A Gut Feeling

A week ago, I was with one of my best friends, Sophia when I disappeared to the hospital for a few days. Later while we were having lunch together, I explained that the doctors were testing to see if I had an illness, only to discover their assumptions were false.
“But you do have an illness, Brooklyn.” My fork paused before my lips, surprised, and then I stuffed it into my mouth and shook my head. Taking advantage of my silence, Sophia persisted: “I know you have Crohn’s disease, Brooklyn.”
Swallowing my forkful, I protested: “I don’t. What makes you think that?”
“I mean, it’s obvious. I’ve known it for years. Your mother talks about it all the time, there are books about it all over your house, you have way more doctor’s appointments than anyone else! Did you think I was stupid?”
To my further bewilderment, she began to cry, “I’ve been waiting for you to tell me. My mom asked me why I didn’t just confront you about it, and I assured her that you would tell me when you were ready. Sometimes when we would go through a period when we spent a lot of time together and we were especially close, I thought: maybe she’ll finally trust me enough to confide in me. But you never did. I thought we were close enough friends.”
Panicked by the emotional impact of her words, I tried my best to quell her tears by saying that it wasn’t just her, and that I hadn’t told anyone. After a feeble attempt to explain myself and resolve the social contention, we turned our attention to the check and I tried to pretend as if she hadn’t just confronted me about my betrayal.
After a stiff hug, I walked back to my house alone, recovering from my shock and ruminating about her words. She was right. We had been friends for four years, she knew me like a sister, and I trusted her with every other detail of my life without fear of judgement. Why should my disease be an exception?
As I picked apart the giant Jabba the Hut sculpture in my closet that was a pile of my clothes, I excavated my diary from fourth grade. Intrigued by an excuse to abandon my chores, I hopped on my bed and began to flip through the pages. I deciphered the large, messy handwriting and misspellings, reentering my simple-minded, elementary school brain. It seemed as if I had spent little time with other kids my age, and preferred to read or space out during the weekends. Here is an excerpt:
My procedure is in two days. I am sitting in the red chair and cannot eat anything, only clear liquids. I am still waiting for my jello to be ready to eat. I’ve never had surgery and I don’t feel scared because it is not major and I’m going to be put to sleep.
Having just transferred to a private school, I was new to my fourth-grade class. I spent most of my time in the school’s bathroom stalls, and recognized my peers by their shoes. I experienced waves of writhing, abdominal pain on a daily basis, but I kept my discomfort a secret so as not to worry my parents. Other than being on the smaller side, I seemed no different from the other gregarious nine-year old girls.
My parents first noticed something was wrong when my sister, Mattie, had asked me to weigh myself for her kindergarten measurement project. After learning that I weighed less than my six-year old sister, my parents consulted my pediatrician. She showed us my growth chart: over a few years, my height and weight had dropped from the ninety-fifth to the fifteenth percentile. I was immediately referred to a gastroenterologist, named Dr. Snyder.* He put me through a series of diets and tests in an effort to trace the route of my mysterious growth decline. Conjecturing I had Crohn’s disease, he scheduled a colonoscopy and endoscopy for me. For the preparation, I consumed nothing but clear fluids for three days; on the final day, my father made me chug two sodas that would clear out my system completely. These speciously inviting, cherry and lemonade beverages masqueraded as the yummy drinks I was only allowed to have at Grandma’s house; in truth, they were glass bottles filled with poison meant to purge my digestive system from mouth to anus. My empty stomach refused to accept these toxic sodas, as I forced them down my esophagus in under an hour. I grasped the metal edge of the kitchen sink, vomiting the neon liquids and imploring my father through sobs to stop. He quietly refused, measuring the volume of my vomit and handing me an equal amount of soda that would compensate for what my body had rejected. My bowels became a garden hose overnight that emptied every last remnant. To top the discomfort with humiliation, my father woke me at five am to insert a plastic tube in my anus to administer an enema for the final cleansing. It would be six years before I ate anything lemon or cherry flavored again.
My parents took me to the colonoscopy room, where I changed into a hospital gown. I thought the giant white and blue checkered outfit was less than flattering, so I fashioned a belt by wrapping the strings twice around my waist and securing them at the front with a bow. The nurses laughed at my attempt to be stylish when they knew I wasn’t going to leave the white walls of the hospital. Dr. Snyder informed me that a small robot with a camera would be lowered down my throat and into my intestines. I told the anesthesiologist that I was worried about waking up during the procedure, and she assured me that I would be unconscious the entire time.
When I finally awoke, weak and blurry-eyed, I was handed some water and crackers. I leaned on my mom as she guided me to the bathroom, and helped me change out of my gown and into my flowered dress and red boots.
During my next doctor’s appointment, Dr. Snyder solemnly informed my parents and I that I had been diagnosed with Crohn’s disease. He explained that my colonoscopy revealed a series of ulcers that lined my small intestine. I had been unable to absorb nutrients because my immune system had been mistaking microbes, such as bacteria that is normally found in the intestines, for foreign or invading substances, and had launched attacks. I was prescribed to take eight Pentasa pills, two iron pills, and three weight-gain drinks a day. I was uncomfortable with swallowing so many pills at once, so my parents allowed me to take them with Ben and Jerry’s ice cream. Sugar was banned from the house, and I savored my younger sister’s envious expression as she watched me spoon the Cherry Garcia with four, large Pentasa pills.
Over the next few years, I went through a series of medications to suppress my immune system, and I continued to shrink. By seventh grade, I was sixty-eight pounds and had the mental and physical development of a fifth grader. I struggled to relate socially with my pubescent peers. I spent most of my free time with my younger sister’s friends, who were closer to my maturity level. Mattie and I got along well in the same social circle, except for when we competed for friends. After I had once wooed her playmate to my room, Mattie broke down in tears, frustrated that it had seemed I had an uncanny ability to sweep all of her friends away from her. After all, I had the title of the cool older sister. In reality, I was little more than another one of Mattie’s classmates.
It may have been social rivalry that motivated my sister to spread rumors that I was anorexic. My grayish, golem-like* appearance coupled with the fact that I allowed everyone to eat the delicious pasta my mom packed for my lunches gave rise to the rumor. It travelled quickly amongst the one-hundred twenty children in my middle school, and I soon became the object of derision. After Mattie and her friends had repeatedly criticized and jeered me for my alleged eating disorder, I came home crying to my mother. During dinner that evening, my parents gently told Mattie that I was going through a difficult time with my health, and that rumors were the last thing that I needed.
After I had been ostracized from my middle school, I hated people knowing about my disease; I didn’t want people to worry about me, and I dreaded being the center of negative attention. I told my mother she was banned from telling any of her friends about my condition. When I found out she had told our construction worker, I brought her to the basement where no one could hear me and castigated her for disclosing my private information. She never understood my humiliation in others knowing about my illness.
My discretion about my health and my mother’s converse loquacity carried to my doctor’s appointments. Each time my mother and I visited Dr. Snyder, I would try to pretend as if I were perfectly healthy, insisting that my feces were well-formed, stomach pain was rare, and that I spent no more time in the bathroom than any average kid. When it was my mother’s turn to speak, she took advantage of the opportunity to undermine everything I had previously said; she went on about the watery texture of my bloody diarrhea, how I was experiencing sharp pain on a daily basis, and how I practically lived in our family’s bathroom. I was humiliated yet again, feeling as if she had threatened my credibility with the most important (albeit only) professional in my life. Dr. Snyder explained that it was important that he get my mother’s opinion, because sometimes people who are severely sick are in denial.
It was September 2007 when I began applying for private high schools in San Francisco. Our guidance counselor told our 8th grade that our admission not only required us to be rigorous academics, but stellar athletes. My competitive classmates, who were leaders in dance, basketball, soccer, and volleyball, all had shining applications that reflected their well-roundedness. As I hunched over my applications in my parents’ bedroom, I stared at the prompt: Which athletics have you excelled in? Please write about your accomplishments below. I tried to conjure up some prodigy extracurricular activities. I imagined myself as the captain of the softball team, racing to home base at the close of the game and being raised my teammates while they cheered. I imagined myself as my ballerina friend Madeline, playing Clara in the Nutcracker and curtsying to a roaring crowd in my sparkly tutu. In truth, I had been too weak to pursue any of the sports at my school. I had spent most of my childhood either at school or in the hospital. My thirteen years of life had been consumed by schoolwork, fatigue, and pain- I couldn’t think of anything worthy to write on my high school application.
My dad entered the room, and asked me how my applications were coming. I began to sob, “I won’t get in, Dad. I have nothing special to say about my life. It’s not fair. I’ve never been a good athlete, I’ve never been class president, I’ve never won anything. If I’m not accepted anywhere, how am I going to be a good scholar? What’s special about me, Dad?”
“You have a great lemonade business with your sister; what if you wrote about that?”
“No one cares if I pick my neighbor’s lemons and make drinks to sell. That’s not important to high schools, they only take stars, and I’m not a star.” I began to cry again, and my dad cried with me. He knew I hadn’t had the opportunity to accomplish what would impress the high schools, and I had little chance next to my peers.
Dr. Snyder put me on a Remicade, a heavy immunosuppressant medication. He explained that it was meant to shut down the part of my immune system that was attacking my intestines; the consequence was that I would have a slower recovery to sicknesses such as the common flu, and if I travelled to third world countries, I would surely die of tuberculosis because my immune system would be unable to fight it. Every six weeks I told my peers that I had a dentist’s appointment, and left early from school to sit in a chair in the hospital for four hours as I got my Remicade chemotherapy. I would go with my mother who was inconveniently needle-phobic, and would abandon me every time the nurses came to give me the IV. I have continued the treatment every eight weeks since.
Although sitting in a chair for several hours with an IV was a less than ideal Friday-night activity, Remicade proved to be by far the most effective treatment. This heavy drug shut down my immune system so when my family travelled to exotic places in Africa, where diseases were prevalent, I had to stay at home. That said, it was powerful enough to diminish my symptoms as quickly as they had developed. In short, the yin of remicade overwhelmed the yang.
When I left San Francisco, I left behind my childhood: my sickness, my feeling of being outshone and ostracized, my isolation, the old, Victorian houses, my loving neighborhood community. After drowning in the snide comments and social derision of middle school, moving to Boston was like taking a breath of air. With my new treatment and fresh reputation, I had a chance at looking and feeling like a normal teenager. I made a commitment to myself that I wouldn’t tell anyone I had Crohn’s Disease. No one had to know.
I never realized how sick I was until I became healthy. I grew rapidly and celebrated the first signs of adulthood that I had missed out on in my early adolescence. When I graduated from my younger sister’s hand-me-ups to young women’s clothing, I went on a giant shopping spree at Forever 21. When I began menstruating at age fifteen, I threw a pink party with red and magenta food, drinks, balloons and streamers. The curious notion that I was not only old for getting my period, but that I had made it the subject of festivity spread throughout the freshman grade, to the point where two boys had attempted to crash my party but had come a day early.
I also slowly began integrating teenagery activities to compensate for what I had not been able to do. I landed a role in the freshman play. I joined the crew team; although I wasn’t yet strong enough to row, I found that I could still be participate by sitting in the boat and yelling at the people who were rowing. I felt valued as a member of a team.
I started dating a boy named Tomer Adini. My anxiety during our second dinner date exacerbated my symptoms, and I periodically excused myself to the ladies room under the premise of “checking my lipgloss” to double up in pain from explosive diarrhea. Each time I returned smiling, trying to ignore the corrosive monster in my lower abdomen.
I was relieved by the oblivion of the hundred people I greeted in the halls: my friends, my boyfriend, people in my classes. There were no questions, criticisms, explanations, or bullying. Once during concert choir, Jordan Rose approached me and asked if I had Crohn’s. Fearful, I immediately denied it, and asked how she had gotten that information. She explained that she had heard it from her younger brother, and advised me to tell my younger sister to stop spreading false rumors. When I got home, I reprimanded my sister for telling other people, saying that she knew that was a confidential part of my life. Her raised eyebrows accused me of absurdity, and she closed the door of her room to muffle my outburst.
I am better now, but I still prefer to maintain discretion about my disease. Perhaps the negative memories of my illness during my childhood not only motivated me to silence this integral aspect of my life to protect my relationships, but also motivated me to reach out to young children who are coping with hardship at an early age. Every summer I volunteer as a Counselor-in-Training for Camp Oasis: a camp for children living with Inflammatory Bowel Disease (Crohn’s Disease and Ulcerative Colitis). My nighttime responsibilities include: putting the nine-year-old girls to bed in their cabins: helping them brush their teeth, reminding them to go to the bathroom, reading them books, tucking them into their sleeping bags. My hope is that I can role model strength, optimism, fun and endurance through difficult times when most of the world doesn't understand their pain. I notice the younger ones watching me and it reminds me of the unusual trait that Crohn's has given me: I understand how they feel.
When I am in pain, I think of the brave, younger girls who look up to me. I want them to know that they can go to camp and learn to swim, they can take challenging classes, they can go to college. Their courage inspires me to persevere through my own obstacles. And while I think of them, it’s also nice to have Sophia at my side. Sharing my illness with her was the right thing to do. I think I’ll invite her to my next chemotherapy appointment.
squirrelgirl99 squirrelgirl99
18-21, F
1 Response Dec 5, 2012

You are very strong and I'm very proud of you. Your story has given me a whole new appreciation for my life. Lately I've been working out alot, I want to join the coast guard and need to gain 30 pounds of muscle. Your story`s given me a new level of motivation thank you for taking the time to write it.