If you ask me how I see myself during my childhood, I would say like River Phoenix in Stand By Me.
I was kind and sensitive, but with a tough exterior. I had learned to keep a brave face from all of the doctor appointments I was forced to endure — appointments for the countless tumors and resulting broken bones. My disease has a complicated name: Multiple Enchondromatosis. I usually don't bother saying it because I have to explain it, even to doctors. It's a rare and obscure disease most doctors I have seen don't know about, and I still struggle with it today. My last surgery was a little over a year ago and the tumors still cause pain, and there is always the risk of cancer. The last time I checked someone with my condition has a 30- 50% chance of getting bone cancer. They aren't the best odds, but they ain't the worst. It scares me but I believe if I did get it, I would beat it.
So for my seventh birthday, despite my tumors, I bugged my parents for a skateboard. My parents, as they often did, relinquished their need to be worried parents for my need to be a normal kid and gave in despite their reservations — their well-founded reservations, it turned out. I was literally on the skateboard thirty seconds before I flew two feet in the air and broke my second toe. Determined not to prove my parents right, I walked on that toe for an hour until we went to McDonald's, where I faked injuring it in Playland. It worked, and I never did master the skateboard.
With me that day was Gary. He, along with another boy and a another fellow "tomboy," made up my little Stand By Me crew. We were little boys, 100%: we played soldiers in the woods, basketball, baseball and football. I am sure I could have avoided 90% of my broken bones if I hadn't been so damned determined to be a tough little shit.
This article appears in Jul 1-7, 2010.