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Thread: Wise in Wonderland

  1. #1

    Wise in Wonderland

    Experiencing a spinal cord injury is like stepping through the looking glass. Once you start following that bespectacled rabbit of hope, the one who is always saying, "I'm late, I'm late for a very important date," you must set aside your attachment to reason and logic. When you go down that rabbit's hole the free fall is disorienting. Upon arriving in Wonderland you meet bizarre characters speaking a language that is familiar but often unintelligible. Some days you feel huge and the horizon looks close. Other days you are smaller than a speck of dust and there seems no end in sight to the insignificance you feel about your plight.

    Well, in San Diego, I finally caught up with that little rabbit. (Wise, please forgive the analogy) He travels in a world of multi-layered fiefdoms. It is full of dictators presiding over the tea parties of politics and religion and institutionalized medicine. That he prevails as he does is a testament to his intelligence and determination and ABSOLUTE belief that solutions to the mystery of SCI can be found. His stature in this world is unimpeachable. Again and again he demonstrates that he is our friend, our warrior, and our leader.

    True, the revelations at Neurotrauma were modest. But the reason for this is now clear to me. Through Care Cure, we are already up to speed on what is happening. I understood and was aware of everything Dr. Young was presenting to that audience of scientists in San Diego. I did not expect this but it was the crux of what I learned from the experience. I have evolved from the frightened crying father who wandered helplessly around the trauma ward after Buckwheat's injury. I am now informed and therefore empowered to cope with the challenges. This knowledge is the best of gifts and for that, Dr. Young, I thank you.

    With regard to SCI, Dr. Young is always firmly pushing the word Cure. Oftentimes he is shouted down by pundits with the epithet, "Off with his head!" (Think Krauthammer and Frist) Invariably, he calmly ignores the threat, rolls up his sleeves and gets back to doing the work we, here at Care Cure, want to have done. He will not be deterred and neither should we be.

    There has been a lot of anxious chatter on Care Cure of late. Some in anticipation of Neurotrauma, some in disappointment about the buzz, or lack thereof, following the symposium. I was there. I met Dr. Young and Patricia Morton and other members of Care Cure. I too, had to digest my expectations and observations and try to understand what this conference means for my son and our family and friends.

    I believe it is unrealistic of us to think someone will appear at one of these conferences with the "key" to the treasure we all seek. I believe the cure is more like a cryptogram that must be solved. Each little piece of the puzzle must be examined and the code will be learned only after much trial and error. It is a very complex puzzle but like most puzzles the answer is right there looking back at us. We just cannot see it yet. But we will, in time, see the obvious.

    Time: that is perhaps the most troublesome word in the SCI vocabulary. Time is what many perceive is really stolen from us by an SCI. Accordingly, we wish to know when the cure might present itself and we badger Wise with that question. I understand the urgency. I am able bodied but I observe the best years of my son's life falling like grains of sand in an hourglass. I observe the best days of each year discarded at the feet of an insane social services system. I observe the best hours in each day wasted with preparations to just get going from task to task. I observe the best minutes of every hour devoured by the demands of quadriplegia. I too, desperately wonder when.

    Nonetheless, it is unfair to pose this question of when. It is unfair to Dr. Young and it is unfair to ourselves to expect a definitive date. Does the question about a cure date make any more sense than asking our doctor when we are going to die? We ARE going to die but we don't know when. So it is with the cure. It will be found but the date eludes us all. I don't know. SCI breaks my heart over and over and over again. But I am not disappointed with the state of the cure. Theoretically, I believe we are there. The clues to some of the puzzle's mysteries are revealing themselves. Combination therapies propose exciting solutions to some of the thornier issues preventing regeneration. Trying to determine the time when these therapies might be available only distracts us from the work to be done.

    Dr. Young can certainly answer for himself as to whether the question is fair or not. He can handle the science. It is easy to see however; there exist obstacles that are not directly under his control. Money, ethics, politics are but a few. He has so many battles to fight AND he must respond to our desperation as well? We need to give him a break. There is no doubt, I repeat; no doubt, he is resolute about our cause. It IS his cause as well.

    Yes, Dr. Young is late for a very important date. Therefore, we need to get out of his way and furthermore; we need to clear the path. A better question to ask other than "when" is; "what can we do?" There is much to do. For now though, let's keep it simple. Next Tuesday, if you are a United States citizen, you have a choice. You don't need Wise to tell you whom to vote for. You don't need to answer questions about political affiliation or fiscal policy or the correctness of our role in Iraq. Those issues are open to debate. The question you have to answer if, indeed, you want that date for which he is late to come sooner is who will give medical researchers the green light to do what they do best? There is no debate on this.

    John

    [This message was edited by john smith on 10-28-04 at 11:59 AM.]

  2. #2
    One word best describes your post, John:

    "Wow"

    Extremely well written. Thank you.

    Sue

  3. #3
    john, I can only echo "wow". You are such a good writer! I am proud to be part of the subject of fabulous prose. Wise.

  4. #4
    john - well said. And let me say that, although brief, it was a pleasure meeting you.

    Further, I echo your sentiments and thoughts regarding "when" and the constant inquisition that many of the researchers are subjected to.

    Your comments concerning the "..frightened crying father.." and "..informed and therefore empowered.." are particularly telling and encouraging. I can only hope that all the members here will engage, digest and reason their way to the same conclusions to which you have arrived. Too many people rely on the "experts" for their opinion when it is my belief that it is incumbent on each one of us to be as clear, comprehensive and resolute as you have become. SCI is a big elephant and has to be eaten one bite a time.

    Finally, you are absolutely right in your question of "what can we do?" I hope that many members read your thoughts and therefore become more proactive rather than reactive.

    Peace, onward and upward.

  5. #5
    This needs published..NOW..before Tuesday.
    What great writing. Was a pleasure to read.

    Help is on the way.

  6. #6
    John,

    Your post was awesome, inspiring and extremely well written. Thank you for contributing to these forums.

    Deb

  7. #7
    Very cool Mr.Smith....Awsome!

    ~~Where am i going and why am i in this handbasket~~

  8. #8
    Hear, hear.

    Can't stop the spirits when they need you/This life is more than just a read thru.-
    red Hot Chili Peppers

  9. #9
    John,

    Hello my friend. As I told you months ago you should be writing this down in a journal to one day be published. Your words ring with passion and truth and courage... your comparison to Wise and the strugging rabbit of Wonderland are astonishingly true and accurate. Dr. Young is our leader, our mountain of flesh no politician can erase. John, you keep shouting away the silence of indifference for us all. It will take an army of the ablebodied to march with us into that promised land. If most men held your (and Wise) heart we would be already free from this damnation.

    Walk tall Big John, fight the good fight my friend, my brother... and Never Ever surrender.

    Rusty

  10. #10
    A word to the wise

    I support cure advocacy, thats the second step, the first step was that it has been shown that a cure is a possibility. The third step must also not be forgotten about and it would start after the green light is lite for research, and that is to make sure that the funds are placed in the right places and not wasted in a grant grabbing frenzy. This is a long road with many obstacles and direction is ever so important.

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