Coping | Ostomy
I first want to thank God for giving me life. I thank my parents for birthing a miracle and growing and grooming me to be a conqueror and a pillar of strength. While I was yet in my parents womb, God knew the plans he had for me. My parent’s plan did not involve one of their twin daughters developing a rare form of vaginal cancer (Rhadomarsacoma) at the age of three. As a result, I have permanent colostomy and urostomy. I will be 46 at the end of year. WOW! 43 years with ostomies! I cannot tell you how I felt as a child dealing with this diagnosis. I was so young. I wondered for years how my parents coped, what their initial reaction was, and what resources were going to help their daughter. My care began at University of Maryland Hospital in Baltimore, MD. After a second opinion, continued care, chemo and radiation treatments, I underwent many surgeries with the great doctors/nurses and surgical team at Sloan Kettering Memorial Cancer Center. I spent all of my childhood and adolescent years there.
I had a challenged life growing up, as you might imagine. It was difficult starting school, interacting with my peers, and even being around my family. The ridicule of name-calling by peers, “Something smells,” or, “I heard she wears a bag.” Becoming a teenager was better, but by that time my insecurities set in, I felt sorry for myself, felt rejected, and hid behind my outer appearance and my work. How would I find peace and acceptance? It was through my faith, support from family, doctors, caretakers, social workers, and friends. I did not belong to many support groups back then, but in recent years, I joined several support groups, met people that can relate, found a place where I can share, and not feel like I am alone. Groups like Inspire, UOAA, and the American Cancer Society local chapter, ostomy groups through Facebook, Twitter and Great Comebacks. I am no longer afraid to tell my story.
As I read about Rolf Benirschke, I was inspired. Who would have thought, an NFL kicker with ostomy? He found a way to beat the odds. Maybe he had nothing to prove to others, but he proved that champions always win, no matter what score is. Winners never quit and quitters never win.
Our ostomies do not dictate who we are or what we will become. The odds that were against us failed. We are survivors, we are more than we have become.
I did not let my circumstances or situations stop my dreams and aspirations. I have been a runway and editorial fashion model for over 17 years, yes, with two ostomies. My story has been featured in several magazines and publications, recently on cover of the Phoenix Magazine, through UOAA. In addition, I am now the author of “Pretty Girl Blues,” my first autobiography detailing my life as a cancer survivor and having ostomies (pouches) all my life; www.prettygirlblues.com . I am delighted, happy, and blessed for this journey. It is opening more doors than I would ever imagine. I learned that my ostomy was not a burden, even though it felt that way at times. I can say now, it is a blessing. There are still struggles and challenges, but it has made me who I am today. I am very thankful that God gave me a story to help others suffering with a sickness, low self-esteem, health issues, be it cancer and having an ostomy. No matter what the disease or circumstance may be we all have a story in us. I used to say, “Why me?”, but discovered, “Why not me?”
We are opening doors for others; we inspire to live life to the fullest.
THANK YOU FOR SHARING YOUR STORY!After a hellish surgery ( just your average resection gone horribly wrong due to complete incompetence and underpracticed surgical team), I had 2 ostomies…even though they were temporary, I know that the inconvienance, embarrassment, and overall gross-ology of it all can’t compare to the independence and (ironically ) a better quality of life with ostomies. I actually felt healthier…I gained weight when they added a picc line & TPN…and mind you the stoma was a mean and nasty one…the location was only about an inch from my stomach…always a joy to be able to identify all you have ingested…plus a small stricture was also an inch away from the stoma…talk about painful…and it always leaked and never stayed stuck to my skin…however…it allowed me to attend our daughters grade school dance.I slow danced with my husband for the first time in a very long time…for a few minutes I felt “normal” and no one even knew the bags were there…That was priceless!!! There is life with an ostomy!!!
We are more than we have become Audrey with our ostomies. We can be and do anything we want, gotta BELIEVE !
Jearlean, YOU are an inspiration to all ostomites!!! thank you!! God bless!!