Hi, my name is Matthew Debly. I am 21 years old and have had TM since I was 16 months old. Overnight, I was paralyzed from the neck down. My level of injury was C4 to T2. My TM was caused by my MMR immunization.
I don’t remember what it was like to experience the onset of TM, but I can tell you what living with the aftermath has been like.
I live in Windsor, Ontario, Canada but my parents were able to take me to the Shriners Hospital for Children in Chicago where I met some great people and underwent most of my medical treatment through the years. A five hour drive each way for a doctor’s appointment may seem excessive for some people, but Shriners was well worth the travel. I have had several operations over the years. Due to a misdiagnosis of a cancerous growth in my spine, my first surgery was at 17 months when the doctors biopsied the top half of my spinal cord and then did a laminectomy to help with future swelling. I don’t remember the 8 ½ hour surgery, but the zipper-like scar from the base of my skull to the middle of my back is still tender 20 years later. We make sure to keep it out of the sun and for heaven’s sake, don’t forget about it and scratch. I have had tendon transfers, hamstrings lengthened and my lower legs cut off, turned and reattached so that my feet were turned and pointed forward. For a while, it seemed like every time I learned to walk, another procedure would set me back and I would have to start to learn to walk all over again. But I did it, and it was all done for my best interests and health.
Today I can walk in the house unaided. I only use my wheelchair for distance, and I love to drive my Ram 1500 with hand controls. I can get anywhere I want, and some days, I forget that I have a disability.
My mom says the first years were the worst because no one knew anything about Transverse Myelitis. There was no SRNA to meet other parents and I never met another kid with TM until the first SRNA family camp in North Carolina at Victory Junction. It was great to meet the other kids and learn that I am not alone. I still keep in contact with a lot of the kids today. The doctors helped a lot providing education for the day to day struggles of life. SRNA has been a great friend to me and my whole family. We reach out to new families to be there for them and to provide support, and answer the questions that no one answered for us.
For a kid in a wheelchair, I have had a very active life, full of sports and travel. I have tried wheelchair racing, shot put and javelin as a young athlete, and in my teen years I fell in love with wheelchair basketball. Shiners got me involved with deep sea diving and I went on a diving trip to Bonnaire and in the Florida Keys. This is something I definitely want to do again. I love being under the water swimming with the fish, sharks, eels, and barracudas.
Most of my time is now spent training and playing wheelchair rugby. I love the competition and the group of guys I play with. My disability has also given me an opportunity to play wheelchair basketball for Team Ontario in the Canada Games. I am also training to become part of Team Canada in wheelchair rugby so that I can compete in the Paralympics in Tokyo, Japan in 2020. I believe that I would not have reached this elite level of athletics to play for Canada and compete around the world, had it not been because I became disabled with Transverse Myelitis. You always have to find the silver lining when bad things happen to you. As they say, when you are given lemons, you make lemonade.
Sandy Siegel and the Transverse Myelitis Association have the knowledge, years of experience and compassion to help with any concerns. I am more than happy to assist with any questions patients may have, or support SRNA in any way that I can. This is a great organization that depends on people like Sandy and SRNA group, including the wonderful doctors that are there to teach us and help us understand the next steps. Like any great organization that helps people in need, SRNA depends on generous donations from people and businesses like you.
My advice to new TM patients is to keep living and keep active. You will continue to get better after 2 years, 10 years and even 20 years and, like it or not, you can never have too much therapy. I can honestly say that you can do whatever you want to do and what your mind will allow you to do. Never tell us that we can’t do something, because we are determined to show you that we can. It is our spirit and determination that will make us successful in our pursuits.
Matthew Debly
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