Part 1 – “A Life of Long Odds”
Part 2 – “A Life of Long Odds”
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.
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23 Comments Add yours
Bravo! James you had a difficult struggle growing up and I hope in a few years you will be helping me with my amazing son. It is hard to raise him normally without having other kids yet..I really try not to hold him back. Trennor should be crawling very soon, a feat for him with his hip dysplasia(spelling is off) and something we weren’t sure he would do like “normal kids” As I told the woman who insisted that God would heal my son overnight. No it won’t be overnight and it won’t be easy and he is how God made him…Perfect, Just like you are James!
Thank you, Megan! I am moved by your thoughtful comment, and happy to help in any way I can.
Well written James! I thoroughly enjoyed reading about you and your lifelong struggles. I am a mother with an 8 year old daughter born with bladder exstrophy. She was born in NY Presbyterian Hospital and has had a few surgeries since birth. I was lucky because we found out while I was pregnant that our baby would be born with this thing that I had never heard of. We had about 4 months to prepare and get the right surgeon in place. We have had our struggles and I am afraid that when she hits puberty things will become more difficult for her. I can see how your story would definitely help other children born with this unique condition. Thank you for telling it!
Thank you Cheryl. I apologize for taking so long to reply – I didn’t realize there were any comments to my “Courage to Shine” story until recently!
I hope your daughter is doing well. BTW, if you are on Facebook, there are several great exstrophy-related groups for parents and those with ‘BE’ as well. If you are on Facebook, feel free to look me up!
Thank you James for sharing your story, I completely enjoyed reading it and so looked forward to each new segment. I am so happy for you to overcome so many obstacles, especially considering the time period you were born in with so little known about his.
I chose to have a child with bladder exstrophy, imperforate anus, hip dysplasia, ambiguous genitalia, tethered spinal cord, among other little things and I hope I am doing the right thing by him and I have so so much to learn. I am so thankful for people like you who share their stories, experiences and knowledge so that we may all learn from each other. I dont know what our little guy is going to face in his future and I pray we are strong enough to help him along.
Again, thank you, keep sharing
Lisa — thank you so much for your thoughtful comments. I hope your child is doing all right, and know that I would be happy to correspond and be in touch if you wish. I’d like to help. Also, if you are on Facebook, there are several excellent groups related to bladder exstrophy – where both parents of BE kids and BE adults participate and help each other. If you are on Facebook, please look me up!
Thank you James for sharing your story. I’m looking forward to let my husband know about your story since he was born 1969 with BE. He will definately relate to some of the experiences that you went thru.
Thank you very much for sharing.
Rachel, Calgary, Alberta.
Thank you ,Rachel. I hope your husband is doing well. There are great online communities that offer support for those with exstrophy, and their families as well – some on Facebook.
James (aka Jimmy!) – This is a beautiful piece, but it does not do you justice in that you don’t talk about your amazing artistic talents beyond filmmaking. I know you as as sweet kid and kind man – and an uber talented artist. Please post a ‘Part 4’ dedicated to your brilliant drawings. You are amazing.
Thank you Susan! Well, the article is really about how I overcame my birth defect and how my film and writing has expressed that. But thank you for mentioning my artwork. I would have included info about it, but there just wasn’t room (condensing my life of experiences into 3-750 word installments is not easy!).
Thank you so much James for sharing your life experience. I understand a lot more now. Great writing too ! An absolutely effortless read ! Thanks so much. 🙂
Thank you, Pierre! “An absolutely effortless read” is the highest compliment a writer can receive! 🙂
I agree that the text is effortless to read, but the difficulties that you have had to overcome are incredible, and your strength in the face of it all is truly inspiring. (It makes high gas prices seem a rather trivial concern!) And the short film is magnificent; it should be required viewing in every medical and nursing school. In fact, I can’t imagine there is anyone who wouldn’t benefit by seeing it.
May your good works continue to touch the lives of an increasing circle of people. Best wishes.
Thank you for your comments, Derek. They mean a great deal. I do hope my story can be used to educate medical personnel who care for children. Thanks for reading!
Wonderful article Jim!
Peggy – thank you so much for reading, and for your comments.
I can’t begin to tell you how impressed I am and how proud I feel to have known you in school during those difficult years you have written about. Being a teacher and having you in class, I will say that you never made me or anyone else feel sorry for you or never did you ask for special treatment. I look back over those years and remember your developed sense of humor and the fun you added to my art class. I have already begun to share your story to my friends and when I get back to school, I will show your movie to my students hoping, they will feel touched as I was.
Thank you, Mrs. G.! It means so much to be in touch and have one of my teachers know what I was living with during those difficult years. You made such a positive impact on my life. Thank you!
Your story was very inspiring. You came through a time of little knowledge yet you have done so well. Medical knowledge is changing all the time with BE. I wish the support had been there for me when my daughter was born. I felt all alone. My daughter is now 26 yrs. old. She doesn’t like to talk about her medical or have any special attention made to her. She has always wanted to be normal. My husband and I raised her as normal as we could and gave her every opportunity to do what she wanted in life. Her urologist also incouraged her to do what she wanted. She did have obstacles, surgeries and hospital stays to deal with. It has been hard. Her hardest challenge has been having a baby. She lost her first and only child. An OB doctor told her she would just die and she had no business being pregnant. So, she has just about shut down. I pray that she can over come her medical shyness and be sucessful in life. I hope you continue to do well. Thanks for sharing. It gives hope to others. Laura
Laura, Make sure you also show your daughter the story about Misty Blue Foster also here on Courage to Shine at https://couragetoshineblog.wordpress.com/2012/06/22/misty-blue-foster-courage-to-shine-role-model-of-the-month-for-june-2012/ If you daughter wants to open up e-mail us a email@example.com