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Thread: Acute spinal cord injury experiences

  1. #21
    Senior Member dogger's Avatar
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    Big Sister , i am a C5/6 quad , who walks [ i have never owned a wheelchair . up until 3 months post i was told if i was lucky i may be able to use a manual chair , drive an adapted car etc . i live by myself and own/run a 20,000 acre sheep station . i am still getting small amounts of sensation return . i was 12 years post yesterday .

    thank you
    dogger

    every day i wake up is a good one .

  2. #22
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    hi dogger
    xmas 2002 i was n a car accident resulting in a c6 c7 incomplete sci.i'm now 3mnths post and have return to t-12. i feel my legs. would love to talk to u. by the way, i bruised my cord. plz reply or email me at spinderellanov@hotmail.com. any other walking quads plzzz get in touch w/ me.. ty
    Originally posted by dogger:

    Big Sister , i am a C5/6 quad , who walks [ i have never owned a wheelchair . up until 3 months post i was told if i was lucky i may be able to use a manual chair , drive an adapted car etc . i live by myself and own/run a 20,000 acre sheep station . i am still getting small amounts of sensation return . i was 12 years post yesterday .

    thank you
    dogger

    every day i wake up is a good one .

  3. #23
    Guest
    Thank you all for giving me hope that the doctors understandably fail to give. Your stories are truly inspirational regardless of the outcome.

    It is now sixteen days since my little brother was in his accident. There is still no feeling in his legs. My family remains hopeful that he will recovery fully. I share your stories with them.

    Dogger, I am particularly interested in your story. It is truly a miraculous story you tell. Thank you for sharing it. There are others who have shared stories that give hope to those experiencing acute spinal cord injuries.

    Any other relevant information anyone can give would be greatly appreciated.

    Thank you all and God Bless.

  4. #24
    On March 31st (same as Dogger) 1999, my 18-year-old daughter was driving to school. She stopped to pick up a friend, which she felt made her late for school. She decided to pass a slow-moving van, and lost control of the car when she went back into her lane. She injured her spine at T11/T12 plus other broken bones. Her friend scraped her forehead and went back to school that afternoon. Brianna didn't go back until June 6th, for her graduation.

    She was airlifted to the University of Michigan in Ann Arbor, a model SCI center. The neurosurgeon on call happens to be one of the best around. He examined her and told us that her break was one of the worst he had ever seen. He told us then that she was paralyzed from the waist down, and that she would probably never recover any function or sensation.

    It's been four years now. He was right. I don't mean to sound bleak, but you must also know that sometimes the doctors are right. Hope is a wonderful thing, but I believe that as far as spinal injuries are concerned...it's mostly luck.

    I wish you, Big Sister 32, and your brother all the luck in the world.

    Vicky

  5. #25
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    Its nice (??) to hear a similar story.

    I don't know about you, but sometimes I wonder if it could happen again.

    email me if you'd like at pparnell@aol.com

  6. #26
    Junior Member wolflarson's Avatar
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    This is a first-person perspective based on my experiences...bottom-line is get counselling early for spouses that are affected by an SCI. Hope it's useful to someone out there.

    ===

    Has it really been three years already? Three years of toil and struggle to reclaim what remains of my former life. At times it seems like it was only yesterday that found me walking down a stony path in the forest next to our new house, my children in tow, lock step behind me, moaning about sore legs and feet. Me the drill sergeant trying to muster up the troops for the long trek through the woods to the promised picnic site, the troops being two battle-weary girls under four years of age beseeching me for their lunch.
    A few short weeks later and there I was lying in the hospital bed, retracing in my mind every one of my steps in the darkness a thousand times, wondering how I had been so careless as to fall off an eighty-foot cliff at night. I had hiked that trail more than a dozen times, both in the day and at night, so mostly I was in bewilderment at my stupidity even with the morphine drip coursing through my veins.

    I remember the intern saying something about a fracture/dislocate at T-11, spinal fusion, rods, squished spinal cord. Too much for me to absorb so I thought of my wife and kids. They would be with me still. We could still live together, hug each other, laugh together, console one another. Couldn't we?

    Where were they? I wish they were here now. And then they were, running all over the room, asking a million questions, jumping on the bed, looking out the window, asking if they could eat my leftover food. I was in awe. To the kids, this was all a temporary respite from day-to-day life. Dad would be out in a matter of days, running with them, throwing them over his shoulder so they could ride high, wrestling with them. All would be back to normal.
    Then a few days after, I was lying in the hospital bed alone, staring intermittently out the window into the park below. It was a sunny day in late December and children were clambering all over the swings. I glanced back down at my legs as I had forty times in the last hour. They were still red and dormant, glistening a little but when I reached down to touch them, they belonged to someone else. How strange. How will I ever get used to that?

    Over the last three years, that notion has been put to the test many times and each time an inch of progress was made somehow.
    Prior to my injury, I lived anything but a sedentary lifestyle. I traveled often for business, exercised regularly and loved hiking, camping and the great outdoors. Immediately following my injury my thoughts revolved around all the things that I could no longer do. Like my new mountain bike sitting in the garage, waiting silently to be ridden.
    Looking back now, lying in that hospital bed after my operation with Christmas a mere week and a half away was the hardest time of my life. While many tough roads lay ahead including some that I could never have imagined needing to travel, the first few weeks of realization were by far the hardest.

    To cope, I thought constantly of my wife and kids. I tried to focus on the things we could still do together, the experiences we could still have. It was hard to envision but I had to try and dwell on the positives or I could feel myself sinking into depths of despair. I thought about the fact that I was alive. The miracle of it. Falling such a distance into a ravine of rocks and logs and surviving. I thought about brain injuries and reveled in the fact that mine was still intact. (This is a matter of debate in some quarters though!)

    I went at my rehab with a vengeance, starting it a few short days after my surgery. The sooner, the better. I wanted to get out of the hospital and home to my wife and kids. Back to work running my small business. In short, I wanted my old life back. As much of it as I could still have. I was home for a few days over Christmas and had another subdued stay home over New Years. I remember having a hard time adjusting to my perceived inactivity. All around me, people were ambling about getting themselves drinks or food, cleaning up, preparing meals etc. I just sat there and watched them all like a bump on a log. For someone used to hyperactivity as a normal course of affairs, this kind of inactivity was hard to take.
    About three months after my accident, I was discharged. Out of rehab and back to the real world from whence I had come. I had been coming home every Friday starting a couple of weeks after the accident. On Sundays, my wife and kids would bring me back. This was the worst time for me - to see them all walk out the door of my room, listening to the excited chatter of those two little girls as they shuffled down the hall. They were always sure to tuck Dad into bed for the night before they left. I lay there listening to their voices receding into the distance, lying there prone again, my mind paralyzed in thought as much as my body was. At times like this, TV became a welcome respite.

    Over the next few months, it started becoming increasingly apparent that my wife was having difficulties coping with the massive change that had been imposed upon us. While I was out exercising, researching new equipment to use, running my business and generally exploring my new world and what I could do with it, my wife was retreating further and further into a morass of despair.

    Over time the situation did not improve with her escapist tendencies becoming more frequent and pronounced. I grew hostile and impatient with this ongoing rejection of what I had become. It slowly dawned on me that during rehab a lot of focus was put on me. My wife was told repeatedly that she had to be strong for us both, that she had to help me cope with my new challenges, that she had to "be there" for me like at no other time in our lives. I now think about this and while all those who made those statements had the best intentions and were sincere in their advice, it clearly missed the mark in terms of acknowledging her own feelings about such profound change.
    Now some two and a half years later, the net effect is that our problems have spiraled massively out of control. It seems fairly evident to all concerned that the marriage cannot be salvaged. Why did this happen? Could it have been prevented? These are questions I ask myself every day. What could I have done different? I found that the more I sensed rejection from my wife the more I rebelled against it. It became my new focus. I would alternate between consoling her for a few days and when I saw nothing changing, I would lash out and ask for a divorce. She refused to consider counseling and as a result I felt she wasn't trying. For her though, counseling was for weak people who couldn't cope. We were strong individuals and had a strong relationship that had already survived numerous hardships. Or so we thought.
    I felt I had moved on very quickly re-establishing my life the best way I could. I was active in numerous physical activities and was seeking to increase the number of things I could do. I bought a hand-bike so we could all go riding together and an all-terrain chair so we could go in the forest or go camping together. Skiing was next on the list.

    Everything I did was geared to assisting me to get back to my family and be able to participate with them in whatever we chose to do. I became deeply resentful that my wife was not joining me on this new journey. It became increasingly apparent that I was going to be going it alone without her support and re-assurance. This caused me to falter. I started to lose hope. I started to experience feelings of futility. I started thinking to myself, "Well, if she doesn't want me, then no woman will". I am doomed to a life of celibacy, living alone in some squalid apartment, everything lost, waiting for my next disability payment.

    I thought of Christopher Reeve and Dana and how they seemed to be coping so much better than we were and yet his functional loss was so much greater than mine. Why could my wife not be more like Dana? What was I doing that was not supportive in helping her? Some of my actions were clearly not helpful. Feeling alienated and relegated to the dust heap as far as a sexual being made me angry. In my anger, I lashed out, asked for a divorce, eventually moving downstairs to the basement when she became pre-occupied nightly with the internet. Her escapism just got worse. The more I fought back against her rejection the more rejection I experienced and the more she retreated into her other new world.

    After two years of badgering on my part, my wife finally agreed to counseling. By this time however, things had gone past the point of salvage. Nothing more could be done. Too much pain. Too much hurt inflicted by both parties. We had completely lost hope.

    So could any of this have been avoided? Perhaps with counseling early on during rehab and thereafter, we may have been able to address the deep feelings of loss that my wife was experiencing. Clearly, I had chosen to see my new life as a glass half-full whereas to her, that same glass was approaching bone-dry.

    Each of us is unique. We are the sum total of all the cumulative experiences we have had in our life thus far. This 'pre-programming' forges our identities to such an extent that we react according to its dictates. My wife's conditioning was different than mine. This does not make her a bad person. It does not make her malevolent, evil or selfish. It simply is how she was pre-programmed to react to this type of situation. In fact, I don't know exactly how I would have reacted were the tables turned and it was her in the wheelchair. Would I have reacted the same way? While I like to think not, we will never know the answer to that question.

    Three years later and I am, once again, anxiously waiting to start yet another new life. A new life as a single disabled person. A divorced father of two beautiful little girls. Is it sad? You bet. But somehow I still have hope that my life will get better. I know it will not happen by itself. I know that whether it actually gets better or not is largely in my control. I have the power to enforce positive change in my life. The power rests in my mind. My mind is what will determine for me what my life is to become. I am not a complete victim of circumstance, blown hither and thither by forces beyond my control. I have learned that if I am positive in my own life, if I exemplify that in my actions and in how I live, others will respond in kind.

    It is in this way that I believe my life will improve. By being positive yet realistic in what I can achieve and in the level of happiness I can attain, others will join me in sharing the happiness that life can bring to us all. I will not be rejoicing alone. We will share our triumphs and sorrows together.

    Each of us has goals and objectives that we seek to have re-affirmed by those around us. In this journey, we are stronger together, through friends and family than we are on our own.

  7. #27
    Dear Wolf, Thank you for your thoughtful and insightful post; you brought tears to my eyes. I am so sorry your marriage didn't last. None of us ever knows how we'll react in times of stress, especially the kind of stress SCI puts on a family. Your experience, unfortunately, is repeated over and over again, and is testament to the fact that families and spouses need emotional care just as much as the newly injured need physical care.

    My hope for you is a new life that's productive, and loving, and knowing that you have a family here forever (even tho we're a bit dysfunctional at times! )

    To all family members of newly injured loved ones; take care of yourselves, and take care of your relationships; find new ways to lean on each other, and new ways to relate. Get help as soon as you can; the rehab psych counselors will also talk with family members. Even if you think you're strong enough to 'handle' things, having someone to talk to is a help. Join in on our 'Caregivers' forum, for support and just to have a place to blow off steam. We're all here for each other.

    _____________
    Tough times don't last - tough people do.

  8. #28
    Junior Member wolflarson's Avatar
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    Dear Marmalady,

    Thank you for your words of encouragement regarding my little story. Yes, it's tough but as you say, there are always positives in every scenario, you just have to stay focused on looking for them. I also echo your sentiment about thinking you are 'strong enough to handle things'. That's really what happened here in that my wife was sure she and us together were strong enough to not require counselling but what is counselling other than a sounding board to vent frustrations and fears and concerns and try to deal with them openly rather than trying to ignore them or hide them away.

    Take Care,

  9. #29
    wolflarson, thank you very much for sharing your experience. It has been with me now for several days, so that I can digest and understand your experience. It touched me deeply.

    Spinal cord injury has broken up many families, not only between the spouse and the injured persons but between parents, and even amongst other family members and friends. The reasons for breakup are of course extremely varied. In some, spinal cord injury may be the straw that broke the camel's back. In others, it may be the inability of the spouse or the person to accept the change or stress.

    Spinal cord injury also draws many families together. One common factor that I have observed in such cases is strong support from multiple family members, tolerance, understanding, and community. When parents are involved, it is important for the mother and father to take turns being the "strong" one in the family so that the other can "let go". When I see a spouse or a parent who is bearing the burden in isolation, that is worrisome.

    Counseling is important because it allows people to say what is on their minds without damaging relationships. Hurtful words, once spoken, are like bullets from a gun. They cannot be retracted. It is better to shoot on a firing range. Certainly friends and other family members can serve the role at times but they too have a emotional stake in the spinal cord injury.

    Finally, I think that we do not realize the importance of hope for the family. One of the most difficult aspects of spinal cord injury for a family member is the sense of helplessness. We receive hundreds of phone calls and emails from family members who want to do something. The sense of helplessness is devastating.

    Wise.

  10. #30
    I have been meaning to add my story, and since I really should be grading projects (and don't want to), I will do it now.

    I am 45 and female. Seven years ago, I had horses that I rode and trained. Horses had been my passion since I was 10, and my mother relented and sent me to a summer program through the community park district (boy did she come to regret that, she hated horses, and after that I was addicted). One day I was riding a young and very athletic, but difficult horse that I had, he threw me, and when I hit the ground, I had this bizarre buzzing sensation coursing through my entire body except my head and upper neck. I could feel or move nothing except my head. This was exactly 10 days after Reeve's accident, and he was all I could think about, that I was just like him (I was an RN). Thank God I was breathing though. My 10 year old daughter was there and she knew CPR because I taught classes, but I would have hated to put her in that position, but she did yell at the head trainer not to move me or remove my helmet, kids are amazing.

    I spent a week in acute care on IV steroids. I had a C3/C4 incomplete injury, no fractures, but bruising and swelling along with congenital stenosis, central cord syndrome. MY NS said that given my MRI, they never would have allowed me to play pro football, LOL. I remember little of that week, although friends told me I appeared alert and coherent. I was then transferred to a rehab facility for the next seven weeks.

    I took my first steps at 10 days post injury. Return gradually came up through my legs to my trunk and then down my arms. It would be another six weeks before I had any finger movement. Bladder function returned two days before discharge. I worked my butt off in PT and OT, and whenever somebody refused their slot, they would just pencil me in for additional time. Original predictions were that I would never leave a wheelchair. Today I walk unassisted, but have significant problems with spasticity, balance, and manual dexterity. Bowel/bladder function is not "normal", I still need stool softeners or I can't go, but also have accidents at both ends. At time of discharge, I was still very weak and had almost no hand function. I came home, barely able to take care of myself, to two children, 6 and 11, a house to run, and a husband who refused to offer ANY help whatsoever. His contribution was his paycheck, period, as it always had been.

    My marriage did not survive although it lasted another six years. The fallout from the accident was the straw that broke the camel's back so to speak. I applied for and received disability, and went back to school through vocational rehab. I graduated with a second degree in computer science at the top of my class. I now teach part time at the local community college. Fatigue is my biggest problem.

    Today, people look at me like I am crazy when I say that my accident was the best thing that ever happened to me. Emotionally I am a much stronger person, mostly because of the adversities I have been able to conquer. I discovered that I had never given myself nearly the credit I deserved. I have far more courage and self-confidence. I also learned how to ask for help from friends. I got out of a bad marriage, oddly enough I am not sure that I would have had the courage to leave otherwise, even though now it is financially much more of a struggle because I can't seem to manage more than 20 hrs/week (along with single parenthood) due to the fatigue. I have a new career, one that I like much better. I have become closer to my family of origin, I just wish they didn't all live so far away. My biggest regret is that I can no longer ride and handle horses, and that I do grieve, that part of my life I truly loved. My oldest daughter is now an excellent rider, and that is bittersweet for me. But I have come to believe that out of pain, comes growth. And boy, have I ever grown up. Thanks for listening.

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