The Back Story
Long blond hair and eyes that hit every note in the blue spectrum, at only eleven, she was destined for success. She had the looks and the brains and a secret. This secret, she hid for months. Not a soul, not her best friend, not even her parents knew. Then her 12th birthday party came. She had looked forward to it since Christmas because eating out at The Outback was what a young lady does and it was her mom’s favorite restaurant too so what could go wrong?
When that evening in January came and all her family and friends and her mom’s friends were all gathered around to celebrate, her spirit was crushed. After months of hiding, people had taken notice. Her small, underweight appearance was finally brought to the forefront of everyone’s mind. Her dear mother, presumably not thinking, all but announced to her guests that she was “anorexic”. Aside from the fact, that her private conversation had obviously gotten everyone’s attention, her mother didn’t skip a beat and continued on ignoring the birthday girl until her conversation had ended.
Stunned in horror at the words that had been laid before her, she sat there staring into space and away from her family and friends. Through tear filled eyes she could see a young woman crouch down beside her. Shire. A beautiful, 20-something brunette that felt for the little girl. Shire asked for the birthday girl’s name and after revealing it, Shire told Shay, “It doesn’t matter what people say to you, you know who you are on the inside. People used to call me all kinds of names growing up. Ya know Worcestershire sauce. That’s me. And I embrace it now cause it’s only words. They can’t hurt you.”
In the following years, the doctors finally diagnosed Shay with Ulcerative Colitis. A few years after that, Crohn’s Disease was the final verdict. Either way, the little girl had no idea what was in store for her.
Let’s fast forward many, many years. It has been a very long and trying road but here I sit writing the highlights of my unhealthy life. As mentioned before, I got sick when I was 11, misdiagnosed at 14, correctly diagnosed at 16 and then added a few more chronic diseases to the list along the way. PSC (Primary Sclerosing Cholangitis) also came when I was 16.
Then on my 28th birthday, I got the “are you sitting down” phone call from my gastro. Not only did he find that I’ve had Celiac disease for years but that I had stage II Colon Cancer as well and surgery needed to be scheduled immediately. Once again, happy birthday to me.
Two months later, after getting as many of my ducks in a row as possible with a husband and two sons, the doctors took out all of my large intestine. I was somewhat lucky in the fact that they were able to reconnect my small intestine to my rectum (J-pouch) and I am still bag free. However, I often wonder if I made the right decision in the surgery. I trusted my doctors when they said there was no other option but removal.
Several years later, I’m still struggling with this new body of mine. I have good days and bad days and really bad days but I’m still here. I know that I’m fortunate to have survived all that my body has thrown at me but even after all this time I find it hard to express my story.
“I am a cancer survivor” just isn’t one of my sayings. The people I care most about have repeatedly told me that I should be proud of the fact that I kicked cancer’s ass and I should tell anyone, who’ll listen, my story. But I can’t. I didn’t have to go through months of chemo or any treatments for that matter. Logically, I know that doesn’t make me any less of a survivor or that I’ve suffered any less, but I digress.
So where to go from here? I suppose I learn to embrace all my “C’s”, as I so affectionately call them, and continue to take one day at a time, music blaring.
Music of all facets is what has helped me get through all these years. No matter my mood, I can find a song to help me ease whatever pain that moment brings. I can fully attest to the power music holds. Not the Crohn’s, PSC, Celiac or Cancer has been able to convince me otherwise.
I write this in the hopes that there is someone else out there that may feel the same way I do or has had the same experiences. And to inspire those that are beginning their journey down the yellow brick road that is “tummy troubles.” The emerald city is within your reach, you just have to have the spirit and good music to get you there.
♪ Listening to 30 Seconds to Mars ♪