With my aspirations regarding Paralympic competition it is common and expected for me to field questions regarding my disability and how it affects me in and out of competition. I’m going to try to write about it here for anyone who wants to know more or feels uncomfortable asking me directly. I know that disabilities can be a sensitive issue for many and I will not hold it against you for being shy.
I have become progressively more open about about my disability for several reasons. First, I live with Cerebral Palsy every day, it is as much a part of my life as being 5’8″ tall or having brown hair. Trying to hide it or ignore will not make it go away, but I do not feel the need to broadcast to everyone that I have CP. It has helped shape my outlook on life but it is not the only factor that affects my life or my outlook. Second, if people with disabilities treat their conditions as a normal, integral part of life then able-bodied people will be more likely to understand and accept disabilities as a part of life. It will also expedite the medical understanding and treatment of disabilities. Also, I feel that as a person with Paralympic aspirations I have chosen to put my disability on display for all to see. I have been given the opportunity to represent my country so it is my responsibility to let people know why I have this opportunity.
What is Cerebral Palsy (CP)? CP is a blanket term for a group of disabilities caused by brain damage. It usually occurs prior to birth, by complications during birth, or by trauma during infancy. CP is non-progressive and non-degenerative although the secondary effects can progress rapidly during adulthood. CP is classified by location and effect of the disability on the body.
My disability is classified as Spastic Hemiplegia. Spastic meaning that the affected areas do not receive signals from the brain as quickly as they should and the muscles in that area much tighter than normal. Hemiplegia means I am only affected on one side, in my case that is my left limbs.
I arrived in the winter of 1986, I was born a healthy and perfect little boy (though my mother and ex-girlfriends may disagree with the perfect part). When I was 4 months old I became sick and was prescribed an antibiotic. I had a severe allergic reaction to the medication and became dangerously dehydrated. When I was seen in the ER it took 26 (yes, twenty-six on a 4 month old) needle sticks to draw enough blood for testing. At some point during this I had a stroke. A few years later I was diagnosed with Cerebral Palsy as I was displaying impaired motor functions such as dragging my left foot and an inability to pick things up with my left hand.
Fast forward to age 12 when I had my first surgery at the Shriners Hospital in Greenville, SC. I was fortunate enough to attend church with a few men involved with the Shriners and they introduced me to the Shriners Hospital system. After countless trips to Greenville for initial overviews and pre-ops I had a muscle release and 2 tendon transfers in my left wrist. Then there was another set of countless trips for post-ops, rehab, and therapy. I gained a tremendous amount of functionality in my left hand after that operation. 4 years later I received a botox injection in my arm to relax the spastic muscle. Intense therapy left me with even more use of my left hand. I’d like to pause now and thank my Mom for driving me on all of those countless trips to Greenville, I know it wasn’t easy with the other kids and everything she had to do. And while I’m on a roll I have to thank the Shriners for fixing me at no cost to my family. You made my life better, and I mean that with the deepest sincerity.
That brings us to the present and how having Cerebral Palsy affects my life and athletic pursuits. My disability is more severe and noticeable in my left arm. I cannot extend my left arm completely because my elbow does not bend properly. The bones in my left arm and hand did not grow completely and are smaller/shorter than those in my right hand and arm. It is weaker and slower to respond to brain commands. I find that my fine motor control is more affected than gross motor control. In real life, I type with one hand and do a lot of other things with one hand, buttoning button with one hand seems to be my most impressive talent. On the bike I have all shifting and braking duties handled on the right side. You can see an in-depth overview of these modifications at my other blog, Cycling with a Disability
My left leg is pretty uniformly 4cm smaller in circumference than my right leg. The smaller muscles and decreased strength of brain signals does cost me a chunk of power on the bike. I also have issues with ankle flexibility and leg suppleness. Skills come hard and leave quickly with my left limbs but I know that and train with that in mind. I also have issues with the cold increasing the spasticity of my muscles so I tend to ride slower and with a less smooth pedal stroke when it is cold.
My Paralympic classification is C4 which is the category for athletes with single below knee amputations or mild cases of Cerebral Palsy/brain injury.
I think that is a pretty good summary of my disability, and if you have any questions feel free to post them in a comment or ask me in person.