Departments: Pictures of You
When were you diagnosed with muscular dystrophy? When I was in first grade, the nurse at school noticed me lagging behind in running the mile. She told my mom she thought something was wrong and suggested we get it checked out. We went to a neurologist who did a bunch of tests. I don't remember too much except that the doctor threw my shoes down the hallway and asked me to walk to them and pick them up in certain ways that I couldn't do.
Did you find out later what the tests were for? My mom says the neurologist asked me to walk on my heels like a duck. My heels were too inflexible to do it, which can be a sign of muscular dystrophy. Then he asked me to get up from the ground without using my hands, which I also couldn't do. That muscle weakness was another clue that I might have the disease.
What happened after that? The doctor prescribed the steroid prednisone, and I remember being really upset and saying I couldn't take steroids because I was playing baseball. I wrote a letter to my parents telling them they were the worst parents for not letting me play baseball. I remember I signed it, “Love, your very angry son.”
You're in a wheelchair now. When did you transition to it? Around age 10, certain activities like walking and writing got more difficult. I started using the elevator in sixth grade because I couldn't climb the stairs anymore. Then when I was 15, I broke my leg just from standing up. That was the last time I walked. I was worried about using a wheelchair, thinking no one would want to hang out with me, but it gave me more independence.
How has your disease affected your social life? I had a good group of friends in middle school who knew me before my disease became more pronounced. They didn't let it bother them. In high school it was harder to make friends because I hadn't ever done it with a wheelchair. A lot of it was logistical. If a group of friends wanted to watch a football game at someone's house and it wasn't wheelchair accessible, I couldn't participate in a regular night with the guys. I could only meet in a public place or at my parents' house.
You're a freshman at Princeton University. How's it going? It was hard at the beginning, but it's better now. Socially, I'm doing okay, although there's room for improvement. I have some good friends, and I've met another student with muscular dystrophy whom I enjoy immensely. I also do sports announcing on the radio and online.
What are your hopes for the future? I don't think too far into the future, but I'm interested in a career in writing and sports announcing. I'm also not waiting for a new drug for muscular dystrophy. That's for the next generation. A cure would be great, but I don't need it to make my life better.