“A LIFE OF LONG ODDS” Part 2 of 3
By James Cole
After moving to Cape Cod and starting a new life, I felt reborn. I had many new friends, a renewed passion for my filmmaking, art, and even acting – participating in two high school productions. Most important, I was well. Now that all my reconstructive surgeries were complete, I began to define myself as “Normal …with two bags.” It wasn’t unreasonable: As long as I stayed healthy and hydrated – critical to avoid kidney infections – I felt good and had boundless energy. I was so confident that I didn’t bother finding a new doctor in Boston; instead I kept in touch with my surgeon in New York, driving down for checkups every couple years. The bad times were truly behind me.
I graduated high school, applied to several colleges, and was accepted at the University of Massachusetts, Amherst. Some accommodations had to be made of course; having two ostomies necessitated that I be granted a waiver from sharing a dorm room, a requirement for incoming students. Being the only freshman with a single room did raise eyebrows, however, so I lied or made up excuses, no different than when I was a child. How could I be honest about my condition with people I barely knew, when I was lying to myself?
College was a golden age. I stayed healthy and active, averaging the norm of five classes each semester. One day, my mother and grandmother drove up to visit me at school. As they arrived on campus, they passed a student biking up the very steep hill up to my dorm. Of course the student was I. In addition to earning my degree on schedule, I continued to make movies, shooting a Stephen King short story, The Last Rung on the Ladder. This film went on to become an officially recognized King adaptation.
My artistic drive was in part a response to my fear of intimacy. From high school through college and even beyond, I shied away from dating. When a woman expressed any interest in me, I invariably pulled away. The few relationships I did experience never progressed far. I was too terrified to tell the truth about myself, to acknowledge that I wore bags, let alone that I had exstrophy. My condition was off-limits to everyone, including myself…until something went wrong.
That first ‘something’ was a terrible sickness in the winter after I graduated college. Unbearable stomach pain put me in the local ER, where an ultrasound revealed an enflamed gallbladder. The complexities of my condition – scar tissue from multiple surgeries – necessitated transfer to Mass General in Boston, where I had emergency surgery. The surgeons discovered gallstones so severe that my gallbladder had died and had to be removed. It was a brutal surgery and recovery. Nature was trying to tell me that I was not normal. I didn’t listen.
I continued pushing, pushing, and pushing. I wrote a film column for the local paper, worked summer jobs, continued making movies, and writing – dreaming of a career in Hollywood. Then, a year and a half after graduating college, I packed up my car and drove across country to California. Despite being completely unprepared for the life that awaited me, I adjusted. I became a Temp. The first couple years were terrifying – working at countless unfamiliar companies, until I landed a gig at Walt Disney Imagineering as a staff assistant. Happily, WDI was a relaxed and creative work environment, and I became a regular there, working my “day job” as I honed my writing craft and tried to break into the movie business.
After almost a decade of happy and productive years in LA, my health declined. I began to experience painful digestive problems, which could not easily be identified. My diet became restricted, and it became harder to work and function. Eventually I found a pediatric urologist at UCLA who specialized in exstrophy, who diagnosed my problem: a severe inguinal hernia – a common problem for males with exstrophy. I had major surgery in August 2001 to repair the hernia. Recovery was difficult, but I progressed, and after several months I had healed from the surgery itself – healed too well, in fact. The internal scar tissue kept growing, and developed into adhesions that caused pain and new digestive problems. My world fell apart. It was as though I had won the battle but lost the war.
Unable to work even part-time, I became disabled, and began to retreat into myself from the chronic pain and sickness. I searched for other doctors or specialists who could help me. One surgeon – an expert in rebuilding people after severe injuries as in car accidents – said, “I could only make you worse.” And during a visit home on Cape Cod, a local GP who understood my condition put it bluntly: “My dear boy, Jesus Christ himself wouldn’t cut you open.”
Still, I did not give up. I knew I had to find answers. And the only way to do that was to truly face the fact that I was not normal. Little did I know that a fateful encounter would force me to confront my condition head-on…and in the process, help me realize one of my biggest dreams.
© Copyright 2012 James Cole, all rights reserved
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