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Why is no one talking about spinal cord injuries? Why do we who have them get so ignored?

My L1 vertebra shattered. My children were told that I would never walk again. I walk, and have made vast improvements since I stopped seeing a doctor. I do not believe that because no one has done something yet it cannot be done, and I do believe that that lack of precedent does not stop progress. I think that progress in surgical remedy for SCI is far beyond current dour and unquestioned beliefs that the medical community shares with us, the patients.
I was just over 50 when I was injured. My cord was not severed. I was told that I would be numb, in pain, & never have control of my elimination. I was to spend the rest of my life manually removing solid waste & using catheters. While it has been very difficult, I have gained as much or more control as a toddler o er fecal expulsion. While I have not begun a program for training my bladder, I am already feeling full, a need to urinate and sometimes get to the toilet on time. All after spending the years between 50 & 60 addicted to opiate pain meds. If anyone else has done this or not, I think doctors need to revise their thinking about the future of sci injury & the healing possibilities.

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    Nov 14 2013: There was a great TED talk at TED 2013 about an advance that I believe is effective in treating spinal cord injury. I will try to track it down. It is not the same one Morton linked below.
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    Nov 14 2013: Welcome to TED Noel, and I'm sorry that you feel ignored. You hang in there my friend, and continue to move forward.

    25 years ago, medical professionals believed that when a certain part of the brain was damaged, a person would lose certain functions. After a near fatal head injury, I had an emergency craniotomy and was kept alive on life support systems for a couple weeks. My family was told that I probably would not live.

    The body finally stabilized, I was taken off support systems and regained consciousness....then we were told that I probably would never function "normally" again. I believed something different, so my family and friends supported me in my quest to regain as much mobility and cognition as possible. Within a short time, cognitive tests were showing high average/superior. How the heck did that happen? Within another period of time I was functioning at a pretty good level physically, and continued to improve.

    Now they know that our brains create new neural pathways. I think/feel that it is very important to keep questioning...keep believing in ourselves. I felt like a toddler too Noel, after the injury. I went horseback riding one day as a high functioning adult, and woke up two weeks later in a child like state emotionally and physically. I agree that medical professionals could revise their thinking:>)

    I'm glad you connected on TED, and KUDOS to you my friend.....hang in there!
    • Nov 19 2013: Thank you, Colleen.

      When I was a child, a neighbor & friend's mother was in a car accident and lost half of her brain. She was sent home to die - doctor's in the 1950s did not give her hope either. she taught herself to talk & to walk again. She did not even have a plate in her head for cosmetic or health & safety reasons. My mom was the only woman in the neighborhood who associated with her. She would send me over to her house to walk her over to our house, and I would sit with them while they had coffee and talked. Lacey spoke painfully slowly, yet she was smart, aware, and fully cognizant of her appearance, speech deficits, and need for companionship and communication. My mother showed me by her example how to love and care for people and help them to heal. Lacey and my mom were very special people.

      I do not feel ignored, but I deeply appreciate your caring response. Perhaps you could start a conversation about your experience and together we could encourage people to not ask or expect their doctor to have all the answers, to accept personal responsibility for their own healing and for that of others who find them. I truly believe that on some level I chose to be an example for others to make a contribution to healing.

      I think that most people would like to give to others in the world.

      All have stories to share and so much more. Not all of us can write books or plays or songs to tell others, or perform music or comedy or whatever.

      We have TED, and what a blessing!

      Your story is important, interesting and valuable. Please share it with as many people as you can.
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        Nov 19 2013: Thanks for sharing that story Noel, and thank you for your kind words of encouragement:>)

        It appears that we share the intent of being an example, hopefully encourage others to take charge of the body/mind healing, and give back to our world:>)

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    Nov 14 2013: A must-watch talk for this question:
    • Nov 19 2013: Thank you very much, Morton.

      I am certain that Gregoire Courtine is doing wonderful and important research. I also believe in the power of "anecdotal" information (as doctors call it).

      If someone else has done something, maybe I can as well. If no one else has done it, or has reporting that they have, maybe I can do it.

      Hope must be eternal

      And encouraged. If I can do it at 61, what can a 15 or 20 or 30 year old person do?
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        Nov 19 2013: I feel the same way Noel.....if someone else has done something, maybe I can do it as well. During the recovery, I read tons of books about people who had faced INCREDIBLE challenges, and as I learned more and more about how others faced unbelievable challenges, it minimized my challenge......well.....if s/he can do THAT, I think/feel I can move through my challenges as well.
        That is one reason I tell my story....if I can do can someone else:>)
  • Nov 18 2013: I should have qualified my opening statement with the word "human.". Rats, expensive technology, and drug cocktails are not for me. I have done so much healing on my own, but first I had to divest myself of most of what doctors have told me - they have not been encouraging nor offered hope. What I have done for myself has been from cleaning up my diet, finding do-able exercise (in my salt water canal, mostly, then dancing alone and walking), using quality organic herbs and treating food as medicine. Positive thinking, spirituality, and intestinal cleaning are also important factors. I know that most Americans do not want to give up fast food, meat, sugary foods but are they really more valuable than health?