Volume 4 Issue 2
October 2001
Page
Cody Unser's Speech at the TM Symposium Dinner, National Aquarium, Friday, July 13, 2001 I want to thank everyone here for your energy, input and dedication that have made the Symposium so informative and helpful. I got TM in February of 1999. They say talking about a problem helps. And since I got TM, I haven't shut up. I didn't start out knowing where my journey would take me. I was 12 years old, in a wheelchair, and trying to make sense of why things were happening. I started out very scared, very confused, and very annoyed that nobody seemed to know what was going on except for the TMA. My story is fairly typical of what a lot of people with TM experience. I got sick and went to a hospital where my symptoms were misunderstood. I was short of breath, my legs felt numb and tingly, I had a blinding headache and I was kind of sick to my stomach. I couldn't go to the bathroom. The ER staff pronounced my condition as being some kind of "stress" event. I was just hysterical. I should go home and relax. "Take two aspirin and call me in the morning." In the morning, I couldn't walk. Within a day a doctor at another hospital picked up on what was going on and within a day or so of that, we had the diagnosis of Transverse Myelitis. What followed was a journey. I had gotten sick in Albuquerque, was diagnosed there, and after a few weeks was transferred to Barrow Neurological Institute in Phoenix to start rehab and learning about my new life on wheels. That all went fine. I got pretty good at doing wheelies. Over time, my friends came to understand that I was in a wheelchair. I had the good fortune to go see other doctors in other clinics in other cities in different parts of America. I saw Dr. Spetzler at Barrow. I went to see Dr. Barth Green at the Miami Project. I came to Baltimore and met Dr. Kerr. My mom had other discussions and consultations with other doctors in other places. And in all those conversations, here is the one thing we learned for sure. Nobody treating Transverse Myelitis in one part of the country was talking to anyone else treating TM in another part of the country. OK, there were obviously some discussions, but every place you went, you mainly got the idea that they saw TM so rarely that there was no really good network in place for sharing information. And that was in the medical community. At onset, everybody did something different. For the outside world, the public at large was utterly clueless about TM. So that was why the Cody Unser First Step Foundation started. To build public awareness of TM and encourage the medical community to share information about TM. And more than I can tell you, the activities with the media, support groups, other foundations, government officials and public appearances have helped me see transverse myelitis not so much as a barrier but as a unique opportunity. Let me say a word about barriers. The most restrictive barriers are the ones you place on yourself. They are also the easiest to overcome because your attitude, which is something you control, can beat any barriers. Whether or not you think you are handicapped is what makes the real difference. Once I figured out that my wheelchair was just a new accessory, and my friends saw I was the same old Cody only sitting down, things got back to "normal," if you can call any of this "normal." But like I was saying, awareness of TM was a big thing, and getting the medical community to aggressively share information about research and their patients was another important thing. I've been very fortunate to be in a position to share my story in the media, build a website, distribute information brochures and interact with TM patients all over the world. I think the world is a little more aware of TM than it was two years ago. On getting doctors to work together, I'm a little bit of a nag. I get that from my mother. But when I saw all these wonderfully smart doctors and therapists in different places who really knew what they were doing, but didn't know what anyone else was doing, that was a real problem. So I made a point to bug all my doctors and therapists about calling other doctors and talking not only about me, but all their TM information and sharing their knowledge. Thanks to Dr. Kerr and Johns Hopkins, we now have a national consortium that will be the most important advancement in TM research and medical awareness, because information from the best and brightest TM doctors and researchers will be shared. I suppose this is a good time to say that I really hope stem cell research can go forward, ethically, with government funding. I don't see this as just something the government can do, it is something that all of America can do. And the government needs to be a part of it. They are Americans too, right? Let me also say that Dr. Kerr's work in this area is just so exciting to me. I think this research is the best chance I have to walk again. And I appreciate the Christopher Reeve Paralysis Foundation efforts to affect government policy. I hope if you feel as strongly about this research as I do, you will figure a way to let your congressman know of your support. This is a fight we need to win. My foundation has been pretty successful so far, but we're only getting started. It is neat I've gotten a couple of awards, but honestly getting awards is kind of a pain. My real inspiration comes from you, all my fellow "TM-ers" who have shared stories, encouragement and provided your own strength. We are all in this together. And in closing let me say that life is good. Whatever normal is, this probably isn't it. But, if you can't be normal, be spectacular. I love you all. |
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