Silent Suffering

I was 14 when I first found blood in the toilet. I was 14 when I decided not to say anything, not to get help, not to look for an explanation. It was a silent suffering, and I took it very slow. Thinking nothing about my insides, or the wretched environment that was slowly developing in my bowels, I continued living as if nothing were happening. But every day my fear of the bathroom grew. I wasn’t getting better. The pain of a bowel movement would make my body shake, my arm veins would expose themselves like slugs under my stretched skin, and my eyes would close into a state of imagination, an escape.

I was 14, and the topic was embarrassing. Nothing in my rational mind gravitated toward telling them about my problem, my daily struggle. The act of going to the bathroom had become so ritualized and the pain so commonplace that my body had normalized the facts. It was simply a given that at least once a day I would have to endure an excruciating episode that ended with the clear water of the porcelain bowl turning a shade of crimson that I came to associate with my cowardice and ­insecurity.

At my sister’s graduation I broke down. I told my parents what was ­happening to me. Soon I was face to face with my doctor, who was baffled. No hemorrhoids, no nothing. “Stop weightlifting until it gets better,” he suggested.

“Serendipity,” I told my parents. “Everything got better.” I lied.

I was 16 when I began going to the bathroom more frequently every day than most do in a week. Going to the gym became a battle between my desire to train and the rumbling of bowels begging for acknowledgment. Running on a treadmill became an internal dialogue. Just two more minutes. I can do this. My body would respond with a low growl, a thud like the tapping of knuckles on wood. This sound would quickly escalate, accompanied by pressure, as if someone were standing on my abdomen. Then I was competing in a race, a 50-yard dash to the men’s room, as an ­audience of fortysomethings looked on in awe at the boy with diarrhea. Over the course of a workout I would go four or five times, and people next to me would inevitably ask what kind of training regiment I was doing where I spent more time in the bathroom than on the gym floor.

I never considered myself handicapped and never wanted to admit I was sick. When I was having difficulty sleeping because of the problem, I thought long and hard about bringing the topic up again. My parents had no idea what was going on, partially because I had lied, and partially because I simply could not articulate what was happening to me. I did not know how to craft a simile to describe this experience to my mother. No one had ever designated a time of day for these sorts of discussions. I knew it was not dinnertime conversation.

I finally broached the topic and was sent to a gastroenterologist. We talked. “Evan, I’d like to examine you, if you don’t mind.” Well, I do mind, actually. I’m 16, and I’d rather you not touch me. I’d rather you not discover my stigma, the one source where all my guilt and anxiety and imperfection manifests itself in crevices and scars. My parents left the room, and I was alone with only cartoon wallpaper to distract me. I closed my eyes and imagined I was home locked in my room. Eventually he finished, and what he described made me think of a small San Andreas fault. “We’re going to do a colonoscopy and an endoscopy to see what is really going on.”

Then I was staring up at the ceiling, a patchwork pattern of porous stucco paneling, and an anesthesiologist handed me a mask.

“So what’d they find, Dad?” My dad didn’t say anything, just handed me a picture. No artist, no anatomist, no believer in the beauty of the human form could have found anything positive to say about my intestinal tract. The picture was grainy with ulcers and burning with inflammation. My intestines were a visual representation of a napalm blast, totally unfit for absorbing nutrients. “The doctors said you have Crohn’s disease.”

Crohn’s is an autoimmune disorder characterized by inflammation and bleeding in the digestive tract. When the intestines become inflamed, their ability to absorb nutrients and water is drastically compromised.

In many ways I never truly reached adolescence because my intestines decided to rebel. I had always felt like a kid – just a kid doing calculus, just a child driving a car, just a boy drifting through life defining himself through grades and relationships. And then I saw the picture of my spotted stomach, my ruby intestines, and I knew that perfection was a misnomer, a paradox even.

Unfortunately, this part of my life had to happen at a very inopportune time. Like any young man, I wanted to spend my time with friends, and I wanted attention from girls. I distanced myself and tried to disconnect. In many ways it was the only thing I felt I could do. My classes were demanding, my drive never waned, and I did not feel comfortable discussing the personal aspects of the issue. I had other things to worry about. So I endured unnecessary suffering as a casualty in the search for youthful ­perfection, an ideal that I felt I had to live up to, only to find it doesn’t exist.

As Yahia Lababidi said, “We all have handicaps. The difference is that some of us must reveal ours, while others must conceal theirs, to be treated with mercy.” I always felt that I had to conceal my problem to be treated with mercy, not to be chastised for having to handle this and have doctors touch my body in ways that most people would find revolting. When I was diagnosed I finally told my friends. The outpouring of support from them as well as teachers was enlightening.

I don’t hide my pill bottles or lie to my friends ­anymore. Crohn’s is simply another part of me. On my wall above my bed, next to the prom and winter formal pictures, I hung the picture of my colon, all swollen and crimson. To me, it is more than red hues. It is a symbol of my rite of passage, my own personal struggle to grow up.