Not Doing So Good

[tskushi26]

I just posted this blog, and could really use some feedback.:gloomy: Thanks.
http://lifeparalyzed.blogspot.com/2010/09/not-doing-so-good.html

I haven't been doing too well, for some time now. My physical health hasn't been the greatest, which I'm sure has played its part in my overall decline. As many of you know, from reading my blogs, or living with paralysis yourselves, I have to deal with a certain amount of medical issues, on a weekly basis, that I struggle with, greatly. Even after five years of being injured, I've still yet to come to terms with needing help with personal hygiene & bathroom issues. I've yet to find a way, to "just deal" with having another adult shower me, dress me, and feed me. Worst of all, is the need for a catheter, bowel regime and constant fear of incontinence. They all bother me just as much as they did when I first got hurt. I try my best to block it all out, but instead of getting easier, it's becoming increasingly more difficult. Part of the reason, may be because, as time goes on I've had to deal with more & more related health issues, that are just wearing me down. I've had countless UTIs (despite trying to hydrated, taking various medications & attempting to be as sterile as possible), most of which, I've tried to tough out, without antibiotics, because they often render my bowel regime useless, which is ultimately more upsetting&can cause skin breakdown. There are times though, when I'm just too sick to ignore and either land myself in the hospital, or force me to breakdown and ask for an antibiotic. Even that is a hassle, because half the time, the laboratories kick back my specimen, without culturing it, because they think it's contaminated. Apparently, I live with a pretty outrageous amount of bugs in my system, because even though we explain it's from a catheter, I've had more than one lab reject my samples. So then, I'm stuck with taking an antibiotic that may, or may not clear up the infection, and the wonderful stress, of worrying about accidents. This is all on top of the dozen or so pills I take on a daily basis, just to stay somewhat functioning (mostly bowel & bladder related, with a couple anti-depressant, anti-anxiety meds).


Yesterday, I spent all day at the hospital for a UTI. I just took an antibiotic called Leviquin, about three weeks ago, that obviously didn't work. They took blood 7 urine, gave me a ridiculously strong IV antibiotic& a prescription. I was in the ER for about seven hours (two of which, were just spent waiting for an ambulance ride back to my apartment). The whole time, I'm trying my best not to freak out, or have a panic attack, because my absolute worst fears & experiences all revolve around the hospital. I spent the first year & a half, after my accident living in Robert Wood Johnson ICU, Kessler rehab, ST. Barnabas ICU, Cheshire nursing home, Morristown Memorial hospital and then back to the nursing home. Despite having daily visitors, most of the time, the large majority (mostly at night) was spent painfully, and terrifyingly, alone. I can't even begin to describe the loneliness, fear and sadness that I experienced, most nights. At times, I was literally at the brink of death, most times, just overwhelmed with loss and fear. I doubt anyone, has pleasant hospital memories, however, being hospitalized and totally paralyzed, feels like hell on earth. You are 100% at the mercy of the hospital staff, especially when you can't even hit a call bell, reposition yourself, get a drink, change the tv channel, work the bed controls, pick up the phone, or any other small comfort, that the average person can do. Plus, thanks to HIPA, I end up having to re-explain that I'm paralyzed, almost every time someone besides my nurse, or doctor enters the room. Honestly, I rather have staff read my chart, than have to explain why I can't make a fist, or raise my arm, or any other stupid thing. Even when I have family, or friends with me, I feel scared and lonely. I just want to be home, and I'm dreading the time when they'll have to inevitably leave me behind. The few times people stayed overnight with me, I still knew they'd eventually have to leave. Plus, I felt horrible, because I knew how uncomfortable & exhausted they must have been, trying to comfort me. As crazy as it might seem, I couldn't even watch a tv show or movie about the hospital, without feeling panicked. Although, thankfully, I haven't had to stay over night in the hospital, since I've been home, the fear is always there. Horribly, in the end, with or without visitors, I often still feel alone.


Short of having a person climb into bed with me, it's hard for me not feel alone. I can't feel people holding my hand. I can't feel much of anything. Other people with paralysis and therapists have said stuff like,"You can still feel your head, neck and shoulders.You can learn to substitue affection to the areas you can feel" and/or "intimacy is mostly in the mind." For me, paralysis has been extremely isolating and I feel extremely deprived. Not only do I feel emotionally cut off (because most people have no clue what it's like), but physically, alone. I so often, feel like I just want to be held and be able to embrace the person back. Not that a hug would really solve anything, I feel such a void in my life. A big part of that emptiness, is not having a signifigant other. Family and friends can only do so much, and although I love them and am tremendously thankful for the people in my life, there is ahuge, gaping emptiness inside of me. I miss having that other half, to hold me and make me feel safe. It's a different type of love and affection, and it's been lacking in my life for a very long time now. Sometimes, I feel as though, I'd be stronger and feel as though I would have more purpose, if I had a husband in my life. At the end of the day, my friends& family, all have their own lives, and I feel completely lost and empty. Part of my problem, is that I honestly still love my ex (the person I was with, when I was hurt) and our break-up isn't something I've been able to get past. Mostly because, we both feel like we'd be together, if I were never hurt. All my dreams were ripped out from underneath me overnight, and being with him was one of those dreams. The events that followed my accident, made it impossible for our relationship to work, and although I have no way of knowing how my life (or our relationship) would've turned out, up until this point, the abruptness of how it all ended, makes it unbearably difficult to move forward.


As unbearable as it's been without him, I'm full of doubts within myself as well. I don't know that I'd have been able to be there for him, if our situations were reversed, and that's an ugly reality, I didn't want to admit to myself. You think that love should be enough, but the reality is, that each case is unique and you really can't judge anyone, unless you've been in their shoes. Part of me feels like, if he truly loved me, we'd somehow be together. Another part of me says, I'm not sure how I'd handle it myself (in his shoes or even now, in my position). I don't really know how I'd deal with having a romantic relationship, on top of all of this. There's so much of my life, I'd want to shield, or hide, that I couldn't. I only know what I had, and recognize, it wouldn't be the same. Regardless of who I'd be with, the thought of letting anyone into my life in that way, both terrifies me and leaves me feeling very skeptical. Why would anyone want to willingly choose, to take on all the hardships that come along with my life? I'm trying so hard to run away from them myself, so why would anyone welcome them? Plus, there's my overwhelming sense of guilt, that I could never contribute even a fraction of what that person could. Also, there's my want to be with someone that's able bodied, because otherwise, I feel as though, it's just another friendship. How can I expect someone else to want something I don't even want for myself? Part of me feels like a bad person, for not being able to see past all the physical, but it's so much of the physical, nurturing aspect of a relationship, that I feel so lacking and that I miss.


My failed relationship with my ex, is just one of many hugely important goals/dreams that I've struggled with since my accident. There's the career I worked so hard for, achieved, then lost. Then, there's the dreams of marriage and children, I've had since I was a little girl; on top of ordinary goals, like owning a home, playing an active role in helping family & friends and common milestones. For the past five and a half years, I've been all my friends accomplish the things I thought I'd have (and still desperately want). Every day, I see painful reminders of what I could've had, but ruined. It's not to say, I absolutely couldn't teach, get married, or even have children, in my condition. What most people fail to see, or understand, is that the aspects of' those dreams that I most looked forward to experiencing, would be gone. I can no longer do most of my favorite parts of my job, which include, the physical interaction with the materials, the hands on working & demonstration with the kids and the physical tasks of organizing, showing, managing and doing. Yes, the ideas are still there, but so much of what I loved, was making those ideas into reality. It's the kinesthetic, tactile sensations that I love most about art, and most of that is gone. Marriage and children, come with a ton of experiences that I'd completely miss out on. It kills me, to think I'll most likely never experience most of the things I've dreamed of my entire life. The compromises just seem so pale in comparison. I've looked forward to all the traditions of marriage, not just the piece of paper. I want to go try on wedding dresses in front of a million full length mirrors, WALK down the isle arm & arm with my dad, dance my wedding song with my husband, be carried through the threshold the night of my wedding, and make tons of love on my honeymoon. I've been dreaming, and wondering ever since I was a little girl, what it'd be like to be pregnant, feel my baby growing inside of me, having my husband rub my belly, decorate the nursery, go into labor, hold my baby in my arms, and breast feed. If I had a child, I looked forward to bathing it, feeding it, dressing it, rocking it to sleep and keeping it safe. I don't know that I could handle all the compromises and being a spectator. It breaks my heart, just thinking about it.


I've been struggling with all of these issues, since day one (June, 5, 2005). Instead of getting easier to cope, it's gotten harder and harder. Every year that passes, seems like a year lost, a dream gone forever. Every day that passes without a breakthrough, or a cure, it seems less hopeful. Every politician's decision or governmental set back to funding, seems like a punch to my face, like a personal attack. When people fight over research, it makes me feel so insignificant and worthless. How can people value cells, already predestined for the trash, more than me; a living, breathing, suffering, citizen? Why is there hardly any money or time to find a way to repair the spinal cord, but plenty of time and money, for war and exploration of other planets? Why is it ok for me to have to live this way? Why do so many people do foolish things, and/or even mean, horrible things, but get to spend full, healthy lives? It's getting to feel to be too much, too overwhelming, more hopeless, emptier, unbearable.


I've talked to my doctor about changing my anti-depressant medication, in hopes of helping me regain some ability to cope. I'm at the point where I feel as though nothing is taking off the edge, nothing is distracting enough. I feel awful, sad, lost, scared and lonely. I know I have people around me that worry,care about me and support me. Nothing is enough, and I feel helpless and horrible and don't want to feel this way. I'm skeptical of how much difference a pill will make, or even what talking about it can do. Nothing, short of fixing my spine can really serve as a solution, but I feel as though I've hit a wall. I feel worn out and at a loss for how to keep going forward, by just continuing what I've been doing up until now. I feel as though, I'm quickly unraveling, and it terrifies me. Asking for help scares me, but saying nothing scares me more. It's especially hard finding (or believing) anyone that really understands what I've beenthrough and what I'm going through. Many of my disabled friends/acquaintances are men, and I feel lack the ability to truly understand my perspective. I'm always concerned my honesty will upset the people that love me, and therefore hold a lot back. I'm at a point, where I feel I must speak up, to keep what sanity I have left. I don't even know how anyone can really help me. I know part of me, should just force myself to go forward, and do things, despite my lack of drive, or desire, but then I start to wonder who I'm really forcing myself for. Do I really want it for myself, deep down, or do I just not want to further disappoint myself & loved ones; but at what cost? My mind is currently just a chaotic mess of mixed emotions, sadness, frustration and fear and I'm desperate for some real solutions, if there are any.

[rdf]

That's very poignant, what you wrote. I wish I knew how to help. Communicating how you feel to friends and family is important at a time like this. I hope soon for you an answer.

[MarkB701]

Feedback to that piece? Well..... It's an amazing and poignant piece that leaves me feeling quite....helpless.

I'm used to feeling pretty physically helpless, living in a chair, but I at least feel I can be of more use than an AB person to other people going through tough things......

But, I feel like rdf on this one; I wish I knew how to help or what to say to you. But, I'm just not that good.


By the way, I love the art you paint. And you write using that same artistic gift. Your suffering adds so much more weight to the power of your writing. I wish everyone could read what you just wrote and take a moment to think about who they are and what they are doing...and what we as a society are doing to solve all this.

I almost am not going to hit Submit Reply on this one, because I don't think I really what i wrote was helpful or worthy.....but if I don't hit Submit, then you wont know that I read this and am really quite affected by it.

[Eileen]

Your post is heartbreakingly honest, and may I also say incredibly well written. I am sorry for your pain, and feel at a loss for words, although that has never stopped me yet....so here goes. I do think some of your dreams might be realized. You asked why someone would want to embrace the very thing you want to run away from, and I know from personal experience that in a healthy relationship the partner is supportive and loving, but also has a firm grasp on the fact that it is not them that is paralyzed. I think that is an important and often overlooked distinction. When an AB partner knows they can still play tennis, or climb a mountain if that is what they are into, it truly helps the relationship itself. I was in a 15 year relationship that ended badly, but I also know that the ending had little to do with my disability.
There are some things that can't be given back to you short of a cure, and for that a lot of grieving is not only normal, but necessary before moving on to "the next chapter." The next chapter, unfortunately, is all about finding out what you can do, what is possible, and while some of those options might not have been the ones of your dreams, it turns out they can be pretty damn good. There are several mothers on this group, and while they do not have some of the simple physical pleasures associated with picking their child up, or throwing a ball around, they are very good mothers, who love deeply and instill security and confidence in their children. Nothing that I write can give you back what you most long for, and for that I am very sorry. Your writing skills make me wonder if that is a path you might entertain persuing. Not because it is your only option, because it is not, it is just because you excel and the world needs good writers. Continue to write here please and share with us, because we do understand the losses that come with paralysis, even if we can't do much more than comiserate. People here "get it," deal with it themselves, and some have triumphed in areas they never even thought about when ablebodied. Thank you for articulating what so many of us have felt at one time or another.

[FasterNow]

You are doing great at sharing tskushi26. Having suffered my injury later in life has allowed me the luxury of reflecting on the things I experienced prior to injury. Your injury having occurred so early in life, yet at a time when all things were possible, has obviously taken a toll on your dreams. I hope you can find what you need to keep moving forward.

[infinity]

I tried to respond at your blog but .. uh, I got wordy and it was too long for the comment box lol. So, check your PMs.

[feisty]

I think that everyone can relate to atleast something... atleast ONE thing in what you wrote, and I have to commend you for your strength in putting it all out there. Some of the things you wrote were a better way of verbalizing things that I have felt too in the past, and I hope that you can soon get to a place where you can let go of some of the heavy things that are weighing you down.

xo

[tskushi26]

Thank you for your responses. I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered more of n annoyance, than a help. Partly because, I had an AB person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth could you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.

There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).

Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devoted Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.

The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way accident, drained me of confidence in the ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but *I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that it none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.

The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research.*

My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material, and pride, and have lost the ability to see the obvious order of priorities; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give advise to other disabled people. I just want to open people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me. * *

As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.

[tskushi26]

Ps- I posted an edited version of my last post, with my blog comments. I added a few things, and fixed a few typos. Anyhoo, thanks for reading.

[rose bud]

I have no words to say that could convey the emotions I feel about what you had to say. You are a gifted writer. I hope you feel better soon.

[Donnie]

Truly amazing! I think you should keep trying at the book. At a loss for words..

[quad79]

I think that everyone can relate to atleast something... atleast ONE thing in what you wrote, and I have to commend you for your strength in putting it all out there. Some of the things you wrote were a better way of verbalizing things that I have felt too in the past, and I hope that you can soon get to a place where you can let go of some of the heavy things that are weighing you down.

xo

Ditto.

Your health ailments will very well alter your view & acceptance of your injury. Check out the sticky on preventing/helping uti's, that's a start. I know when I'm sick & esp. because it is sci related, then the whole world is bleak & pointless.

May you find peace soon.

[tskushi26]

Thank you. I agree that things always seem worst when I'm sick. It's hopelessly frustrating, feeling like I'm being punished, on top of everything else. UTIs aside, these feelings have been building up for a long time now. Just the fact we have to do so much, just to stay relatively healthy/alive is exhausting & annoying. I hate having to take so many pills, always worry about my diet, and drink so much. It often feels like I'm working, just to stay alive, and for what? For a mediocre version of my life, full of sacrifices and compromises, that don't make me happy, and leave me feeling unsatisfied. It seems so crewel at times :( So often, I get angry at the thought that if I had had a living will, at the time of my accident, that people would've respected my choices (what I deem as a quality life) and let me go. Doctors couldn't fix the damage to my body, instead they patched me up and sentenced me to a life I doubt they'd want for themselves. Yes, I'm "alive", but I feel like a shell of the person I was. I feel like so much of "me" died that night, and I'm just stuck "living" inside a prison. No one will let me go either. Not, that I know what it is I'm exactly asking for. I struggle with the thought of giving up. I mean, what choices do I even have? I could stop eating, refuse my meds and water, but how much more suffering will that bring? How long would it take? Would people even honor my decision, or just force me to linger here, with machines and/or gadgets? Then of course, there's the moral/theological dilemma inside of me, that fears I'd only be punished more, if I gave up on life. It's horrible, but I've thought about these things, so many times. My hope for a cure gave me patience, the first couple of years, but I don't have that hope anymore. It's terrible feeling like I'm trapped. I can't help but feel like I'm going crazy, at times. Other times, I feel justified and logical.

[SharonD]

tskushi26...have you or are you able to visit the Keck Center? Hearing the updates from Dr Young are very uplifting and hopeful. You may benefit from a visit...just a thought.

Thank you for your writings, I learned a great deal from you.

[danielgr]

Your way of explaining this life as a SCI is right on the money. Wish there were people like you in office.
As I started reading your post I saw it was a long one and I usually don't read long post. Your words sucked me in and I'm so happy I read it. Thank you and hope you find light soon.

[LBUSH49]

Life , Mine is almost over I have a terminal LUNG DISEASE now on top of all my other problems , I've tried 3 times to take my life , but for some reason I'm still here suffering more and more every day , why I keep praying every night but it 's not working I've lost 60lbs. and look like hell . I often ask why me what did I do to deserve a life like this , over 20 operations now wearing a Urostomy bag 9 back operations , I haven't been able to post on this site in almost a year ,they wished me a happy Birthday on July 12th on the 13th I had a Gran Dmal seizure and got pneumonia and spent 2 days in ICU and 6 more in a regular room ,I'm tired of LIFE LBUSH49

[tskushi26]

Sharon- I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the forums.

I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself.
I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.

I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me.My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.

Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionary time line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.

I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).

[tskushi26]

LBush- I'm obviously the last person to try to cheer you up. All I know, is that you are the only person that knows your true limitations and all you've been through. Therefore, I feel like you're the only one that can determine what's worth struggling for. It makes me sad, to think about anyone suffering. I'm sure the people closest to you realize all that you've been through. I'm also certain, there're people in this online community that are much worst off than me, and yet somehow have much more strength & perseverance. I try to learn from those people, what I can. However, at the end of the day, you're the only one that has to live your life. I wish I had answers, for myself, and for others living with paralysis.

[Eileen]

tskushi,
I have been injured for 44 years, which I know seems like a dreadful eternity to you. Back then no one even talked about a cure, and there are times when I am reading and responding to posts here when I actually wonder how beneficial it is to relatively new injuries to keep saying the cure is right around the corner. I have been attacked before for saying this, but I honestly think that no one should put their life on hold for any reason, and that includes SCI. The intangible "cure is coming soon" seems to function almost as too much hope, too much longing, and becomes a stasis from which it is difficult to move on. I do believe we are closer to a cure than we have ever been, and if the damn conservative right would keep their hands off stem cell research we might be there even faster. Still, this is what you have in the moment, with all its agonies and disappointments. You taught, and it seems reasonable to me that you might be able to teach again in some capacity. Perhaps not as a full time job, but as a labor of love, and if it happened to bring in a few bucks even better. Mostly I think anytime we do anything that is our passion we essentially kick SCI in the teeth. It is a quiet statement of "you won't win everything." It also exposes us to different groups of people, different opportunities, and different ways of looking at the world. There are so many programs out there, underfunded, and desperately in need of someone with your skills. English as a second language tutor, writer, editor, art teacher (one doesn't have to be able to do to teach) and so on. I don't know, maybe this will seem absurdly polyannish to you. I hope not, however, because in the end we create our own universe, even with the boulders that make the path seem nearly impossible to traverse. In Buddhism there is a saying "even if a cloud obscures the mountain, the mountain is still there." You are still there, with all your intelligence, your capacity to give, and in doing so you may very well find yourself on the receiving line of some of the things you most desire.

[Kari in Pacific NW]

I cannot express how much your writing moved me. I've read five books written by people with SCIs--none of them were nearly as well written as your posts.

[pararich]

Thanks for your posts tskushi.
I hear you- that life is so difficult.
I will pray for your health and your outlook.

[Cherbears]

Your writing is alluring and makes us wonder about things even more. I met Joni not sure if you've heard of her but she was at my church and read her book in the 80's. Quite an inspiration she also does painting like you do. Hope you're feeling better soon.

[quad79]

I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills.

I hate losing this & sponteniety too.

[tskushi26]

Cherbears- Yes, I know about Joni. Her artwork is definitely amazing. It's not really my style, but she's certainly very gifted. I have her movie & her books. I had a difficult time watching the movie. It hit way to close to home. I can't really read other people's SCI books. I own Christopher Reeve's documentary & books as well. I admire Reeve's openness. The books just depress me. I feel like I'm reading about my own life, in so many respects. It doesn't really encourage me to know that other people are going through the same things I am, it just makes me sadder.
Joni is a bit too preachy for me. I struggle a lot with faith (in God in general). Plus, I'm not out to inspire people with disabilities. Most days, I can barely inspire myself, so I don't try to dish out coping advice much. Although, I believe faith in God would give me strength, it's not something you can force, and I just can't buy into the triumphalist attitude that most religions stress.
My art & my writing is almost always aimed at AB people. I mean, most of the people in the CC community live with paralysis every day, they don't need to read about from me. I like feedback, and to hear how other people have managed to deal with their own injuries, for years & years. There's also a ton of people here with an amazing amount of knowledge about current research. Plus, as sad as it is, it is also somewhat comforting to know that I'm not the only one living this way. I admire those people that have the strength to advocate & raise money, towards a cure. I try my best to be proactive, by educating AB people about paralysis. It's not much, but I hope I've made a tiny impact on the people I've touched (so to speak).

quad79- I find the only way to stay sane is to let the small things go, but it's difficult. There are a million little things I see everyday that irk me. No matter how well you direct people, it's just never the same as doing something yourself. The tiny, daily compromised build up, over time and really get to me sometimes. Plus, there's always those instances where you just want to grab what ever it is & just SHOW the person what you're talking about. Most people don't think about how important it is to be able to demonstrate behaviors, or experience things firsthand. There are just certain things that lack words to describe them. It's so frustrating!

[Fly_Pelican_Fly]

Christina, first of all - your writing is bloody fantabulously marvellous! You really must keep it up. So many things you have mentioned in this thread are right on the money. And as many posters have mentioned there is absolutely nothing I could say to make it all (or even 1%) better.

What I can say is that paralysis of our bodies results in a storage of "energy" - energy we would usually expend through physical activities. This energy needs to find another outlet or else it will manifest by amplifying our fears and anxieties (many of which existed before our injury) to an overwhelming degree - and from that point it is a viscious circle eating further away at our mental and physical wellbeing. Dont surpress this energy......but release it through creative channels - as you are doing with your writing. You cant paint some of the amazing stuff you have written (It's a shame as it would make an unbelievable billboard and would have most billionnaires reaching for their wallets to fix us all ;-)

Stay safe.
Fly Pelican Fly

[pararich]

quad79- I find the only way to stay sane is to let the small things go, but it's difficult. There are a million little things I see everyday that irk me. No matter how well you direct people, it's just never the same as doing something yourself. The tiny, daily compromised build up, over time and really get to me sometimes. Plus, there's always those instances where you just want to grab what ever it is & just SHOW the person what you're talking about. Most people don't think about how important it is to be able to demonstrate behaviors, or experience things firsthand. There are just certain things that lack words to describe them. It's so frustrating!

As others are saying, your expressions sure hit home. I especially related to what you said to quad 79 (above).
I was reluctant to bring up prayer in my other post. But, I felt inclined to pray about your situation. So, that's what I am doing. Maybe it will help you. It helps me to want good for someone else and ask for help from the one I believe in and look up to.

[tskushi26]

Thanks for all the positive vibes everyone :)

My doctor & I have a game plan to start weening me off the Effexor & begin taking Pristiq, for my depression. I know a pill won't be a magic solution, but I'm hoping it'll help bring me out of the deep hole, that I'm currently in. I don't expect to ever be my bubbly, old self, from before my accident, but it'd be nice to at least feel stable. I've done things I never thought I could do, since my accident (like my exhibits & tv stuff), so I know the potential is there. I've just been slowly slipping into my current state of mind, and it's to the point where I need some form of help, because flying solo, I'm only sinking deeper into misery. I'm hoping the pills will help, if it's only a little. I'm also waiting to hear back from my caseworker about possibly seeing a therapist.
Have any of you had experience with taking Pristiq? Right now my doctor is fighting with Medicaide to cover it, so I haven't started it yet.

[LBUSH49]

After having 9 back operations , both knees , both elbows , left shoulder , a bladder bypass operation ,Pneumonia 5 times and have shot blood clots into my lungs 4 times , now they tell me I have a terminal lung disease with no cure in sight , lifes a bitch !!!

[quad79]

After having 9 back operations , both knees , both elbows , left shoulder , a bladder bypass operation ,Pneumonia 5 times and have shot blood clots into my lungs 4 times , now they tell me I have a terminal lung disease with no cure in sight , lifes a bitch !!!

Oh damn. How frightening, how sad. Sorry.

[LindaT]

I've been following this thread and reading parts to my husband who is C3.
Very eloquent writing. Thank-you.