I remember well the first clear sign of trouble. I was a typically agile 10-year-old. Then one day, after sitting in a chair for a few hours, I couldn't move my upper leg. Days passed, and still my left hip stayed locked. Scans revealed a lump the size of a baseball. Doctors thought it was cancer. I went through two surgeries and a round of chemotherapy -- no change. Two years passed before the problem was accurately diagnosed: fibrodysplasia ossificans progressiva (FOP).
This rare genetic disease turns muscles, tendons and ligaments into bone. Triggered by a gene that controls bone growth, painful flare-ups can arise spontaneously or from the slightest trauma -- a bump, a fall, a vaccination. The condition is extremely tricky to identify; often, the only distinctive sign is a telltale malformation of the big toe. Though not fatal, FOP can eventually fuse all the joints in the body, locking a person in one position.
In those early days, I caught the fringes of what my parents and doctors discussed but not the frightening details. By high school, however, I knew FOP was serious. I'd read the materials my parents had gathered, and I'd filed away snippets of their conversations. Reality struck hard one day when I heard my mom explain the worst-case scenario to a teacher: I could become a human statue.
My body, meanwhile, was giving me its own report. By senior year of high school, I needed a wheelchair because my neck and spine had solidified.
A disease like FOP is scary enough to redirect a person's life. I met one girl who threw herself into risky sports -- bungee jumping, rappelling -- when she learned she had it. Others might become reclusive; still others devote their energies to speaking out through the International FOP Association. But I've never been athletic, and public speaking terrifies me. For me, a dramatic change of direction just never seemed to make sense.
In fact, I doubt my life today would be much different if I didn't have FOP. I went to Stanford, lived in Kimball all four years and majored in symbolic systems. I still love to read and write fiction and am now interviewing for jobs at computer companies. Of course, there have been limits: I couldn't visit friends on the upper floors of my dorm, and I can't play violin as much as I used to. But all in all, the course of my life has been straight ahead.
The future could be good or bad. My entire body could turn to bone, or I could become only slightly stiffer. Or -- and for this I pray -- scientists could find a cure. Until then, I'll pin my hopes on today. The disease may threaten my body, but it hasn't taken over my life.
