years she has battled back from paralysis, undertaking intensive, dogged physiotherapy. Slowly, ever so carefully, she walks on sticks into the restaurant to meet me, a triumph of body and spirit. I may never travel as far down the mobility road, but talking to her reinjects me with determination. I inhale her story of how she continues to improve.
So, home from Disraeli’s “modern Babylon”, I attack my exercises again. I bless the sisterhood. I add Kwells to the drugs I’ll take when travelling. And most of all I savour the stillness. The provinces? Don’t knock ’em.
10-07-2012, 09:20 AM
Outside, the rain is as intense as a carwash. It’s been hosing it down all night. Inside, the kitchen is packed with 15 sodden Scouts, pale, shivering, their unlaced boots squelching snail trails across the floor. Some of them are reserving the right, in the manner of small boys everywhere, to go bare-legged in the face of insurmountable logic to put on waterproofs.
They’ve been camping out on the hill behind our house. Everything they possess is now drenched. Very politely, they’ve come to ask if we could spare them some binliners to put their damp sleeping bags in, because they have another 13 miles to hike today. They advise us gravely that the smallest fledgling in the group – he’s about the same height as the wet grass – is a bit sick: he’s taken some Calpol but can he sit by the Aga for a bit until the Scout leader comes to pick him up?
We offer tea. Some of them say, “No, thank you”; they’ve never drunk tea before. Others take it gladly, bloodless cold fingers clasping the mugs like Oliver Twist. “Would you like some chocolate biscuits?” Dave asks, and the waist-high sea of little wet faces lights up.
“Oh yes, please,” they chorus, and soon there is nothing left but Pip the dog combing for crumbs amid the puddles on the floor. Helen, my district nurse, arrives to change my catheter. “Do you want to do some checks for hypothermia while you’re here?” we ask.
Dear readers, I adore little boys. They are so sweet, so vulnerable, especially when they are out of their comfort zone, trying so hard to be men. I love their haplessness, their scattiness and their endearing lack of guile. Since I had one myself, I have spent the past 20-odd years being kind to small boys, and even small-boys-grown-big, in the hope that other mothers would do the same for mine in the same situation.
Tonight, a second load of Scouts are due: this time, if the rain is as heavy, we will suggest they sleep in the barn. But still I will fret, and most of all at my inability, in a wheelchair, to do anything spontaneous to help them.
Following last week’s column, I suppose this is a further parable from the provinces. Another of the advantages of not living in London, or indeed any big city, is that people aren’t scared to stop and help strangers. In the rural paradise where I live, far from the flinty metropolitan heart, the ethos of the good Samaritan is both possible and strong.
It’s just what you do. In the village pub, stranded German tourists are offered beds for the night by big-hearted locals. My council carers, who drive many hundreds of miles a week, regularly entertain me with tales of their good deeds on the roadside – aiding the lost and the broken-down, alerting people to injured animals, warning drivers of floods; just as the farmer once rescued my district nurse from a snow drift, and brought her up to me in the cab of his tractor.
The Scouts awake wry memories for Dave and me of the day when we did our bit for another lost waif. In a tale that has come to haunt us, we first glimpsed the walker as we left home, a tall, thin man with a big rucksack striding purposefully into the gloom of a wet March dusk. In the village we met a neighbour. “Did you see that chap? Some crazy foreigner. Lost his way off the long-distance footpath. I told him just to head back the way he’d come,” he said.
After we’d wound up the car window, I turned to my husband. “Listen, I don’t mean to sound like Mother Teresa, but we’ve got to help that guy. It will be dark long before he gets back to where he started; it’s pouring and he’s ten miles off course in the middle of nowhere. And I know you’re more suspicious than me but it’s unlikely he’s an Eastern European axe murderer if he’s walking the West Highlands.”
Sometimes one’s instinct is right. The “crazy foreigner” was profoundly grateful; not only that, but he was interesting: a Canadian university philosophy lecturer, over here for a conference on Thomas Reid, the little-remembered moral philosopher of common sense during the Enlightenment. We drove our lost academic to his intended destination so his schedule would not be ruined.
After he had retrieved his huge pack from the boot, he leant down to thank us. We knew we would never meet again. “You’re good people,” he said warmly. “Good things will happen to you.” The following weekend I fell off my horse and broke my spine. And that’s one of the reasons my poor husband is so cynical.
Poignant as the memory is, what it does is support my theory of the randomness of life, of how a million little interconnected acts may end in nothing or in something. Maybe Thomas Reid was a distant ancestor, for I believe there is no point in being superstitious, or worrying about events outwith one’s control, or thinking destiny is preordained. Dwelling on the “what ifs” of life is foolish. One has a choice – get busy living or get busy dying.
So too I try to accept the randomness of spinal nerve recovery, of how a million little reconnections may end in nothing or something. Does my skin feel a tiny bit, here and there? My standing is weak; my walking better but chronically limited. I can now twist my torso enough to see in a mirror behind me. My fingers, released from contracture by fresh Botox injections by my consultant, are beautifully straight, but I have paid the price in diminished power of grip. While progress ebbs and flows, all I can do is get busy living. And along the way be as kind as possible to small, wet Scouts.
10-07-2012, 09:23 AM
I yearn to enter into the spirit of the moment, I really do. I want to celebrate the glory of London; and perhaps stage my own personal Olympiad. Gold medal for opening the fridge door and extracting milk in less than 60 seconds. Silver for getting myself into the driver’s seat of the car in less than 20 minutes. And bronze for relearning how to floss my teeth in two years.
But things aren’t going to plan. My own trip to the Olympics to watch some of the equestrian sport, using surprise tickets my son got me, hangs in the balance. Will I be fit to get on a plane in four days’ time? It’s not looking good. The body is sullen, defiant, often malevolent. Normal life has been cancelled.
The irony could not be more complete, really. Because as the nation’s spirits soar at the sight of elite athletes reaching extremes of human perfection, I’ve been stuck in the bathroom contemplating... er, how to put this... the extremes of human malfunction. Which is a euphemism for saying I’m suffering possibly the worst case of impacted bowels known to humankind.
Fear not, I’m not going to go all scatological on you. Even my dark sense of humour fails at this stage. The finer details of drinking some kind of liquid Dyno-Rod and then waiting helplessly for the results – one feels a bit like a suicide bomber about to be detonated remotely – are not something anyone would want to write about and certainly no one would want to read. Well, no one normal, anyway.
So let’s skip over how degrading and humiliating the whole thing is and just say the side-effects of such blockages debilitate spinally injured people alarmingly.
At the moment, the thing that terrifies me most is that I have lost most of my power. My body is as rigid as a telegraph pole and I can’t fight it. The last two mornings, I have been unable to sit up in bed. I barely have the strength to lift myself from chair to chair. About the only thing I’m grateful for is that I finally have an explanation for my increasing inability to stand for a couple of weeks.
So because I can’t share this particular version of purgatory with you, I’m going to tell you about my dog instead, because she senses I’m suffering and, when she’s feeling bold – this being the end of the house she is not allowed in – she tiptoes down and sticks her head around the bathroom door in sympathy.
“A small pet is often an excellent companion,” decreed Florence Nightingale in Notes on Nursing in 1859. “Hear that?” I say to the dog. “See what’s expected of you?” I can see the calculation in her eyes: she’s assessing whether it’s worth her while making an effort to be even more endearing than usual. Is this a proper conversation that might end in a love-in and a Bonio, or is it passing whimsy?
As befits a terrier, our dog thinks she is a great strategist. She doesn’t do the blindly adoring and obedient golden retriever bit at all. Loyalty is for losers. She’s a stand-up comic who plays us transparently at her own game. In Pip’s world, it is not worth getting out of bed for anything less than a sunny day or a tradesman with a good packed lunch.
Princess Tippytoes hates the cold and the wet. On rainy mornings, her bladder capacity is phenomenal; she does an about-turn at the open door and returns to bed until lunchtime. Shut her outside, for her own good, and she still refuses to pee. Instead, she squawks and grumbles at the french windows, trembling as violently as a bad actress in a horror movie.
Open the door and she comes in like a rocket, tail whirring, her lips pulled back from her top teeth in a smile which she thinks makes her loveable but which in truth makes her look like a psychotic killer. She is so ugly and so funny that she makes us laugh out loud. The joy she brings to this house is considerable; even just the tip-tap of her claws on the floor foretells comedy.
Like all Staffordshire bull terriers, she is very vocal – she yawns, slurps, mouths, burps, squeaks, burbles and occasionally, when she sees a rabbit and we are slow to let her out, yammers. She very rarely barks and she carries with her that indefinable sense of gratitude that all rescue dogs do. She adores people; is as gentle with children as can be. Does she know the life she might have had, after four owners in her first 18 months?
Her breed, unfairly, casts a long shadow. Some delivery van drivers refuse to get out of their vehicles when they see her. Strangers recoil when she approaches. She’s a beautiful specimen, lightweight, brindled black, but she’s stigmatised as socially ugly, purely because of the human uglies who have given her type a bad name.
One of my sadnesses is that I cannot now exercise her, other than throwing grapes for her to chase along the kitchen floor, and my hands cannot stroke her any more. If Dave is, in her eyes, the soft touch, I suspect she now regards me as head grump, because I used to be fun – all those fantastic long runs in the forest with the horses – and now, from a dog’s point of view, I’m utterly dull.
And boy I can do dull. My biggest excitement recently has been discovering the delights of Sainsbury’s online shopping. I’m like a child with a new toy. It’s deeply thrilling – you choose in a couple of minutes, you save yourself a whole afternoon, and then, hey presto, a charming driver comes and puts it on the kitchen table. This week I’ve ordered Pip a knuckle bone as a treat. Now, everyone, back to the TV. I’m off to the bathroom for an Olympic medal in long-distance waiting.
10-07-2012, 09:25 AM
Possessions are funny things. The happiest man I ever met was a Buddhist monk who had nothing in the world but some robes and a few pairs of socks. Gelong Thubten had just spent four years in retreat, most of it sitting and sleeping upright in a meditation box in a small, austere room. He had no books, no flatscreen telly, no Kindle, no look-how-vastly-rich-I-am wristwatch or status car. He didn’t even have a bank account.
And he glowed with profound contentment. It was catching. There was a force field of serenity and warmth around him that enveloped me as we sat talking. Gelong, a former public schoolboy originally from London, had successfully shut out the material world and found a better life inside his head. He exuded an extraordinarily powerful sense of peace and goodness.
Sadly, unlike the pursuit of Buddhism, spinal injury doesn’t make you spiritually pure and it certainly doesn’t make you a good person. Bitter, self-pitying and envious, yes; good, no. It does, however, give you a true perspective on the pointlessness of possessions.
Now, I never was a great one for what I can only describe as stuff. Prada handbags, Rolexes, designer clothes and the whole panoply of super-luxury have always struck me as gloriously vulgar – and I’ve always ignored snob lists telling you what’s in and what’s out ever since one journalist on the glossies confessed that they were compiled with breathtaking cynicism simply by finding the newest, most sought-after items and labelling them “out”. A mug’s game, in other words, as supreme a marketing finesse as the Range Rover Evoque.
It’s only when you lose your health that you learn how little possessions matter; realise what an empty conceit they are. I’m getting over it now, but I spent my first 12 months at home haunted by things I owned but was unlikely ever to use or to wear again. What used to be precious became not just meaningless, but hurtfully so.
The wallpaper of my life, my comforting clutter, was no longer friendly to me: the books I would never be able to reach up and take off the top shelf; the boxes of photos up in the attic that only I would have been able to find; the favourite jeans I could never wear; the jewellery I could not fasten; the pretty cushions I could not lounge into.
All the familiar objects I could see but no longer reach. Vast swaths of my life, my surroundings and, in some peculiar sense, my family legacy became irrelevant overnight. What is the point of caring for what you will leave behind when the majority of what you’ve accumulated in life is suddenly so redundant, so worthless?
My most treasured possession, the thing I’d wanted all my life but never felt worthy of the extravagance, wasn’t a handbag, but a really good dressage saddle. We all have our weaknesses. Horse people will understand this. About a year before my accident, I decided that I was old and rich enough to treat myself and I bought one. It’s an Albion, a top brand – although not nouveau enough to be on any horsey “what’s in” list – and a thing of great beauty in its lines and the cut of its flaps.
Oh, and I do confess to a predilection for Le Chameau welly boots, courtesy of my generous husband. A couple of pairs, one of them brand new, and even more upmarket than the Duchess of Cambridge’s they were too; leather-lined with full zips. I used to live in them. Now? Why now, they’re just what your average paralysed person really needs: a pair of £300 posh wellies that they will never get on their swollen feet again, let alone walk in.
But Le Chameau is for life, not just for Christmas, so I found a tall friend they fitted and passed them on to a good home. I tried to give away the saddle to another friend, but as her young horse grew, it no longer fitted him. I took it to the Riding for the Disabled Association one week and we tried it on Nelly the bay mare. Yee-ha. Me and my beautiful saddle are reunited. It supports me in such a good position when I ride, pelvis tilted forward, that I was, up until three weeks ago, starting to learn to trot. Three weeks? It feels like three years.
Life has gone pear-shaped. My Buddhist monk explained to me the concept of being in retreat: “It’s hard work, like physically building something, building your own inner strength,” he said. What resonance those words carry now as I battle a new wave of secondary health problems. Can any inner strength be built enough for this?
The bowel problems segued seamlessly into a urine infection (the first for six months), so just as one complaint was eased, another took over. Now the bladder is being cured by antibiotics, but the body is still in poor shape, sore and rigid and powerless, irritated beyond measure by something, we know not what. Is it bowels again? This is what life with a spinal cord injury is like; you need to become a detective to discover what your body is trying to tell you. Even worse, my brain feels clotted. My next outing is for an abdomen X-ray.
Nevertheless, I made it to the Olympics – which I will be writing about in next week’s Magazine. And despite the gruelling travel, something very wonderful happened. When I went through airport security in my chair, I required a body search. And, as the security officer ran her hands over me, I felt them. Vaguely, distantly, and nothing remotely like normal skin sensation, but I did, I felt her hands patting down my sides, hips, back, underarms and legs. Things are still happening. I hang on hard to such crumbs of comfort.
10-07-2012, 09:28 AM
Jammy beggars. Jammy, jammy beggars. No, really. There they were, the Team GB showjumpers, pulling off the ultimate feat of winning the team Olympic gold medal, and two of the four of them are survivors of broken spines. At the same time as you rejoiced in the victory of Nick Skelton and Peter Charles, two battle-scarred old hardmen winning through, a wry voice from somewhere inside you cried: “How lucky is that…”
And back comes the familiar taunt. If only, you think, I’d been a tiny bit luckier, wiser, lighter, younger, shorter, better prepared at the time of my accident. If only I’d been rich and bought a keener horse; if only I’d stuck to dressage and given up the thrill of jumping.
And then, plaintively, if only, like those guys with the medals, I’d been able to break my spine less badly, so that I could have recovered and had a second chance. Then I wouldn’t have ended up watching the Olympics from the wheelchair area wearing a drab disability rain cape and looking like I’m on an outing organised by the local Round Table.
I don’t mean to sound like the spectre at the feast. I genuinely was happy most of the time, although my black humour did make me wonder why there was so much disabled viewing space at Greenwich Park, all of it packed. I’d love to have done a survey and found out how many people were crocked by horses, but I reckon that might have been pretty tasteless.
Besides, it was fun. The GB equestrian achievements were uplifting. But to be there was to be reminded, not morbidly but with a certain ironic bite, of the nature of the gap between success and failure. Where horse sports are concerned, it is a gap both vast and yet also tiny: vast when you contrast the elite skill in the Olympic ring to the yearning amateurs piled high in the turquoise and purple stands around it, wearing their Sunday-best horsey boots; and tiny in the random way everything can be changed by a split second’s lack of coordination or a millimetre difference in the angle on which you fall on your neck.
Put it this way: horsey people have a choice about whether we are better or worse riders, but beyond a certain point we have no choice about luck. It holds us all prisoners. Although we’re the same age, I could never have been Skelton, jumping for gold. But after he broke his neck a few years ago, he might, but for a different wrench of his cervical column, have been me, sitting watching in a wheelchair. Horses are addictive, glorious but extremely dangerous.
So I watched events at Greenwich, yes, to enjoy the action, but also unavoidably to ponder the fact that horses are a disease.
The elite riders, like us, are so addicted to the sport that they can’t give it up even when the angel of death stops to ask them briefly for directions. In showjumping, the riders have the horse equivalent of a Formula One car, millions of pounds’ worth of highly tuned responsiveness – except, critically, these conveyances are flight creatures with a mind of their own. And their job is to fly their rider repeatedly 10ft, 12ft in the air. In eventing, they jump lower but faster: Mary King, in the silver-winning GB team, broke her neck too some years ago but carried on. Mad as a box of badgers, all of them.
Study that picture of Peter Charles, he of the once-crushed vertebrae. You won’t be able to get any sense of the height he’s going over, or the controlled violence of showjumping, just as you don’t from the telly; no one does, unless you’re there in the flesh, gazing up at the poles, taking in how tall and wide the obstacle is and how much raw power it takes to spring half a ton of horse and rider over it.
Look at the detail in the picture: the eye focus, the pumping blood vessels, the control, the balance, the obedience; most of all, the trust between horse and rider. The likes of Skelton, Charles, Ben Maher and Scott Brash (who used to borrow my friend Pam’s daughters’ pony, Snoopy, to go to Peebles Pony Club, I’ll have you know) tend to be as unsentimental and cynical as racing jockeys: they’ve ridden several thousand horses, been over God knows how many thousand jumps.
In the pursuit of a winner, they have cast aside more horses than amateurs have had hot dinners. And then they trust their lives to its supreme abilities. Likewise, the animals we saw at the Olympics, worth squillions, so athletic, so sublimely bred and trained, trust their riders to the extent that they will attempt to clear apparently impossible angles and spreads on demand. Top horses are generous like that. So forgive me if I regret the fact that mine wasn’t a top horse – or, more pertinently, that I wasn’t good enough to read his limitations. Even over a jump of 2ft 9in.
Anyway, brief bittersweet reflection on the randomness of life apart, the equestrian bit of the Olympics was thrilling. And I made it to Greenwich Park for a day, courtesy of the tickets my son had secretly applied for on the first ballot.
An educative experience it was, to visit the Olympics as a punter rather than a journalist. We were placed not far from the Royals, out in force to watch Zara and sitting not in any royal box but among the crowd. In front of them, a bank of photographers sat for the whole time with their backs to the horses, lenses permanently trained up William, Kate, Anne, Beatrice and Camilla’s noses.
There was a groundswell of disapproval from the protective crowd. “Locusts,” muttered one neighbour. “Leave them alone,” said another. “Harry’s there, too,” said yet another, standing quickly to snap a picture of him for themselves. So life rolls its contrary course. Like I say, it’s random. And it isn’t going to change. But enjoy the golden bits while you can.
10-07-2012, 09:31 AM
It’s a bit like preparing an expedition to one of the Poles. The bags are packed, the mountain of medical supplies assembled, the dead-body-in-the-suitcase shower chair – portable, ha! – is stowed and ready to go, the lists for every eventuality treble-checked. Eleven days away from home covering the Paralympics, and I will need several camels to transport all the weighty but essential paraphernalia of long-term injury.
Come next Wednesday, this rookie sports reporter hits town, hopefully to add something, even if it’s just an element of bewilderment, to the Times coverage of the Paralympics. With me comes my favourite Hobbit, my physiotherapist Susan from the spinal unit, she of the cool head, warm heart and sardonic quip, who has given up her holidays to be my minder for the duration.
To be entirely honest, I’m more anxious than excited at the moment. Most pressing are the practical worries. I’m overwhelmed with the fear that I will be so far off the pace required to file copy on time that I’ll be like a Bulgarian weightlifter who finds herself running in the 1,500 metres, crossing the line a lap after everyone else. I am many things, but fast is no longer one of them. Will I get lost? Shall I find a desk? Can I type swiftly enough with two fingers? Where are the loos? What’s the name of the person who came second in that race again? Aaaaargh…
And how will I interview anyone? Can my frozen fingers still scribe shorthand, let alone can my brain still decipher it? This job would be a blood-stirring challenge even for the old me, able-bodied. In my chair, as weakened as I have been of late, my brain gets befogged just thinking about how I’m going to cope. Maybe I could just bribe Simon Barnes to let me put my name on something he’s written.
And then there are the more tricky issues. It should be simple, shouldn’t it? To go and be inspired by the superhumans, as it says in the Channel 4 adverts. To bow one’s head in awe at the manifestation of strength, determination and unbeatable spirit on display; to be inspired by those who have risen above disability.
But actually it’s anything but simple. These athletes are the elite; they’ve fought and clawed and trained themselves into supremacy. They don’t want the media drizzling on about how brave they are, or pitying them, or lyricising about “soaring spirits” and “overcoming” anything. They just want to bloody well win. I am mindful of the recent conversation I had with one athlete about the practice of Paralympic cheating, achieved by seeking to be classified in a higher group of disability. I thought she’d be shocked. Instead, she was glad the issue had been aired in The Times. “Of course it happens. In fact I rather like the discussion being public, because it puts us on a par with ordinary athletes. It makes us like any other elite sportsmen and women, fighting for the tiniest advantage.”
This attitude stunned me at the time, but I have dwelt on it and learnt from it. So no purple prose, then; no sentiment. No patronising. Understand instead the journey these hugely competitive athletes have travelled to get here: understand their matter-of-factness; their calm; their focus; their nonchalance and pride about their bodies. Their lack of doubt. This, I begin to realise, is the cream of my new tribe, the greatest warriors, and I am about to watch them in action and learn deep things.
What we are about to see, hitting the national consciousness on the wave of post-Olympic euphoria – as the slogan says, “Thanks for the warm-up” – will do so much to normalise disability. Of this there is no doubt. These games will both liberate the disabled from the cotton wool in which some seek to wrap us, and also defeat prejudice among others who would rather we were invisible.
A whole generation of youngsters, future town-planners and architects, designers, politicians, engineers and teachers, will see these games and absorb the message that the disabled are magnificent; that society should be structured for everyone.
Why then, for me, do the Paralympics feel complicated? Why, even as the words “hero” and “inspiration” are taken off the shelf and polished, do I fret? For me, it’s complicated by envy. Envy at the fact the athletes are coping so brilliantly with their disadvantages (and, by comparison, I’m not). Fear that I will feel inadequate and under-achieving. Much of this I can put down to the fact I am comparatively newly injured and still resentful of my altered status, while the athletes who are about to entertain us left all that stupid baggage behind a long, long time ago. They’d have to, to do what they do.
Perhaps it’s also because I don’t know the etiquette; I’m not sure if any of us yet do. How does one portray winners and losers without discussing difficulties overcome, or inquiring about missing legs or fractured spines or degrees of cerebral palsy? Isn’t that, deep down, what we want to know? I certainly do. To ask: what’s wrong with you? What can’t you do? What makes your performance here, in a boat, in a racing wheelchair, on blades or on a bike or a horse, so bloody remarkable? And I simply don’t know if such nosiness is acceptable.
Maybe that will be the game-changer, for me and millions of others. Maybe, instead of focusing on what the disabled cannot do, the Paralympics will teach us to celebrate what we can. Maybe the question in future will not be, what’s wrong with you, but rather, what’s right with you?
Oh well, at least I’ll have the Hobbit to torture and bully me and keep me right.
10-07-2012, 09:35 AM
We stand on the brink of a sporting festival where athletes will do what ordinary mortals cannot do; but this time to the power of two
Perhaps we should make a Paralympic pact before we start. Let’s agree, here and now, not to talk of “heroes” and how “inspiring” they are, for in the ten days to come these words will become wearisome clichés.
Besides, are they adequate? We stand on the brink of a sporting festival where athletes, just as they did in the Olympics, will do what ordinary mortals cannot do; but this time to the power of two. Unlike that wondrous occasion just passed, where men and women showed what elite but essentially normal bodies are capable of, the Paralympians have had to achieve twice as much.
First, to get to the point where they could contemplate sport, they had to cope with their disability both mentally and physically. So easy to say in a sentence; so hard to do.
Never underestimate the challenge of life with devastating injury or damage, the extent of the sadistic battle involved in getting out of bed and facing every day. Never forget that this amounts to a shared hinterland of practical and emotional despair, above which every Paralympian has risen. But then, of course, that victory simply becomes a given.
The ability to defeat a screwed-up body gets the athletes merely to first base. Now comes the second great task, the years of dedication, self-sacrifice and sweat that will qualify them to perform on this particular international stage.
For many para-athletes, the two challenges are inextricably linked. What millions of us are going to see are people who have found salvation from their pain through sport; who when running, riding, swimming or wheelchair racing have found therapy for their missing limbs, for their twisted and paralysed bodies. They have also, crucially, found release from anger and frustration.
Participation in sport has the power to heal all of us to some extent; but it heals disabled athletes even more, re-empowering, mind-wiping, peace-bringing. Sport has set them free and given them a reason to keep going.
The Paralympics, then, will present us with the cream of warriors from a very select tribe; men and women who will bring us a brew of raw courage, liberation, emotion and up-yours competitive spirit even more potent than the Olympics. Whatever else you expect, do not think you will escape without being deeply moved. Do not be surprised if we commentators, even if we belong to the tribe, struggle for the right words.
For me, the tone for the spectacle which opens tonight was set by Rifleman Jack Otter a month ago. Brain-injured and minus two legs and an arm after Afghanistan, Rifleman Otter took part in the torch relay.
His job was to herald the Olympics, not specifically the Paralympics, but it didn’t matter a stuff: during his now-famous walk on what he calls his stumpies, determined not to give in, he became the symbol of something glorious, something we didn’t know we were yearning for until we witnessed it. Even the police protection officers, alongside him, were crying. “You just run out of words . . .” one said.
Keep your pity and sentiment, the soldier’s actions told us. Don’t tell me I’m brave. Just respect my pride and my refusal to accept that anything will ever beat me. That same spirit, which we suddenly all wanted a piece of, will light up the stadium tonight.
Similarly, there will be Martine Wright in the GB seated volleyball team. Her story is well rehearsed but too strong not to repeat. The woman who was so desperately injured in the July 7 bombings, the day after the announcement of London’s successful bid to hold the Olympics, found redemption for her wounds in sport — and became so good at it that she made the Paralympic team.
She offers the power to heal us all, but just don’t call her a hero. Everywhere we look, there will be stories that tear our guts out. In every young person struck down in their prime there is tragedy that defies description.
Shouldn’t we be honest and admit that the personal tales of the athletes interest us just as much as the sport? That we want to log missing legs or arms, fractured spines or degrees of blindness even more than we want to know who won and who came second? Isn’t it only by understanding what these athletes have overcome that we can fully revere their achievements?
Fact. Behind every disability there exists pain and loss. Strip away the competitive shell, and acknowledge that inside every para-athlete, if you probe long and hard enough, there it lies. In the run-up to today, one of the most affecting Channel 4 interviews was with Nathan Stephens, a javelin thrower.
Stephens lost his legs straying on to the train tracks when he was 7. Now an upbeat, tough young man, he still broke down on camera when he remembered himself as a little boy, lying there thinking, what’s my mum going to say. And then he recalibrated his emotions, as he will have done thousands of times, and remembered to play the Great Game of disability.
“I wouldn’t be the person I am unless my accident hadn’t happened,” he said. Really, truly, he left all that baggage behind a long, long time ago. He had to, to do what he does.
So they have got up and fought to win at life and at the races, these athletes, rather than lain down and be depressed. And they wear as their armour a thick layer of shared black humour.
Don’t worry about political correctness; neither be shocked by their shared fellowship of the brutal realities of their lives, their bodily functions, their dependencies. This is not something they want protecting from or sanitising. “We’re raspberries,” says another athlete. “Raspberry ripples — cripples.”
So let the Games begin; and let us not garland the competitors as heroes. They’re elite athletes; all they want is respect for their capabilities. Don’t cheer with pity; cheer because they’re so damn good. And if we all run out of words, well, so be it.
10-07-2012, 09:38 AM
Yesterday only the unpredictability of horses and the weather threatened Lee Pearson’s chances of putting Britain in the lead
He is a pixie of a man but, fused with a horse, his tiny twisted frame becomes as mighty as a crusader. Lee Pearson is the knight supreme of dressage; the man with nine golds from three consecutive Paralympics who is expected to excel again on home soil.
Pearson is to dressage what Esther Vergeer, unbeaten in 465 matches, is to wheelchair tennis. Do his competitors’ shoulders sink when they know he is coming, just as Vergeer’s opponents do when they are drawn against her? Few would blame them if they did. Yesterday only the essence of horses, unpredictability, and the weather threatened his chances of putting the British into the lead on the opening day of the team competition.
Wind that snatched spookily at flags, and then rain, caused his horse to behave, he said a little waspishly, like “an immature child”. He had to “nurture rather than pressurise” the giant bay Gentleman to a score of 74.6 per cent, putting Team GB into a slender overnight lead. Pearson also made a course error, which meant a 10-point deduction.
“It was totally my fault. There’s just two circles and I got them the wrong way round. I usually do something stupid at the Paralympic Games. See, I’m not foot perfect.”
Pearson is within touching distance of becoming the most garlanded Paralympian, overtaking Tanni Grey-Thompson with 11 golds. His professionalism and dominance of the sport are such that he regularly beats riders in able-bodied classes.
How deceptively easy, how “I could do that!” these walk-trot dressage tests were to watch in the grandeur of the Greenwich arena. There was no extravagant equine ballet: no passage, extended trot, piaffe or pirouette.
The wonder, of course, is that any of these riders can ride independently at all, for they have profound physical difficulties. Pearson competes in grade 1b, at the most disabled end of the sport, where one’s balance and control — this reporter writes as one newly paralysed and learning the sport — are often marginal verging on precarious. One stays in the saddle by virtue of the horse’s kindness.
Most riders who cannot use their legs carry whips instead, artificial aids to ask their horses to go forward. Pearson, 38, who was born with arthrogryposis, which set his joints in the womb and left little muscle in his limbs, has taught himself to ride with miraculous power and stillness in his core.
So strong is he that he rides from his seat bones, using weight and pressure to negotiate with Gentleman, an 11-year-old gelding with whom he won three golds in Beijing. In the saddle Pearson becomes whole, set free from his disability as beautifully as were the limbless trapeze artists in their soaring gilded cages at the opening ceremony.
Pearson was phlegmatic. “It was an OK start — not the best I’ve ever had. The engine just dropped out of his backside. You just use the conditions as an excuse. He [Gentleman] works in Staffordshire in the rain. He’s just being cheeky. The wind made him go into himself a bit more, but he just wanted to have the day off.”
Pearson was gracious about his status at the pinnacle of the sport, saying of his opponents: “Don’t let them fool you — they’re talented riders on top, top horses. I’ve never gone into the arena thinking I’m going to get the gold.”
The Austrian rider Pepo Puch, lying second, said of Pearson: “He’s a very, very important person. He brings our level up and brings out the best in us. We need people like him. He gives us the level and we have to aim to beat it.”
Joann Formosa of Australia, who took up paradressage after being crushed against a gatepost by a horse 25 years ago, leaving her with spinal damage, and who subsequently had another serious riding accident, was less cowed than Puch by Pearson’s formidable record.
“I’m out to beat him — I call a spade a spade. From the Aussie land we’re coming, and he’d better be scared. He was intimidating at the start, in 2006 [when Formosa made her debut at the World Equestrian Games], but since then I’ve had six years and a lot of time in hospital to plot my manoeuvres, and now I’m coming after him.”
Pearson knows, too, that the young ones are coming. Natasha Baker, a hope for an individual medal in a sport the British regard as their domain, competed yesterday in grade 2 as a warm-up for her main competition next week. She finished in first place. Last year she won the European individual and freestyle titles on her horse, Cabral. “It’s been my dream for 12 years and the fact that it’s in London is just mind-blowing — it’s a massive honour,” she said. “I’ve hopefully got a massive career ahead of me and what a way to start, in my home country.”
10-07-2012, 09:41 AM
“I was there,” people will be boasting this morning. I was there to see Ellie Simmonds win one of the most thrilling sporting contests ever seen. I was there to see Oscar Pistorius, the glittering blademan; to watch Sarah Storey take a world record as a sci-fi warrior on wheels, then take off her helmet and weep like a child. And they’re right to do so. Because we were there; and how do we begin to understand how privileged we were, those of us lucky enough to be in the Olympic Park at the weekend? This was weepier than the best feel-good movie, more dramatic than anything a scriptwriter would dare submit.
“Prepare to be moved,” Sebastian Coe warned us in his opening speech at the Paralympics. But he could have had no idea how much an understatement that would be.
Ellie Simmonds’s duel in the pool against Victoria Arlen defied soap opera: the tiny British teenager against the tall American who was still recovering function after being paralysed by Lyme disease. We Brits love to be patriotic and we’ve learnt to love to cry, and as Simmonds’s raw courage drove her past Arlen in the last 75 metres she gave us permission to do both in abundance.
It has been said before, but the noise in these venues defies description.
Such was the wall of sound in the Aquatic Centre that you feared it would push the swimmers under the water. When it came to Ellie’s medal presentation, the force of the roar coming down from the gods was such that, I swear, it created downdraft like helicopter blades on the surface of the pool. Afterwards, your ears hummed as if you had been standing next to a speaker at a rock concert.
Why are we so moved, so eager to cheer and cry? Because of the sheer grit of the competitors, overcoming so much even to be here, let alone compete. But maybe also because the Paralympics express a way of saying “So what?” to imperfection; of showing the world that you don’t need a perfect face or body to succeed.
These Games offer us a chance of redemption from society’s prevailing shallowness, our obsession with beauty and looks. Outside in the park, the sense that this was a festival of extraordinary ordinariness was reinforced. Thousands upon thousands filled the public spaces: the halt and lame were there; the middle-aged woman proudly wearing hiking shorts with her prosthetic leg. Would she have worn trousers anywhere else? Probably. But not here, where what you looked like didn’t matter.
One noticed the lack of commercial imagery. Oh, there was plenty of Visa and McDonald’s, including irritating groups of Coca-Cola performers carrying umbrellas and singing “Hot, hot, hot”. There were unpleasantly totalitarian speakers up lampposts, either playing bad music or telling you what to do. But, tellingly, there was a total absence of the tyranny of beauty: no advertisements featuring glossy bodies and subconsciously reminding us that we’re not pretty enough; no three-storey-high Chanel beauties or Calvin Klein underpant models; no sexy lipstick adverts or airbrushed bodies. No, it was Ellie Simmonds, sobbing and smiling at the same time, who was our poster girl. A building wrapped in a vast poster declared: “Solutionism is the new optimism,” which at first sight seemed cobblers but on reflection, if one’s feeling charitable, could be interpreted as a vote for get-on-with-it ordinariness. Inside, of course, there was beauty in merely daring, let alone winning. Richard Whitehead, with his stiff leg prostheses and his celebratory muscle pump, coming from 20 metres back to win the 200 metres, and how. Allison Jones, the US cyclist with one leg lost high up the thigh, who supported her prosthetic on the crossframe and sprinted round the Velodrome one-legged, blown by the roar of the supportive crowd. Pistorius, who ran like velvet, gliding into our memory banks. I was there, people will say in years to come. I remember him.
Unashamedly, we played the game of guessing the disability: “What’s wrong with her?”
“Dunno, but she’s amazing,” spectators muttered to each other. At the Velodrome, particularly, we learnt how little it mattered.
You saw the athletes in their suits and helmets, conquering the world. Then came the medal presentations and the bit you really don’t see on television — the fragility of the contestants, dismounted, unsupported, making their way to the medal podium. One of the most poignant sights was Alyda Norbuis, from the Netherlands, getting her silver medal for the C1-2 500m individual time trial, one of the most disabled categories. She forced her body into the spotlight, its profound damage undisguised.
For a short time, in the Olympic Park, we are on Planet Nice — a place where poster girls win gold medals; people don’t drop litter; special assistance buggies stop to give lifts to the tired and overweight; strangers greet you; people wear smiles instead of frowns. And everything fits. Clare Balding, excellent broadcaster rather than beautiful airhead, was meeting the punters, being mugged like a celebrity. People were queueing to pat a piebald police horse standing patiently while enduring a thousand poking little hands. “What’s its name,” they cried. “Fuzzy,” the officer replied, which struck me not only as a good joke but a reflection of the warm and faintly euphoric atmosphere.
So perhaps our perception of beauty can be changed for more than a weekend.
Perhaps we don’t need to be lectured about making society fairer for less-abled people, but should instead go and watch blind football or people with one leg cycle at 40mph, or a swimmer beat someone whose arms are three times longer than hers, or runners who float on springs, surreal in the floodlights.
Hundreds of thousands of people standing and celebrating imperfection.
It feels good.
10-07-2012, 09:43 AM
The Iranian men’s sitting volleyball team members are legends
That’s the endearing thing about the crowds at the Paralympics. They’re utterly uninterested in geo-political niceties. “Who’s here supporting Iran?” calls the cheerleader. And the spectators, 90 per cent British, roar like they’d roar for Andy Murray at Wimbledon.
Honestly, one doesn’t wish to come over all Palinesque, but haven’t these people heard of the axis of evil or rogue nukes? Us cynical commentators shake our heads. You can’t fool us.
We suspect dark reasons why Iran are the world leaders in men’s sitting volleyball — too many suicide bombs, for instance, or the over-enthusiastic application of sharia. And then the team walk on to court, and a lump catches in your throat and you feel ashamed, for you learn that these aren’t young men maimed by political forces or representatives of state-sponsored torture. They are victims of nothing more awful than a disease that was eradicated decades ago in the West, polio.
Eight out of the 11-strong team, all tall, athletic men, are disabled as a result of something that an effective public health policy can rule out, cheaply and easily, in a short time. But to do that surely requires a government that wishes to direct its money to the wellbeing of its people, not the development of weapons.
So they’re victims, just of a different kind. This weighs on you as you watch the team put down their sticks, take off their callipers and assume their positions on the floor, poised for a game both delicate and cerebral and yet intensely physical. And then you realise you need to stop complicating stuff. These men are just happy being stars, famous at home and abroad within their esoteric world.
The Iranian men’s sitting volleyball team members are world-beaters, legends. They are world and Paralympic champions — their Paralympic golds stretch back to Atlanta in 1996, the only blip being a silver in Athens.
They have yet to drop a set in London, beating both Rwanda and China 3-0. Yesterday they demolished Brazil 3-0 never once losing the lead. Tomorrow they play their greatest rivals, Bosnia-Herzegovina, who are drawn in the same pool.
In 2010, at the World Championships in Oklahoma, Iran defeated Bosnia in five sets for the title. Both look certain to move forward from the pool stage. Iran could potentially meet the GB team in the quarter finals.
Asked afterwards about the possibility, the Iranian captain Jalil Eimery, 33, was polite, brief and clearly uncomfortable talking to the press. “GB are a very new team, but Iran are very strong. We are confident that we can beat them.” That’s what you call a diplomatic nuke, then.
The joke during the Olympics, of course, was that Britain was only good at the sitting down sports. In the Paralympics, where most sports are seated, the challenge may be all the greater, especially in this, the one they call physical chess.
As I found yesterday, sport strips politics from our bones. The Iranians looked a bunch of pleasant, fit, dedicated blokes, whose favourite hobbies, according to their official biographies, were reading newspapers and trying their hearts out.
Most are professional sitting volleyball players, for so popular is the sport in Iran that the country supports a professional league. Imagine: we have football, they have sitting volleyball, in which there is a rule that players must have at least one buttock on the floor when contact is made with the ball, which makes life interesting for the umpires.Imagine what the fans would sing at Old Trafford.
And they’re world leaders in the sport, it is said, because they are so consistent and have professional structure unlike anywhere else. And presumably a deep pool of eligible players . One can ascertain little, however. The Iranian journalist I approached did not speak English and the players, though beaming and upbeat after their victory, reserved their chat for Iranian TV.
“They didn’t really want to talk,” said an apologetic Paralympic press officer . When asked about his team, Eimery said: “It’s a very strong team.” On tomorrow’s needle match: “Bosnia are going to be hard but we hope we can beat them.”
The man who makes Wayne Rooney sound articulate says his sporting ethic is to wish health to all players and lists his alternate hobbies, after reading newspapers, as watching TV and playing computer games.
He had polio. Sayed Saeid Ebrahimi Baladezaei, a man of 1.98m (6ft 5in), is one of the eight other players with the disease on the team. So is Ramzan Salehi Hajikolaei, whose motto, he says, is “Our Iran, our glory”.
Only three players are in the team as a result of car accidents. By comparison, the majority of their opponents in the Brazil team had lost limbs through car crashes. The 7ft Ribas de Silva, however, was a pro volleyballer until, at the age of 21, he developed pain behind his eyes and doctors discovered he had acromegaly, a rare disease caused by excessive production of the growth hormone.
The game they played was one of grace and speed. In a sport invented in the 1950s in the Netherlands, the Iranians showed balance, discipline and concentration that wore their opponents down relentlessly. Spookily good stuff it was, but mysterious and a little poignant too.
There are more questions than answers. And the next question is why are the Iranians so good at powerlifting? Siamand Rahman goes in the heavyweight category this week — he lifts the equivalent of two baby elephants, according to his profile. He probably likes reading newspapers too.
10-07-2012, 09:45 AM
The anger of disability can come to the fore in wheelchair rugby
They play the anthems first — that’s in case you die. Most of the players have broken their necks already; that’s why they’re here and are they bovvered? Not at all. Theirs is the most aggressive, brutal Paralympic contact sport: car crashes as entertainment, dodgems with venom. And all to a heavy rock soundtrack.
Wheelchair rugby is above all the game where the anger of disability is allowed out. In this arena are some of the most damaged athletes at the Games, hands and feet lost, lower and upper limbs impaired, spines crushed; but here the frustration and despair about losing their bodies is released in high-octane violence.
And liberating it certainly is. I have played the game; and nothing begins to compare with the feel of being strapped in a rugby wheelchair, with its bucketed seat and wicked manoeuvrability. You feel as poised as a centaur. The deep skirting, Mad Max spikes and battered chariot wheels — one imagines the blood stains — give one a feeling of invincibility, speed and potency. All wheelchairs should feel this good.
Serious disability wraps one in care and cotton wool. Crashing a wheelchair into another at speed, you cast off the cloying and the claustrophobic. Relish the thump of the industrial-strength bumpers; savour the rebellion of the jolt. So it’s macho and yes, sexy, and it’s good for giving young men especially a reason to live again after catastrophic injury. It’s said that the closing speed of two players colliding head on creates the equivalent G force to that which Formula One drivers experience; certainly the players can end up either in the sin bin or even intensive care. Broken noses and fingers are common.
The kit is suitably gritty rather than glamorous: cheap, rubberised gardening gloves, strapped to the wrists with heavy surgical tape; the glue used to lay carpet tiles, which the players spray liberally on their wheels rims to give them pushing purchase (they all have impaired hand grip); and lots of big tattoos, to enhance the warrior image.
And it’s not just young men who love it. Despite all the testosterone, this is a mixed sport. Kylie Grimes, 24, played yesterday, the only woman on the British team: she was left paralysed from the chest down after hitting her head diving into a friend’s swimming pool in August 2006. The danger of the game does not worry her. As she puts it: “I’ve broken my neck — what more can I do?” Who can begrudge her a little nihilism? In August last year, Grimes tried to sue the owner of the pool for £6 million as there were no warning signs displayed, but the judge said: “She was an adult. She did something which carried an obvious risk. She chose, voluntarily, to dive when, how and where she did, knowing the risks involved.” Risk. Like so many of us in wheelchairs, Grimes played with it and lost.
She daily swallows the bitter consequences. The dark, gladiatorial image of her sport suits the young, active, risk-losers who want a reason to keep living; who find salvation in aggression.
Steve Brown, the British captain, who played brilliantly yesterday in Team GB’s close encounter with the US, was taken to see wheelchair rugby not long after a fall from a balcony broke his neck. “I was very nervous and very frail, and they were aggressive, violent, full of testosterone. I thought to myself ‘Well, if they can get on with it, then so can I.’ Two days after I left hospital I had my very first training session. It felt the closest to how my life was before my accident.”
The US player Chuck Aoki, 21, says: “The brick walls aren’t there to keep us out, they are there to show us how bad we want something.”
A team-mate, Joe Delagrave, who broke his neck in a boating accident, says simply: “Rugby saved my life.”
The opening match at Olympic Park was a suitably menacing thriller between the Brits, who missed out on the Bronze in Beijing, and the reigning Paralympic champions, the USA. The Americans won 56-44. The American team still includes two of the players who starred in the 2005 Oscar-nominated film Murderball, which helped to establish the notoriety of the sport.
Playing to a full house in the basketball arena, GB scored the first goal of the game, in the opening seven seconds, and finished the first quarter up on their opponents. But despite a remarkable performance, GB lost the next three quarters to finish 12 points down.
Myles Pearson, the “baby of the team” at 19, said that they had been happy to “hold our own, we come away with our heads held high”. Brown said that although they had not managed to turn the odds and win, he was pleased. “There’s no doubt from a captain’s point of view, the team, my team, gave 100 per cent today,” he said.
Aaron Phipps, a 29-year-old former wheelchair marathon racer who lost limbs and fingers from meningitis and took up rugby on the suggestion of his wife, managed to score more goals than any other player during the match, with 16. He had said that his job in the team was to “to tackle like Lawrence Dallaglio or Lewis Moody”, though yesterday he was more of a Jonny Wilkinson. At one point, he scored four goals in only two minutes. He put the GB defeat down to the fact that the US team had been playing together “for a long time”.
Grimes, who has the GB flag dyed on to her head, said: “It was great we did play well. We are going to be a very strong team. We came out quite hard. We had the crowd behind us but their experience won the day.”
She added: “They treat me the same, that’s how it should be. I don’t want to be treated any different. It would be nice to see more women.”
David Anthony, 21, who has muscular dystrophy, said approvingly: “That was a rough game. We are more than up for that. It’s like chess with a bit of hitting in it.”
So there you have it, chess with a bit of hitting in it. Wheelchair rugby, it’s the new rock’n’roll.
10-07-2012, 09:47 AM
Whatever I expected, it has been far surpassed by the reality
Thick and fast they have come, the moments when you shake your head and say, did I just see that? Was that for real? The drama of 80,000 people falling silent so that a blind long-jumper can sprint into her darkness towards the sound of someone clapping. The sight of a young woman, her body frantic with cerebral palsy, achieving serenity on the back of a horse. The potency of men with no legs turned into gods by the menace of their running blades.
I don’t know what I expected from the Paralympics; I don’t think any of us did. Whatever it was, it has been far surpassed by the reality. The hundreds of thousands who have flocked to the events and the millions gripped on TV — 6.3 million watched Jonnie Peacock win the 100 metres on Thursday night — have seen things we could not have dreamt of; and been moved in ways we never thought we could be.
Like so many, I came here anticipating sporting endeavour and precision but suspicious of sentiment. As someone newly damaged, I also came, if I am honest, with envy and some trepidation. With my life still a horrid daily struggle, I didn’t exactly relish the prospect of watching young people who could do so much more, who could effortlessly rise above their situation and make me feel both frail and inadequate.
I didn’t want to be made to feel old, or an under-achiever. Worst of all, I didn’t want to have to address my own state of denial. Me? Disabled? Never. Yeah, right. Keep pretending. Ignore the reality that you can’t even push yourself across the road or butter your own bread roll.
A month earlier, I had been at the equestrian events at the Olympics and, even as I enjoyed the spectacle, had felt unmistakably sour and resentful at the random nature of my plight, my accident. The corrosive little voice inside cried: Why me? What did I do to deserve being parked in the disabled viewing area wearing a drab cape? There’s been some terrible mistake.
But this time, remarkably, that cloud never settled over me. The Paralympics have been a kind, wondrous thing; they have sprinkled a little magic on us and made us nicer people. From the very first evening, the athletes provided us with beautiful, surreal memories, which, I genuinely believe, have altered our values towards the human body — temporarily at least. Frailties haven’t just been just revealed; they were celebrated; they were turned into positives.
So what were the best bits so far? In no particular order: the cyclist Sarah Storey not just winning the women’s road race but overtaking all the men who set off two minutes ahead. Samosas from the Olympic Park snack bar. The downhill ramps. Sophie Christiansen winning gold in the dressage; because of her cerebral palsy, her body jerks uncontrollably but it doesn’t stop her riding supremely. There was Ellie Simmonds, the coolest of tiny teenagers, who, impossibly, made swimming exciting; whose tears cracked a thousand hearts after she accelerated past her American rival Victoria Arlen in the final length for an epic sporting victory.
The athletes continually challenged our preconceptions. We explored poignant, mysterious areas. I learnt why the Iranians are world leaders in sitting men’s volleyball: because, it seems, there are enough polio victims in Iran to sustain a professional league structure. Pause for a minute and think about that.
Then there was the strong silent man David Weir’s success in his racing chair; and the ripples that travel outwards from it to change the world in little ways: the small boys to whom he is already a hero.
Along the way, something very significant happened. Disability became cool; it’s full of dudes like Weir, Peacock, Oscar Pistorius, Jody Cundy and Ade Adepitan. Not to mention the Australian comedian Adam Hills and Alex Brooker.
And the most crucial thing of all for me? Disability got funny. The biggest breakthrough was seeing deformity be allowed to show its sense of humour — all due to Channel 4.
When we come to evaluate the past ten days, one of the game-changers will prove to be The Last Leg, presented by Hills, which nightly laughs with the disabled and the deformed, and includes a segment called ‘Is it OK?’ in which viewers tweet in questions about disability and what may be deemed socially unacceptable. As in, is it OK to punch someone who’s disabled if they’re a nob? (Answer: it depends how much of a nob they are.)
Hills says that disability is more than funny, it is joyous. “Walk around the Village and you get a real sense of joy. A sense of humour is so important in dealing with disability. It’s what gets you through.” His show is edgy and it’s taboo-breaking. I love it, because the disabled themselves have the blackest and best sense of humour around — it’s what keeps us going — but up until now we’ve been surrounded by able-bodied people being offended on our behalf. Nobody thinks it’s a good thing to laugh at the disabled. But it is a genuine problem that the able-bodied have up until now felt unable to laugh with the disabled.
And so Channel 4 and the Paralympics have to some extent stolen disability back from the disabled industry. You can already see the po-faced comments starting on the web. This is the start of a turf war over who is the arbiter of offence. Doubtless there’s envy coming from the charities who for so long have battled on behalf of their “service users”. These people are suddenly not in control of this new world in which — horror of horrors — people are making late night jokes on Channel 4, and they don’t like it one bit.
Those of us who at school remember people being called “spazz” can only look in awe at 80,000 people in the stadium cheering the 100m sprint for the cerebral palsied, and smile with joy. This is progress. Wonderful progress.
On The Last Leg, Brooker, the co-presenter, who has severely damaged hands, showed how he can always win at paper, scissors, stone. There followed a comic, cheeky, edgy discussion on the hierarchy of disability: what trumped what.
My epiphany came in the Park, when among the huge crowds I collided with a harassed-looking family with a double buggy and a toddler in arms. Now there’s a kind of unwritten highway code in crowds: the able-bodied give way to the less mobile; the power chairs give way to the self-propelling wheelchairs.
The family and I are in a stand-off and I feel a deep chuckle rising up inside me. It’s like a bad game of bridge. Two amputee limbs trumps cerebral palsy; a missing leg trumps MS; and here, a mother having a nervous breakdown definitely trumps a tetraplegic.
“After you,” I gesture to the family. “You win.”
10-07-2012, 09:49 AM
So many stardust memories of these two unforgettable festivals of sport
The spell was first cast by the Red Arrows, back in July, as they roared out of the warm London dusk to launch the Opening Ceremony. It was recast a month later, when a little blue plane, trailing stardust from its wings, circled overhead to greet the Paralympics.
The charms work. The magic dust drifted from the sky and into the Olympic Stadium, and a vast bowl of steel and wires and running track became not a place for sport, but a theatre of dreams.
On Saturday, with the kind of symmetry that told us magicians had been at work, it was the stage where Oscar Pistorius book-ended both the Olympics and the Paralympics. Here he secured his place in history, becoming firstly the only man on blades, not just to run against the best able-bodied athletes in the world, but to reach the semi-finals of the 400 metres.
Pistorius bridged the gap between the two great circuses, a perfect symbol that disability need not be separate but was part of the glory of life. A month later, rising above both defeat in the Paralympic 200 metres by the young pretender Alan Fonteles Oliveira and controversy of his own making, he faced his would-be nemesis again in the very last race in the stadium. If Steven Spielberg had directed this final scene, it could not have been more fitting: 80,000 people on their feet cheering the most successful Paralympian in the world to victory on his flashing blades.
Could there have been a more dramatic end? This man-made stage has both created and witnessed more supreme athletic landmarks in the past 2½ months than the members of Locog, in their most ambitious dreams, could have hoped for.
Usain Bolt, unarguably one of the most famous men on the planet, surely made the Olympic Stadium hallowed ground. He arrived nervous, his legendary status fragile. He left having secured the double-double, the first man to defend both 100 metres and 200 metres sprints, his finger to his lips as he crossed the line in the longer race to silence his doubters.
That he then ran the last leg of the 4 x 100 metres relay, earning Jamaica a world record and himself another gold medal, was pure Hollywood. It is unlikely any other running arena will ever see his like again; and the millions of people who fought to buy tickets to watch him sensed that.
But whoever sprinkled the stardust over this place was generous. We saw David Rudisha, the quiet man, the athlete’s athlete, who runs as if gliding across velvet, smash his own world record in the 800 metres.
Here was a place where dreams did come true. Jessica Ennis gave the patriotic British crowds the ultimate victory to celebrate. Mo Farah did likewise in both the 5,000 and 10,000 metres. These were performances that only come along once in a lifetime: we were just lucky it was our lifetime.
And hardly had we taken breath when the stadium came alive again: to Paralympic stars like Hannah Cockroft, Richard Whitehead, Jonnie Peacock, David Weir, Aled Sion Davies, the British women’s 4 x 100 metres cerebral palsy team who got a bronze despite fumbling their handover. Night after night the place was packed with 80,000 people who stood and cheered for anyone that moved.
As with the best theatres, the stadium was a much smaller, more intimate place than it appeared on television. The spectators were joyous, affectionate and kindly — a force for good. They roared on the losers, wept for the brave, and fell deathly silent for the drama of the blind long-jumpers.
On the last night of events in the stadium, there was a particular feeling of anticipated loss. Soon it would be all over; soon the spell would end.
And everyone felt a little sad, because they wanted the feel-good to go on for ever.
There was plenty of it around. When Fanie van der Merwe, the South African who has cerebral palsy, literally fell across the finishing line and won gold in a time of 11.33sec in the T37 100 metres; or in the 100 metres T54 wheelchair race, when Tatyana McFadden, one of two sisters adopted by Americans from Eastern European orphanages, managed a bronze.
There was real poignancy too. Poor Nathan Stephens, the seated world champion javelin thrower, who had been starring every night on TV promotions as a BT ambassador, posed in front of a glorious Welsh valley, endured the cruel disappointment of being disqualified. The poster boy buried his face in a towel and wept bitter tears of anger and embarrassment; then gathered himself, pale and somewhat heroic, to be interviewed. Later his disqualification — for lifting his foot as well as his bottom while throwing — was overturned, but it was too late. He wanted to be a part of it but he was not to share the glory.
The late-night, last-night thriller between Pistorius and Oliveira was the climax for the crowd before the spell broke and real life reclaimed them all. Pistorius himself was aware of the mood. “It was so special to me. I was very nervous before the race; I wanted to give the crowd something. Usually I block out the crowd but tonight I actually heard them as I came out into the final straight. This has been the most amazing, the greatest ever Paralympic games.”
And what of the crowds, both those who came to the Olympics and those who thronged in their wake to the Paralympics, eager to grab some of the magic?
They knew it had to end, like all the entrancing theatre.
The Queen had made a cameo performance in the sky; Olympic rings had soared; wheelchairs had flown; the world’s greatest athletes had proved unbeatable; the great dramatic plot had delivered. The world’s greatest athletic running track bore the bladeprints as well as the footprints of giants.
And what of the future? West Ham United may yet end up owning the £431 million stadium. Or they may not. Twenty thousand seats may be stripped out, at a cost of £20 million. Or they may not. There will be deals and wrangling as the magic fades and mundane conflict reasserts itself. For now, let us hang on to the memories of the stardust that fell and the good dreams that came true.
10-07-2012, 09:50 AM
Without doubt, the sight of Sophie Christiansen winning a gold medal in the 1A grade of paradressage on her horse Rio. This is the level – walk only – for the most disabled riders. To watch her is profoundly moving, for Sophie’s body is constantly restless with uncontrollable cerebral palsy spasms, but she can nevertheless communicate with her horse. They have created a beautiful, hard-earned partnership. Rio – let’s hope the name is prescient – accepts her involuntary movements, trusts her, and does his best to interpret her wishes; she in turn trusts him not to take advantage of her frailty and misbehave.
Together they are a study in generosity, calm and concentration; as a result they won three golds: two individual, one team. Sophie is 24; she was born two months premature and very nearly died. She now has five gold medals (two from Beijing) and also a first class degree in mathematics. Her smile, after achieving 84 per cent for her individual medal, was one of the most dazzling from the Games.
10-07-2012, 09:52 AM
Shoot the scriptwriter. It’s not just the plot of The Archers that’s been hijacked by EastEnders, you know; it seems my life has too. The drama has got to the point where you say: “No, this isn’t believable. This is too much – it’s just too far-fetched,” and you reach out to hit the Off button on the TV remote. Except you can’t; because what’s happening is for real.
The Paralympics had been on the horizon for me as a writing assignment for about nine months and I’ve been preparing myself, mentally and physically, during that time. This wasn’t self-aggrandisement; I wasn’t one of the athletes, who’d spent years, sometimes lifetimes, getting ready for London 2012, but it was an acknowledgment that the job was going to take me to the margins of my physical abilities.
Even as a properly fit tetraplegic, I would have to operate way outside my comfort zone. When you are relatively newly injured, as I am, there is all the difference in the world between bumbling about in your own home in a wheelchair, tackling ramps you know you can get up and down, and being in an entirely new environment where you don’t know what you will face.
It was going to be a challenge, for sure, but I was determined to cope. What I didn’t bank on was my body letting me down. The problem crept up on me slowly, over weeks, perhaps months. By the time I had my cases packed, I had to admit I was in serious trouble. I looked six months pregnant and could no longer sit up in bed. I could hardly lean forward in my chair; or lift myself from chair to bed. Everything I tried to do, my body fought me.
My visiting niece and her husband, both vets in France, kneaded and tapped my guts as if I were a Charolais heifer with a bad case of distention, listened to the timpani sound and shook their heads. “Lot of gas in there. Maximum dose of paraffin oil needed; enough to treat a large cow.” But, as we discovered, you can’t get paraffin oil for human consumption in Britain. It’s one of those delicious areas where both British and French medical establishments are convinced the other is barmy.
I had a bright idea. “A knitting needle,” I said brightly. “Like we used to do on the farm with bloated sheep. Just pierce my guts and let the air out.” Funnily enough, the vets weren’t keen.
And so with a week to go to the opening ceremony, I ended up re-admitted to the spinal unit in Glasgow. An X-ray showed my poor old paralysed innards were in a bad way. It was official. What my family had always suspected was true: I was full of c***. The log jam went right back up into my small intestines.
What ensued was a race against time to make London 2012, sandblasting my insides with some of the strongest drugs Big Pharma has in its armoury. After five days, about 50kg lighter, I crept home, weak as a kitten. But thanks to my consultant, Mariel Purcell, who ordered the drugs in at the top end, and my old friends the nurses who dealt with the consequences at the other end, the trip became possible.
So my husband got us to the train on time – Susan, my physiotherapist, and me.
It was a rush. When you are in a wheelchair, estimate realistically how long stuff will take, then double it. We didn’t have time to swing past the surgery to pick up some drugs I needed in London.
And what happened next was the terrible bit; the point where you shake your head and change TV channel. Except we can’t. After he left us, Dave decided to fetch the medicine and post it to me. On his way to the doctors, he was in a head-on collision in which it appears the other driver was taken unwell and drifted across the road. Tragically, the man died.
Dave escaped via a back door, cut and bruised by the airbag and deeply shocked. That he is still alive, I am convinced, is due entirely to the life-saving properties of the Volvo estate we had bought purely because it had flat leather seats, perfect for me to slip onto, and a huge boot for the wheelchair.
It is impossible to celebrate life when another family is so desperately bereaved, so I will say little more. Suffice to say that my poor husband, for the second time in two and a bit years, had to cope all on his own with the consequences of a most dreadful accident. I could not be there for him. He refused to let me come home; I had an important job to do.
But only with a massive application of rational willpower can we shake off the dread that we did something bad in a past life; and even if we allow superstition to enter, we have to convince ourselves that the guardian angels, rather than deserting Dave that afternoon, looked after him particularly well.
So I stayed at the Paralympics; and found some balm for my soul in the life-enhancing glory of the athletic achievements. I am one of the lucky ones able to say, “I was there,” at an event that I believe was a game-changer for disability. Susan, a most magnificent slave, looked after me beyond the call of duty, hauling me on and off shower chairs, pushing me long and tiring distances around the Olympic Park, feeding and watering me when I was too stressed to do either.
Without her, I couldn’t have done it.
So we witnessed some of the most memorable sporting sights: Ellie Simpson; Sarah Storey; Richard Whitehead; Oscar Pistorius; Sophie Christiansen; David Weir. The stuff that left you speechless: blind long jumping; sprint cycling; cerebral palsy track running. Every single event, every single competitor, win or lose, was a drama for the telling. But now the Games are over, I hope the scriptwriters are sated; and I hope they go away and leave all of us in peace.
10-07-2012, 09:54 AM
The air has an autumn tang, that unmistakable clarion call for fresh challenges. I am transported back to the gloom of Rawcliffes, the ageless school outfitters, the temple of starched shirts and pleats and to-die-for hockey sticks with red towelling handles; the place where your mother insisted on buying you the policewomen’s shoes that would blight your life.
One sniff of that morning coolness, of the leaves on the trees turning brittle, and it all comes back: the excitement of writing your name on the front of pristine exercise books; the thrill of new subjects to study. June, by contrast, has more tyrannical associations. The smell of freshly cut grass and the sound of tennis balls just evoke guilt and dread and the ticking of a clock in a silent examination room. Even now, 30-odd years since leaving university and summer exams behind, I still feel a vague sense of guilt watching Wimbledon.
However old I got, though, the first smell of autumn evoked a new-term tingle of change and promise; beginning with school, then, later, at university, when it heralded the joy of escape from home and parents who still tried to make me wear policewomen’s shoes, even when I was 18. Autumn was just the best time. As I got older, I always found something to fill that craving for fresh adventures: rugby touchlines on a Saturday morning; clipping horses for winter work; starting evening classes; going on a week’s walking holiday.
Ah, walking holidays. The paradise of autumn lost. Post accident, I can’t sniff the chill in the air and daydream. Action woman can’t plan action when she no longer exists, except in her memories. This September, after secondary health problems and my stint at the Paralympics, I am like a burst balloon, and the biggest excitement I face before Christmas is an operation on my ingrowing toenails. My body, in rehabilitation terms, is set back about five months, and, if I’m not careful, my sense of humour is ditto.
So before I get maudlin, allow me to tell you about five men of a certain age who are, as I write, doing the most wonderful thing. It’s so wonderful that I warn you I may self-destruct with envy in the telling, as will anyone who loves the idea of rediscovering freedom by putting their life in a light rucksack and heading for the hills, leaving behind responsibility, big decisions, mobile phones and car keys. And the best thing about this famous five, dear readers, is that they are doing it in my name, and that of Cherry Barclay, also paralysed by a fall from a horse, in order to raise funds for Spinal Research. At time of writing, the money pledged has passed the (totally amazing) £37,000 mark.
Eight years ago, five ageing enthusiasts, all of them the wrong side of 65, plotted an ambitious venture: to walk from the Mediterranean to the Adriatic via the Alps, devoting two weeks every year to the trek. It was, as one of them put it, a chance to see Venice or die. Quite possibly both. One of the men in dodgy shorts is my friend and former editor in Scotland, Magnus Linklater, who used to cheat by taking his BlackBerry with him: he’d then e-mail us from some goat path or other to suggest we improve the intro on the Alex Salmond story we’d just filed.
For the codgers, as they call themselves – motto: “Plod is God” – it has been a long, drawn-out battle to reach Venice before any of them reach 80. They are mostly retired: two bankers, a brewer, a journalist, a farmer. One of them has had a touch of heart trouble; one is diabetic; there is a recovered cancer patient, and an asthmatic. Aches, pains, pulled muscles and strained backs are the constant stuff of conversation. They are hikers, not serious mountaineers.
But they are also ambitious. The chance of achieving something which, if not unique, is certainly rare, appeals to them. Lots of people cross the Alps from north to south: it’s the way the valleys curve. The codgers’ route, west to east, year after year, has meant plotting a course through high passes. Was there a chance that they might one day walk into Harry’s Bar and order Bellinis all round? As the codgers are wont to say: if it’s worth doing, it’s worth doing very slowly.
They established two ground rules from the start. They would do nothing dangerous, and would aim, wherever possible, to sleep between sheets. Both rules were soon comprehensively broken. They walked across glaciers and snowfields, up and down extremely steep passes, taking in the odd 3,700m peak, and got lost on numerous occasions.
On September 4, they set off on the final leg. Yesterday, Magnus e-mailed me: “We are now deep into the Dolomites, which are awe-inspiringly vertiginous, and offer the kind of challenge that our elderly group were not entirely prepared for. What we have been confronted with are cliff-faces and chimneys, up which we scramble, aided by wire ropes clamped onto the rocks, hanging onto them for dear life in an entirely undignified manner. But thus far we have survived, aided by the local grappa. Codger morale is high, but Venice seems a long way off.”
Next week, all being well, David, Martin, Peter, Magnus and Toby will descend from the mountains and stagger into Harry’s Bar. What a way to remember autumn; what a way to celebrate life. How much I admire their courage, tenacity and spirit – and confess that, even fully fit, and more than 20 years younger than them, I could never have faced such steep places. It’s for Spinal Research. Please support them if you can.
10-07-2012, 09:57 AM
After the summer’s drama, deadlines and headlines comes the bliss of retreat. So begins a period in which I feel curiously becalmed, drifting up some quiet backwater where the clamour of the world cannot reach me.
People tell me I should tweet. It makes me smile; if only they knew. Right now I can hardly stir myself to read texts, let alone answer them; and opening e-mails has become a selective art. Phone calls are a menace; indeed all communication is far too much like hard work.
Instead, I put my phone on silent and succumb to great slabs of sleep, sleep like geological rock strata, which crush me at the most unlikely moments: mid-conversation; mid-meal; or the moment I open a newspaper and start to read. My head droops like a dowager in her bathchair and I wake an hour, two hours later, legs agonisingly stiff, neck aching.
And you know what I’ve discovered? Maybe I should tweet this, as it’s so significant. That nothing changes if you step out of contact for a while. Nothing matters a stuff. It’s empty noise. The world is still there; you’ve missed nothing.
Future history, of course, will be written by those who live on their smartphones, just as in the past it has been written by those who won the wars and gained access to quill and ink. Online dwellers will have mastery in centuries to come. But then I have always wanted to read history as viewed by those who lost the battle and ran away. The barbarians mooning at the Romans; the Bronze Agers forlornly chipping cups and rings in the stone even as the Iron Agers came over the hill crying: “Guys, that’s so last year”; the illiterate Confederate farm boys stumbling home from Gettysburg. In future ages, that’s me.
Truth be told, I am fragile right now. Even more bowel problems – one of the great, unrecognised, unseen blights of a spinal cord injury – have knocked me sideways. I find myself mulling over how the balance of power has shifted in my life. While I sit and gaze out of the window, as dynamic as a doorstop, my husband goes and chooses a replacement car; my son moves into his final student flat; my carers and cleaner and friends, desperate to help, create order around me. But in reality nobody does things the way I would do it. Nobody asks the right questions of others; nobody sees the fast, intelligent, efficient way to do things that I would. Even the dog disregards me. Superwoman swallows arrogance, bossiness, frustration and rage. “Thanks so much for your help,” I smile.
My father ended up on sticks, then latterly in a wheelchair after a car accident when I was 14. I spent much of my life being roared at by him for doing stuff wrongly. I am certainly not about to reproduce family form. But God how hard it is to go from being a make-soup-book-holiday-ride-horse-pick-flowers-get-haircut-all-within-the-hour kind of woman, to this passive observer I have become.
Last week was horrid. I had to produce a script for Her Majesty’s Revenue & Customs, which, a year ago, took income tax from my personal injury award. Now, this form of compensation is tax-free. I know this; accountants know this; tax inspectors know this. I can quote the exact words from the Citizens Advice website: “Other types of income which are non-taxable and can be ignored for tax purposes include: compensation or damages awarded for personal injuries whether received in one lump sum or over a period.”
But on the basis I’m still writing, HMRC argues I should pay tax. To make my case, I’m having to do what I’ve always tried to avoid: write down a grim litany of all the things that are beyond me. As I spend my time trying to be as optimistic as possible, and as I’m fresh off the back of the Paralympics, this resembles a bucket of cold sick over the head.
“Dear HMRC, I am now profoundly disabled. Tetraplegic, in fact. Although I can – occasionally, and the last time was three months ago – stand on a frame and shuffle a few steps, this is not functional, so I am wholly dependent on a wheelchair.
“Here’s what I can’t do. Because of my paralysed hands I cannot do shorthand any more. I can only write very slowly and shakily. I cannot turn the pages of a notebook, except in page-clumps of ten. I can only use a phone very slowly and laboriously. I do not have the dexterity to press the buttons on a Dictaphone. It takes me hours to cut and paste copy on a computer. I type with one, sometimes two fingers now, as opposed to high-speed touch- typing pre-accident. I cannot open doors or negotiate pavements to go places by myself. I cannot tie back my hair or button a jacket. The tools of daily journalism are out of my reach.
“You want to know more, dear inspectors? About why I can’t work full-time? It takes me two hours to evacuate my paralysed bowels every morning, using a combination of suppositories and anal irrigation. You’ve no idea what a laugh this is; you really should come and watch. It then takes another 45 minutes to shower and dress. I need help to dry myself, get onto the bed, put on my bra, trousers, socks and shoes. I usually reach the kitchen table about 10.30am, when I am often so exhausted I fall asleep for an hour. At 4pm I fall asleep again.”
I bet billionaires and sharp businessmen don’t have to humiliate themselves thus for a rebate. Anyway, let’s have some good news. Last week, at Riding for the Disabled, I got back on dear Nelly after a gap of two months. Trying to emulate the dressage stars from the Paralympics only made me realise how easy they make it look. But Nelly remembered me; and being on her, however briefly, restored power and energy to me. Next week, we’ll kick on.
10-07-2012, 09:58 AM
We are all groupies now. Round my neck of the woods, at weekends, the roads are high-vis yellow with recreational cyclists, every one of them a Bradley Wiggins or a Sarah Storey in their dreams. City bike-shop managers see their tills jangling; rural dwellers moan at the result. “Bloody cyclists – you can’t move for them,” the Eddie Grundys grumble.
I love it; love seeing grown-ups revealing their inner child, pounding the pavements or the tarmac or the mountain tracks; all of them, in their heads, starring in their own little endorphin-fuelled fantasy of greatness. I love to hear of a friend’s husband, smitten by a stroke, who is now going to the swimming pool, directly inspired by watching the Paralympics. He is too disabled to swim, but he is hoisted into the pool for hydrotherapy exercises and my friend says the improvement in his wellbeing is fantastic.
And then there’s me, in my dreams even more of a wannabe dressage rider since I saw Lee Pearson, Sophie Christiansen et al at Greenwich. How long is it since I last went to Riding for the Disabled? Six weeks at least. Long enough for the pelvis to have frozen, the torso to have collapsed and the legs to have gone rigid with unwanted muscle tone, which is the crippling side-effect of some spinal injuries.
You’d think all paralysed people would have soft, co-operative little legs, wouldn’t you? Like the paraplegic wheelchair racers, who fold their legs into an impossibly small space under them, like floppy little appendages. But not me. Mine are like hostile telegraph poles, set against me, too heavy and too strong for me to lift. Even carers struggle to bend them. Think second-row forward with rigor mortis.
As a rule of thumb, your average amateur able-bodied sportsman or woman loses fitness very fast. For every two or three weeks of training you miss, you slip back about six weeks. Detraining, they call it: the equation that decrees that, if you are inactive for any period of time, you will spend two or three times as long getting back to where you were when you stopped.
But if you have a spinal-cord injury, the ratios become much crueller than that. Because of my secondary health problems, I’ve been out of the game for a couple of months – no riding, no physiotherapy, no exercise. Which, by my estimation, means that I’m now about eight months’ stiffer and weaker than I was. This is, to put it mildly, a bit unfair. But there you go. It’s a long road, but I just have to get on with it.
First session back to ride Nelly at the RDA at Bannockburn. The mare’s eye has never seemed kinder and calmer, but the hoist to lift me onto her back has never seemed more like a witch’s ducking chair. Will I sink or will I swim? Either way, I’m a goner; it’s going to hurt like hell, despite the precautionary painkillers I’ve gobbled. Once I’m lowered onto her, my instructor, Sara, and her colleague, one on each side, take my thighs and very gently pull them back and out, to fit behind the knee rolls of the saddle. My pelvis screams at being opened up and goes into spasm, jerking my upper body down towards the horse’s neck. I prop myself upright, wedging my arms against the front of the saddle, fighting a sudden wave of nausea. It’s a really weird sensation: literally fighting your own body as it breaks out of your clutches.
It isn’t nice for Nelly, either. The essence of good riding is softness. To her, I must feel like some iron-limbed vice, grinding and twisting on her back. But what is so special about the top RDA horses is that they instinctively know that some riders are vulnerable, and they forgive you. They wait. They stand. “Grace is laced with muscle and strength by gentleness confined… There is nothing so quick, nothing more patient.” I’ve seen Nelly being ridden by the able-bodied staff, and I’ve seen her leap sideways and tank and take the mickey. But when disabled riders are on board, she knows and simply looks after them.
The worst of the spasm passes. After five minutes being led around the school, I am able to relax my arms, but I still feel like one of those wooden dolly pegs with which my mother hung out the washing in the Sixties. Then, after another ten minutes’ walking, my pelvis starts to unlock and swing with the horse’s movement. The minute I soften, she starts to walk more freely; and suddenly we are in tune and I can start to ride independently. When I get off, soon afterwards, my legs are actually floppy, my stomach muscles working again. That’s what good physiotherapy riding is.
After four days I am back again. My pelvis is just as tight at the start, but we persevere and it softens with the swing of the horse.
For the first time in weeks, I forget I am paralysed and glory again in the motion and the empowerment. We have another lesson planned, this week, and then, depending on how that goes, there is a dressage competition for which I am qualified. I could live out my little Paralympic fantasy; let my inner child flourish. Is it madness to think I might make it? Probably. When Sara hoists me into my wheelchair, Nelly swings round from the landing area and her prehensile velvet lips dig at my hands, demanding Polo mints.
I am reminded of lines from John Anthony Davies’s sweet poem I Saw a Child: “I saw a child, no legs below/ Sit on a horse and make it go/ Through woods of green/ And places he had never been… I saw a child who could only crawl/ Mount a horse and sit up tall.” Let’s be dream chasers, all of us.
10-07-2012, 09:59 AM
Phew I was way behind. Enjoy.
10-07-2012, 12:10 PM
Oh great. Now I need to ride a horse, not want, NEED. I'm surrounded by working horses, they have jobs, and that job is not to carry my lame ass around. Cowponies are the best at what they do...jump sideways.
This all made me cry and I don't know why, but thank you.
10-07-2012, 12:56 PM
Phew I was way behind. Enjoy.
You must be exhausted but it was well worth the effort - many thanks!
10-07-2012, 04:36 PM
Thank you, thank you, thank you.
I do ride my horse and I do realise every day just how lucky I am.
10-07-2012, 05:11 PM
Something has come up. I am in trouble, threatened with criminal action that carries a maximum penalty of an unlimited fine or two years’ imprisonment – or both.
When I saw this update in my email, I was afraid that you, Fly_Pelican_Fly, had gotten into some sort of trouble for re-posting Melanie Reid's columns! Thank goodness that's not true.
10-07-2012, 07:15 PM
10-07-2012, 09:33 PM
Oh great. Now I need to ride a horse, not want, NEED. I'm surrounded by working horses, they have jobs, and that job is not to carry my lame ass around. Cowponies are the best at what they do...jump sideways.
This all made me cry and I don't know why, but thank you.
It isn't the horse. It's the thrill of being able to do something she love. Btw, I've disliked horses since my days as a quarter horse stable boy. I never could figure out their purpose either.
10-07-2012, 11:22 PM
I had horses until I was 30 and moved to a city. I miss them.
What would be awesome is to win the lottery and buy a dressage Morgan. It's like they have no knees, such a smooth gait. And dressage trained, he'd just kneel down before me whilst I hauled my butt up there!
10-23-2012, 02:52 PM
My horse knows it is me. For others, he is a twit. For me, he is a gentleman. When I am ill, he knows and just walks and walks. When I feel better, he goes faster. He just knows.
My new horse doesn't know but he will learn, I hope. We just don't trust each other yet.
11-27-2012, 01:45 PM
And that's fine. She is writing about what she is experiencing herself. If she experiences spasms, then she writes about them. If she does not experience nausia then she does not write about it.
She does not experience financial difficulty, so I would be suprised to hear her writing about something she does not suffer.
She does not owe a duty to cover SCI in all it's entirety; she is limiting herself to just her experience. And that is fine.
The burden should be on others who are suffering financially to relate their struggles and to get them published.
But those in financial difficulty won't be published - so Sunday Times readers get a skewed view of life for most disabled people.
That's not a criticism of Melanie Reid - who writes brilliantly about her experiences - it's just a point about how life as a common or garden disabled person is rarely represented in a media awash with 'benefit scrounger' rhetoric as Atos destroys the lives of many disabled people.
Not a criticism of Ms Reid at all.
03-17-2013, 08:30 AM
I hate to nag, but any more news from Melanie?
03-29-2013, 07:07 PM
I hate to nag, but any more news from Melanie?
Hey guys! Sorry, I've been so snowed under.
It's a shame for the Community that Melanie's writing is only available via subscription. I'll post the articles asap.
03-29-2013, 07:23 PM
Who’s been sitting in my chair?” said Daddy Bear. “Who’s been sitting in my chair?” said Mummy Bear, who had the unmistakable feeling she might be trapped in a fairytale. “And who’s been sitting in my chair?” squeaked Baby Bear.
The point is, there was no debate. Everyone knew who sat where. Daddy Bear’s seat, for this was in the days before metrosexual bears, was in the most powerful place, dominating the room, facing the door, with a window facing on to the path leading into the forest.
Mummy Bear’s seat, for this was in the days before Marks & Spencer’s Dine in for Two for £10, not to mention the delusion that women can have it all, was nearest the stove and her chair was, as all mummy bears’ chairs always are, half pulled back from the table so that she could temporarily rest one great hairy haunch on it as she tried to grab a mouthful in between looking after everyone else.
Baby Bear, for this was before children became emperors, was squeezed into the subservient place at the bottom of the table with no view and no iPhone to play with.
Ring any bells? Does power seating endure in your house? Who sits where? Do chairs in the modern family have names on them? I ask because I don’t know the answer. But I have been amusing myself recently by conducting experiments on an unsuspecting Daddy Bear.
Ah, the psychology of sitting; who would ever have thought it would be such a rich vein? Chairs are now my life; I live at chair level. Forget class-consciousness – I am as chair-conscious as one can possibly be. Every day I study the territorial manoeuvres of seating.
At our kitchen table there is one totally dominant power position. In the gloriously nutty parlance of feng shui, it faces your “success direction”. You have in front of you the french windows, with an elevated view of cars approaching up the drive. All the primitive early-warning systems lie before you: the rattle of the cattle grid, the birds feeding outside and the dog asleep inside. The place offers the best light, generous space, and warmth and security from the Aga behind. It is, in short, the king’s seat, the cottage’s throne, the dog’s b*******. For all I know it probably has a ley line running through it; in fact, an old hippy once told me that according to a water diviner it did.
But the funny thing is, nobody is conscious of any of this, because nobody’s sad or trapped enough to observe it, except me. But every single person who comes in our kitchen chooses to sit down in the dominant spot.
I play a game. Nightly I shove away the chair, so that in the morning the throne space will be free and I can wheel myself into pole position and get my legs under the table. And what happens? Every morning, unconsciously, Daddy Bear moves the chair back into the empty space and sits eating his porridge there. It’s what a man is programmed to do: reclaim the daddy-bear spot.
Come lunchtime, I push the chair away again. Friends arrive for a coffee. What do they do? Push a chair back into the magic space and sit on it. Baby Bear arrives home on a flying visit and what does he do? Yes, you guessed it. He prepares vast platefuls of food, pulls the chair into the daddy-bear space and plonks himself down to devour it.
Then there is the living room. As a child, I would never have dreamt of sitting in my father’s or my mother’s armchair. Even to approach them when the room was empty felt like trespass. All the power symbols in the house lay on my father’s chair-side table: sharp scissors; penknives; keys; fuses; torch; his diary; newspaper; books. The chair faced the door, the window, the fire; he controlled the room.
My mother’s space was friendlier, but just as protected. Her dictionary for crosswords; reading glasses; free charity Biros; hand-embroidered cushions. As they grew older they barricaded their positions with more paraphernalia: remote controls; mail-order catalogues; letter openers; elastic bands; pills.
And from where I sit, in my mobile chair, I can see how all family members, in their own way, cultivate their own bits of territory around them; their own seated power base.
In my wheelchair, I feel strangely rootless without a permanent space to colonise, so I wheel restlessly around, putting down markers everywhere I go. The paraphernalia of my new condition: gloves; letter openers; glasses; phone; remote controls; pills. Aaaargh, help me someone. Mummy Bear is turning into her parents 30 years before time.
After reading my recent gloomy columns, my wonderful big sister has sent me a resolve-stiffening e-mail. “Wasn’t it Dante who said: ‘Do not forget, when you are in the darkness, that light still exists.’” She tells me off for beating myself up and says that I must stop my irrational tendency to compare myself, not with my actual pre-accident self, but with the dream body of a world champion sportswoman. “Be kinder to yourself. You have recovered what, in comparison with how you were when I saw you on April 4, 2010, two days after your accident, seems like a miracle.”
So I listen to her. And I went, totally unprepared, to my dressage competition, the Scottish Riding for the Disabled Championships no less, dear readers. And Nelly looked after me, as ever, and I came last in a class of five other quite awe-inspiring rider and horse partnerships. I need practice. “Who’s been sitting in my saddle?” said Mummy Bear. Not me. Not enough. Roll on the next competition.
03-29-2013, 07:27 PM
There is a particular kind of bond, I find, between strong women of a certain age. Say 47 to 63, give or take a few years. Among friends it exists, of course it does, but even on meeting strangers within this age band, I identify a wry, unspoken sense of kinship.
Clock the laughter lines and that innate sense of “Don’t mess with me”, and understand that, although we’re not men, and therefore boast no medals and wear no regimental ties, we shared comparable battles and made comparable sacrifices.
We followed the big guns, the Greers and the Steinems. We’re the second wave of feminism; we were post-Beatles, post-bra-waving, post-hippy, post-mass rebellion, post-sexual revolution and all those Sixties clichés. Our job was much harder and less newsworthy. It was to colonise the new world.
Yet how to label ourselves now? Best, perhaps, just to say that we were women who came of age in the Seventies. Seventies survivors. We had to prove, again and again, in an institutionally hostile world, that our bodies belonged to us; and that, even if full equality with men was a long way off, we had a right to everything they had: good jobs, freedom, respect and self-determination.
It wasn’t an easy task. We forget how Neanderthal the Seventies were, and our own children are now so blasé about women’s entitlement that they think things have been hunky dory since the Twenties. It was in the Seventies, amid the groping and the preaching and the leching and the gender discrimination, that a fierce flame was lit inside me; the creed that said, “This is my body and nobody’s going to tell me what to do with it.”
That defiance still burns in the guts of a generation of women. Scratch the surface, and there was nothing more fierce and yet naive than a Seventies feminist. Some were lesbians, some were beauty queens; most of us were somewhere in the mousy middle, waiting for highlights and hair mousse to liberate us. But we were all, in our own way, stormtroopers.
We had to be. Does anyone remember how difficult it was? Even for those of us who went to university, you had to work damn hard to stay in control of your body. There was contraception and abortion, but both things required determination to access. Women were still considered by most as subservient: expected to marry, have babies, and stop work to bring them up. They were to serve their husbands, be virgins on marriage and not live in sin.
Working women did not wear trousers or run marathons. Girls did not go into pubs alone. Many places barred women; others just menaced them. Comedy shows on TV were so sexist that few can be shown now. Adverts devoid of irony dangled female bodies like bait.
Men largely ran the world, which is why they leered, made vulgar comments and groped us. Jimmy Savile and his like were just the ones we know about. Everywhere, eager, star-struck, innocent teenagers were drawn into situations in which they were helpless.
Sex pests were common; society complicit. I wasn’t in the stratosphere of Top of the Pops. My experiences as a teenager were more Starsky & Hutch meets Tess of the D’Urbervilles: being groped in the wool shed by the sheep shearer, then – doh! – letting him drive me home from a young farmers’ dance and being assaulted in his car when I refused to have sex. (What was sex? I didn’t have a clue.) I escaped with bruised breasts, fury at my own stupidity, a dislike of men who smelt of sheep; and a new gem of secret knowledge. So that was what a man’s penis looked like!
Women of my age have never stopped being on the front line. It was us who fought to return to work full-time within three weeks of giving birth; and what macho fools we were, too. But our sacrifice allowed those mothers who followed us a better bargaining stance.
It was us who went to work in male-dominated industries and slapped down the gropers and the barrage of sexism. (Funny how the small men always did it when you were sitting down.) We established culture change on that, as we did on many, many things.
Now the baby-boomers are tending their geraniums, we’re the big players, still out there earning money and influencing how the world spins. We’re Christine Lagarde and Theresa May and Harriet Harman and we’re also the anonymous engine, if not always the figurehead, of almost every business, school, college, department, professional partnership and not-for-profit organisation you like to mention. We did this for you, girls. Don’t waste it.
But sometimes I get weary when well-meaning idiots like Jeremy Hunt force us to refight old wars. He’s offended by abortion law? Tough. Why is it always men, usually older, often religious, who want to control women’s bodies? And there are new battlegrounds. Why is exactly the same type of relic, who 40 years ago told us not to have sex, not to use contraception, not to have abortions and not to mix motherhood with work, now trying to stop us from seeking euthanasia at a time of our choosing? Women’ll win that battle too: just give us time.
For me, the quiet rebel, the biggest irony is that injury has done to my body what men never could: take it out of my control. Will it ever come back? The good news is that my strength is reviving and I am slowly regaining the movement I lost over the last two or three months. And my toenail surgery is successful – so far. “Your toes,” said Iain the podiatrist, “are healing better than an able-bodied person.” This pleases me enormously. It’s worth fighting on.
03-29-2013, 07:33 PM
Snakes and ladders, as many of you may already know but I didn’t until I looked it up on Wikipedia, has its origins in an ancient Indian morality game. The lesson being that one climbs up and attains salvation by doing good, but plunges downwards to a lower life by doing evil.
And here’s something that I never twigged when playing it as a child – on the board there are fewer ladders than snakes, and the snakes tend to be longer than the ladders, a calculated reminder from the spiritual authorities that the path of good is much more difficult to tread than the path of sin.
As analogies for my situation go, I’m not so convinced by the good versus sinful bit, although I must be mindful of the letter I received from a Times reader telling me that, “God puts you where he wants you to be, but the reason is never told; it is for you to discover.” This homily induced such a flash of rage in me that I almost kicked the dog, which would have been deeply unfair on my fat, lazy, gently bad-breathed Staffie. Quite apart from the fact the kick would have constituted a miracle.
So, sorry, I don’t buy the good versus evil argument, and I’m as far from believing in divine pre-determination as Richard Dawkins. But I do think snakes and ladders is a nice symbol for the unpredictable vicissitudes of my life: a game of optimism versus frustration; a supreme test of patience; an eternal reminder of Robert the Bruce learning to “try, try and try again” from the spider spinning its web.
Fact: when you’re recovering from a broken spine, or indeed any life-changing illness or injury, you will always land on the snakes more often than you encounter the ladders. Fact: you also learn, painfully, that the snakes never go away. Fact: happily, neither do the ladders.
Right now, thank goodness, I’m definitely clawing my way back up to the strength I had in early summer. A new spirit of optimism fuels me. The arms are getting stronger, which means the ramps in the house are just a little bit easier to push up, and while I can’t yet stand again, I can lift my backside from my chair a little higher than I could.
Best of all, I am able to sit up in bed again. You have no idea how cheering this is. For about six weeks, after my guts impacted, I was reduced to a ghastly beetle-on-its-back helplessness which took me straight back to the early days.
And am I imagining it, but can I feel a tiny bit more when my feet are on the floor? Did the front of my left knee always hurt so much when I rammed it into a table leg, or are the nerve endings regrowing?
Then my hands. I’m able to stop wearing leather pushing mitts around the house – items that used to be essential – because my hands have recently toughened and strengthened. My palms are now as leathery as a Masai warrior’s feet.
I am constantly in surveillance mode, but sometimes the improvements are so gradual that I need other people to spot them. Last Sunday some old friends, the precious kind that have been in the gang right from university to ski holidays to weddings, christenings and graduations, came bearing lunch. I hadn’t seen them since long before I had my setback. They noticed improvements both in my dexterity and upper-body mobility that neither my husband nor I can see.
Do these changes spring from neurological improvement, or are they happening simply because I have got better at using what limited function I have in this strange new body of mine? In the absence of a scientific answer, it comes down to whether you are a glass-half-full or half-empty type.
Dave has no doubt. Dear Dave. His middle names are unbounded and optimism. They have to be: he supports the Scotland football team and the Scotland rugby team. When he was young he captained his local Boys’ Brigade football team. They weren’t very good either. His undernourished ragtag army would trail off the ash pitches at half-time, 9-0 down, and sit in the freezing, unlit changing rooms, heads down. “Come on,” he used to rally them. “We just have to get out and score ten in the second half. We can do it!”
In truth, he says, the team would end up being beaten 18-0. But he had to lift them, he says, had to stay positive. Just in case. “If you think you can’t win, you definitely never will.”
Things in the saddle are improving, too. I am marginally more supple; and at my last session with Riding for the Disabled, coached by Sara, I successfully managed a shoulder-in. This is a simple dressage move where you ask the horse to angle its body and yet continue to walk forwards, its feet following three tracks. It involves hand and torso co-ordination. Generous as ever, Nelly gave me what I asked for.
At my recent dressage competition, unbeknown to me, a fellow spinal victim of a horse-riding accident was in the small audience. I call him my Zen master. Afterwards, he e-mailed me: “I saw a horse striding with absolute concentration, so aware of her huge responsibility to you. A glass of water would not have spilt on Nelly’s quiet back.
“After my injury, I used to wait for the time I would be better. Cruise until I was back to my big stuff. Then I realised that whatever I am doing right now is part of my life. Getting better will happen anyway, and to discard the summit of the mountain and put my all into every experience, every foothill, every unsteady step, that keeps me joyful on this journey without end.”
So I cling to my ladder, and smile at the view.
03-29-2013, 07:40 PM
It was once said, most perceptively, that personal muddle and disorganisation are characteristic of many journalists, partly because such things are less of an impediment to success in journalism than in other careers. I rather think the same applies to cooking. The talented produce stories or soufflés out of apparent chaos, and are acutely conscientious while pretending not to be (another irritating characteristic). That’s what makes the good guys good guys. Whereas our neat and tidy contemporaries, the ones who preferred process – “I’ll action that” – to getting things done – “JFDI” (just effing do it) – went into management jobs at the BBC. And look what happened to them.
Feel for me, readers. At the time of my accident, my office computer proudly bore two Post-it Notes on the bottom of the screen. They were from my boss. One said, “Your desk is a health hazard”; the other, “Your desk is still a health hazard”. I prized them because I knew he was as bad as me; it was just that he had a PA. It’s funny to think – somewhere, that desk of mine, like the Mary Celeste, must be rotting gently, the drawers filled with half-eaten sandwiches, unanswered letters and a mountain of yellowing paper carrying creative ideas only two and a half years out of date. It’s a time capsule to pointless endeavour and the instant obsolescence of journalism, chaps. Preserve it.
Out of hospital and working from home, I have, of course, replicated the same comfort zone in my office, only worse, because my hands are useless and the piles of paper I’ve created are so high and haphazard that they are starting to destabilise, like steep hillsides in heavy rain. There are rats in there, I swear. (OK, this may be where the analogy between journalism and creative cooking starts to fall down.)
Everything is out of reach, out of control, and sometimes, to be quite frank, I feel on the verge of madness. Everything is fine, just fine, I tell myself, as long as I can meet my deadlines. The paperwork thus becomes a larger symptom of my denial about my injury. I make a promise: I’ll tidy it up when I feel a bit less exhausted. When I get well. When normal life resumes. When I’m on my feet again. Yeah, right.
So I take the plunge. Many months after being pressed to do so by those who care about me, or at the very least worry about vermin, I get a secretary, a friend from the village. Sarah begins the process of sorting me out. And to all the people who have invited me to do things, open things and write things and, much more importantly, who have sent me the most moving notes of warmth and support, I promise you will be hearing from me. Soonish. But probably six months too late, for which I am profoundly sorry.
Sarah’s very strict. We can’t even have a cup of tea until halfway through our session, and then only if we earn it. But the good news is we have already mined down to clear desktop in two places. I came across a brief e-mail, too, representative of so many I receive. “Your column is such a lifeline,” wrote a Times reader. “I have been ill for a year and unable to do very much, but have taken inspiration from your writing. I wish you tremendous fortitude and buckets of luck. No need to reply.”
So for all the magnificent, stoic, cogent, kindly people who hope every week that I have better news to tell, for both my sake and theirs, here is some. And high time, too.
I think I may have turned another positive little corner. Not only am I getting back the strength I lost over the summer, but I have noticed some tiny neurological improvements. There is a hush-hush-whisper-who-dare element to this because, almost in mentioning these things, we fear, even the most non-superstitious of us, that they will be snatched away. And in saying so publicly I am a hostage to fortune and punctured dreams.
But, hey, I’m going to say them anyway. With the slow recovery in my general health has come a small but noticeable growth of strength in my hands. They’re still terribly distorted. But my fingers, especially on my right hand, are much straighter, instead of permanently clawed into my palm. This has led to an increase in pushing power, dexterity, you name it.
After a spectacularly good lesson on dear Nelly at Riding for the Disabled this week, I’m noticing movement in my torso that I’ve not felt before. (Mostly, it’s painful; but if that’s disused muscle starting to tweak again, then bring on the pain.) Best of all, my left hip seems to have freed up fractionally, allowing the leg to respond a bit more. Riding, I tell you again, is brilliant physiotherapy.
I am not yet back walking again, but I have a replacement frame waiting for that moment to come. (We left the last frame at Euston station taxi rank during the Paralympics, but it never reached lost property. One of life’s eternal mysteries: who’s shuffling around London on a giant folding Zimmer?) I’m convinced I’ll soon be teetering upright, glaring at my legs and muttering, “JFDI.”
A victorious footnote. You may remember, six weeks ago, I wrote about the five codgers, all the wrong side of 70, who were dedicating an epic trek over the Alps to Spinal Research. Not only did they survive the precipices of the Dolomites – “You could say we were out of our comfort zone” – and stagger into Harry’s Bar in Venice – “Here, less so” – but they have now raised an astounding £100,000. To all who contributed, heartfelt thanks from me, Cherry Barclay and the chaps in dodgy shorts.
03-29-2013, 07:44 PM
Epic road trips can be deliciously low art. Like the scene from The Blues Brothers, when Dan Aykroyd turns to John Belushi and says, “It’s 106 miles to Chicago, we got a full tank of gas, half a pack of cigarettes, it’s dark and we’re wearing sunglasses.” And Belushi says, “Hit it.”
Or they can be romanticised poetry, Kerouac-esque; leaning forward, as he put it, to the next crazy venture beneath the skies. “What’s your road, man? Holyboy road, madman road, rainbow road, guppy road, any road. It’s an anywhere road for anybody anyhow.”
Mine was only a round trip of 150 miles, but it was my strike for freedom; my landmark; my state boundary crossed. The task was one that, in my previous life, would have been something akin to breathing: jump in the car, drive across the country, take the starving student son out for supper. A normal act of maternal indulgence. But to do it now, post-personal apocalypse, on a November night, with a frozen body, was to venture way outside my comfort zone.
They talk about the hard yards in sport: the par fives into the force five, the deep and muddy toil through midfield or along the back straight. Mine have been spent in my new car over the past year, ploughing between my house and the riding stables, week in, week out; plucking up the courage to overtake tractors; kangerooing around busy roundabouts as my fingers claw in tension and the accelerator ring – offset behind the steering wheel – becomes an instrument of public humiliation.
Controlling a car with compromised hands, after you’ve driven hundreds of thousands of miles with your feet, is a bit like handing a 90-year-old a PlayStation console and expecting them to win maximum points on World of Warcraft first go. It’s hard. Steering with one hand and accelerating with the other makes rubbing your tummy and patting your head at the same time a doddle. Jerk, bounce. Jerk, bounce. Look at that bloody woman in the Polo. Hurry up, for Chrissake. She’s not even old. Oh, she’s got a disabled sticker. Still, they shouldn’t let people like that out on their own at rush hour. Honestly.
Happily, I would like to believe that the only thing that has been endangered is my pride. I hope I haven’t done anything unsafe; or put anyone at risk. No front-seat passenger has had to resort to the dual-control footbrake. Only one flinty-hearted person has tailgated me, hand jammed on the horn, and it is fortunate indeed, were I the kind to retaliate, that I can no longer separate my fingers to make any kind of gesture.
And progress has been made. Journeys are smoother; the hands are just starting to steer and brake automatically. Hence my decision to plot an ambitious road trip. If I blame anyone, it’s myself for reading Hunter S. Thompson at an impressionable age. “Every now and then when your life gets complicated and the weasels start closing in, the only cure is to load up on heinous chemicals and then drive like a bastard from Hollywood to Las Vegas... with the music at top volume and at least a pint of ether.”
Well, OK, no ether, and we forgot the music. And last time I looked, Edinburgh isn’t exactly Las Vegas. Carrie, the emphysemic pit pony, agreed to come with me. Warily. “It’s 70-odd miles each way, we got a full tank of gas, you won’t let me smoke in your car, it’s dark, it’s raining cats, dogs and toads, and you can’t feel the steering wheel. Hit it.”
Not only was this by far the farthest I have driven – and at night, too – but somewhere on the M9, bowling along in the little hairdryer of a car, the milometer passed 3,000: a symbolic little marker of distance travelled in a new life.
And we got there. Dougie emerged from the squalor of a five-man student flat – maybe I should be glad I can’t get upstairs any more – and took us to an Argentine steak house, where half a heifer was placed in front of each of us and he entertained us with tales of a frantic final year, of dissertations and underground computer bunkers full of trolls who work all night. And the wonderful thing was that, albeit briefly, listening and laughing, it felt like the kind of normal thing any mother would do. How lucky I am, I thought fleetingly, that I am still here to do this for him. When I so easily might not have been.
As mothers are also expected to do, I paid the bill, and we left him on the pavement holding a doggy bag containing, oh, at least two thirds of a heifer. Then a melancholy flicker of Kerouac again. “What is that feeling when you’re driving away from people and they recede on the plain till you see their specks dispersing? It’s the too-huge world vaulting us, and it’s good-by.”
Driving slowly home, with the rain bouncing on the motorway, fumbling in the dark to dip headlights, I felt exhausted but victorious. We’d done it. I’d done it. No scares. No embarrassments. Home before midnight. No pumpkins. Carrie said she felt safe beside me; and I gained the precious confidence to know I could make the same trip alone in future.
A friend with MS has had a wobbly start with hand controls, confusing her accelerator and brake, and pranging her car into the front of her house. I tell her that there but for the grace of God go all of us. She will win through; she mustn’t give up. We decide to initiate a local middle-aged crocks society. I have already decided on our founding motto. It’s Hunter S. again. “I hate to advocate drugs, alcohol, violence, or insanity to anyone, but they’ve always worked for me.” But not with hand controls, of course.
03-29-2013, 07:51 PM
The phoenix has risen again. Well, risen-ish. Her crest is flattened, her fire puny, her feathers singed. But her head is up and the broken wings are flickering. This week I started walking again, standing up from the wheelchair and steering my unfeeling body slowly and jerkily along the parallel bars.
It’s a triumphant feeling, looking down and seeing my legs bearing my own weight again. I have of course been here before, but it was many months ago, before secondary health issues crept up on me and sucked all the strength out of me. There have been many times when I doubted whether I would ever get back to this point.
But here, once again, I’m upright. Here once again is the thrilling sensation of asking the legs to move forward and seeing them obey. It is a laboriously slow, shaky routine. First, I peer down at my right knee, check it is locked. The joints give me no feedback; I can’t tell without looking what they’re doing. Then I glare at my left leg, willing the knee to bend, to pick up that grubby old trainer with the tragically unworn sole and swing it forward – place it there, please, there, out to the left – and see it obey. Then pause. Now lock left knee. Shuffle hands forward on bars. Check stability. Clench buttocks. Then grit my teeth and ask the right leg, the bad, recalcitrant one, to pick up and do the same.
It tries. God love it, the right leg is a trier, although the overdeveloped adductor muscle on my inside thigh makes it scissor across to the left. My physiotherapists, either Emma or Kenny, shuffling on their knees in the dust, help with the placement. As we inch forward, they keep my wheelchair right behind me at all times, just in case I collapse.
And so I achieve ten steps or so along the bars, sit down, reverse my chair and repeat the process. It ain’t pretty, this unlovely puppetry of the flesh. The knees jerk up, like a high-stepping carriage horse. The feet tend to plump onto the floor, and I can feel the soles tingle gloriously when they do. And because everything I do is marginal, teetering on the edge of the not possible, the effort drains me fairly quickly. I may manage four or five of these tiny walks in half an hour. Doing it, I glance at myself in the mirror, stupidly tall, pot-bellied, gaunt-faced, wasted legs in flapping trackies. You dancin’? You askin’? Damn few would, that’s for sure.
It’s a start, I tell myself. A stage on the way back. Soon I should be back on the Zimmer, doing longer walks, the way I was in May before my malfunctioning innards commandeered my life. And maybe then, just maybe, with a fair wind and a clean bill of health, I might start to break new ground. So will I? Will this defiant slow-motion dance ever get easier? Naively, after I had my accident, I thought recovery would be a linear progression, that once I started walking one week, I would walk just that tiny bit better, more easily and further the next week. And again the week after. That there would be a slow but steady upward curve, just as there is when you are rehabilitating from other kinds of terrible injury.
Sadly, spinal damage doesn’t seem to do linear. Neurological repair, the rebuilding of connections, appears to be cruelly random and stubbornly slow. Plasticity, say scientists, is the lifelong ability of the brain and the spinal cord to reorganise neural pathways based on new experiences. I believe in it, specifically in brain injuries, and spinal breaks where the cord was not severed, just badly stretched and compressed. But plasticity isn’t something that can be ordered up on tap. It haunts and teases, a phantom of hope.
But it is the fire that keeps burning in this poor old phoenix: the belief, so beautifully expressed by the fellow spinal cord patient I call my Zen master, that inside my body there is an army of tiny engineers toiling away, night and day, trying to fix the damaged circuits in the computer. It’s hugely complex and time- consuming – trying to link broken wires, re-routing vital connections down obscure highways and byways to avoid scar tissue.
They’re hard-working, these experts, but sometimes they get puffed out and put their feet up for a bit; and sometimes they get fed up with one bit of repair and turn their attention to some completely different area of my body. All I must do is reconcile myself to the fact that while their results may be imperfect, they will never stop trying.
Other spinal injured people tell me they find their bodies go very quiet for long periods, with nothing happening. And then suddenly, randomly, they will notice an improvement in some part of their body. One doctor advises me that she was always taught that neurological improvement could restart as long as a year after the last sign of progress.
My walking may never be functional. But then again it might. And even if it isn’t, it’s great physiotherapy. A reader reminds me of Bobby Charlton’s words: “If you don’t shoot, you won’t score. If you do shoot, you may score. If you never shoot, you will never score.”
Incidentally, is there going to be a post-Olympics baby boom? I only ask because almost every woman I know under 40 is expecting a baby in April, including three of the physiotherapists I’ve worked with since I was injured, and one of my occupational therapists. July, you see, when Britain was a wonderful place to be and everyone was happy and full of niceness and love.
03-29-2013, 07:53 PM
The trouble with shaggy dog stories is that, while they’re mildly entertaining, they end in a meaningless anticlimax. The trouble with this shaggy dog story is that it’s about a dachshund, and dachshunds aren’t shaggy.
So dare we believe? Dare we nurse the tiniest sliver of optimism? Research from the University of Cambridge suggests that some paraplegic dogs have been able to walk again after treatment using cells from their noses. Olfactory cells, injected into a damaged dachshund’s spine, have apparently spurred the growth of a “bridge” between damaged and undamaged parts of the spinal cord.
You will forgive us if those of us in the spinal injured community do not immediately jump out of our wheelchairs with unalloyed joy. For one thing, Julian Fellowes isn’t writing the script of our lives so it’s physically impossible; and for another, we seek to protect ourselves from any more disappointments.
In the two-and-a-half years since I broke my spine, I have heard of at least three other “breakthroughs” in spinal research. I am learning, as so many others have learnt so painfully before me, not to invest too much hope in a magic bullet before I’m a pensioner.
Like a cure for cancer, any cure for broken spines is going to take decades. This doggy research is just one part of a large number of strands of science. Of course, we must keep raising awareness, and giving money to Spinal Research; and we should believe that a happy result is achievable in our lifetimes.
Long ago, I decided that I preferred false hope to the doctrine of no hope, as practised in some branches of spinal rehabilitation. However, to survive, we reserve the right to remain a little cynical.
Imagine the spine as the world’s most complicated circuit board. Putting it right will never be like pulling a switch. No cure will ever have us running marathons , or leaping easily to our feet. We will never be “normal” again — just shades of pain and degrees of shuffling and limping.
And before we can walk, many of us would rather have a return of other, even more important functions. Spinal injured people are usually doubly incontinent; compared with those horrors, walking is the least of our worries. The dogs in this trial, says the professor in charge, do not have a normal gait and still have difficulty defaecating and urinating.
So it might be a shaggy dog. Or it might not be. I’ve enjoyed hearing about it but I’m not holding my breath.
03-29-2013, 08:00 PM
One of the surprises to land in my lap since my accident was an envelope containing pictures of me, aged about 23½, made up ready for a fancy-dress party. The sight of them was like a floodlight illuminating a long-forgotten life. Good God, was that really us?
The photos were sent, out of the blue, by a flatmate I confess I remember only vaguely. I am a clown; my face painted white, with a giant dolorous drooping mouth, a red nose and anxious blackened eyes. It’s all very Eighties: the oversize man’s jacket, sleeves rolled up, with a striped T-shirt and bow tie, striking a pose against a doorframe, cigarette languidly in hand. My flatmate is a pierrot alongside me, similarly doleful.
I have no memory of the party itself; whose or where or who got off with whom; or indeed of the struggle, in the early hours, bleary with booze, to get the face paint off. Parties when you’re young aren’t really for remembering, are they? Looking back, I always enjoyed the anticipation more than the reality when it came: that blur of shyness, cheap beer, chilli con carne, lowered inhibition and then dancing, dancing, dancing like a mad thing. That was the best bit, the dancing. The escape. The energy. Living in the moment.
Before that, there were the sixth-form parties, miserable, self-conscious affairs, because I was 6ft tall and all the boys were shorter. It called for dedicated research to find out in advance who was invited, and then making a poignant wish list, with ticks next to those who might be 5ft 10in or taller. Just for an end-of-evening snog. Please, God? So I can feel just a tiny bit desirable? I could drop one hip and bend my knees and, with immense skill, lose two inches. But there were often only about three candidates who qualified; and all were either uninterested or just plain spotty. I danced instead. Layla. Full volume. Douce living rooms spinning with the sense of fin de siècle; of lives about to diverge for ever.
Happily, the memories stay vague and fuzzy. Few images from those times were ever captured. Social media had yet to be invented. We were never trusted with our parents’ camera; except maybe on a school trip to Stratford; and then at university when someone would show off their single-lens reflex, on which they had blown half their grant, by taking moody black and white shots of people blowing smoke rings.
Photography was an elite pursuit. Party-party photographs, of the kind that colonise Facebook today – the back-seat-of-the-taxi group hugs, big smiles, cleavages flashing, yawning drunks – were non-existent. The weird thing now, with camera phones and compact cameras, is that everything is captured. Everything. To the point where if it isn’t, it might as well not have happened. To the point where, surely, young people live through the lens rather than through their own eyes. Isn’t it a form of tyranny? If you’re always busy recording life, don’t you fail to experience it properly?
Or, on the contrary, will they have far richer memories to fall back on than I now do? Now everyone is tagged on Facebook, will today’s youth, when they get old, be able to name everyone they were at school with, and laugh at the fashions together; stay in touch; feed off friendships maintained?
There exists one photograph of me partying, autumn 1980, still in vain pursuit of the Olivia Newton-John look, the one where she morphed into a bad girl at the end of Grease. I’m up on a table in some working men’s pub in Whitley Bay (you don’t want to know), boogieing with a friend. John, I’m only dancing. Dancing was the real drug. A way of escaping the bores and the dullards and the effect of alcohol; a way to keep moving and find freedom.
And there, in a nutshell, is the reason I don’t like parties any more. Bah humbug here, coming into the December party season, turning down invitations, making excuses about why she wants to stay at home. Parties are for wearing the clothes you feel sexy in: showing off long legs, look-at-me earrings and fun shoes. They’re for the divine jolt of a gin and tonic on an empty stomach; for dancing to Status Quo like a sad old git and butterflying around interesting people. They’re for getting high on fun and possibility.
Parties are for feeling desirable; for catching your husband’s eye across the room and knowing he approves; that he still fancies you.
That’s why, so far, I don’t want to go to them in a wheelchair. Because I feel envious and sexless and, most of all, because I can’t dance or drink or float. Where once I was too tall to find a boy to kiss, now I am too short to break the surface of the sea. In a wheelchair in a crowded room you drown, a prisoner of the many kind people who, unsure quite what to say, tarry long after conversations have run their natural course; and you can’t escape the way you used to, peeling off with a big smile for another drink or a trip to the loo. The ebb and flow, the flirtation and mischief of normal party intercourse is gone for ever.
A friend of mine who broke her back daydreamed about this when the robotic exoskeleton legs first gained serious publicity earlier this year. Wouldn’t it be so fantastic to have a set, she said, even if you only used them for parties, so that just for once you could talk to people eye-to-eye, and flit from group to group. Even if it meant, with crutches, that you had to carry your gin and tonic in a CamelBak and suck it through a tube.
Why, that would almost merit a picture on Facebook.
03-29-2013, 08:04 PM
It would be interesting to total up the number of people who, right now, have neurological damage of some kind. Anyone who’s had a stroke, a head injury, a brain condition, a spinal cord trauma, or suffers from one of the many hateful degenerative illnesses such as multiple sclerosis or Parkinson’s. Or even just sliced the nerves in their finger chopping food, and wishes so hard the feeling would return.
There must be hundreds of thousands of us – millions if you classify chronic back pain or dementia as a neurological problem. And we’re all sitting, as if at some godforsaken terminus at the end of the universe, waiting and hoping for the bus that never seems to arrive. Will the nerve connections in our bodies start healing? When? And why does it take so long?
The more scientists know about neurology, the more, it seems, they don’t know. There are glimpses of light – such as recent research into dogs whose spines were healed by a transplant of olfactory cells – but the harsh reality is that a cure for damage to the brain and the nervous system remains the holy grail of science.
At the sharp end, after a while, you come to understand this. Beyond a certain point, doctors can’t really help. You are on your own. There are no manuals on how to live with knackered bodies, numb fingers or clouded minds. There are no answers because the complexity and diversity defy modern medicine. As yet.
So yes, having neurological damage is a lonely place to be. Some of us, sadly, because of the nature of our injuries, cannot improve much. Others, against all odds, experience some healing, some nerve regeneration. Hence my new readers’ club, Incompletes Anonymous, an antidote to perceived wisdom. A place for people to raise (oft-crooked) fingers to their prognosis.
Let one of my mentors kick it off. “Hello, my name is P and I’m an incomplete C4/5 tetraplegic, coming up to my eighth anniversary. I am totally addicted to rehabilitating myself. As a result of continually abusing my body I have developed biceps and triceps, I can stand independently and walk various distances with gutter frame, Zimmer frame, parallel bars and a gym treadmill (.45 of a mile last time out). My consultant said I would plateau in two to five years; where have I gone wrong?”
Or there’s B. “I had a major stroke nine and a half years ago. I’m still getting changes now. I do plateau for ages, which is when I feel like I’m wasting my time. Somehow, though, I don’t know how to stop trying. I was originally told my window for improvement was six months. It’s best to ignore experts when they say something you don’t like. I find it hard to remember how bad I used to be – I couldn’t even lift my leg onto my bed on my own. Now I’m starting to walk in safe places without my stick. My balance is still crap and God I cry sometimes. But it helps to be bloody-minded.”
And how about A, paralysed all over after damaging her neck. Through persistent physiotherapy, she’s now walking with a stick and controlling her bladder and bowels. “Nearly five years on from the accident and my big news is that I have recovered my proprioception [feedback from joints]. I know where my feet are. And I’ve suddenly relocated my seat bones – I can now move from one to the other very definitely. I did a big workout in the pool this morning and became aware of a new sensation in my knees – a sort of warm slackening rather than the usual bands of steel.”
And there is the wonderful Kate, fighting back 15 years after being hit by a mysterious brain affliction as a teenager. At first she could not speak or move. Now she talks and types and, with full-time care, lives independently. “We need to know our own bodies. My illness is rare and my recovery even rarer, so doctors haven’t got a clue. Remember, we are all different. From my long experience, doctors, nurses and physiotherapists often predict wrongly – they all said I would make no recovery. I kept going. I wanted to prove them wrong.”
Pip, an expert horsewoman, fell off three years ago and suffered a grave head injury, robbing her of thought and function. Now she’s back out taking part in dressage competitions again, having defied all expectations. Then there’s another professional rider, who 20 years ago hit her head on the kerb in a fall and was in a coma for weeks. Her friend tells me: “She still improves. Recently she started walking on a treadmill – she has gone from barely coping with the slowest settings to storming along at the highest gradient. She often has bad days – her co-ordination is poor, her speech slurs, her memory is slow. But she has never adopted the limitations that anyone else sets.”
Colin, one of my partners in crime from the Scottish spinal unit who had told me he would never walk again, sends me this dispatch: “What a rollercoaster of a week. Sun, best backward walking ever. Mon, got my walking frame and went for it, great. Tues, lost my legs, can’t stand. Wed, legs still gone but enjoying the peace. Thurs, physio gets the best response from legs she’s had. Fri, leg spasms return. Sat, a*** sore and knees jammed together; tonight, well, just going to go for it.”
And then there’s me. Two and a half years on from a similar prognosis, I am doing some of my best ever walking on a frame. Five times along the living room, eyes lifted from feet, and the left leg, for the first time, actually stirring memories of what proper walking used to feel like.
Sometimes, you know, it’s best to be so ridiculously stubborn that you don’t know when you’re beat.
03-29-2013, 08:08 PM
So there I was, seeking refuge in the corner of the local rugby club bar, while outside a horde of small boys practised lineout and scrum drills in the wet and the dark. My newspaper, by chance, lay open displaying a league table of mortality rates from hospitals around the country: a stark measure of failure and, by implication, degrees of competency.
Just then a tough, stocky Irishman came in, someone I recognised only as one of the juniors’ coaches, a man who had few words for the parents and rarely tarried, obviously uninterested in small talk. Most unusually, he stopped beside me. I’ll never forget what he said.
“Those tables are totally misleading,” he said brusquely, gesturing at the newspaper. Only I don’t think he used the word misleading. “You know that, don’t you? I operate on children: our team performs risky, pioneering procedures on desperately sick babies, some of whom may not survive, whatever we do. But we do it because we have to try.
“How do you compare the success rates of what we do with surgeons who, say, perform several routine hip replacements a day, five days a week? You can’t, can you? It’s stacked against us. It’s punishing us for trying.”
And then he bustled off, leaving me with my jaw flapping, thrilled to discover he was a secret hero, but cringing at the superficiality of my own profession. I don’t even think he knew I was a journalist; he just had something important to get off his chest. He taught me a significant lesson. I’ve treated league tables of all kinds with great suspicion ever since; and regard children’s doctors – and volunteer rugby coaches too, come to think of it – with altogether different eyes.
Can the gap between skill sets get any greater than that between them and the rest of us? Only children’s surgeons know how huge a burden they bear when they approach an anaesthetised little body. They inhabit a precious yet terrifying land where we will never go. We will never hold a baby the size of a bird in our hands and open up its heart; nor will we, like a sculptor, use live flesh to rebuild the features of an injured child. This is a responsibility, an act of sublime optimism, beyond our ken.
So none of us can begin to go there, but I suggest we all try and walk a few metres – it doesn’t have to be a mile; getting to the operating table is far enough – in their shoes.
This edition of the magazine is dedicated to the men and women who not only possess the necessary extraordinary skills, but are brave enough to use them. It does not aspire to be a league table of medical stars – definitely not! – nor can it be comprehensive. From a small specialism across the country – people who, like my son’s former rugby coach, all deserve to be high profile but do not choose to be – we highlight the magnificent work of a handful.
You may remember the story of the little Iraqi boy called Ali Hussein, who as a seven-year-old in 2003 lost half his face in an American airstrike. “In a way,” said Ali’s father, “he was already dead. He wasn’t able to have a life.” If the child’s injuries became a global symbol of the awfulness of that war, then maybe his rebuilding is a metaphor of redemption for us all.
For this we must thank the silky hands and kindly soul of Dr Niall Kirkpatrick, a craniofacial plastic surgeon in London, who through the auspices of the charity Facing the World has spent the past eight years rebuilding Ali’s face. His nose and palate were reconstructed; a prosthetic eye fitted. Operation still follows operation, with steady, remarkable results. A life, a human being, is gradually being rebuilt.
Dr Kirkpatrick would probably hate me saying it, but he understands a kind of magic. “It’s an area where you’re working with people’s personalities. And faces and personalities go together. That’s what’s always drawn me to it,” he says.
We tell the moving story too of William Brawn, a paediatric heart surgeon in Birmingham whose pioneering work, using minuscule surgery, replumbs the hearts of tiny babies. Hearts, mark you well, which range in size from a thumbnail to a tangerine. The parents of one such patient recount how their son went into cardiac arrest in the ward, immediately post-op, and the talented Mr Brawn, still in his scrubs, went straight back into the heart and stabilised it as they watched. Six months on, the baby thrives.
Brawn is the master of understatement. It is “immensely rewarding” to turn a baby who was blue to pink. “We lose very few children on the operating table… although we do lose children in intensive care afterwards. You come to understand that you have tried your very best to save them. These are children who would not survive without the operation.”
We talk here of both physical and psychological survival. Add these names then to the canon of great work. There was not space to credit everyone. One notable omission is Neil Bulstrode, a plastic surgeon from Great Ormond Street, who transformed the life of Didier Montalvo, the “turtle boy” from rural Colombia, who had a mole which grew so large it almost covered his back.
And remember that behind every one of these moving stories the work goes on. Every day, children’s doctors, quietly and modestly, rescue lives and make them liveable. Is it perhaps the most worthwhile job in the world? If I believed in league tables, I would say so.
03-29-2013, 08:11 PM
Sometimes it is good to look back. Last Christmas, among other things, I wished for a car, a secretary, a pair of buttocks like Rihanna, a new left thumb and a bird table. It was my usual mixture of whimsy and wariness. When you have a spinal injury, you learn to protect yourself by not hoping for too much, and certainly not for the obvious, because inevitably you will be disappointed.
But look how many of my wishes have come true. I’ve got the car and have driven it more than 3,000 miles in a year. It has done much to make me feel a little like my old self again. And I have the wonderful, wry Sarah, who hikes to my house once or twice a week, more than meets my ferociously snobbish spelling standards, cuts me no slack, sniffs at my demands for tea breaks, and even makes me do homework. Her fearsome cry, “Stop moving it from one pile to another and deal with it,” echoes in my dreams.
Every day the birds are emptying their table and the seed holders, to our great delight and pleasure. The vermin, too, are fat and gleaming from the new food source. I hear them at night behind the walls discussing it.
On the body front, there is frustration but also serendipity. Rihanna I’ve not realised, but just a couple of weeks ago, thrillingly, I felt a big new muscle start to kick in on my bum. Another of my glute muscles, critical for standing and walking, seems to be waking up. Sometimes when you sit for so long in a chair, watching and hoping for improvements, you start to go a little mad, but I don’t think I’m making this up: I can definitely feel a new sensation of a girdle tightening around my pelvis. Can see it, too – the tiny precious flickers; the hip and stomach area contracting.
Much of this I credit to the physiotherapy of riding again, which forces my pelvis to tilt and stretch and twist. Exercising in the saddle on dear, generous Nelly twice a week at Riding for the Disabled loosens me up: often painfully, but always positively.
The left thumb, meanwhile, has evolved a little. I have no power to bend it, and it has almost no feeling, but it has gone from floppy to straight, and is now rigid enough to press light switches or grip and lift very light things, such as a small roll of Sellotape. My hands, I find, are the most volatile bit of my body: some days they feel softer and less frozen; the next day, they regress to bitter claws. Much depends on how cold they are; and during the recent freezing weather they are permanently icy, no matter how many layers of clothing I wear, or how close I sit to the fire.
To think how I used to scorn people who were always complaining of the cold. “Just go and do something useful and warm yourself up,” my inner hawk would cry. “Put on another fleece. Go for a walk. Move!” And now I sit and shiver in sympathy.
So to this Christmas, and apart from asking the boys to get me a pair of heated mitts, to help the fingers, I am disinclined to ask for much again. Too much like tempting fate. We will wait and see what life brings instead, I think. But what about a random list of gifts to make the world a generally happier place?
1. For every citizen: awards for not moaning. Like the sonorous passage from Luke ii, 1 that as children we declaimed for the Christmas church service: “And it came to pass in those days, that there went out a decree from Caesar Augustus, that all the world should be taxed.” Taxed for moaning in 2013, that is. Or maybe prescribed a new daily anti-moan pill, like a statin, to create a more positive attitude. Too gentle a remedy? How about the creation of street wardens armed with Tasers? To help us realise that a recession isn’t the worst thing that can happen. To allow us to embrace a bit of frugality. Instead of mountains of stuff – stifling, glossy, unnecessary stuff – value the things that really matter: love, health, family, fresh air. Don’t sweat the small stuff, as the Americans say.
2. For every primary and secondary head teacher: a CIA-approved mobile phone jammer. This would prevent children using their mobile from 8.50am until the bell rang at the end of the afternoon. If there was an emergency, the child could go to the school office to phone. Come to think of it, phone jammers could be extended into many other areas of public life. Prison. Restaurants. Theatres. Did somebody mention human rights? Then see (3) below.
3. For every citizen: the primary human right to enjoy silence, art, food and above all education without distraction.
4. For every dog and cat lover: the requirement to rehome a stray dog or cat before they can buy a pedigree puppy or kitten. Because it’s good karma; and because strays are healthier, cheaper, more intelligent and more grateful. And much classier.
5. For all consumers: the savvy to eat less and balance intake with energy consumption. Obesity is a quiet tragedy that is destroying society; and the poor the quickest.
6. For the Duke and Duchess of Cambridge: a baby girl. Nothing else will do; this is the golden opportunity to make dazzling feminist history. Queens, indeed all good women in charge, make the world a wiser and more interesting place.
7. For the disabled of all kinds, even those who don’t limp and whom I’m always deeply offending: a doubling or trebling in the number of disabled parking spaces. There simply aren’t enough. Anywhere.
8. And for all of you, a peaceful, happy Christmas.
03-29-2013, 08:15 PM
The best memories of a year are the random ones; rich little moments that would never qualify for a place in any précis of a life, but are in fact the substance of that life. And here I am, weirdly wheelchair-bound, and therefore an impersonation of myself, sitting in the cool of the marble halls of the Versailles Hôtel de Ville. It’s May; outside, car upholstery is melting in the heat.
Only my brother is with me; we came up in the lift together. The rest of the family is congregating outside for my nephew’s wedding. And Andrew and I are scanning the names of the mayors since 1789, when this place became the cradle of the modern world. We half-close our eyes, entering a time shift. Few mayors lasted 12 months. Then, in 1813, came one Granville de Sortaine. There it is, engraved in marble. Deux mois. Poor Granville: what intrigue did for him? Did his head roll? Did he know they were coming for him? Was it gout? Syphilis? Did he enjoy life while it lasted? And who would have thought I would ever be fit enough to be in France, pondering these things?
Wheelchair philosophy is a bit like pub philosophy – as dark and flippant. Opinions are cheap when life is difficult and brief. I fret little about normal worries any more; I detach myself, observe, shrug. Like the poor man staring into a pint, I’m helpless, me; I can’t set the world to rights, so let’s just laugh at how ridiculous it all is.
Travelling was truly ridiculous and I did a lot of it this year, a circus animal on the move. There were six trips that entailed at least one night away from home, culminating in the Paralympics. And three precious nuggets of discovery: British Airways treats you a million times better than budget airlines; trains are far less stressful than planes; first class on Virgin West Coast rail is the bee’s knees.
And Virgin, bless them, gave me another great memory. Half an hour before London, I headed for the loo. The light said vacant; I negotiated the corridor and pressed the button. The door opened to reveal a Muslim woman in a hijab sitting on the throne, and she was screaming at me at the top of her voice, “No! No! No! No!” like it was the shower scene in Psycho.
In shock, I cried, “Sorry, sorry, sorry,” and jabbed frantically at the button, which of course kept the door open. I tried to wheel backwards; my chair wedged on the walls. We were both stuck, sitting looking at each other, except she was screaming even louder now, waving her arms wildly at me. My wicked inner voice said, “Please stop screaming. It could be worse, I could be a man,” but I silenced it. Instead, I pointed at the buttons on the loo wall. “You have to press those,” I said, and slowly – achingly slowly – managed to wrench my wheels free and reverse back to my place.
In Euston, when the special assistance man came to collect my luggage, the woman and her two female companions hopped into his buggy – they’d also booked his services – to be driven to their pick-up point. She was still eyeing me distrustfully. Why were they getting special assistance? These women didn’t seem to be physically disabled, just apparently disempowered by virtue of being female in a different culture. Have feet, don’t bloody use them. My inner feminist growled as I struggled along in the wake of their buggy.
Come to think of it, I wish I’d raised that question on The Last Leg with Adam Hills, the game-changing comedy chat show that Channel 4 broadcast after its Paralympics coverage every night. Who’s got the right to feel the most offended? Who trumps who – the godless tetraplegic or the able-bodied Muslim? The dwarf or the double amputee? Because that was another of the year’s great memories – lying in bed in a Central London hotel watching Hills, himself born without a foot, deconstruct the sensitivities surrounding disability. Telling people it’s OK to laugh; that disabled people still have a sense of humour. That the able-bodied really mustn’t claim the moral high ground on our behalf.
Wheelchair philosophy tells you to live for the day and not to fret about tomorrow. This was a year for learning not to cry as much, and yet also to start accepting where I am and how dependent I am, no matter how hard I try. Debilitating secondary health issues – bladder, bowels, toes – continued to brake my rehabilitation and I still bridle at the cruelty of it. We bear so much, being paralysed, and yet this as well?
This was a year when I achieved a lot, but much less than I wanted. I watched my beloved husband age with the burden of looking after me. I remember, so poignantly, his admission that he feels sad sometimes when he sees a couple walk down the road together. But you just get on with it, he said. And so we do.
There are other precious, random memories. Of my son laughing again; hugs; the sight of Nelly the horse’s ears flickering as she attempted to work out what I, in my clumsy way, was trying to ask her to do. Then she twigged: ah, you want me to go sideways. And, dear generous soul, she started offering to go sideways every time.
One last epiphany. Last Monday I did my longest walk on my Zimmer, albeit with Kenny the physio helping my right leg.
I started by one wall of the long room and shuffled round to a dead end in the far corner. I desperately didn’t want to stop; the left leg was capable of going farther. I stood there, surveying the scene from on high. How glorious, how unfamiliar, the perspective on life is when you are upright. And how hungry I am for more.
03-29-2013, 08:19 PM
Ruby Wax once wrote, memorably, in an attempt to understand her own childhood, that her parents had been “sprinkled with weird dust”. I laughed aloud when I read it, for it was the best ever explanation for mine too. They didn’t do things like normal people did, and never was this more apparent than in my father’s choice of family holidays.
In the early Sixties, ordinary, sensible families went to stay at their nan’s for a bit, or had a few days at the seaside in a guesthouse. Or just stayed at home and played. How I envied them. The Reid family loaded up the boot of the car with a tent, cardboard boxes of canned stewing steak and curry powder, and went camping on The Continent.
Where was The Continent? I had no idea, other than it had capital letters and was a destination to name-drop in the playground and leave my friends as mystified as I was. The Continent meant hour after hour of fighting travel sickness on the stifling back seat of the car, watching a blur of roads and mountain ravines, as my father satisfied his restless urges and, in two weeks, drove thousands of miles across France, Italy, Austria, Germany, Switzerland and Yugoslavia, the Med, the Aegean, usually only ever staying one night in the same place. We travelled light and fast. Like the 1st Panzer Division, only 18 years late. And going in the opposite direction.
We were a one-vehicle British expeditionary force. Early in the decade it was a blue Riley; by 1967, a Mk II Jaguar in British racing green. We flaunted a Second World War Army camouflage ridge tent, slept in duck-feather Army-surplus sleeping bags, drank water out of ex-Army containers, washed in canvas buckets and carried Army jerry cans of petrol for emergencies. Not forgetting numerous rolls of Izal toilet paper, a hard, shiny product which in itself symbolised the British ability to triumph over disaster. My father insisted on Izal until the mid-Seventies. Anyone who used it successfully for anything other than tracing paper deserved to win the war.
The only place where my father lingered, indeed, was in the German Alps, where he delighted in upsetting the natives as we unfurled the tent. It was Where Eagles Dare meets Hannibal Brooks. Only starring the Reids. I was mercifully too young to be embarrassed.
If I was lucky, and we arrived at a campsite early enough, I got to do some paddling in a nearby stream – my main preoccupation in those days – while my father and brother put up the tent and my mother and sister heated up a can of steak, added curry powder and boiled the rice. Around us must have been shops and restaurants offering the various culinary fascinations of what was not yet known as Europe, but in weeks of constant travel we never entered them. We simply had another campfire curry, to remind him of wartime India, followed by tinned fruit with evaporated milk.
Hence, aged 5, I remember clearly my first Coca-Cola, at Lake Maggiore, in a sagging knitted swimsuit, clutching that exotic, dimpled glass bottle. It was the most exciting thing I had ever tasted. Tell me, dear reader: is weird dust passed down through the generations? I’m starting to get worried.
So perhaps I can blame my parents if I have never been good at conventional holidays. Joining the crowds or seeking sunshine for the sake of it has never appealed. Given the chance, I have always gone high or north or austere: the Alps, the Rockies, Scandinavia, Sutherland; skiing, walking, hiking, riding. But now, suddenly, given my accident, it’s all over. All I can do is look back with nostalgia, because this kind of escapism has been taken from me. There are still unvisited places, magical names on the maps that have called to me all my life – Spitsbergen, Alaska, Peru, the Australian Outback – but they must remain unfulfilled romances. That door has closed.
Skim the travel supplements today and, if you’re able-bodied, the world has never been more accessible. But when you lose mobility so too you lose the ability to daydream, and these places pass out of bounds. Or if they don’t, it is only with massive input from others that you reach them; and here is the dilemma. This, for me, rules them out. It destroys their meaning; the purpose of going. How to express this best? Perhaps to say, at this point in my recovery, that I would rather never go up a mountain again than be carried up that mountain. Why don’t you go to Alaska on a specially adapted cruise ship, asks a friend. Because I’d rather poke my eyes out, that’s why.
That said, it would be nice to be offered the choice. There is a distinct lack of information available for disabled people on anything outside mass-market tourism. “So very sorry to whinge once more,” writes one reader, “but when I finally get a letter into print asking for disabled accommodation, the best they can come up with is Mar Y Sol in Tenerife and a whole hotel in Málaga, the sort of disabled ghetto syndrome that is depressing. In post-Paralympic Britain, it would be so nice to see a travel feature on places we might aspire to visit.” And she’s right.
The bigger message, really, is for everyone who is fit. Weird dust or no, my father was sort of right too (though not about Izal). If you can, go for it. Don’t put off travelling. Think of all the places on the map you’d love to visit, the activities you’ve always dreamt about trying, and get to it. One after another. As soon as you can. Because if your life was curtailed tomorrow, you may never see them or do them. And, take it from me, regrets are not good things to have.
03-29-2013, 08:23 PM
Some awesome people, damn them, are always on top of what’s hot and what’s not. Keep up or die. Their lives thrum with competitiveness. It’s not February yet but their coffee tables are already sagging with potential 2013 Man Booker candidates; they’ve seen every Bafta nomination; they already know where this series of Borgen is going.
Ah, Borgen! At least I’ve heard of it. I’m almost embarrassed to admit this, but here on Planet Slow, Dave and I have only just discovered series one of The Killing. (We have an excuse: my accident took almost three years out of our lives.) Anyway, we have been captured by the cult – whump, as if swallowed by a whale or sucked into the maw of some addictive drug. This last week we circled the box set like jakeys round the dregs of a bottle. “How many episodes left to go?” “Can we watch another tonight?”
It consumed our consciousness. It was the last thing we talked about at night. “How did Lund know about…?” “But why did Hartmann do that if…?” During the night, one-third awake, when my legs locked with pain and Dave valiantly got out of bed to straighten them, we carried on. “Meyer said that but…” “And what about the taxi driver?” The other morning, after a dizzying five-episode marathon to the end, after dreaming with subtitles, I woke in triumph: “There was an accomplice. Someone else sent the lift down! There’s more to it!”
So addictive is The Killing that it joins the very exclusive list of Mindwipers That Occasionally Make Me Forget I’m Paralysed, on which, indeed, there are only two other items, namely driving and horse-riding. Not that I’ve done either of them for the past two weeks. January has brought its challenges, the inevitable culprits being my bladder and bowels. Not to forget the still rotting toes. People think the worst thing about a spinal cord injury is the fact your legs don’t work. The loss of mobility. It isn’t, of course. The worst bit is managing a body in distress through its own malfunctioning, which often, and increasingly so recently, is a full-time job.
Very few people ever talk about it, and I go through phases when I can’t bring myself to write another word. Turn off? I wish I could. Friends still say to me that they had no conception that this was the most difficult side of being paralysed. “How’s the walking?” they ask cheerfully. “It would be coming on,” I reply “if I could get well enough to practise.”
Life would indeed be grand, bearable even, if I didn’t have to pee through a permanent indwelling catheter that emerges like an alien worm, 3in below my tummy button. They call it a supra-pubic. That’s supra meaning “over” or “above”. Not super. Never super. Catheters are from the Dark Ages. At one end of a device that hasn’t been reinvented since the Thirties lurks my bladder, a poor, punctured, shrunken vital organ, which at least once a month becomes invaded by bugs, however hard I try to avoid them, and requires antibiotics.
Oh yes, life would be grand, especially if I didn’t have paralysed guts that constantly jump and gripe and spasm, but stubbornly refuse to empty, leading to a two-hour battle every morning. It’s my fight with the enemy within. Take it from me, it’s only when one’s pretty bathroom, in all its Elephant’s Breath and useless, claw-foot, roll-top bathtubbed bloody splendour, becomes a virtual torture chamber that one starts to appreciate things one used to take rather for granted.
And I wouldn’t mind it so much if I could blame it on my own indiscipline: if I pigged out on lard-laden food, or got drunk, or sat up late with carry-outs. On the contrary: I eat taupe. Porridge, vegetable soup, fruit, cauliflower cheese. Excitement for me is monastic – half a baked potato with ratatouille or tuna. And my worst indulgence over Christmas was a tiny port. Last food at 6pm. How achingly dull is that? And still I am a hostage to my guts.
I have yet to speak to my consultant – who now reminds me of Sarah Lund (in a good way) – but I am headed, I suspect, towards a colostomy, which means a second alien opening in my stomach. Roll up! Roll up! See the human Pompidou Centre, her pipes and heating ducts running on the outside.
But at least they run. At least I’m alive. I was feeling particularly sorry for myself until I got a letter from a woman whose son had just spent a long time in a spinal unit after a terrible accident. She wasn’t at all self-pitying but she broke my heart with one sad aside: “If only he could feed himself,” she said. And so I count my blessings. As should everyone.
You would think I would have learnt, given my experiences last year as a media tart, that agreeing to be filmed is potentially to make a complete div of oneself. Over the Christmas period I did an interview with Scottish Television – the makers of Taggart, which isn’t quite as good as The Killing – with the sole motivation of giving some publicity to the Riding for the Disabled Association.
For a start, I forgot the first rule of broadcasting: prioritise your message and keep repeating it. That way, some of it will get in. Second, my instructor Sara and I forgot that, on telly, appearances are all, even when it’s minus 7C and you need ten fleeces to survive in an indoor riding school like an industrial freezer. Thus it came to pass that Riding for the Disabled at Bannockburn got very little credit for a brief sequence of Robbie Coltrane perched on a horse, being instructed by Danny DeVito. And no one to blame but myself. Tusind tak for that. Now will someone please tell me – who was the fourth person in the building when Meyer was shot?
03-29-2013, 08:27 PM
One of the strange things about having a spinal injury is there is no one place to turn to for information. We are isolated and ignorant. Where will I get things to improve my life? Which aids are worth spending money on? Does such and such a drug work? And when will all these so-called breakthroughs, such as paralysed dachshunds getting their back ends back, translate into reality?
This is what it must feel like to be an orphan. You’re on your own. For the UK’s 40,000 or so people living with a spinal cord injury there’s no one fount of impartial advice: no mum or dad or authoritative website; no resource or text book or rolling news. As a journalist, addicted to fresh, accurate, comprehensive information sources, I find it is like being stuck in the desert, hobbled to a dying camel.
The reason is simple, if bleak. There are not enough of us to warrant anyone spending much money on us. We are not cuddly, numerous nor sexy, and we do not represent a big enough market – compared with, say, cancer – to make it commercially worthwhile for anyone to devote R&D budgets to us.
So where does one turn? To a fragmented hotchpotch. There are spinal charities – Spinal Research, the Spinal Injuries Association, Aspire, Back Up – which strive valiantly to inform. There are good US websites, which aren’t much help if you live in the UK, and spinal research conferences, but the outcomes rarely reach the great unwashed. Us.
There are many experts in NHS spinal units, who do their best but must juggle a huge workload and tend to revert to tried and tested (and necessarily cheap) remedies. There are private rehabilitation enterprises, which need to make money. There are GP practices, incredibly committed to our care, but likely to have little or no experience with the rare and fretsome problems of spinal injuries.
There may be support groups, but none I know of. Apparelyzed is a British online forum and there is the American CareCure Community, which covers all spinal topics under the sun and questions the clinical status quo, but like all chatrooms is at least 30 per cent barmy. And there’s God, who comforts those who believe, although I’m not sure His blog on research development is the most up-to-date.
Sometimes we have to challenge professionals to give us more. There ought to be creative tension, dissonance even, between clinical practice and real life, but often there isn’t, because we don’t have enough information.
Certainly when it comes to equipment, monopolies and inefficiencies rule. The man tasked with fixing my shower chair, the only agent in Scotland, turns up with the wrong wheels or minus the right spanner. He charges travelling time. And neither of my ordinary wheelchairs now suits my changing needs. Where the heck do I find a spinal expert who will be objective, unpatronising, on the ball and think outside NHS tram tracks? Google “choosing a wheelchair” and have a laugh. On second thoughts, don’t bother. Life’s too short.
So there is no absolute knowledge. Were it not for my readers’ e-mails, for example, I wouldn’t know about the Tek Robotic Mobilization Device (tekrmd.com), a Turkish innovation that stands paralysed people upright and glides them around, like a Segway, which made my eyes bulge in amazement.
Nor would I know about an article in New Scientist, which cheered me up considerably. Scientists in the US have found that training with electrical implants in the spine has enabled paralysed people to move, even after the implant is switched off. The results are “potentially revolutionary”, as they indicate the spinal cord is able to recover its function years after becoming damaged. It seems the implant strengthened “silent” connections across lesions in the cord, or even created new ones.
They tested a man who had been paralysed five years before. When the implant was switched on, he succeeded in holding his own body weight and standing on his first attempt. Seven months on, something unexpected happened: he discovered that he could move his feet. Over time, the volunteer gained increased bladder control and sexual function, and had better temperature regulation. All of these abilities involve input from the brain, confirming information could now cross the damaged area of the spine, as long as the stimulation was on.
One likely explanation was that the stimulation boosted damaged connections over a threshold needed for them to send information from the brain to the limbs. Some scientists are saying the work demonstrates that even people with the most severe spinal injuries may have some remaining connections.
Reggie Edgerton, of the University of California, one of the authors, thinks it may simply be a case of technology restricting them. “We are using an implant that was built three decades ago and designed to suppress pain.”
Isn’t that brilliant news? Shout it from the rooftops. Why didn’t we know that? And why is no one telling us the timescale for a new implant and an NHS programme to start installing them? I think we should be told.
This is the time of the year when tax officials are even more unpopular than journalists. A couple of months ago, I too was upset with HMRC. In the spirit of fairness, I would like to say that after I complained, HMRC officials remedied the problem with speed, courtesy and humanity. I would like to thank them. So stop whingeing and prevaricating, get those returns in, and remember they’re acting for the greater good.
03-29-2013, 08:30 PM
Thanks Pelican! Sounds like she had a real rough patch there for a while. I can't imagine dealing with the joys of sci and having the extra pressure of thousands of readers who are waiting for some sort of happy ending.
03-29-2013, 08:32 PM
The alarm goes off and there’s an icy blue glow from the window. These days, because of our addiction to The Killing, my husband wakes up speaking Danish. “Det forstår jeg ikke. Mit luftpudefartøj er fyldt med ål. Tak,” he groans.* “That means, ‘The carers will be delayed because of the snow.’ I want another ten minutes.”
“Nej!” I exclaim. “You’ve got to get up because you want to play with your steam cleaner. Besides, we’ve got the final episodes of the second series to watch.”
He’d forgotten about the steam cleaner. He’s out of bed like a child who’s just remembered he’s got a new train set.
Something strange happened to Dave when he entered semi-retirement: he became obsessive about the domestic status quo; the comfortable state of messiness, or messy state of comfort, that has happily existed in our home for years and which doesn’t, in the greater scheme of things, trouble anyone.
Now he’s become so house-proud – or, more accurately, now I’m trapped indoors watching him be house-proud – he drives me crazy. Does this happen to men of a certain age? Tidying things away so no one else can find them, for instance. Trying to throw out old boxes of paper treasure in the attic. And now obsessing over the marks on the kitchen floor: honest, inoffensive marks which, like lines on a face, speak memories of a family life well-lived; of laughs and scuffs and minor catastrophes. He’s fixated on them.
The floor is clean enough; Barbara bleaches it every week. We never were Poggenpohl people. But this man is like Lady Macbeth, haunted by the stains no one can see. Which is where the steam cleaner came into play.
I don’t know if it was one of his friends who mentioned it, or maybe he watches the shopping channels after I’ve gone to bed, but he latched upon the idea of this ubiquitous five-in-one steam cleaner which, it’s claimed, will remove the darkest marks from your home and – for the inner Presbyterian – no doubt your soul as well.
“You’re mad,” I said. “He’s lost it,” said Barbara. “I’d be seriously worried, Mum,” said Dougie, still miffed with Dave for redecorating his bedroom as a Premier Inn when I was in hospital. But my husband bought the cleaner; demanded that I – with two working digits out of ten – assemble it for him (beware, clean-freaks, the machines are made in China and come in many bits); and is, as I write, scouring away happily in the kitchen. I can hear the distant hiss of steam on stone. “It works,” he cries triumphantly. “Come and see.”
The cleaners are selling like hot cakes, it’s said, which demonstrates a very shrewd bit of viral winter marketing to baby-boomers with too much time on their hands and a nation in recession. None of us can control bigger events, it is clear, but some of us need to feel we can exert power over dirt at home. And evidently some peculiar folk get inner peace from whiter grouting, sterilised skirting boards and a floor two shades lighter than it’s ever been before.
This was, in fact, a week for purchases. Ever since I came home from hospital I have been weighing my options about getting a power wheelchair for use outside. I held off, partly because I’m sceptical about gadgets; and partly because I wanted to buy time. The over-optimistic side of my brain reasoned that I would soon be able to do things on foot, so why waste money?
This is not to say I’ve given up the dream of stepping outside on foot one day, but I have resigned myself to the fact that it’s going to be some time hence, rather than soon, and wobbly with it. There’s a steep little hill directly behind our house, a bit like Mrs Tiggywinkle’s, where you could throw a pebble from the top and feel it would go down the chimney. And I’ve sort of resigned myself, too, to the fact that I’m unlikely to climb that hill under my own steam.
These reality checks are hard but necessary. Denial is an inevitable process for those with spinal injuries. One of my e-mail mentors tells me it took him five years to get a power chair after his accident. “It’s not ‘giving up’,” he says. “It’s taking advantage of modern technology. Now, with a power chair, my walking ability is if anything better and quality of life is a great deal improved.”
Life, as John Lennon wrote, is what happens when you’re busy making other plans. So in 2013, while I’m working for more recovery,
I have decided to enjoy the here and now as much as I can. Hence my first compromise – the pending arrival of a Gator, which is to country dwellers what Gucci or Louis Vuitton might be to fashionistas: a bit of a wet dream.
A Gator is a utility vehicle; a quad bike with a bench seat; a golf buggy on steroids; a pick-up without limits. Ours will be adapted with a lower seat – for transfers from the wheelchair – and hand controls; and be fitted with a cab and a heater and thus allow me to drive around smallholding, hill and forest. All I want is to feel the wind in my face again; to be able to escape to wild places; to go off piste. To see a different view.
There are 4x4 disability scooters called Trampers, tremendous things apparently, but that’s as yet too ghettoized for me. The Gator is an initial compromise that we can both use. For my dearest Aggie Mackenzie, it will be a mechanised wheelbarrow and an image-enhancer – rugged, macho, sexy. And with any luck it might get him out the house and stop him bloody well steam-cleaning everything.
* “I don’t understand. My hovercraft is filled with eels.”
03-29-2013, 08:36 PM
One of the givens in life, the stereotype we absorb like osmosis from Western culture, is that women are more emotional and more sensitive than men.
You need someone to confide your troubles in? Turn to a female friend. Or failing that, a labrador. They’re the perceptive, understanding, sympathetic ones. Blokes, on the other hand, the prevailing joke goes, are hopeless goof-balls, emotional illiterates.
Or are they? It is one of the received wisdoms I’ve been quietly pondering since my own happy planet was knocked out of orbit. One of the biggest burdens of any sporting accident, of a hurt that one inflicts, effectively, on oneself, is that it also inflicts huge distress on one’s family and friends. And if it’s a grave enough accident, as mine was, you will have sufficient sad years to reflect on the pain you’ve caused others.
What was obvious to me from early on, even from the high dependency ward, was that the visitors who were most shattered by what had happened to me were the men in my life. Or, perhaps, they were the people who were least able to conceal how shattered they were. Not just family members, but also my mates. I was deeply touched by the number of men – colleagues, acquaintances, old friends – who would never have been demonstrative in the past, but who for the first time hugged me, kissed me tenderly and had tears in their eyes.
And it happened too often just to be coincidence. Some of these men were awkward, some of their visits almost inappropriate, but they were brimful of sincere emotion. They couldn’t put things right, so they wept for my helplessness and for their own.
It was after one loyal friend, a hawkish scientist who wouldn’t pass an opinion about whether he liked the wallpaper without first getting it peer-reviewed, came to see me with tears running down his face that I realised my injury was a game-changer. “Wow,” I remember saying to myself. “I made G cry. Things must be really serious.”
Through life, I’ve been lucky that many of my great friends have been men. Growing up a tomboy, I always enjoyed the company of guys. Oh, I love my women friends too. But men tended to have more interesting conversations, tell funnier jokes and do more exciting things.
Languishing with a bust body, I was contacted by many of these mates from years back – brief, fond, almost passionate notes and e-mails – lamenting my situation. There was a kind of sweet, perfunctory, blokey poetry in the way they handled it. “Tell me it’s not you I’m hearing about,” texted one, after a silence of ten years. “I don’t know what you will do to seek oblivion – drink, drugs, food – but do whatever you have to, girl,” wrote another. “You were always one of the good guys,” said another. It was strangely moving, as if I had liberated them.
I suppose they were paying me the ultimate compliment: they were able to reveal their inner feelings to me. Maybe they imagined themselves in my situation. Perhaps there is something in the totality, the finality, of a spinal injury that triggers men to empathise; something about disempowerment or castration or utter physical uselessness that touches them at a very primitive level.
Maybe part of it was very simple. Here was an intimidating six-footer – a big wummun, as the Scots say – felled to a seated position, and they could bend down and hug me without fear of feeling small or being misinterpreted. Men’s emotions may not always be complex, but they are genuine and therefore very precious. Whatever the reason, I feel honoured.
Because according to the first rule of popular rom-com, men aren’t supposed to express emotions; the rational parts of their brains are supposed to trump all that touchy-feely stuff, allowing them to switch into problem-solving mode, while the women do the keening and wailing and empathising.
But next time you read some glib armchair psychology about men having emotional bypasses, ignore it. Scientific research backs this up. Infant boys are more emotionally reactive and expressive than infant girls. Men, in fact, often have stronger emotional reactions than women, but they are conditioned from an early age to damp down “unmanly” displays and adopt a poker face to appear tough. Ann Kring, an American psychologist, says it is incorrect to make a blanket statement that women are more emotional than men. It is correct to say that women show their emotions more than men. And the head of Eton is on record as saying boys are more emotional than girls, and this shows through particularly when they are under stress. And he should know.
My girlfriends, by contrast, were amazingly businesslike and practical. They demonstrated their love by doing stuff. They brought – still bring – meals; they sorted clothes, answered letters, found homes for horses, sold trailers, plucked eyebrows, took me to the hairdressers. Their sensitivity lay in hiding their distress from me. They still hide it, many of them, demonstrating love instead by setting aside busy lives to come and make me laugh.
The thing, one of my oldest girlfriends explained, is that your situation is very challenging for everyone around you as well as for you. No one really knows what to do or say.
Anyway, I have a new development to report. I’ve discovered that I now have the strength and stamina to use my heavy-duty walking frame, the marvellous Topro Taurus, independently. I can trundle along the living room and pause calmly to look at the view. Cry? I’ll soon have them all, men and women, howling in the aisles.
03-29-2013, 08:39 PM
People ask for my views on whether they should continue horse riding, as if my risk analysis is somehow refined as a result of my accident. I had the unnerving experience of being contacted by a teenager, 14 or so, who asked me if she should carry on cross-country jumping.
Help. What does one say? Stop? And while you’re at it, stop cycling on the road, travelling in cars, eating polyunsaturated fats, going near building sites, breathing diesel fumes, walking in the hills or drinking alcohol. Your life may last until you’re 150, but it won’t be everyone’s idea of fun.
Or does one say, carry on? I told her to discuss it with her parents and a professional trainer, to make sure her horse was suitable for the job, and to ask for an air safety jacket, which inflates if you leave the saddle. Learn how to fall. I told her that if she wasn’t enjoying it, despite the precautions, she should stick to dressage.
But one never escapes risk. Living is intrinsically dangerous. And horses are intrinsically deadly just to be around. Probably as many people get hurt on the ground, kicked or crushed, as do from falling off them.
In 2009, as many will remember, David Nutt was forced to resign as chair of the Home Office’s Advisory Council on the Misuse of Drugs after saying that taking Ecstasy was no riskier than “equasy”, a term he invented to describe people’s addiction to horse riding. He was spot on.
Professor Nutt said horses caused 10 deaths and more than 100 road traffic accidents a year. Forget Ecstasy figures; compare that with cycling. Of course, it is a far more popular sport than horse riding, but readers of this newspaper know all too well, through our campaign, that cycling deaths in 2012 hit a five-year high, with 122 cyclists killed on Britain’s roads.
This debate is about choice and freedom; about balancing risk with sensible precautions. I would defend to my last breath the right of anyone to choose life, excitement, sport and adventure. But always to do so with the knowledge that although you reduce risk as much as possible, you can never eliminate it completely. And that’s the way it has to be. Accidents happen. I could have broken my neck tripping over a kerb, as many people in spinal units have done. At least, if you will forgive me the mordant humour, I console myself that my accident happened doing something moderately exciting.
Though I wish, God how I wish, I had been wise enough to give up jumping when I turned 50 and stick to dressage, where the odds of injury are lessened. This is a wholly rational response. I also wish cyclists could be better protected by improved driving, and the laws of rugby tweaked to better protect the players from injury, especially young ones.
One of the most moving letters I have ever received came from an accomplished horsewoman, who believed my column saved her life.
“Who would have thought that, as my life flashed before my eyes, it would be your name that was in my final thoughts?” the woman wrote. “I followed your remarkable story from the silly fall onwards. I told people about it. I gave up hunting because of you. But at 54 I still felt that I was the right person to rehabilitate old racehorses.”
She told me one horse had retired and she got another. “On a dull hack, out of nowhere, he produced the kind of monster buck that is the stuff of nightmares. Amazing how much time there is while in the air, even at speed, to work out the likely prognosis. But one thing I wasn’t going to do was drop onto my head, and all because of the story you wrote about your fall. Every fibre made me twist and turn and take up those final moments to fall with my weight spread as much as I could onto my shoulder. And there was that moment of ‘Can I move? Oh dear, I have got to try.’
“It’s been seven weeks and my broken shoulder is healing well, and I can’t wait to get the strength back to ride again. But it won’t be a thoroughbred, I am afraid; it will be a quieter native pony. It is very possible that it is only because of your story that I can even contemplate this.”
And so the message has to be: be sensible, but whatever you choose to do, you must do it with a light heart. Do not worry or fret. One of my favourite quotes comes from Sydney Smith, 1771-1845: “One great remedy is to take short views of life. Are you happy now? Are you likely to remain so till this evening? Or next week? Or next month? Then why destroy present happiness with distant misery, which may never come at all, or you may never live to see it? For every substantial grief has 20 shadows, and most of them shadows of your own making.”
Talking of current rather than distant misery, it is time for me to visit a colorectal surgeon. Sitting with him, it struck me this is not work at the glamorous end of life. Either you’re consulting, and your time is spent listening to lengthy tales of gut ache and jobbies, or you’re elbow-deep stitching up coils of intestines. As the song goes: “We praise the colorectal surgeon/ Misunderstood and much maligned/ Slaving away in the heart of darkness/ Working where the sun don’t shine.”
He agreed with me that I have reached the end of the road and am a candidate for a colostomy. I am entering new territory, grateful only that there are people like him good enough to do life’s dirty work. As for the risk… Well, like horses, it’s worth it for the sake of freedom, isn’t it? And I’ll still be able to ride.
03-29-2013, 08:43 PM
Things You Never Discover Until It’s Too Late No 6: that she who crows of progress one day is guaranteed to eat dust the next. Last week, in this column, I was euphoric about how my rehabilitation was going. Using a heavy-duty walking frame, the improvement in my core strength and steps was undeniable.
Even as I wrote it, I knew I was doomed, that my rogue body would make a fool of me before the words saw the light of day. Such is the random, tortuous nature of neurological repair that I don’t think I have ever, in almost three years, had one good week calmly and progressively follow another.
No wonder, with incomplete spinal injury, most people give up on any recovery – physiotherapists, medics and certainly the sufferers themselves. It takes a peculiar type of deluded masochist to keep steering this rollercoaster of hope and despair. How much easier it would be, I thought ruefully last week, as my hateful bowels ruined session after session of physiotherapy, if I’d simply become an alcoholic or succumbed to large doses of prescription drugs, and sat drooping in a power chair in front of the telly every night until the carers came to put me to bed.
Things You Never Discover Until It’s Too Late No 17: that there are two parallel worlds out there. If you have a flashy job, say in the media, advertising, fashion, sales, finance, national politics, industry or marketing, you can go through life honestly believing that’s all there is to it: you’re a member of the happy, shiny tribe, with rewarding jobs, nice houses, pleasing possessions and healthy children.
In this world, dilemmas are all relative: the high sugar content of Yakult, perhaps, or the fact your children aren’t achieving straight A’s, or the dreadfully early departure of your flight to the Alps for your annual skiing holiday.
If you’re lucky, you can stay in this world all your life, insulated from poverty and tough realities, to the point where you begin to assume that this actually constitutes life. I can state this because, to a certain extent, I used to inhabit it. Not arrogantly, I hope, but, like millions of others, shielded by the expectations and empowerment that excellent health and a well-paid job brings.
It’s only when something really bad happens (death, illness, disaster, dementia – something life-altering that money can’t solve) that you are tipped from your comfortable, complacent rut and land in the parallel world. This is the one that’s been there all the time, full of good, anonymous people, who when you need them – and you never know when you will need them desperately – will help you without judgment or hesitation and with unfathomable kindness.
Until my life was shattered, I’d never really grasped the extent to which they existed – carers, charities, other families carrying illness and disability. How naive it sounds to cry eureka on discovering that there is a hidden army out there unrepresented by the shallow media image of modern life. I should have known this. I should be embarrassed to admit my ignorance. Instead, like some crazy evangelical, I feel like shouting, “Hey, it’s out there! Kindness really is everywhere. Lots of it. Please go add to it.”
Things You Never Discover Until It’s Too Late No 44: that petrol stations are actually lovely places. For months, I’ve only been able to buy fuel for my car if I took someone with me to do the filling and paying. This is an unbelievable chore for them and teeth-gnashingly frustrating for me, to have to drive past a filling station with a nearly empty tank and think, “Old me could have nipped in and filled up in two minutes.”
Then someone asks on my behalf at our local, community-owned petrol station, and – ref. No 17 above – they say they’d be delighted to fill it up for me. And then I discover – again, ref. No 17 – a guy called Jim, based at a Shell filling station in a nearby town, whose full-time job is to stand around on the forecourt and assist people like me, who need help refuelling.
Things You Never Discover Until It’s Too Late No 53: that there are no easy ways out of the secondary effects of paralysis. None at all. I went to see the stoma nurse this week in preparation for a colostomy or ileostomy, and she told me, in a very kindly way – ref. No 17 – about the procedures. She showed me pictures of guts emerging from stomach walls like short, red, fat men’s willies; stuck mysterious bags with sticky bits on them to my tummy; talked of hernias and double bags and single-use bags and warned me I’d probably have to stay in hospital for a week.
And suddenly, very suddenly, it all ceased to be fun, the next episode in the game of being big, brave, tough Mel, and became bloody scary and lonely. Please, I want to go back to being a complacent, happy, healthy mistress of my universe, catching the early flight to Geneva. I don’t want to be a paralysed, sh***y wreck. I don’t want go back into hospital. Please never again. I don’t want to lose my vital organs. I don’t want a willy with a bag on it. I just want something to be easy and quick and positive. I came out of her room and cried like a lost child in a supermarket.
Things You Never Discover Until It’s Too Late No 276: that dry-stone dykes always beat cars in games of paper, scissors, stone. And that a VW Polo’s rear bumper is given a certain amount of, erm, character with a severe ding from reversing with a corpse of a body that won’t twist any more, eyes that are failing and fingers that can’t work the accelerator. Oh well, at least it’s my wall and I don’t have to apologise to anyone. That’s something.
03-29-2013, 08:48 PM
It’s roasting hot, airless. I can see the morphine when I shut my eyes; the wriggling, itchy texture of opiate on the inside of my eyelids. I tug my theatre gown up, pushing the covers down to the bit where the walrus starts, my new bedmate, the thing that’s been grafted onto my waist where my right hip and thigh used to be, the skin taut and shiny. I’m a vast streamlined creature.
“Try and cover up, pet. There are men on this ward,” calls the female auxiliary nurse. In the dark, I seethe with rage, briefly, silently, pointlessly – all those decades wasted fighting a particular mindset. Does she want me to wear a bloody burka? Is it my problem if my chest is bare in the dark; will men be driven wild by my shitty shrivelled body, with sad fried eggs upon my chest? It’s my fault? I’m frothing now, my polemic tightening the blood pressure cuff on my arm. What a great metaphor: it’s a man’s ward; it’s a man’s world! Cover up, all pets, lest you evoke evil desires. Then, at the peak of my lathered feminist diatribe, I remember there’s no point: I’m back on my back; back in the system.
No fancy stuff. Life is ordinary. I’ve done what hundreds of frail, compromised or elderly people do every day: I have fallen and broken my hip.
I was in the company of friends – up, demonstrating my latest improvement in core and leg strength, when I overbalanced and fell on the floor. My left shoulder bore the impact. My left shoulder, dear reader, wasn’t even bruised. But when I hit the floor, my right thigh, like a pendulum, flipped awkwardly across my body. My right knee ended up resting on the floor beyond my left hip. My exceptionally long femur – a big lever less supported by muscle than it once was and also weakened in density by lack of walking – basically broke itself, crashing across at an unnatural angle for anyone but a gymnast, snapping at the top of the thigh. Like a twig.
But of course I didn’t realise what I’d done, did I? I didn’t feel it or hear it. I’m paralysed; I don’t have anything like normal sensation.
So my friends scooped me back into my wheelchair, I had a coffee, told them I felt fine, and got in my car to drive home.
And I did feel fine. Oh, I knew I was jarred up – the right hip felt uncooperative. But I hadn’t landed on it, there had been no impact, so how could it be broken? Once home, I transferred into my recliner chair to rest it. It ached. True, I felt a little queasy, but like all fools, I thought I could ride it out.
It wasn’t until I was trying to get from wheelchair to bed, quite late that night, that the pain kicked in. Pain that had me crying out and vomiting helplessly. I saw my husband’s face turn into a mask.
So here I am, queen among dozy martyrs, once again contemplating my life from a prone position upon a hospital bed, encased in a self-imposed bodycast of immobility and pain, fighting the seduction of the morphine.
I can’t even be bothered saying it’s not fair. It isn’t. But that changes nothing. Yet again, I’m the mistress of my own destiny: I chose to be active, to pursue rehab, and now this has happened. Looking at it one way, it’s a success story: I have rehabilitated enough from a spinal injury to be able to do enough to be injured again.
The paralysed break bones all the time and are unaware. It happens. It’s routine. You go for it, because you’ve already suffered so much you have little left to lose. The logic is impeccable.
The trouble is that, right now, I can’t quite buy it. I feel a total plonker. I’m embarrassed. And most of all I’m in pain, far worse than any pain I’ve ever felt before. The walrus weeps from a 24in scar, studded with dozens of staples. Every single movement hurts. This broken bone was dragged and stirred and churned for 24 hours because I insisted there was nothing wrong with me. “Nice,” says my brother-in-law, a forensic mortician. “That’ll have looked nice.”
And so the torture takes on its familiar cacophony, the soundtrack of the NHS in trauma mode. It’s the eternal perspective of the beetle on its back: the handovers from ambulance personnel to A and E; the X-rays; the smell of hand gel; the pain of the cannula twisting in my arm; the bags of precious dark stuff, B Rhesus negative, dripping into my arm.
The operation took four hours. They put one screw into the ball joint, another giant screw crosses it and threads down my femur almost to the knee. It was done with a low spinal anaesthetic, not a general one; instead I had a sedative and slept throughout the procedure.
I lost 2 litres of blood. My haemoglobin level low, I struggle to talk or lift my head, and over the next 3 days I am transfused with 7 units. I lie at night watching the dark syrup drip down into my veins. And me and the walrus prepare for the long road back.
03-29-2013, 08:54 PM
And so it begins again. On the fourth day after my hip operation the physiotherapist arrives at my bedside, that steely look in his eyes. It seems unthinkable, but he’s going to try to manoeuvre me out of bed and into a wheelchair.
As it turns out, some things are not yet quite possible. With a mouthful of morphine gel and two people’s assistance, I get as far as legs over the bed. But the right foot doesn’t reach the floor and hangs, twisted inward by trauma, several inches above it. I feel the nausea rise. Enough for a first attempt.
On day five, with many expert hands and the use of a wooden transfer board, I manage to slide across into my wheelchair. No ship-to-ship transfer in a force ten could be as terrifying. Broken-hip pain can best be described as biblical: there is the anticipation of it, which is worst of all, followed by the electric jolt of its arrival. For me, the simple change of position also feels epic: the knowledge that I can recover the ground I have lost; that I can at least get out of bed and back onto wheels. Lesson in life here: there is nothing like a double dose of disability to make you yearn for a single dose; nothing like two thumps in the face, or two sessions of torture, to make you appreciate just one. It’s too much to ask to be made whole, dear Lord, but a bit of a miracle to allow me to return to being halfway crippled – now that would be just ace.
By day six I am able to get in my chair with the help of nurses, and I start to wheel myself around the bed. I can also, for the first time, access the back of my head with a brush: by now, I have the worst bed-head ever. This time, the family refuses to cut it off. A friend uses most of a tub of detangler on it and tames it into a small, severe ponytail at the nape of my neck. Very Jane Eyre it is, too. With dreams of a Mr Rochester long gone. I’m glad there are no mirrors here.
The next day is my mother’s birthday. Poor dear soul; I am so glad she did not live to see me like this – and it marks happy progress. I manage to get into my wheelchair without any morphine. The physios produce a frame: I stand, for a few seconds, and my left knee straightens a fraction. The surgeon has told me I can start weight-bearing on my repaired hip, but so far the knee is too crooked to let the foot reach the floor.
That evening, for the first time I raise myself up onto an elbow in bed. I’m getting back to where I was. Later, as if to reassure me that life could always be worse, I am transferred to the female orthopaedic trauma ward, where they lie in serried ranks with their broken hips; birdlike, grey-haired, often confused. This is where they come, the demented old ladies, when they fall in care homes and break their bones.
Often I wonder, when I hear nurses being criticised, how many of their critics have observed the treatment they get from patients. Here is the soundtrack of my ward, some of the confused blue rinses turned into aggressive banshees by dementia and pain. “Ya f***ing bastard, get your f***ing hands off me. Ya f***ing bitch, you’re hurting ma leg.” And the calm voice of reason: “I’m not touching your leg, Cath; please mind your language. Now, if you could roll a little to the left.”
We never hear about this when we read attack after attack on the low standards of compassion in the NHS. We never read about the effing and blinding and theatre of street abuse – or hear the sounds of bashing and crashing as a patient flails at the nurses. And these are just the octogenarians. The other old ladies and me, those of us still in possession of at least some marbles, we cower beneath the blankets and close our ears to it.
Day seven – Cripple Towers calling.
As I write this column, on an iPhone while lying on my back, I am in the final stages of preparation for another operation – a colostomy. My insides are being flushed, my consent sought, my jewellery removed. I am growing tired of telling consultants I don’t want to wait; I understand the increased risks. If you lived my life, I want to shout, you would want to get things all cleared up at once.
I have pushed to have the second surgery while I am still recovering from the first. I can’t bear to go home and wait three months for my scars to heal. The 84 staples have been taken out; a long pink incision now defines my thigh. I have packed in my career as a bikini model.
Instead, this morning, there are fresh body maps to explore: two black marks inked on my tummy, guidance for the surgeon as to where to fish out my guts. I lie washed, gowned, fasted for surgery, and I have received the dreaded black spot. Just as well I’m not superstitious, isn’t it?
Perhaps, you “Fly Pelican Fly” should fly over to Norway late April and also May early?
- Hospitality and stay on us.
03-30-2013, 09:09 AM
Perhaps, you “Fly Pelican Fly” should fly over to Norway late April and also May early?
- Hospitality and stay on us.
Thanks Leif. Ordinarily I would be there in a shot but April/May is really busy for me with our UK project. Perhaps I'll see you at Working2Walk in September?
Fly Pelican Fly
04-07-2013, 09:48 AM
The Times UK
Two days after the colostomy operation, following fast on the rebuilt hip, I feel shattered. Perhaps justifiably. Everything hurts. The orthopaedic physios come and get me standing, weight-bearing, both knees straight, both feet flat on the floor. Pelvis screaming, I last for a minute, then maybe another 20 seconds, before the grey mist and the nausea swirl in.
But it’s a victory, in my doubly weakened state, to have managed this much. And, perversely, I take some comfort from the fact I’m feeling pain. My masochistic streak makes me refuse Oramorph – oral morphine – and I am only taking dihydrocodeine when I’m desperate. I do this for one reason alone: strong pain relief takes away my brain, and these days my brain is all I have left. So I simply max out on ibuprofen and paracetamol.
Every morning there are tiny improvements in my ability to sit up, bend my legs, to transfer from bed to wheelchair. Plus, my massively swollen hip and thigh are shrinking back to ordinary size. The wound aches, the knee rolls inward, and the pelvis is like piano wire, but the giant pain has gone.
In the information I studied before my colostomy operation, the “after” pictures looked like a man’s willy sprouting from your tummy – but happily my section of gut, fished to the surface, resembles only a modest little sea anemone. A bright red one. It is housed in a plastic bag glued to my skin. I lift the bedsheet and sneak peeks at it, looking for signs of life. Occasionally, it burps at me from behind the plastic. That, you realise in slow wonderment, is what in a former life was a fart. But what was it like, that former, healthy, thoughtless life? I can barely remember it now.
Apparently, once one gets insouciant with running one’s vital service ducts down the outside of the body, like the Pompidou Centre, these see-through stoma bags are replaced with American Tan ones, to conceal the contents. Surely, we are missing a trick. American Tan is so last century. We could have scenic views of Glencoe, or the Yorkshire Dales, or the London Eye, printed on them. Roy Lichtenstein pictures; Lady Gaga; the Rolling Stones. We could even get them sponsored. Saga holidays. Santander. RBS. Nike. All it needs is corporate courage.
As a patient in an orthopaedic trauma ward, I find myself getting jealous of the old ladies. Within 24 hours of hip surgery, the physiotherapists cajole them to stand. And they can. Within two days, they are shuffling on Zimmers. They are amazing, like lame, elderly fragile little birds getting ready to migrate home for their final summers. Within four days they are on crutches and being discharged – a cruel reminder, as if one needed it, of the constant reproach of spinal injury. Why can’t I do that? Because my body’s hard drive has been terminally damaged, that’s why.
But I have overstayed my welcome in this ward. Nobody lingers long in the modern hyper-managed NHS. One of the doctors, a real miss for the world of diplomacy, asks me when I am moving to a rehab ward. He’s asking me? “I’m hoping a bed might become available at the spinal unit,” I say, bewildered.
He’s not really listening. “This acute bed costs £450 a night,” he tells me. “Rehab beds are only £250 a night.” Astonished but amused, I find myself politely apologising. I guess that’s why the Royals go private; so they never get accused of bed-blocking. But that’s the NHS: the “hard” skills are magnificent; the “soft” skills sometimes less so. Wonderful care exists alongside the pretty awful and, in between, a rushed, rough kindness flourishes.
And ultimately life in hospital, for the unaccustomed sickie, is as entertaining as the Moral Maze. In a nearby bed, a woman my own age, by her own admission a frequent inpatient, is restless for attention; or perhaps more for drink and fags. I can’t see her face behind the curtain, but there are clues she’s not the Duchess of Cambridge. “This place is daeing ma f***ing heid in,” she cries repeatedly. Mine too, honey, I think, but which of our lifestyle choices is most to blame? Me and my sporty gung-ho silliness; or you and your destructive personal habits? We take our different risks; we pay our taxes in different ways. Who has the right to pass judgment on our use of resources? Certainly not me.
Finally, I get word from the spinal unit. There’s a bed free. “OK, pal,” says the hospital porter in the menacing way only Glasgow hospital porters can, bundling me, rigid with fear of my bad leg being bounced off the wheelchair, into the back of an ice-cold hospital transport. Doors clang. Snow flurries hit my neck. I have no coat, no blanket. But the leg and the bowel are fixed. Things are on the up.
04-07-2013, 09:55 AM
The Times UK
Groundhog Day. Back in the National Spinal Injury Unit at the Southern General Hospital in Glasgow, where I first arrived exactly three years ago, borne on the shudder of the Sea King. And once again I hear the sound of the mighty old helicopters landing; the unmistakable racket of their engines shaking the buildings, bearing fresh disasters, new suffering. Whoever the casualties are, the poor sods, please let their spinal cords be intact.
But sometimes you cannot dwell on other people’s distress, but must focus ruthlessly on yourself. I am back in the spinal unit to get rehab in the gym for a few precious days. Beds are in short supply just now; I have to pack as much physiotherapy in as I can before someone with a new injury arrives.
The Olympic baby boom is having its impact. Half the therapy staff are about to leave to have babies, including Susan, my beloved former physiotherapist, who has been told she is bearing a large baby in a Hobbit’s body. The heartless creature expects sympathy from me? I tell her no one under 5ft 3in should be allowed to get pregnant anyway. I am assigned to the much kinder Lynsey, who sets out to stretch my mangled thigh muscles and rebuild my confidence about moving myself around.
I am desperate, so desperate, to get back to where I was before my two big operations. But I am forced to accept that the femur rebuild, a fairly major procedure called a gamma nailing, has left me considerably weakened, if not verging on pathetic. I spend a lot of time lying on my back, with a huge exercise ball between my knees stretching the new leg outwards. Lynsey has me hopping on and off beds into my wheelchair, in and out of the car in the gym. Then we do some standing, using a static frame, which is agonising because my pelvis and lower back have quietly seized up; locked for eternity it seems. I lean forward in despair and my tears silently decorate the well-worn green of the gym floor. “See, it’s not just me that makes you cry,” remarks Susan in passing.
After four days of intense inpatient physio, it is time to go home. For some reason this time, in the spinal unit, among the normal scorching black humour and familiar smells, I am infected with bitterness. Maybe it’s coming from some of the patients; more likely it’s coming from me. I am aware of a “Why me?”, a most unattractive element of self-pity, tugging at the edges of my logic, and it perturbs me. But the unfairness of what life has dealt me has started to rankle; I’m sick of being Mrs Happy Smiley Positive Tetraplegic.
Constant pain, I suspect, is to blame. I’ve never experienced this much before. From the waist down, I feel red hot, buzzing with a mixture of neurological spite and musculo-skeletal venom. Every time I try to move, I feel one bit grinding against another; my body is like some decrepit piece of machinery left to rust, and now far beyond the reaches of WD-40.
Once home, beyond the comforting reach of nurses and doctors and blood tests, the pain rapidly becomes scary. Perhaps it represents other evils, unknown nasties, queueing up to dispatch me in the night. Maybe other things have gone wrong – given my luck, they would, wouldn’t they? – and I’m dying. But because I’m paralysed I can’t identify the specific area of pain; so I’ll just whimper my last in the dark and no one will realise until it’s too late.
Helen, my wise and warm district nurse, comes to call and gives me a stiff talking-to. Take the extra-strong pain relief. Stop imagining stuff. Give myself time. Most of all, stop dwelling on the unfairness of it all. “We are where we are,” she says.
Who was it who said: “Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts for ever”? Ah yes, Lance Armstrong. So the glory of suffering really is all a complete sham.
Times readers continue to restore me gently with their kindness. To everyone who has sent good wishes since my recent accident, I would like to say a heartfelt thank-you; and to the mysterious Judith in Twickenham – who I’m sure has access to spy satellites, because she always manages to find me and courier the most exquisite chocolates to me, wherever I am – a special mention. And then there’s my wonderfully blunt mate, Jeannie, in Australia, who asks, with admirable brevity, “Isn’t it marvellous how brave we can be when we really don’t have any choice apart from topping ourselves?” It is indeed.
04-14-2013, 05:28 AM
The Times UK
They say things come in threes. With my body recovering begrudgingly from two big operations, I inadvertently injure it again, this time eating breakfast in my own kitchen. GI, be damned. Superfoods, be gone. Porridge is nothing but dangerous. A microwaved Pyrex bowl of Quaker’s, in the brief time I nurse it in my lap, unaware how hot it is, brands three crescent-shaped blisters on the inside of my left thigh.
Hours later, the first I know of them is a blister bursting and wetting my trousers. It’s a strange sensation, gazing at the yucky, angry, scarred surface of your own skin, and feeling bugger all. No pain; nothing except more anguish of the mental kind: the weary reinforcement, yet again, of my altered state, my new vulnerabilities. I find some Flamazine cream, left over from 15 years ago – when my son, playing at being a farrier, had heated horseshoes on the fire and then picked them up with his bare hands – and my sister wraps the thigh in clingfilm like a marinating pig.
They have rolled in, my brother and sister, from various corners of the world to care for their baby sis once again. The kindness of kin.
We drive across the country to take the boy, in the final throes of his thesis, out for a meal. He is gaunt, and it tortures me that instead of being a practical, huggy, quietly-lightening-his-load mother, all I can do to ease his suffering is pay for the binding of his academic work and buy a hot meal.
How wrong it nearly goes. We park the car on steep cobbles in a cramped Edinburgh street. Thirty-odd years ago I danced down here, intoxicated by youth and possibility and maybe even a bit of alcohol; this time, suddenly, I need to change my colostomy bag. Now there’s a sentence I never thought I’d write.
Neither the restaurant which is our destination nor any of the nearby cafés possess disabled loos. But for the Reid family, who grew up wild camping and peeing in bushes, having a vicarious poo in a Volvo is a breeze. All for one and one for all. And so they line up, my dear ones, their backs against the car to shield me, while I amaze myself by doing the necessary with paralysed hands under circumstances the stoma nurses never practised with me. Just like changing a baby’s nappy in a tight corner, really. It’s funny, actually. Gardyloo...
And hey, what a validation of my decision to have the colostomy operation. It’s a life-changer. Had this happened before the op, we would have had to turn and run for home, evening ruined. Instead we have a lovely time: laughter, stories, plans. The huge party we never had – why not next summer? I’m here to enjoy this... when I might not be here, in any sense... so bloody well enjoy it, I tell myself sternly.
Is there a bigger theme, a less self-centred kernel to what I write in this column, something other than the solipsism of my own suffering? I hope so. I know – readers tell me – that I help put some of their problems into perspective. It works for me, too, this sense of the relativism of our lives. When things get particularly challenging, my thoughts these past few weeks have flitted to JT McNamara, the jump jockey so terribly injured at Cheltenham. How dare any of us feel sorry for ourselves, or lament our aches and limitations, let alone burnt toast, when he lies in hospital?
Never say never. I have progress to report, as in two-steps-back-one-step-forward progress. I have found a sports masseuse, Angela Mudge, a former world mountain running champion, an extraordinary creature of sinew and skyrunner eyes, who frees up the pain in my lower back and inner thigh while spellbinding me with tales of 20 hills climbed in a weekend. And my neurophysiotherapist, Kenny Thoms, has his first session with me post-hospital. Can we possibly get back to where we were?
After 45 minutes of passive stretching, hip rolling and him cruelly seeking flickers from my leg muscles, he suggests we try a stand.
I struggle upright with assistance; and, remarkably, my pelvis tilts and knees straighten. The anticipated yowl of pain remains unuttered. “Want to try a walk?” he says, and I give him one of those open-ended “Only if you’re feeling particularly crazy” looks – like you’d give a good-looking guy you’d just met who asked you to run away with him.
And thus, with Kenny bracing my wobbly knees, and my sister right behind with the chair, I shuffle about ten steps with the heavy-duty Zimmer. By the last four steps the hip is really hurting, but the brain is exploding. The glory is that the legs can still lift and swing forward, the feet still place more or less where my eyes want them. Grotesque puppetry of the flesh it may appear to an outsider, of course, but the point is I can still do it.
04-14-2013, 09:16 AM
Thank you, thank you, Pelican, for posting Melanie's articles. I was holding my breath as I read through her latest set of accomplishments and set backs. I admire her greatly for her determination and raw honesty. I so want things to go well for her. I appreciate you taking the time to fill us in.
04-20-2013, 11:18 AM
The Times UK
Six weeks since the femur fracture and I’ve suddenly realised that looking after myself has become a full-time job. A peculiar distancing has occurred between the bit that still works – the brain – and the other bit, the body, the lanky recalcitrant lump of a thing that doesn’t work, but is still attached to me and makes constant, high-maintenance demands.
The brain regards the body with resentfulness and weariness, like a non-maternal mother who desperately wants to go back to some high-powered post but is stuck at home with a fretful infant. The body is my prison, my dependency; a dead weight shackling my free spirit.
You know what’s worst? Life’s screamingly dull, that’s what. How boring my situation is; an existentialist, time-consuming grind of pill-popping, bag-emptying, pressure-relieving, pain-dodging, all the while smiling gratefully at kind people and repeating, “I’m fine, thanks.” There is no time for anything creative. Somehow I’m always busy waiting for the next chore. Waiting, if I’m honest, for better health.
Meantime, I yearn to get out of the house and stretch my brain, if not my legs. Meet different people, react fast to situations, be dazzled by arguments. But I’m simply not yet physically able. My head is woolly; I am easily flustered; I fall asleep mid-sentence. Right now there’s no escape: I can’t ride or run or fly or drive or read good books or watch clever movies.
Am I allowed a damn good moan? The body continually betrays me. Just when I expected things to be healing, bruises and pustules and lumps are breaking out all over. I am a one-woman low-budget horror movie: Night of the Zombie Tetraplegic.
The left big toe, for a start, is rotting again, ingrowing, pus-filled. The podiatrist wants me back into the clinic so he can do more surgery. The porridge burn on the thigh, under the see-through dressings, has gone gangrenous green. “Totally healthy. Call me if it goes bright red,” pronounces my district nurse briskly.
The hip scar aches like bad teeth, despite the fact I have succumbed to co-codamol, which is down the painkiller scale from dihydrocodeine, and less likely to offend my inner control freak by making my head swim. And then at the colostomy site my tummy bulges, lopsided, my body out of alignment like a beaten-up teddy bear. Quite normal, I’m assured. Everyone says the same: give your body time; it’s been through a lot and it’s understandably mangled.
Now, to top it all, there has arrived a complicated bruise on the left buttock: unexplained, viciously tender, inescapable. Where did it come from? God knows; maybe some trauma in my pelvis from the fall or the operations. Maybe I nipped it on the wooden board while sliding from bed to wheelchair.
The bruise is bright yellow. Amid the yellow there is an extended white lump which moves under my fumbling fingers like a pea; like a ghostly, hard varicose vein. I have to sit on it every day. I try to alleviate the pressure, but nothing dulls the pain. And this is a critical worry, for if I compromise the skin where I sit I could get a pressure sore and be consigned to bed rest, unable to use a wheelchair until it heals.
The worst bit is I can’t see the bruise, even with mirrors; and everyone I show it to – lucky people – describes it to me differently. In exasperation, I hand my phone to my carer. “Photograph my bum,” I order her. “I can’t do that,” she cries, horrified. “Yes, you can,” I insist. “It’s not for Facebook; it’s not abuse. It’s essential to my care.” Because neither of us has a clue about iPhones, she shoots a video instead of taking a picture. Which is somehow darkly funny. And which is why, should I die tomorrow – and knowing my luck, anything’s possible – I want to put it on record for the managing editor that the startling buttock film on my company phone has a perfectly innocent explanation.
Sometimes it’s especially hard to come to terms with your fate. I’m not alone in this. As one paraplegic friend of mine, who had her accident more than a decade ago, tried to describe her daily slow-motion struggle: “I’m still left wondering if it’s all real or just some kind of protracted nightmare.”
Ah, there’s the rub. It’s both, isn’t it? To cheer me up by letting me spend money on him – smart child – my son drives me to a Highland dress outfitters in order to buy a new kilt for graduation. We have a happy few hours, browsing through a million tartans, because our family tartans are not particularly nice, until we find one he likes: muted, yet misty-mountain bright. Wrenched from tradition, tartan has become such fun: deregulated, demystified, with ridiculously corny accessories. You can get kilts in everything from cod Braveheart to pinstripe. Some of the sporrans are positively McBlackpool. How good it is to giggle and forget about the body for a bit.
04-20-2013, 11:25 AM
FPF, God didn't put the paralytics at the bottom of the food chain by accident. There's not a lot more humbling in this life than becoming your paralyzed body's bitch.
04-20-2013, 10:01 PM
Lord she is singing my song right now. Waiting for better health indeed.
04-22-2013, 02:54 AM
Melanie sure hit my life on the head with the select paragraphs below. She's one of those "easy to read" writers, that's why I like her so. I can relate with her broken femur. Mine's been broken completely in two since last August and it appears as though I'll go to my grave with it in this condition. Just pile it on. The orthopedist doesn't want to operate because I'm a SCI yet wants to see me in 6 months. I wonder why... what could possibly happen in the next 6 months that hasn't happened in the past 8? I'm sure the ends of the bone(s) are healed closed so can't "knit" themselves back together. This is like getting one of those girdlestone operations. I was shocked when I first learned they cut the head of the femur off (the ball part of the femur/hip) and let the damn bone just float around in your leg/hip. Oh well.
Once again, I digressed.
Most poignant is her pointing out that having a SCI is a full-time job, in and of itself. It's so true. We're forced to work as our own unpaid nurse and doctor. We spend so much time and effort caring for our half-dead corpse and are forced to tote it around with us wherever we go, whatever we do. And if we fail in our efforts, boy is there hell to pay. It never ends and if anyone has any crazy ideas, it does get worse with age. Much worse.
I can't help it, more digression. I'm up now at 2:50AM getting ready for a doctor appointment at 11:00AM. Gonna get another epidural steroid injection to see if I can get any relief from my mysterious neuro-pain. It's so much fun risking a spinal infection but pain will make ya do just about anything. I finished up in the bathroom an hour ago but will be back in there at least one more time to "make sure" and then to shower up. I'll do anything to prevent having the feared "accident", especially in public. I'm fairly confident (can ya ever be confident??? No!) I won't but it never leaves my mind. The price to pay in terms of embarrassment is so damn high, especially since I'm now reliant upon public transportation. And I'm so sick and tired of having to plan everything out to the nth degree. The days of carefree spontaneity ended the day I was injured with this incurable disaster. I could go on and on but won't... to save y'alls from my whining rants and because I still have so many things left to do before the short bus arrives here at around 9:00AM. All this yet my life is so boring, or as Melanie says "screamingly dull".
Six weeks since the femur fracture and I’ve suddenly realised that looking after myself has become a full-time job. A peculiar distancing has occurred between the bit that still works – the brain – and the other bit, the body, the lanky recalcitrant lump of a thing that doesn’t work, but is still attached to me and makes constant, high-maintenance demands.
The brain regards the body with resentfulness and weariness, like a non-maternal mother who desperately wants to go back to some high-powered post but is stuck at home with a fretful infant. The body is my prison, my dependency; a dead weight shackling my free spirit.
You know what’s worst? Life’s screamingly dull, that’s what. How boring my situation is; an existentialist, time-consuming grind of pill-popping, bag-emptying, pressure-relieving, pain-dodging, all the while smiling gratefully at kind people and repeating, “I’m fine, thanks.” There is no time for anything creative. Somehow I’m always busy waiting for the next chore. Waiting, if I’m honest, for better health.