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Thread: Melanie Reid of The Times (UK)

  1. #101
    There is no point trying to measure suckiness - it is all relative.

  2. #102
    I'm a newbie here - I'm not SCI - I developed a really really rare form of RSD - a neurological disorder when i was in my teens and over the course of 6 months went from "normal AB" to no use in my legs and limited use of my arms. (in fact - admitted to hospital after losing the use of my arm (got some back with physio) and came out in a wheelchair). Over the years its worsened - I'm now 25, just graduated from uni, require 24 hour care etc and am currently living with my boyfriend at my mums whilst we fight the beauracry associated with getting our own place.

    I have been a lurker on here reading the Melanie Reid articles (thanks FPF) and just wanted to comment on a theme that has cropped up on here - working. I have worked incredibly hard to get a degree and got a 2.1. Since I have looked for jobs I have got interviews - but suddenly the interviewer who is incredibly positive on the phone cools as soon as they see me coming through the door with my disability menagerie (carer, electric wheelchair etc). I haven't been offered a job. Surprised? Not now.

    I live with severe pain which is only mildly controlled with heavy doses of oxycontin and ketamine but - despite that I'd LOVE to work part time to try and keep my mind engaged and off the pain. Yet, as someone mentioned here there is no support for people wanting to enter "professions" who have a disability - instead you are stuck in limbo - not able to work but, having attempted to train in an area I could work in with my disability it is much harder to get incapacity benefit. AGH!

    In the UK the "famous" wheelchair users that AB's can name are famous for their sporting prowess (e.g. Tani-Grey Thompson) *just my opinion from asking my AB friends) so I really hope that Melanie keeps working and in the public eye so that more companies can start to consider that wheelchair users are worth investing in. Fingers crossed.

    Thanks again for posting those articles.

    Life on wheels - cheaper than a life of shoes!!
    Life's what you make it

  3. #103
    Senior Member canuck's Avatar
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    Mar 2003
    BC Canada
    I think the point that cryptic is making is that it's ok to mourn your old life but there is a point where you have to get on with life. If you're 5-10 years post and still on the pity pot doing nothing more with life then mourning your old a/b life something is very wrong. "Stuff Happens" life should go on making the most of what you have left.

  4. #104
    Quote Originally Posted by frogga View Post
    you are stuck in limbo - not able to work but, having attempted to train in an area I could work in with my disability it is much harder to get incapacity benefit. AGH!

    ... I really hope that Melanie keeps working and in the public eye so that more companies can start to consider that wheelchair users are worth investing in. Fingers crossed.

    In a nutshell.

    The whole point of the welfare reforms is not to get disabled people back into work, but to get them off benefit. The new criteria: 'able to do some work' covers just about everyone not in a coma - but it leaves many severely disabled people in a Catch-22 - ineligible for benefit, but functionally unable to secure employment without the sort of support that just isn't available, or economically viable unless you have the brain of Stephen Hawking.

    Disabled people aren't any different to able-bodied people: the vast majority want to work. Indeed, not working is one of the most demoralising aspects of disability. When surveyed 8/10 incapacity benefit claimants said they hoped to get back to work, but this was twisted by government spokesmen into a claim that 8/10 claimants should be at work and not on benefit. With the drip-feed of fraudulent claimants regularly hitting the tabloid front pages extreme cases have been presented as typical, such that the public perception is that most 'disabled' people are just a bunch of free-loaders. Having softened up public opinion benefit cuts can be presented as a necessary correction of the 'dependency culture' rather than an attack on the most vulnerable members of society.

    My own, admittedly cynical, view is that Melanie Reid will be used as an example of what disabled people can achieve - without recognising that her experience as an established journalist is scarcely typical of that of most SCIs.
    Last edited by lifeonmars; 01-03-2011 at 10:41 AM. Reason: added paragraph

  5. #105

    latest articles....

    Snow is Non-Negotiable in a wheelchair

    The sound of snow padding on the Veluxes in the night used to be one of my most treasured things – the secret delight of life in a remote glen. We knew we would wake to a beauty that belonged, briefly, just to us and the animals. And even if we had to go to work that day, well, that was part of the fun: sweeping the snow off the pick-up, surfing bonnet-deep through the powdery drifts on the farm track – yeeha! – then heading into the city on roads as yet unploughed. How harmlessly arrogant we felt, once in the office, listening to the townies phoning in with excuses or moaning about getting stuck in suburbia in their useless fancy motors.

    That arrogance has been punctured in the most profound way by my new dependency. Now snow is a threat, a dangerous form of imprisonment. And the woman who once loved the physical challenge, the deeper the better, looks out at a winter wonderland and notes gloomily that, a) Nanook of the North didn’t need a district nurse to survive and, b) The only way I could get into the cab of a pick-up these days would be if someone wedged me on the prongs of a forklift.

    Last weekend, then, on my latest visit home from hospital, arrived the perfect storm. Snow fell hard overnight and we woke on Saturday not only to that, but to lifeless radiators and that most mournful of things, a stone-cold Aga. Plainly, the oil had run out. Captain Mainwaring, denying naturally he was in any way responsible for this, went into overdrive, leaving messages for oil distributors and plumbers; in between which came the call to say that, owing to the weather conditions, the carers couldn’t make it. The district nurse, meanwhile, told us she was stuck in another village. And I put the duvet over my head and wondered, variously, what else could go wrong and exactly why I was opposed to a nice bungalow in town. Or possibly in Spain.

    As I am learning fast, after you’ve been badly injured, you discover that there are many, many good people in the world. Among them is my local oil supplier, who sent a tanker within the hour, battling through treacherous conditions. Among them too are our plumbers, who struggled many miles down the A90 to discover that we hadn’t run out of oil, rather that the fire safety valve on the fuel line had failed. Reprieve for Captain Mainwaring and a warm house again. Meantime, my stepson went to fetch the district nurse in the 4x4, and once in the house she refused to leave until she had done the carers’ job as well, helping me to shower, dress and get up. For all these many kindnesses, thank you becomes an inadequate phrase.

    The next morning, as yet more snow thumped down, we set off for hospital as soon as we could. Another steep learning curve. Snow is totally non-negotiable if you are in a wheelchair. The small wheels at the front will not penetrate it; the back wheels spin when you exert force. You cannot push yourself through it and so must be pushed. Your footplate then acts as a snowplough, collecting a great drift over your trainers, round your ankles and up your trousers. And, as you discover the minute you get out of the car, when people clear pavements, they do not clear them to wheelchair width. Which effectively makes wheelchair-users completely housebound in this kind of winter weather, although I did hear of one spinal patient whose mates took him to the park and tipped him over so he could make snow angels.

    “What have you got on this week?” asked an old friend. “Just standing up,” I said. “Over and over and over again. It’s my job.” My gym routine at the moment is simple: arm weights and leg bike in the morning session; then in the afternoon, I perch on the edge of a bench, grasp the parallel bars and raise myself up and down to standing, each time trying to make the movement slower and more controlled. Once upright, I have very little conception of what’s happening – think baby giraffe – but I try to stay loose and balanced over feet I can’t really feel. I’m only truly aware that my lower legs these days burn constantly, as if in a deep-fat fryer; that my knees and ankles lock like stone statues (painfully so, especially at night), but I will just have to get on with it. The positive interpretation to put on all this, of course, is that the pain might be down to a return of sensation and the stiffness due to muscle ache. Plus my physiotherapist, Susan, cheered me up when she came back from holiday and rewarded me with a “Brilliant, Mel!” when she saw me stand, this being possibly the nicest thing she’s ever said to me. Either she’s getting soft, which is unlikely, or I am still making progress.

    On the firm advice of my doctors, this will be my last column until into the new year. First came David Allan, director of the spinal unit, playing bad cop, then my consultant, Mariel Purcell, playing good cop, to tell me they think I’m over-tired and should take a break from writing so I can concentrate on my rehabilitation. For once I am doing what I’m told. I will remain in hospital for every gym session over the Christmas period, and, weather permitting, go home on the non-gym days. The new year will bring my countdown to eventual discharge, so I must concentrate as hard as I can right now on myself. My wonderful support group of Times readers will understand, I’m sure, and be there for me in January. I wish you all a very happy Christmas and please, if you are swithering over whether to buy a mohair nose-warmer or rose-petal-stuffed underpants for the person who already has everything, then donate the money instead to The Times Spinal Charities Appeal. For if I’ve learnt one thing this year it is this: what matters this Christmas is love and health, not useless material stuff, nor whether your table decorations are fashionable.

  6. #106

    The Numbers Game

    The Numbers Game

    ‘I’ve been resorting to desperate measures to keep my FIM score – my Functional Independence Measure – rising’
    Once upon a time, in a former life, I was a senior newspaper executive, with the task of managing many people. Routinely, I was sent on courses to learn spectacular amounts of what the Americans would call BS but I should best refer to as cobblers. I became a world expert in specious acronyms.

    I excelled at setting my team the smartest of SMART objectives – specific, measurable, achievable, realistic and totally-bloody-time-wasting. I overdosed on management guff about how to assess performance, tick boxes, write mission statements, meet targets. And, most of all, I earned a PhD in how never, ever to use one crisp sentence where 500 words of nebulous waffle about real-time interfaces to progress the decision-making function database for sensitivity analysis of multi-attribute protocols would do; for fear of being the one who accuses the emperor of having no clothes.

    I will always be grateful for the experience, though, as I did find out the one-word secret of good management (of which more later). I discovered that I was more of an anarchist than a bureaucrat, and what I learnt about the sclerotic processes that clog up big organisations, replacing intelligent, individual decision-making, has stood me in good stead ever since.

    So I was prepared, in a way, for these many months as the victim of the health service’s FIM score. FIM stands for Functional Independence Measure (believe me, I can think of other things the F might stand for), which is a classic exercise in box-ticking – sorry, service delivery model – basically intended to manage long-stay hospital patients out of the door as rapidly as possible. My FIM has been stalking me since I arrived; and, try though I have, it looks like it has finally caught me up.

    It was invented, naturally, in the US about 30 years ago as part of the push to decrease healthcare costs, and is now used by the NHS for all patients requiring rehabilitation, be it from spinal injuries or strokes. As such, FIM is an occupational therapy tool to measure skills such as communication, dressing, bathing and eating. On a scale of one to seven, the FIM “decision tree” – don’t you just love this stuff? – indicates whether patients can carry out an activity independently, or how much help they need. For example, when it came to eating, immediately after my accident I was nil-by-mouth and couldn’t feed myself, so I scored one. Within a month I could manage with a bit of help and scored four. Now I can eat independently, although you wouldn’t want to take me anywhere posh, and I score seven. If, on the other hand, I were a grumpy old man who refused to make the effort to feed himself, declaring “My wife will do it for me” – you think I’m joking, don’t you? – I would score one.

    FIM scores range from 18 (comatose) to 126 (able-bodied). All patients in the spinal unit are subject to monthly goal-planning meetings, at which your score is the axe hanging over your head. The moment your FIM reaches a plateau, according to the rules, your rehab is over and, as they say in Glasgow, “you’re oot”. My big beef with FIM – and not with the charming, terrier-like Fiona, the discharge coordinator who ticks the boxes – is that it doesn’t take into account physical progress, just the ability to self-care. Like all lumpen bureaucracy, it serves the system more than the individual.

    When I came into the unit I was given a predicted LOS (Length of Stay; do keep up) and was due for discharge last September. This in effect means that, ever since the autumn, I’ve been spoiling the spinal unit’s discharge targets. And Scottish Government Health Secretaries like their targets; in fact, I suspect Nicola Sturgeon probably has 98 per cent tattooed on her left breast.

    Thus I’ve been resorting to all kinds of desperate measures, up to bribery, guile and intimidation, to keep my FIM rising and allow me to stay in the gym for as long as possible. Ha! You thought those Christmas presents were because I liked you, girls? I’ve ditched bras and trainers (too difficult to put on), transferred from wheelchairs onto any surface that earns a FIM point, battled for hours to put my trousers on by myself (and caused chaos when I nearly fell out of bed). I’ve tried everything. But rules is rules. My FIM score has reached 100, which is pretty damn high for a tetraplegic – funny the things you never imagined you’d boast about – but is unlikely to go higher without a miracle; and I anticipate leaving the unit in March, after 11 months.

    I would like, as a parting shot at FIM, to quote one major American study on it: “Each person’s potential for recovery should never be limited to a set of numbers.” Quite. (Anyway, I am informed that FIM is shortly to be replaced by SCIM – spinal cord independence measure – which is apparently less clunky and allows more patient feedback. I’m saying nothing.)

    Every minute in the gym over the next couple of months, therefore, is deeply precious, especially sessions on the walking machine. That’s why I’m cross with bureaucracy, because I fainted on the Lokomat last week – all because the pharmacy had not been able to supply my heart drug in liquid form for days; and a protocol, another insane bloody protocol, forbade any medical staff from cutting the 4mg pill form of the drug into half for my 2mg dose.

    Anyway the faint was almost worth it to see Susan move so fast – hobbits have not run like that since they had to escape Mordor. I started to go, then everything went white and I heard celestial voices. The only way I knew I wasn’t in heaven, as the luminescence cleared, was my head on Susan’s shoulder and the unexpected sight of Willie the physio holding my legs up in the air in front of me. Dangerous display of resourcefulness, if you ask me. And incidentally, that’s how to save yourself a fortune on Edward de Bono books. The one-word secret to good management? Recognition. Give it freely to your staff and they’ll think for themselves.

  7. #107

    Vacuum Packed

    Vacuum Packed

    Vacuum-packed. That’s the expression which one of my new-found friends uses to describe the daily curse of waking up with a spinal-cord injury. Every morning, you are that classy lump of meat (not just any old sirloin, but M&S sirloin), perfectly shrink-wrapped on a tray. Fat-trimmed, blue-veined, artfully arranged; even beautiful, with that wistful grace that paralysis brings to limbs – but utterly, utterly trapped. That’s us in the supermarket trolley, sealed tight behind plastic, screaming silently for release. No matter how supple and mobile you felt when you fell asleep the night before, every morning you must start all over again, fighting your way out of your prison.

    It’s actually impossible to put into words just how feeble you feel on waking. You try to stir, to stretch, like normal people do, but you are invisibly encased. There is no sharp knife that will free you, no giant miracle Sabatier. There’s only sheer willpower: firstly to raise your head and neck from the pillows, then the huge effort to get onto your elbows; then, shoulders and abdomen pinned by a thousand Lilliputian ties, you persuade your elbows to straighten and inch your way to a sitting position.

    Your hands are set into rigid claws – less eagle, more elderly hen. Your spasms wrack you from middle finger to big toe. Only by lunchtime, after a laborious amount of stretching and numerous transfers from bed to wheelchair to physiotherapist’s plinth, and half an hour on the leg bike in the gym, does your body start to feel that it’s back to where it was the night before. I have fantasies about a magic variety of WD40, which I can use to loosen my body like an antique lock or a rusted hinge, but so far, sadly, B&Q does not stock it.

    That’s why, in truth, mornings remain the darkest time of all, when depression slinks around your bed and you have to summon every ounce of inner strength to rev up your spirits. That’s why sometimes you hate the bouncy nurses who come in, full of the joys, and pitilessly dump what you need – your breakfast, your clothes – just out of easy reach. That’s their job. To make you try harder. Even after ten months here, how easy it would be just to give in, lie back on the pillows and let your tears quietly trickle into your ears. They tried to make me go to rehab and I said no, no, no. How tempting to stop fighting.

    Oh yes, you felt so brave the night before: you boasted about the day’s tiny achievements over the phone to those who need to hear such news; you laughed, you made plans. Now everything hurts; the Brufen is out of your system; you are as weak as the weakest. I remember, in my morphine-filled days in the high-dependency ward, how I believed there was a dark shape, like an animal, darting around low down in my peripheral vision. I suspect it lives under all our beds still.

    This is the long-term tough reality of spinal-cord injury. My friend who used the vacuum-packed expression is a Times reader who damaged her neck falling off her horse out hunting. Three years down the road and walking again, hesitantly and with a stick, she still has to fight the daily morning horrors of getting moving again. So don’t any able-bodied person ever dare assume that paralysed people feel no pain; that we merely are inconvenienced by floppy legs and an inability to walk; or that we can walk happily with a bit of a limp. From the lifelong doses of painkillers for nerve pain to endless grotty complications from bowel and bladder paralysis, nothing could be further from the truth.

    I tell you all this, not from self-pity, but on behalf of the entire shrink-wrapped community who need more people to understand the struggle that never goes away. Sometimes, on the darker mornings, I decide the only person with any real humanity in the whole wide world is the sweet young Czech lad, the ward housekeeper, who brings the tea trolley and always makes sure my mug is within easy reach by my bedside.

    On a cheerier note, my physiotherapist Susan and I are becoming like an old married couple: we can tell from each other’s faces what kind of mood we’re in when we meet in the morning. I know she can gauge my blood pressure and fainting potential merely from the colour of my face; I can tell when she’s distracted, juggling patients like spinning plates. But sadly, even though I’ve asked her, she’s getting married to someone else this summer.

    Intensive work on the Lokomat walking machine is continuing to wake up my legs, but agonisingly slowly. Last week Susan and Willie Stewart – expert on the machine and, more importantly, physiotherapy’s king of bad jokes – together discovered I was inadvertently cheating by putting too much weight through my arms onto the handrails. So I was ordered to take my hands off the rails and keep going on the treadmill – plonkety-plonk, toes turned-out, Alpine goatherd-style. This made the whole thing immediately ten times more difficult. Think giant infant bouncing helplessly in baby-walker. Think Wallace & Gromit and The Wrong Trousers. I found myself grunting with the huge effort of each stride, moving with the robot legs, willing my hips to flex, my thighs to lift and my knees to bend. “Serena Williams,” Willie said. “That’s who you sound like.”

    Well, I imagine it’s hard work winning Wimbledon, too. If I relaxed my concentration even for a second, my feet would drag and the treadmill would swish to a halt, silently rebuking me in a very Swiss sort of way for my inefficiency. And when I finished that first hands-free session I collapsed onto a bench in the gym, arms crucifix fashion, went out like a light and slept for an hour and 20 minutes while the place went like a fair around me. “You looked,” said Susan, not entirely unsympathetically when she woke me at 4pm, “like the prison guard in Silence of the Lambs after Hannibal Lecter ate his face off.”

  8. #108

    The highs and lows of sit-skiing

    The highs and lows of sit-skiing

    Poised at the top of the piste, old memories blow delicious and icy in my face. Oh, to push off and gather speed, to swoop down the snow… This time, of course, it’s different; this time, I’m trussed like a turkey on a sit-ski, with the stalwart Andy snowploughing behind, steering me. It’s still fast and furious, but I’m inside a sleeping bag wedged in a bucket seat on two skis, with a pram handle on the back and – guess what? – I am that disabled skier whom we’ve all watched idly from the chairlift, whom we’ve all patronised with a, “Wow, isn’t it amazing what they can do?”

    Well, it is amazing actually. Disability Snowsport UK, the skiers’ and boarders’ charity, does a fabulous job, allowing people like me either to return to the slopes or sample them for the first time. Thanks to its team, and to the dedicated physiotherapist ski-bums from my spinal unit, I am lucky to be back doing what I never thought would be accessible to me again.

    Why, then, do I feel so ambivalent? So much is old; so much is new. So much feels intensely bittersweet, evoking 25-odd years of rackety good times in the Alps. Nothing has changed, but everything has. This is the first time I have either worn a helmet to ski – a helmet, for heaven’s sake! – or skied indoors. We’re at the Xscape centre near Glasgow, where you have the weird sensation of being a child playing inside a giant fridge. No sky, no daylight, just smoky chilled air and the familiar clatter of the Poma tows and the shriek of snowboarders thumping onto their backsides and obstructing the skiers. (Nothing new there, then.)

    What is difficult is the crushing passivity of it all. The helplessness, the dependency on the wonderful volunteers. And then, suddenly, there’s an unexpected problem: my body temperature. I feel wretchedly cold. How can I possibly be affected this much? Despite the layers of clothing and gloves I’m wearing, within four runs my teeth are chittering and my hands are set rigid – unable to grip the poles-on-skis which Andy wants me to use so I can turn by myself. I chuck in the towel. “I’d l-l-l-l-like to f-f-f-finish now, t-t-t-thanks very much,” I whimper.

    The reason I’m freezing is because, unknown to me, I’m soaking from the waist down in my own pee. As I was being manhandled into the sleeping bag and the sit-ski, my catheter became disconnected at my hip. Just one of those things that happens when you’re paralysed and lack normal skin sensation – but it means that for at least two hours I have been gently piddling all over myself, the sleeping bag, the skis, the slope; and then, still gloriously oblivious, my wheelchair and the minibus. All I can say is, fellow Xscape skiers, beware the yellow snow; it’s where the tetraplegics have been. And fellow patients, beware the third seat back on the right in the minibus; it’s been cleaned but it might still be damp. “Never mind, Mum,” said my ever cheerful son, who came to give moral support and show off his new salopettes. “Could have been worse. Could have been poo.” And he’s right. As I sob in the shower, back at the unit, I have a sudden flashback to Stuart the soldier, my former fellow patient, calling triumphantly across the gym, “Susaaaaan! Ah’ve pished masel’!” when the same thing happened to him. Black humour really is the only way to go.

    And don’t let me put anyone off adaptive skiing. I expect it is common, when returning to a sport one did to a fairly advanced level as an able-bodied person, to struggle initially with the psychology of accepting one’s changed circumstances. Especially if, like me, you’re still in denial about the extent of your handicap. I fully anticipate having the same mixed feelings if, one day, I get back on a horse courtesy of Riding for the Disabled. Once over the mental moguls, and in possession of dry trousers, I’m sure sit-skiing is fantastic.

    After my first steps on a walking frame, as I described last week, there was a low to follow. There always is. I expected it. Snakes and ladders, I reminded myself. The enormous effort I am expending to make my lower body move is impacting hard upon the less paralysed upper body. My shoulders, arms and hands are tighter, weaker and more painful; sometimes I feel the spasms in my left hand will break my own fingers. My terror is that I’m becoming more paralysed. Leslie, the upper limb guru, tells me not to worry; that this can happen when “incomplete” spinal cord patients start to walk, as the weight-bearing and shortage of core strength puts so much more strain on their arms. She tells me I just have to work harder at stretching and easing my upper body.

    Everyone is trying so hard to help me. Daily hand therapy, therefore, consists of Leslie digging deliciously at the gnarly knots in my shoulder and neck muscles, and massaging the numb, steel hawsers in my forearms. Susan, meanwhile, has revealed another skill with which to torture me: acupuncture. In what is a completely new experience for me, she has been tapping needles in from my neck to my thumb. Both therapies give me temporary blissful release and help me relax, but the minute I lift myself again, the tension in the arms returns. And my “walking” shows little improvement, though I should know by now that my progress, because of the nature of my injury, is to be measured in months, not days or weeks.

    Every weekend now is spent at home and I have just passed another landmark: an entire Friday night to Sunday passed without once bursting into tears of self-pity or frustration. Not bad for one of the world’s great weepers. There were two other big firsts: I managed to put logs on the wood-burner; and, even better, Saturday night I put myself to bed in an empty house. Transferred from wheelchair, clothes and shoes off, pillow behind my back, duvet over – all flying solo. No supervision, no family, no friends “just in case”. That’s an achievement to cancel out the phantom piddling.

  9. #109
    For those of you that dont know, Melanie will be involved in the BBC Lifeline appeal for Spinal Research (UK) which is due to be screened February 20th.

  10. #110
    Thanks FPF, I especially liked her descriptions of getting through the snow.

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