Editor’s Note: This is the final part of a 3 part series by James Cole – A Life of Long Odds – and we at Courage to Shine would like to thank James for showing the courage to help inspire us and to give us the chance and privilege to read about his story. Also please take the time to make sure you read all the way to the bottom of this posting, because we have posted the short film The Night Before which James Cole wrote about his hospital stay in 1979, and it is not a movie that should be missed.
“A Life of Long Odds” Part 3 of 3
By James Cole
In August 2001, I had major surgery to repair an inguinal hernia. Although the operation was successful, I developed internal adhesions – scar tissue – that debilitated me with pain and digestive problems. I became unable to work, and could not find any surgeon or doctor who could solve the problem. 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 that 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 post-production, 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 important 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 filled 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 medical approaches, both traditional and alternative, 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.
© Copyright 2012 James Cole, all rights reserved
James Cole & Courage to Shine is proud to present:
THE NIGHT BEFORE, a film by Jay Holben, and written by James Cole
The Night Before Website http://www.adakin.com/thenightbefore/
If you would like to contact James Cole you can do so by e-mail us at firstname.lastname@example.org with James Cole in the subject line, and we will forward him all e-mails we receive.