The steps I took to find my rhythm began many years ago. I grew up watching Dick Clark’s “American Bandstand,” jitterbugging in front of the small, square, black and white television in the living room of our house long before “Dancing With the Stars.”
My steps faltered as an unknown illness pivoted into my life. When all my girlfriends wore training bras and bragged about getting their menstrual period, I still looked like a prepubescent girl. Desperate to appear outwardly normal, I walked hunched over, thinking my blouse would “balloon out” — making it seem as if I had the beginning of breasts. Wanting to cover all my bases, I prayed nightly to God, and fervently believed starting my period would be child’s play in comparison to the miracle of parting the Red Sea for my ancestors as they fled Egypt. The Red Sea may have parted, but no period appeared. I wasn’t exactly dancing to the beat of the Lindsay Hop or the Bristol Stomp.
In ninth grade, I practiced a side-step routine to get out of swimming class and convinced the family doctor to write a letter to the school nurse stating I had chronic sinusitis. I was determined not to be embarrassed by having to undress in front of my female classmates and subject myself to cruel jokes because of how I looked, or rather didn’t look.
Tears on my pillow happened every time I shopped for clothes with my mother, as she voiced her frustration that I was nothing but skin and bones. I felt like the great pretender because I wore padded bras. I had to at least give the illusion I was like the rest of my girlfriends.
[Read: Bagging Rights: How Ostomy Surgery Changed My Life.]
When we’re in the middle of a crisis, we don’t realize it can be the beginning of finding our rhythm, of finding our voice. My crisis came at 17, when I collapsed in my senior year of high school. I’d been dealing with searing abdominal pain, incessant diarrhea, arrested growth and development, and a mass in the lower right quadrant of my abdomen that ached every time I walked. For nearly two years, numerous physicians had the same diagnosis: There was nothing physically wrong with me, I had growing pains or I was nervous and a good candidate for colitis. I was not exactly singing the praises of the medical profession the night I was rushed to the hospital for an emergency appendectomy, and I definitely was not dancing.
I woke up the next morning on the children’s floor of a local hospital. I was a sophisticated teen, and the thought of being surrounded by juvenile rules and regulations was a blow to my ego. As I contemplated my situation, a doctor came in and pronounced matter-of-fact, “You don’t have appendicitis. You have Crohn’s disease, and you weigh 69 pounds.” Actually, I weighed 62 pounds, but I didn’t learn this until later. My psychological health was determined too fragile to handle the startling fact. I felt as if I’d just fallen through a large sink hole in life’s sidewalk. Forget dancing gracefully. I was frantically grasping to hang onto anything that would stop my free fall.
When I asked my dad, “Why me?” he softly said, “Perhaps later in life you will be able to help other people because of what you are going through now.” I didn’t realize it at the time, but my father’s words would help me discover my direction in life.
[Read: Foods That Cause Bloating.]
So began 17 years of dancing, not with the stars, but with Crohn’s disease. I tangoed, two-stepped and did the cha-cha as I dealt with embarrassing diarrhea, frequent bowel incontinence and the necessity of knowing the location of a bathroom wherever I went. I stopped wearing shorts, white pants or a white skirt. How could I hide a humiliating bowel accident wearing them? Soon, normal activities such as going to the movies, eating in a restaurant or going for a leisurely walk were fraught with anxiety. During that time, two bowel resections, high doses of Prednisone and a restrictive diet filled my dance card. I stopped dancing when I saw my bloated, fluid-filled face, a side effect from Prednisone, staring back at me in the mirror. In an effort to find some humor in what I was going through, I joked about my worst nightmare: arm wrestling an 80-year-old woman for a vacant bathroom stall.
When I was 34, my doctor informed me bowel resections were no longer possible since my entire colon and rectum were diseased. It was time to discuss ostomy surgery. Forget dancing. I was horrified. This was the surgery doctors promised I’d never have. My dance partner would now be a shiny red, moist, stoma! “No,” I shouted angrily. “I’m not going to be mutilated.” I resisted ostomy surgery for two years, until I realized I wasn’t living, let alone dancing. The walls of my world had gradually closed in, until the only place I felt secure was in my own home, and in my own bathroom.
With the help and support of two women who had been living healthy and fulfilled lives after ostomy surgery, I was emotionally prepared for the surgical procedure that allowed me to dance again. The fears that others would know I had “the bag,” I could no longer wear stylish clothes, intimacy with someone would not be possible or I wouldn’t like myself never materialized. Why hadn’t I taken this step sooner? I wasn’t ready to learn this new dance until that moment.
I could now embrace life and all it had to offer: walking in the park, enjoying a meal in a restaurant, hiking and the joys of being spontaneous. I could actively listen while someone was talking instead of worrying my body would betray me.
Having an ostomy has afforded me the opportunity to learn dances I’d never thought of trying before. It gave me the chutzpah to persuade a producer of a national television show in 1989 to bring much needed awareness about inflammatory bowel disease and ostomy surgery. I’ve shared my story with nursing and medical students in Washington and Colorado. Inspired by a courageous teen, I worked to get a Restroom Access bill passed in Washington State in 2009. This included testifying before two legislative committees and watching as the governor signed the bill into law. A VIP pass to a Pearl Jam concert, and an opportunity to thank Mike McCready, lead guitarist for the group, made me feel like a singer in a rock and roll band!
Even though my mother always told me I inherited my father’s lack of rhythm, I know she was wrong. I’ve got rhythm and a voice thanks to ostomy surgery.
[Read: How Often Should I Poop, and Other Toilet Topics.]
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Finding My Rhythm: How Ostomy Surgery Helped Me Dance Back Into Life originally appeared on usnews.com
