“A Life of Long Odds” Part 1 of 3
By James Cole
I was born on an August day in 1966 with a birth defect 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. 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, the most severe type. Despite the doctor’s efforts, my prognosis was poor: at this point in medical history, few cloacal exstrophy 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, something impossible for me. 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.
© Copyright 2012 James Cole, all rights reserved
If you would like to contact James Cole you can do so by e-mail us at email@example.com with James Cole in the subject line, and we will forward him all e-mails we receive.
Part 2 of “A Life of Long Odds” – Film making leads James Cole to Hollywood, where he eventually has a short film produced, based on one of his short Stories – “The Night Before” – Coming in Part3 in February 2012
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22 Comments Add yours
I am loving each one of your stories. Although I haven’t watched “The Night Before” yet, I know it’s something I want to see this year. Thank you all for sharing your stories. I know that they will help others immensely.
Thank you, Bobbie and Carol! I really appreciate it.
Thanks so much for sharing this story. I find these stories uplifting in our times of tribulation. I am looking forward to part 2 and 3!
Well written Jim! It was a privilege for me to share your school years as a wonderful friend of Alex and family.
Thank you, Helen. Growing up with Alex and your family meant a lot to me.
You are indeed a story of strength, courage and resilience. This is a wonderful first part to a
series that should help others in living in their strengths and not their weaknesses. You are
a hero each day that moves you forward – we look forward to the next two parts of your
Marilyn and Mike – thank you! I emailed you links to Parts 2 and 3. I hope you are able to read the rest of the story!
Thanks for sharing your story Jim. I’m looking forward to the next segment! Your courage and tenacity is admirable and should be an example to the rest of us.
Thank you, John. I actually emailed you the links to Parts 2 and 3. Sorry for the confusion!
Great writing and photographs!
Thank you, Yelena! I hope you enjoyed Parts 2 and 3 as well.
Dear Jim, Your courage shines so bright and I hope your story will soon enlighten and educate people, especially those in the medical community, on how to compassionately help children who are going through traumatic illnesses. You have so much to share and are a tribute to your family. I look forward to more of your story, learning more about you, your difficult journey and your family. Elaine Ipswitch
Thank you, Elaine! Your thoughtful comments mean a great deal to me. I will send you links to Parts 2 and 3 (I’m not clear from your comment if you only read this installment – Part 1.)
Thank you for sharing your challenges and how you overcame them. You are truly an inspiration to me and I am sure many others! Such a perfect time for me to hear this story. I love the picture of you with your family….that’s exactly how I remember you all. Lots of love to you James.
Thank you, Pamela. I will email you the direct links to Parts 2 and 3 (since you are commenting in “Part 1” I think there’s a chance you have not read the second and third installments here on the site!).
Dear Jim, Finally sat down to read “Part 1”. It must feel good to write it all down and put it out there for the world to read. All I can say is…you were meant to be and I am very moved by your bravery. Georg
Thank you, Georg! I appreciate your feedback and hope you enjoy Parts 2 and 3!
Dang for a min I thought I was reading about me hope all is well
Hi, David. Thanks for your comment! Assuming you also have exstrophy, just wanted you to know that there are a couple excellent private groups on Facebook (two of which I am co-administrator), and if you are on Facebook I would be happy to sign you up if you are interested.Feel free to contact me at firstname.lastname@example.org