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The Wonderland of Chronic Illness

August,1975: "Mommy, can I wear my new dress?" I ask, excitedly anticipating my second day of first grade. It's my favorite dress with a pinafore and a bow that ties around my waist in the back. I'm allowed to wear it, and I feel so proud as I walk into my first class that morning. Everything is so new--I love the smell of the crayons and the feel of glue as I cut and paste pictures into collages.

Until suddenly I am overcome by the most excruciating, twisting pain in my abdomen. I double over in my chair and the bow around my waist feels constricting. I notice how hot it is in the room. My friend looks up from her work and asks whether I'm okay. When the wave of cramping finally eases, I get up from my seat and tell my teacher I don't feel well. She sends me to the principal's office where the secretary takes my temperature; the reading is normal.

 

Down the Rabbit Hole

Though I did not know it at the time, I had fallen down the rabbit hole into the "Wonderland of Chronic Illness." I took a sip from the "Drink me" bottle and found myself growing up fast. I had to, in order to survive in this strange land where people in white coats communicated in the unfamiliar language of Gibberish; where foods labeled "Eat me" had the power to harm me; and where the Queen of Hearts insisted that what I was feeling was "all in my head."

As a child I didn't know how to express that the pain I felt was real--I wasn't making things up, nor was it psychological. It became clear to me that grownups don't listen to children or validate what they're feeling; therefore, it was easy for my parents to attribute my pain to school phobia. This was understandable, given the fact that my cramps and vomiting often occurred at suspiciously convenient times, such as before school or shortly after my arrival there. During second grade I had a teacher who--at six feet tall--towered over me, with a booming voice and a temper to match. I was afraid of her; however, not to the point that I would become physically ill, as my well-meaning parents thought.

One particular incident that remains etched in my mind:

Fall, 1976: Mrs. K. calls me out into the hall. "Caryn, what's your favorite candy bar?" "A Hershey bar," I reply. "If you promise not to throw up in class anymore, I'll give you a Hershey bar at the end of the year."

I was confused. I wasn't making myself vomit, I had no control over it. Couldn't she understand that? Despite my promise, I continued to vomit and never received that Hershey bar. This conversation implied that I was responsible for whatever was wrong inside of my body and through sheer will I could make it stop. It was the first time I was blamed for being sick--and it wasn't to be the last.

 

Eat Me

Pain and nausea (and occasional vomiting and fever) became my constant companions. Feeling well became alien: I thought the whole world suffered from stomach aches after ingesting meals, and this notion seemed to be supported by all the TV commercials for antacids and Pepto-Bismol. At my yearly physical, my mother told my pediatrician, "Dr. Rabbit," about my cramping and how I rolled around on the floor after eating. His answer: "It's the way she digests her food." Based on his recommendation, I stopped consuming dairy foods, but my abdominal symptoms intensified. I began to take Digel, and later Gas X, for the pain and cramping. Pretty soon I stopped eating certain foods, such as fresh fruit, in order to avoid symptoms. I was dubbed a picky eater.

 

I Grew Very Small

It wasn't long before I developed other symptoms that, for the moment, overshadowed my eating habits. I spent the day of my tenth birthday in the hospital because I was severely anemic and had been running a continuous low-grade fever for weeks. I endured many tests for various diseases including leukemia, juvenile rheumatoid arthritis, Rocky Mountain Spotted Fever, Lyme disease--all of which came back negative. My doctors were puzzled.

I tried in vain to provide the missing link and said, "My stomach hurts." Like the White Rabbit who was preoccupied with the time, the doctors were so preoccupied with lab results and X-rays that they failed to listen to me. I could feel myself growing very small in my hospital bed. I had become invisible.

Four more years passed and down, down, down, I fell. I seldom outgrew my clothing or shoe size. Friends laughed when they discovered I still wore Healthtex children's clothing. Weakened by fevers, vomiting, and diarrhea, I thought I had the flu even though it would last for two weeks and come back again.  

After one strenuous bout with "the flu," I attended a wedding shower thrown for my cousin. Her friend who sat across from me was a psychologist and noted how I picked at my food and ate very little. She informed my cousin that she believed I had anorexia nervosa. My mother was skeptical, but decided to approach me about it anyway, asking whether I was making myself throw up. I told her no, that I was terrified of throwing up--why would I induce it?

December 1983: I was fourteen years old and stood at four feet, eleven inches. I had lost quite a bit of weight in one month and was down to seventy-two pounds--my jeans were falling down with a belt on. My mother knew there was something wrong with me and took me to Dr. Rabbit, who, after having weighed me, had an insight into my illness after all of these years. I could almost see the lights snap on in his eyes as he said, "I think I've solved the mystery. Who in your family has Crohn's disease?"

It turned out that my uncle did, but had undergone one surgery for it and had been fine ever since. Dr. Rabbit told me that he was going to refer me to "Dr. Queen"--a pediatric gastroenterolgist who specializes in treating digestive diseases--for further tests. Finally there was a label for what I had; it wasn't all in my head. For the moment, that alone came as welcome relief considering everything I'd gone through. I learned from Dr. Queen that Crohn's disease is a chronic inflammatory bowel disease that can occur anywhere in the gastrointestinal tract, but more commonly affects the small and large intestines. It can cause the symptoms of persistent diarrhea, nausea, vomiting, weight loss, fevers, rectal bleeding, and joint pain I was experiencing. In addition, it can cause delayed growth and sexual maturation. I was informed that at fourteen I had the bone structure of an eleven-year-old. "There is no cure for Crohn's disease, but it is treatable," she said. I was put on a medication to help control the inflammatory process along with some vitamins and a nutritional supplement to help me gain weight.

My relief over finally having a diagnosis was short lived--in part because there was little public awareness about Crohn's disease, and any mention I made of it evoked negative responses, especially from peers, who, when told I had a gastrointestinal disease, physically backed away from me and grimaced, "Please, I don't want to know." Worse yet, teachers still blew off my pain. One of my friends indicated to my science teacher that I had chronic abdominal pain and she replied, "Oh you mean gas?" with a grin as wide as a Cheshire cat. Clearly I had an illness no one wanted to talk about, which only compounded the problem. I was in for quite a rude awakening, when, at sixteen, my health took a downward spiral.

 

The Mad Hatter's Tea Party

Adolescence is a difficult period under the best of circumstances. Throw in a chronic illness no one wants to talk about, and side effects from medications that alter your appearance and wreak havoc with your psyche, and it's a wonder you live to tell the tale.

June 1985: I was ready for my trip to Sanibel Island in Florida with my best friend Kim and her family. We had been looking forward to this all spring and were scheduled to leave on Friday. On Tuesday I began to feel unusually fatigued, and when I stretched out on my bed to read, I fell fast asleep instead. When I awoke, the pain was agonizing and I was very thirsty. I had such cramping that I had to stay perfectly still in the same position. I was feverishly hot and then chilled; I began to throw up almost nonstop.

I was better for awhile in the next morning, but then grew worse. I couldn't hold anything down and continued to vomit. My mother called Dr. Rabbit's office and the nurse said it was probably the flu and advised me to sip 7-Up from a spoon. I did, but only vomited continuously after having done so. This wasn't like any flu I had ever had. On Thursday, I went to see Dr. Rabbit. After examining my belly, which was very painful to the touch, he told me I had a small bowel obstruction and called Dr. Queen.

I wasn't going to Florida. I took a trip to the hospital instead, to a world where day runs into night and night runs into day. Time is marked by television shows. Nurses and doctors intrude into your territory, subjecting you to endless questions and poking and probing. Sleeping and waking are determined according to their schedules, not yours. You begin to learn their language of Gibberish: I learned quickly that NPO meant "nothing by mouth."  

Small bowel obstructions are a potentially life-threatening complication of Crohn's disease, and can be caused by scar tissue, inflammation, or a combination of both. The affected area of intestine becomes narrowed, making it difficult for food and water pass through the bowel, causing nausea, vomiting, abdominal distension, severe pain, and dehydration. Dr. Rabbit told me I'd have to swallow a tube, which would be passed through my nose to my stomach in order to decompress my bowel. "It'll be just like swallowing a spaghetti noodle," he said. Some spaghetti noodle--it looked more like a small garden hose to me.

I got equipped with IVs and NPO orders. But worst of all was the prednisone, a medication used to control inflammation. Prednisone's many side effects would later distort my appearance, my perceptions, and the perceptions others had of me.

As the side effects from the prednisone emerged, I developed a moon face, acne, facial hair; I gained weight, and fat was redistributed over my chest, the back of my neck, and abdomen. I suffered frequent mood swings: one minute I'd be happy and the next I'd start crying for no reason. I had no control over it and could only sit back and watch myself slowly go insane. I had a ferocious appetite--I saw what I ate and I ate what I saw. Friends commented on my weight gain and facial hair.

During a hospitalization for a second small bowel obstruction I was given bad news. The Crohn's had spread and I would have to go on tube feedings until my intestine healed. The party had officially begun.

The year became a series of hospitalizations, missed school, and surgery. My so-called friends shunned me. They seldom called or came to visit. One friend remarked to her mother that she would not come to the hospital or the house because I was "weird"-- she couldn't deal with the changes in my psychological state due to the prednisone.

I became withdrawn. I wanted to be a normal teenager and worry about school, parties, and dating instead of CAT scans, X-rays, and blood counts. I had begun to identify more with being sick than with being well. While taking walks down the hospital corridor I would stop to look out the window where I would see cars passing by, people walking, kids waiting at the bus stop across the street. I longed to be part of their world: the world of the living. I was by my appearance still a young girl, but on the inside I was already much older.

 

The Trial

Three months after my first surgery for Crohn's disease (surgery is performed only in the most dire circumstances), I was back at what had become home for me, the children's hospital. I was given intravenous nutrition, and because Dr. Queen was on vacation, a gastroenterologist by the name of "Dr. Mock Turtle" oversaw my treatment.

I underwent some tests, which confirmed that I had a recurrence of my Crohn's disease. What was shocking to me wasn't the news that the Crohn's was back, but rather my doctor's reaction to it. Dr. Queen had always been compassionate; however, when she walked into my room on that fateful spring day, she said words reminiscent not only of my second grade teacher, but of all the authority figures in my world. "You can't go on staying in hospitals all the time, you're not going home until you eat. You know, sometimes your mind plays tricks on you," she said pointing to her head.

I found myself growing very tall. I was tired of being blamed for being sick. I felt like my life was on trial, but I had evidence. Dr. Mock Turtle said he had it on X-rays and film proving that my symptoms were not borne of my imagination. I told my parents I wanted Dr. Mock Turtle to be my physician.

 

Wake Up, Alice

It was many years before I awakened from the bizarre dream that had become my life to greet the realities of living with a chronic illness. In the interim, I was placed on a cornucopia of medications for the Crohn's disease including an immunosuppressive. I was frequently hospitalized throughout my senior year of high school and spent much time on the homebound program; however, I did graduate with my class. By the time my second semester of college rolled around, I had my second operation due to repeated small bowel obstructions almost two years to the day of my first one.  

Nonetheless, I continued to feel ill. A few months later Dr. Mock Turtle referred me to me to Dr. Hare, a gastroenterologist at a major university medical center known for treating difficult cases of Crohn's disease. My parents and I were cautiously optimistic as we made the trip to see Dr. Hare.

A week of in-hospital tests and X-rays validated my suspicion: the Crohn's was back. Dr. Hare discussed my treatment options with my parents and me. It was the first time that a doctor actually listened to me. By allowing me to play a major role in my medical therapy, Dr. Hare let me grow up.

Moreover, I wasn't a bag of symptoms to him; I was a human being. Dr. Hare sensed that I had been rather socially deprived because of my illness and showed me that despite my disease, I could still make a difference in the world and helped me start a chapter of the Crohn's & Colitis Foundation of America (CCFA). My volunteer work for CCFA afforded me the opportunity to give myself to something bigger; it gave my life structure and a purpose. I made new friends and learned that everyone has something: no one is perfect. Today, as an aspiring writer, my life is very rich and full--not something experienced vicariously through the looking glass.

 

Caryn Goldstein is a freelance writer living in Louisville, Kentucky. She is a contributor to the Louisville publication, Today's Woman. This is her first contribution to Minnesota Parent.


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