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Thread: The basis for all the negativity

  1. #81
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by betheny
    Lynnifer-

    I used your quotes on hope in a u2fp newsletter. Just credited it to "a Canadian friend that has been paralyzed 20 years."

    Hope it is OK, I couldn't resist. Your post moved me so much. It also got me over a writer's block I was having with the newsletter.
    That's great Betheny! Thanks!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  2. #82
    Senior Member Scorpion's Avatar
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    Quote Originally Posted by Curt Leatherbee
    Yes, I use to donate $5000.00 each year to the miami project, thats one reason I lost so much motivation the past 6 or 7 years was I felt that money was not very well spent.
    Very cool.

    Maybe something like ChinaSCINet will be something you'll feel better about donating too?

  3. #83
    Yes I would feel very good about donating to the Chinascinet, I fully trust Dr. Young and believe he will make the right decisions along with the other people involved in this project.

  4. #84
    Quote Originally Posted by lynnifer View Post
    great post, dr young. I believe i had the same pm from the same person so i'd like to respond as well.

    I was paralyzed in 1985 - the same year that the miami project started. I even remember a doctor in emerge telling me that there might be a cure in five years because of this place. A little blip on the radar screen, but i never forgot it, i wanted to hold on to whatever hope someone was giving - it's human nature to crave survival. Every other doctor, nurse, ot, pt and everyone else i ran into for the next three months prepared me to live in a wheelchair. That was the end of it - get over it and get on with your life. I was released on my 13th birthday. I even remember putting sting on the car radio, much to my older parents chagrin, and gazing at trees and distantly familiar things on the one hour ride home. I was silent but in awe, i had made it but what did my future hold? In my parents' eyes, what the doctor said was equivalent to god ... So after 3 more months of missing some school to attend therapy in a pool, lifting weights but none of it really went anywhere ... We accepted that i would never walk again. In fact, the last day of my therapy was the day that the shuttle challanger exploded and i was in grade 8, but i digress. Just last year, my sister said that it was great all the things that i've done with my life - but i've never accepted living in this chair and it was quite obvious. Perhaps it was that 10 second voice of hope from a nameless, faceless, probably specialist, by now, that i met in the er.

    Enough about me - twenty years ago, the internet didn't exist as we know it today. That's one huge advantage we have on our side. Scientists' information, courtesy of dr young and some very studious posters (who are much appreciated by the way), allows us to pick and choose what we think are the smartest avenues of research. All this information right at our finger tips!

    Twenty years ago, no one in my rehab was hooking people up to electrical stimulation. Twenty years ago, no one even thought to stand me up and keep me doing it so i wouldn't have bone loss. Twenty years ago, no one told me to take special care of my shoulders. Twenty years ago, no one even mentioned that i might have arthritis early (hot damn my right hand and wrist hurts this week!). The only advice given was watch your skin and watch your weight.

    Upon being released back into the remnants of my life, my school had to make arrangements to install a ramp and wheelchair accessible washroom. The board wanted to put me in a special school in a town 30 minutes away - can you imagine? My mind is alright, it's just my legs that don't work, but i would go to school with children drooling and in a vegetative state? The school board's transportation refused to take me to and from school or have anything to do with me. School boards being what they are - distant decision makers with no dealings with the actual children they affect (i never met any of them) ... The small town school decided to build a ramp and change a washroom so i could graduate with my friends (this was also after several hours, days of my mother being on the phone tearing a strip into people). A local car dealership who also ran the busing company, hired my mother as a driver and lent us a car to take me back and forth - screw the school board! Farmers stick together. Several years later, that school principal who was also integral in getting me back with my friends and into high school, died, and i went and paid my respects to that man and the other principal as well who did something and made a positive change in my life, as well as countless others, just so that i could graduate from the same schools as my siblings and father and so many other spences had done.

    I'm getting way off base here and perhaps taking a lesson from bob (kidding!)

    but my point is, that being in a wheelchair was like being lost in a world of unfamiliarity. I couldn't go anywhere without dad popping me up a curb or my brother and his friend carrying me up stairs to go see the dentist the one and only time i got to go because it was such a hassle and i almost took up the whole waiting area. It was a staring contest and it was the most abuse my self esteem, already broken, at 13 could take. My brother and his friends would take me to the movies to get me out of the house (besides school) and i even had to sit in the aisle, on a downward angle with the brakes on and my neck cranked up, while person after person tripped over me and spilled popcorn and pop on me and giggled in the dark.

    You guys today don't know how lucky you have it. Ramps, automatic doors, a flat space at the theatre at the front or back or halfway down. (unheard of i tell you twenty years ago). Expected accessibility at malls, grocery stores, banks. Access to vehicles that can be driven by us. Employment. School attendance. Just 17 years ago the two universities i went to look at in london and windsor - neither had a wheelchair accessible washroom in them! For gawds' sake people!

    And hope - not just a 10 second blip on any fricking radar. There's a reason i put the word hope in blood red, but we'll come back to that.

    I found the internet in 1997, when i was out on my own and working and could afford to buy a computer. What do you think was the first thing i typed into a search engine? Transverse myelitis. I never spoke it outloud but what i was thinking was that there was a cure somewhere shortly and surely i was just going to miss out on it. I found the transverse myelitis internet club online. For the first time, i had read the words 'can it be cured?' from someone else. That got my attention. I was hungry for what seemed like taboo knowledge.

    In 1999 i started at the police station. My first day. Lunch break. Surrounded by trained killers (that's all i could think!) on either side of me. In my mind, i could feel the coldness coming from their holstered guns! I'm extremely quiet and nibbling at my lunch thinking, 'could they have sat any closer, sheesh!?' in retrospect they were probably thinking, 'have we hired a retard now?' some gave me harsh looks, some were smiling and saying hello. The fat one on my left blurted out, "so what happened to you?" the athletic, more seasoned and good looking officer on my right sets down his food and declares, "awwww terry, did you have to? I'm sorry for his behaviour ... Terry, you idiot!" in wide eyed amazement, i recalled in short order that i had a back pain, fell and thirty seconds later i was paralyzed. Some unheardof virus, no cause or no cure. "unacceptable!" terry declared. For the rest of that ten hour shift, he asked more questions and regaled stories of documentaries he had seen, declaring my situation, "bullshit!"

    sadly enough, that was my first run-in with an ab 15yrs later who said the wordunacceptable to paralysis. He takes credit for 'firing up my ass' as he puts it, for the hope i have today. I poked around some more on the internet. Not long after, i discovered carecure and the floodgates of hope really opened.

    I don't need to list the reasons for hope - they're all around these pages and yours for the printing off, following up on and seeking out. I just wanted to show you from my own personal experience the reason for hope. I have gone from old ladies, relatives and strangers saying, "oh you poor dear, the rest of your life in that thing - i wish it was me and not you," to "oh i saw a documentary the other day and thought of you."

    you have access to so much information and equipment now that it is mind boggling. If you're one of the lucky ones and it sounds like you are, you can afford it and utilize it. There are three high profile doctors working on this - a bright scientist of the year according to a recent magazine profiling dr young, a 20/20 special report with dr keirstead and stem cells that millions of households saw and then of course, is superman's doctor, dr mcdonald who was never far behind in any mention of christopher reeve.

    Short answer:
    Do i think there's hope? Yes. I really do. For you. For the other newly injured ones. Most definately. I can say with full faith that i guarantee it.

    I will come back to hope now. There will be deaths, several, before this is finished. Some will succumb to infections from pressure sores (probably me), some will die of pneumonia, maybe others will die of other accidents or illnesses - i know of 3, two from cancer and now queen. I just think in my mind of the thousands that have died - without hope. Not knowing the internet, not knowing that every part of the world had doctors working on this, not knowing what lies on the horizon and that people cared - that knowledge alone is comforting! The best advice i can give is don't let yourself become one of those. Take care of yourself. Keep your body limber and strong. Stand. Do that pool therapy. Every night when i go to bed, even 21yrs later, i have a thing that i do - i try and wiggle my toes, move my legs every night. I have never given up.

    every one of us that exists today - and goes out to school, shopping or working, living and breathing, is aiding in a cure. We are out there and being seen and a constant reminder that there is a medical mystery that needs to be solved. Bob from florida said he hasn't lifted one finger for a cure in a post recently - wrong. He has been out in public, doing something, and somewhere someone wondered why he couldn't walk - a child - a future scientist, a student - a future rehab nurse. The possibilities are endless. We are a question without a current answer, but many people are working on it. I say we continue to unite and be seen, we continue to raise funds and send them to where we see the most hope. This can be done individually or as a group. Don't give up hope though. Never give up hope, or you're already dead.

    This was a very long story and i'm sorry as such, but it was in my telling that i went from, 'sorry about your luck kid,' to 'oh my gawd this may actually happen!' can't you see the hope? If i can ...

    I leave you with a quote from one of my favourite movies, the shawshank redemption, that reminds me whenever i even hear the actual word hope:

    "hope is a good thing. Maybe the best of things. And a good thing never dies."

    it's now sunday. Relax, spend some time with family or friends. Forget about the chair and immerse yourself with people who really care about you and don't see the chair - they see you - they really do exist i assure you. Determine your future. Think about what i wrote. Take care of your body. This isn't over, not by a long shot, because we hope.

    (hope i've helped and not wasted a huge amount of server space!)

    wow...........................
    Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

  5. #85
    Great thread with incredible posts, I will share with my nay saying colleagues.
    “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005

  6. #86
    I'm very glad this thread was pulled forward again, very inspiring!
    Thanks, Jhope!

  7. #87
    Thanks for pulling that out of the past, jhope. It is amazing, isn't it? I remember the goosebumps the first time I read it. Great that it is still working on new readers, all this time later.

    You remind me of myself. I couldn't read CareCure the 1st year I was injured, it was all too real, too grim. When I got around to dealing with the fact that this was my life, I was starved for information. I read CC for DAYS.

    I guess you're there now. As I told you, it's a terribly difficult time. It really DOES get better. I promise.

    Hang tough.

  8. #88
    I read a bunch of lynnifer's posts. The pure emotional honesty that flows from her soul is awe inspiring. I felt her words shake my very foundation. I am a big fan. She is a naturally talented writer. The book that she hasn't written is a best seller.
    Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

  9. #89
    And thanks Betheny - Lynnifer isn't the only inspiring voice in the thread

  10. #90
    Quote Originally Posted by topperf View Post
    And thanks Betheny - Lynnifer isn't the only inspiring voice in the thread
    I agree!!

    Paolo

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