I always had an unusual walk -- even when I was
a child. My storklike gait must have been comical to the other kids, as
they usually teased me pretty badly about it. I felt inferior throughout
most of my youth. My mother took me to a podiatrist who diagnosed my
problem as "tight tendons". He prescribed a series of stretches that he
said would cure it, but the stretching didn't help.Things went from bad to worse. One day I couldn't put gloves on because my fingers wouldn't straighten, and my mother knew something was seriously wrong. After tests, exams, scans, and a biopsy, I was finally diagnosed with Charcot-Marie-Tooth. CMT affects the myelin in the lower arms and legs, which serves as insulation for the electrical signals from the brain. When a person has CMT, this layer of fat dissolves.
Over the next few years my hands atrophied, but it was my legs that were hit the hardest. My ability to walk deteriorated and, in turn, I got more and more down on myself. I had surgery to correct some tendon problems and spent six weeks in a wheelchair. As luck would have it, two years later, just after my freshman year of high school, I was hit by a car and ended up in a wheelchair, then later on crutches, for six months. My feet became completely unusable. I could still walk, but from the knees down I couldn't move a muscle.
During my sophomore year of high school, I was put into an adaptive physical education program. The school had recently hired Ron Russ, a former trainer for the Chicago Blitz and Chicago Bears football team. Ron put me on a light stretching and low-impact resistance-training regimen, but I never really got into it and the following year I was back in a regular gym class.
About that time, I discovered my love for theatre. I enjoyed working backstage, building sets for our school plays, but I never thought I could pursue a career unless I took some serious steps to increase my strength and overcome my disability.
My senior year, I approached Ron with a deal; I wanted him to be my private trainer. He agreed and we worked out a way to do it around my class schedule. Every morning for 45 minutes I'd lift, beginning with bench presses using two 25-pound dumbbells. I also did bicep curls, tricep extensions, and dumbbell rowing.
When I was able to do three sets of dumbbell presses using 35 pound weights, Ron bought a weight set and benches for the training room and I started doing barbell bench presses with 70 pounds. Ron kept acquiring equipment and I added leg extensions and hip abductions/adductions.
At the beginning of my senior year, my 5'7" frame carried 130 pounds. With Ron's encouragement and guidance, I continued lifting religiously. Gradually my confidence grew and I was given a position as a crew head in the theatre program.
By the end of my senior year I had gained 15 pounds. I bench pressed 190 and did leg extensions with 200 pounds. I was accepted into the theatre department at the University of Illinois at Urbana-Champaign.
At this point the story diverges a bit from the original magazine article. After two years of theatrical technology, I was unhappy. As much as I loved theatre in high school, the college theatre scene was just not my thing. Long hours, grumpy people, and dangerous and unhealthy work began to take their toll on my happiness.
CMT took a hand here -- On March 23, at 1 PM, while trying for over an hour to fasten a piece of scenery using safety pins, I realized how much I had been struggling, physically, to do the work essential to my major. When I had been in love with theatre I hadn't noticed, but now that the honeymoon was over I was miserable. I decided right then to go into creative writing instead. By two o'clock the next day, I had a new major, and I haven't looked back. Without CMT I would probably have stayed in theatre, and never dared to make the difficult and radical changes I needed to be happy.