Beating Crohn’s and Moving On
Porcelain fixtures surround me as I contort myself over the toilet, my intestines heaving to expel the nauseating concoction I’d just ingested. I can still hear October Sky running its course on the living room TV. Only weeks ago, summer had the taste of fresh ice cream, the smell of sea salt. A short time later, the taste of dissolvable laxatives and the stench of bathroom cleaning products took over. I was sixteen years old.
“Well, it seems to be what I expected,” my doctor said a few days after that horrible night and the colonoscopy that followed. My eyes widened and I ceased to focus on any one thing, simply letting the stark white walls and linoleum floor envelope me in confusion. I drowned out his voice and tried to sit still, attempting to not crinkle the medical paper beneath me. I’ll never be healthy or normal again. My teeth clenched down and I held back tears, nodding in recognition of my diagnosis.
I have Crohn’s Disease. It’s a form of inflammatory bowel disease that affects my intestines. At the time of my diagnosis, I had lost nearly twenty pounds in a matter of weeks, went in and out of fevers, experienced frequent diarrhea, and had sores covering the inside of my mouth — I could barely eat. Even though we found a successful treatment a few weeks after my diagnosis, I was frightened by my future prospects — possible surgeries, medicines with life-threatening side effects, you name it.
Even though we did find the right medicine almost right away, my family embarked on a tour of area hospitals looking for the perfect new doctor. I was soon jaded by the entire process and wasn’t very interested in seeing anyone else.
“Don’t let this stop you, though. We want all of our patients to still do whatever they dream of doing in life.” On my umpteenth doctor visit, these words sunk beneath my skin. For once, a doctor went beyond his medical explanations and cut right to the core of my anxiety. I brushed the rest of his clinical rhetoric aside, leaning back into the cushioned office chair and let myself dream again. I let myself breathe again. I realized I had an unrelenting need to prove that I wouldn’t let anything stop me.
After a summer of vacillating between different hospitals and medical practices, though, I felt disoriented, as if I had lost my sense of determination. I spent the past two months unsure of what my disease was and what it meant, or what doctor would take responsibility for the future of my health. But while I was somewhat inured by this game, there were still a few things I was sure about. I was sure that I wasn’t going to let this disease defeat me — somehow I would learn to move past this. There was no way I would let a newfound physical aspect of my life tear down my ambitions of becoming a professional photographer and getting into my top choice university.
My treatment for Crohn’s meant that every day I took a regiment of over ten pills, but it was a small price to pay for some sort of normalcy. The sores in my mouth were gone, I regained my appetite, and my visits to the bathroom were no longer dreadful.
As I returned to school after a summer of distress, I felt as if I had something new to hide, a weakness in a year that mattered most. It was junior year of high school, the so-called “make or break” year that colleges would be looking at. It didn’t take me long to realize that I wasn’t the only one with a private life, nor was it a weakness. I began picking up on little details about the people around me: I discovered that one of my closest friends had money problems at home, and that her family struggled just to get by. I started hearing about this classmate’s illness, or that teacher’s messy divorce. It was as if my ears were more attuned to the reality of life around me. Up to this point, I had simply missed those things — I must have been too caught in the fallacy that everyone has a perfect, happy little life.
In pushing myself to exceed the boundaries of my disease and appear “normal” to the outside world, I realized others were doing the same. I became painfully aware of the little hints I had been blissfully ignorant to. I stopped taking for granted that everyone is healthy and happy. I realized that everyone has a story that’s a fundamental part of who they are.
But now, as I continue with a life largely in remission of my disease, I find myself unsatisfied. Yes, my doctor has been able to give me a treatment that rid me of the symptoms of Crohn’s, but living with a chronic illness is like living in a state of uncertainty. No matter how well I’m doing at any moment, there’s no guarantee of health — I could end up back in those white examination rooms I loathe so much. So as Crohn’s relentlessly weaves itself into the story of my life, I continue to take my pills every day and try to forget about it. I live a life that continues to be fulfilling – one that’s not defined by my illness, and certainly not held back by it. If anything, it keeps me grounded and reminds me that I’m vulnerable just like everyone else.
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Photo by marcos fernandez.
