by James Cole
(from Ostomy Canada Magazine – Summer 2013: Volume 21, Number 1)
I was born on an August day in 1966 with a birth defect that the doctors at our local hospital could not identify. My parents were only told that my bladder was on the outside, and that I was in critical condition. It wasn’t until I was taken to Columbia Presbyterian hospital in New York City that a capable pediatric surgeon identified my condition as bladder exstrophy (BE). He performed emergency surgery and discovered that I had no colon, so he was forced to create an ileostomy – a variation of a colostomy. As my birth defect had also affected my digestive system, it meant I actually had cloacal exstrophy (CE), the most severe type. Despite the doctor’s efforts, my prognosis was poor: at this point in medical history, few CE babies had survived. Yet I had a strong will, and just happened to have come into the world on ‘The Day of Long Odds’ on the Astrological calendar. Within several days I was fighting back – a fight that would continue throughout my entire life.
My ileostomy and lack of colon made me susceptible to frequent fluid loss and dehydration, so keeping me alive was a challenge. My first hospitalization lasted six months, and my early years were filled with repeated hospital stays and surgeries, as doctors tried to build me a functional urinary system. Without a functioning bladder, the ureters – the tubes from my kidneys – were brought to the outside, necessitating me to wear diapers for several years beyond the normal time for toilet training. Having ureters exposed to the outside was dangerous, resulting in frequent hydronephrosis – the backing up of urine into the kidneys – and infections. Despite my condition, I was blessed with loving parents and siblings. I learned to walk and reached many developmental milestones ahead of schedule. I was even able to attend preschool and later public school with the help of caring staff and teachers.
My early years were nevertheless a struggle, filled with frequent pain, and emergency operations. Yet whenever I was not sick or hospitalized, I had the happiest childhood a kid could imagine. We were The All American Family. I lived in an historic farmhouse with a barn and woods where I spent countless hours playing. We did birthday parties, vacations at the lake and beach, all the things other families did. When I was seven, ostomy products for young children finally became available, allowing me to finally shed the diapers, a huge a milestone. I still required three pouches: two for my ureters, one for my ileostomy, which came off frequently. This did restrict my life in some cases. For example, I was never able to spend the night at a friend’s house or do as much physically as my peers, and I would often end up in the ER from something as simple as a stomach flu.
At age twelve, I underwent a major reconstruction of my birth defect, when a talented surgeon built a urostomy, which allowed my ureters to be placed back inside my body where they belonged. This safer and more dependable urinary outlet eliminated the hydronephrosis and infections, marking a dramatic improvement in my health. It also made it much easier for me to care for myself, now that I wore two pouches instead of three. I became more independent, and continued the predictable process of growing up. And at age 14, the same surgeon rebuilt my reproductive system. After this ‘final’ corrective surgery, my doctor basically said, “Have a nice life.” Yet I was far from normal in appearance and function, and the trauma of so many surgeries resulted in my lagging far behind my friends in terms of growth, let alone my entering puberty.
It was during these painful adolescent years that I concentrated on my artistic talents. I had discovered filmmaking at a young age, and I continued making movies during the lonely Junior High years. After my mother and I moved to a small town on Cape Cod during high school, my film endeavors attracted many new friends. Thus began one of the happiest times of my life – one ironically also marked by complete denial of my exstrophy…a state in which I would live for many years.
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 importantly, I was well. Now that all of 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 from 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 me. 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 offlimits to everyone, including myself…until something went wrong.
That first ‘something’ was a terrible sickness in the winter after I graduated from 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 from 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 (WDI) 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 began to decline. I experienced painful digestive problems that 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.
It was a dark time. Then, in December 2001 I ran into my friend Jay Holben, a talented director who, like myself, had adapted a Stephen King story to film. He was preparing to make another short film, but needed a script. I didn’t have a short script, but I did have a short story.
Several years earlier, I had finally written about my condition with the story “Hot Shots.” Based on my urostomy surgery when I was twelve, “Hot Shots” had never been submitted for publication, and I never thought it would get much exposure. Nevertheless, I sent it to Jay, hoping that he would like it. Since it was about kids in a hospital, I was convinced he would not be interested in actually filming it as a movie. To my surprise, Jay was more than interested: he was committed.
For the next couple months, I labored to adapt my story into a shooting script. I ended up doing sixteen drafts, thrilled as my writing evolved into an even more powerful – and honest – story about both the surgery, and how hard I struggled to hide my condition. Jay kept me involved in the pre-production process, and I was thrilled to participate in the auditions.
On March 1, 2002, I walked onto the set of The Night Before, my first professional film. It was like walking into a scene from my own life – a recreation of the hospital room in which I had spent six weeks. The movie was shot in four days, and everything went perfectly: a happy set with an amazing cast and crew. It was magic. I had little involvement during the film’s postproduction, however, and continued struggling with my health, still searching for answers. Yet, The Night Before had renewed my creative spark and given me something to look forward to. It had given me hope.
That hope translated into a fierce determination to somehow heal myself, and it was during this time that I discovered the Association for Bladder Exstrophy Community (ABC), and the bladder exstrophy community. I began to participate in online forums and message boards, and for the first time in decades I discovered that I was not alone. There were others out there like me, and connecting with fellow exstrophy adults, as well as parents of children with exstrophy, gave me purpose. I was able to offer help and compare experiences, and in the process, discovered much about myself.
Just as The Night Before was completed in the spring of 2003, it won the International Cinematographers Guild Showcase Award. The awards ceremony took place at the Directors Guild of America in Hollywood. Beside the obvious thrill of watching my first produced story in a big theater, I was witnessing my own life up on the screen. Most importantly was the reality that one of my biggest secrets – the fact that I wore bags and had exstrophy – was being shared not just with friends, but also with an entire audience of people whom I did not know, and who did not know me.
Two months later, we had our official premiere on the Warner Bros. Studio lot, attended by many friends and family. It was a thrilling experience, but The Night Before soon gained a life and meaning beyond the film festival circuit. Only a couple months after its premiere, I attended my first ABC conference in Milwaukee as a guest speaker, where I presented The Night Before to a conference room of people with exstrophy patients, parents, doctors and specialists; an audience who understood its story on a far deeper level than most of the population.
The Night Before has since been shown at exstrophy-related conferences in New York, Toronto, Seattle, Pittsburgh, as well as overseas in Australia and the United Kingdom. I was able to attend several of these events, and my story has gotten more exposure than I could have ever imagined.
Most remarkably, the act of telling my story – be it in person speaking at conferences or through online forums – has expanded my horizons and changed my life. Exstrophy is no longer a shameful secret: it’s simply what I was born with. Coming to terms with my condition and accepting myself has helped the process of healing myself, physically and emotionally.
And my health has improved in recent years, through a combination of complementary medicine, changes in my diet, and stress management. This improvement has allowed me to resume pursuing my dream of a career as a paid writer. Living with exstrophy is still not easy, however; I continue to suffer with pain and fatigue, but being able to help others with exstrophy or similar medical conditions – often on a daily basis – makes me feel that my suffering is not in vain. I am lucky to be alive. I know I am here for a reason.
© by James Cole 2012. All Rights Reserved. James is from Burbank, CA
“A Life of Long Odds” first appeared in the Summer 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.