My brother came screaming into this world like the womb he was living in had burst into flames. He was small and spidery with his eyes clamped shut, his mouth stretched open, and a thick shock of jet black hair projecting from his beet red head. Their first-born child was a son. My father’s pride. My mother’s pain. It would be years before he stopped screaming.

Two weeks after giving birth, my mother was preparing to host a dinner party. Before the guests arrived, she checked on her brand new son who’d been crying on and off all day. When a baby cries, it cries with its whole body. Its tiny fingers ball into fists, and its arms alternately contract and flail. Toes curl, and knees retract legs into the familiar fetal position. Those legs shoot back out with an independent vengeance, then contract again. Even the baby’s tongue gets into the action, constricting to cause those choking gasps for air. This was a real, solid cry. But that wouldn’t have worried my mother. Not in 1969. What worried my mother that day—what caused her to phone her friends and tell them the dinner party was off—was the curious way the baby’s left leg failed to move in conjunction with the rest of its contorting body. Even as both arms, the other leg, all ten fingers, and at least five toes repeatedly launched then retreated in syncopated time, his left leg lay flaccid. Curled atop his torso like a wilted stem, that leg was completely motionless.

#

Laughter in the drawing room drifted upstairs to the guest room where my mother sat at the dressing table preparing to return to the hospital to breastfeed her newborn son. She’d noticed Paul’s leg three hours before Liz and Al were due to arrive for dinner. It was supposed to be an appreciation dinner for the volunteer work Liz did in her class. Instead of showing appreciation, she thought now, she’d been squatting in her aide’s home for nearly a week. Liz and Al’s home in Williamsport was twenty minutes closer to Divine Providence hospital than she and my father’s home in Muncy. At two weeks old, Paul was on a three-hour feeding schedule. If it hadn’t been for Liz’s invitation, my mother knew she wouldn’t be getting the two-hour sleep sprints that were barely keeping her going. It was the week between Christmas and New Year’s Eve. This was the third dinner party Liz and Al had hosted since my mother and father arrived six days earlier.

Hearing ice cubes chatter inside empty glasses downstairs, my mother pictured crystal tumblers being refilled with vodka, scotch, bourbon, and gin. For a moment, she imagined being the eighty-proof liquid trapped inside one of those tumblers, rolling in languorous waves around the perimeter.

“Carol, it’s time,” said my father, materializing in the doorway and disappearing before she could be sure he’d been there. The 100-watt bulb in the Stiffel floor lamp hummed to the tune of a much higher voltage, in harmony with the electrical current of her sleep-deprived body. She grabbed her wig and, placing it on her head, tucked the unwashed strands of hair beneath it as she descended the stairs and maneuvered through the party and out the door to the car, where her husband now waited with the engine running. It was snowing again.

Liz and Al’s house perched at the pinnacle of a forty-five degree incline, and the Grand Prix typically fishtailed as my father pumped the brakes on the way down. My mother stared through the windshield beyond the kaleidoscope of swirling snow at the darkened road ahead. She remembered the time the mother of one of her Head Start students had invited she and Liz into her home for a piece of cake. The slices of cake were enormous—almost the size you’d serve an entire birthday party, they’d later agreed. Still, they both did their best to eat what they’d been served. After leaving the house to continue on their visiting rounds, Liz mentioned that she’d seen a rat, comparable in size to the cake slices they’d just consumed, run across the floor of the kitchen as they ate.

The car slowed to a stop in front of the hospital’s main entrance, and bracing herself against the snow, my mother hurried through the main doors. When she entered Paul’s room, a nurse handed her a sterile gown. There’d been another baby in the room when my brother had first been admitted, she was almost certain. She unfolded the gown, wondering if she could have been mistaken. Paul’s cry penetrated her eardrums like a high-explosive bullet, igniting every nerve ending. She pushed her arms through the openings in the front of the gown and looped the strings in back as she leaned forward, jostling the crib to reach in for her son. Paul’s cries turned to screams.

The doctors had put a cast on Paul’s damaged leg. She wasn’t sure why. Thinking the problem was cellulitis, Paul’s doctor had started him on antibiotics via shots to his rump, but his rump had since hardened to the shots. They’d had to cut an opening in his other ankle to administer the antibiotic through an IV tube. No wonder he screams, my mother thought. She wished cellulitis had been the final prognosis.

“We’ve run more tests,” the pediatrician had told my parents the previous afternoon.

“What is it?” My mother sensed the doctor’s darkened mood.

“It’s a condition called osteomyelitis. It’s an infection in his bone.”

She’d then asked, for the first time since Paul was admitted, “Will he be OK?”

“I can’t say,” the doctor had replied.

She pushed the conversation from her mind as she pulled the baby toward her chest. Careful not to disturb the IV, my mother placed her left arm under Paul’s back, supporting his head with her left hand and balancing his torso and the leg with the IV tube on top of her forearm. She reached over his flailing arms with her right hand to lift his left leg so that the cast rested on her left breast, the opposite from which she would feed. Then she moved to open the gown, but she found no opening.

Standing with her screaming baby balanced on one arm, my mother began to tremble. My father appeared as the first sob turned into another, and he placed his arms under the baby just as my mother fell, deflating like a popped balloon, into the chair beside the crib.

“I—I—I—can’t—I—can’t—” My father rocked the baby and cooed in his ear. “I can’t—do it—anymore,” my mother said, tears now soaking the front of her once sterile gown.

“What do you want to do?” my father said in the voice he was using for Paul.

“I don’t—know.” My mother’s sobs slowed. “I just know—I can’t do this anymore.”

“I have to go back to work next week,” my father said. The high school was at a shortage for substitute band directors, and he’d been fortunate to get a full week off.

“I need to go home. I need to sleep, or I’m not going to make it,” my mother said. Then she stood up, reversed her hospital gown, took her baby in her arms, and once again, performed the balancing act that would allow him to feed.

When my parents returned to Liz and Al’s that evening, the guests were seated in the dining room. A fresh batch of Al’s law practice associates lined the twelve-foot mahogany table. My mother watched through the open doorway as rosy-cheeked lawyers and bulbous-nosed businessmen filled wine glasses for their porcelain wives. Removing her coat and scarf, she turned toward the staircase.

“Carol, Flor!” Liz heard my parents shedding their winter layers and entered the foyer to usher them into the dining room. “How is Paul?” she asked.

“He’s the same,” my mother said. “The nurses are going to give him formula tonight, so I can get some sleep.”

“Oh Carol, that’s wonderful,” Liz said. “Here, have a little glass of wine. I can’t imagine what you must be going through.”

My mother watched the deep burgundy liquid fill her glass and took a long sip. Liz moved to the end of the table where she spooned steaming white rice on to each plate before Al piled it high with a vibrant casserole of rich green broccoli and roasted chicken in thick cream sauce covered with melted cheese, still bubbling from the oven, and topped with buttery breadcrumbs toasted to a golden-brown crust. My mother thought she’d never seen a more beautiful meal, and when the waft of curried chicken hit her with the passing of plates around the table, her stomach rumbled in response. She lifted her wine glass, which was somehow empty, and before she could place it back down, a hand appeared from behind with a wine bottle to fill her glass again.

As she sipped the second glass of wine, my mother’s thoughts drifted toward the concept of a full night’s sleep. Each sip carried her closer, and she’d almost grasped it when the first bite of food reeled her back to the dinner table. She pulled the fork from her mouth and closed her eyes to savor the tang of curry against hearty chicken with a burst of fresh broccoli steamed just beyond firm. The breadcrumbs added a balancing texture against the rich, creamy sauce, and melted cheese drew the flavors together into a zesty conclusion that left her wanting indeterminately more. She hadn’t realized she was so hungry.

“It’s chicken divan,” Liz whispered to my mother as she stood up to fill her water glass. “Do you like it?” My mother’s mouth was too full to answer.

Conversations merged with the clinking of silver against china, and crystal stemware chimed in harmony with highball glasses in holiday toast. My mother felt like she was watching the scene from a place outside of herself, hovering beyond the table and witnessing the events, as if in a dream. She was talking. She was telling everyone about the breast pump or, more accurately, the breast milk sucking machine. They were laughing. And she was laughing too.

The plastic funnel was designed to fit on the end of a breast, and a tube attached to the funnel led to the hand-pump which, when squeezed, was supposed to create the suction that would pull the milk from the nipple. The funnel had been cold, and her nipple had practically retracted at the tenacious pull of the contrived suction. It was repulsive, she remembered. Her milk stopped altogether after a few moments with the contraption.

Though the doctor insisted that Paul needed breast milk for nutrients, he also agreed that my mother needed sleep in order to get through whatever the next days and weeks would bring. The nurses would feed him formula overnight, the doctor conceded, since my mother would now spend full days in the hospital, breastfeeding her son as often as necessary.

Before dessert was served, my mother excused herself. She returned to the guest room and sat at the dressing table noticing that something in her reflection wasn’t right. Throughout the entire evening, my mother realized, none of the nurses, doctors, lawyers, businessmen or their wives—not even Liz had told her that her wig was on backward. Her husband, she knew, would not have noticed. She flung the wig on the dressing table and, rather than comb her limp hair, fell into bed, succumbing to the exhaustion that had consumed her week.

My parents packed their few belongings into the Grand Prix at six o’clock the next morning. Liz was already awake with her coffee, and as my mother left, pressed a folded piece of paper into her hand.

“What’s this?” my mother asked.

“You can look at it later,” Liz said. “Just a little something to take with you.”

“Thank you,” my mother said.

“No thanks are necessary,” Liz said, “and you know the invitation is open.”

My mother slid the paper into her coat pocket as she walked out the door into the frigid morning air. It would be almost a year before she found that paper again.

The next two weeks felt like two years as my parents performed the daily hospital rituals that they prayed would stack the scales of fate in their new family’s favor. Just before Paul was scheduled for surgery to drain the infected area, his pediatrician made a visit to his hospital room.

“He’s showing signs of improvement,” the pediatrician told my parents. “The infection is draining on its own.”

“Is that good?” my mother asked.

“It’s the best thing that could have happened,” the doctor said. “We’ll watch it for a few more days and then get him out of this hospital before he picks up something else in here.”

#

By the time he was released from the hospital, osteomyelitis wasn’t my brother’s only problem. I often wondered, as a young child, why photographs showed him with a belly button that rivaled Pinocchio’s nose after an obvious whopper. Paul’s navel wore a hole in all of his shirts and protruded at least an inch in perpendicular relation to his torso.

Apparently, he had cried so hard for so long in the hospital that he’d given himself two hernias. One was umbilical and the other, inguinal. The inguinal posed the larger problem. They’d have to operate, the doctor informed my parents, but not before they knew the osteomyelitis had completely cleared. This they checked by extracting blood from Paul’s jugular vein. The osteomyelitis was under control, but it would be months before my brother was completely out of danger. It would be years before my parents would fully accept that.

The following Christmas, my mother was five months pregnant with me. She grabbed her old coat on the way to a doctor’s appointment when, reaching into the pocket for her gloves, she found the folded piece of paper that Liz had pressed into her hand the year before. She opened it. And here’s what it said.

Chicken Divan
Spread 20 oz. chopped broccoli on bottom of buttered 9×13” pan.
Chop 3 cooked chicken breasts and spread over broccoli.

Mix together
2 cans cream of chicken soup
1 cup mayonnaise
1 Tbsp. curry powder
1 Tbsp. lemon juice
Spread sauce over chicken

16 oz. Velveeta cheese – sliced and placed evenly atop sauce

Combine
2 cups fresh breadcrumbs
3 Tbsp. melted butter
Sprinkle buttered breadcrumbs over cheese

Preheat oven to 350 degrees.
Bake for 30 minutes.

My mother made chicken divan for Christmas that year. Technically, I ate it too, since I was there in the womb, partaking from the safety of my home within a home. It’s been forty years, and there hasn’t been a Christmas without chicken divan since.

The mood is somber.
A hush blankets the valley.
As I walk through a campus devoid of spirit,
Students are quiet and scarce.
Even the so-called protest outside of Old Main has an air of predetermined defeat.
One man stands on the steps and burns his diploma.

University spokespeople suggest terms like “shocked” and “saddened,”
But those words don’t do justice.
We are stunned.
We are afloat within the space between knowledge and acceptance,
Filled with palpable, ubiquitous emptiness.
We are sickened by a force that weighs in our guts.

This is happening, we repeat.
Our heart is broken.

When we’re all finished with the orange wedges, she cuts another orange in half and smashes each half, one at a time down into the glass juicer. She pours the juice through the strainer that sits on top of my glass. Before she hands it to me, I watch her squeeze two drops of her diabetic sweetener into the juice and stir it in. I take the juice to the kitchen table, where I sit and wait for my Pepperidge Farm toast. I can’t resist taking one tiny sip of juice before my toast arrives. The extra sweetness of the juice stays in my mouth even after I’ve swallowed.

When my toast is ready, Grammie tops it with thick pats of real butter, cuts it diagonally the way I like it, and places it on the table in front of me. The toast is golden brown, and the butter is still melting on top. I quickly take a bite, sinking my teeth into the warm pat of butter, and Grammie smiles at me before turning back to the sink to clean up.

Part 1: Sick
Part 2: A History of Anxiety
Part 3: Stomach Virus
Part 4: Specter
Part 5: Dignity
Part 6: Pride
Part 7: Tests
Part 8: Rare Disease
Part 9: Diagnosis
Conclusion: A Note on Celiac Disease

It has been nine years since my diagnosis, and I am still learning. I am sure I will never stop. I consider myself lucky in that, after all I went through, I was diagnosed with a condition that is controllable. Celiac disease is an autoimmune disorder in which the small intestine is destroyed when gluten is ingested, thereby impairing the body’s ability to digest food and absorb nutrients. Gluten is a protein found in many grains, including wheat, barley, and rye. These ingredients are hidden in more common foods than anyone who isn’t forced to think about such things would imagine, including soups and broth, seasonings, marinades, and a host of processed food ingredients. Celiac disease can be triggered by stress, a viral infection, or any life-altering event. Symptoms mirror those of many other illnesses and include diarrhea, gas, bloating, lethargy, weakness, malnutrition, anemia, and quite a few more, many of which are caused by complications from the persistence of other symptoms. Though it is often misdiagnosed and even more often undiagnosed, celiac disease is not rare.

It is now estimated that 1 in every 100 people in the United States has celiac disease. An astounding 97% of those people are undiagnosed (p. 3 Green, Jones). In their book Celiac Disease A Hidden Epidemic, Peter H.R. Green, M.D. and Rory Jones point out that “Celiac disease is the most common—and one of the most under-diagnosed—hereditary autoimmune conditions in the United States today. It is as common as hereditary high cholesterol.” Although celiac disease has been widely recognized in Europe for many years, it has, in America, been deemed as rare—a puzzling conclusion considering the high ratio of Americans who hail from European descent.

I constantly read updates on celiac disease research, and it is finally gaining recognition in this country by both the food and the medical industries. Nine years ago, when I lay in that hospital bed listening to the doctor explain how rare celiac disease was, I believed him. Since then, I’ve learned a few things, including the fact that celiac disease is much more prevalent than was once thought. I know full well that the amount of gluten necessary to cause a negative reaction is unknown; that trace amounts of contaminants must be avoided; and that the problems caused by this disease are internal and potentially not even perceivable. Still, I sat in silent awe five years after my diagnosis as my new doctor explained that a certain medication probably didn’t contain “enough” gluten to cause a reaction.

Celiac disease is not rare. I will repeat this as many times as is necessary for the rest of my life. At the time I was diagnosed, it was simply not well accepted by the American medical profession. That is changing.

Green H.R., Peter, M.D. and Jones, Rory. Celiac Disease A Hidden Epidemic. 1st ed.
New York: HarperCollins, 2006.

__

I hope you enjoyed reading “My Rare Disease,” though by now, we all know this disease is not rare. Dire need for better awareness and understanding persist. Please consider making a donation to one of the many organizations that are now striving to perform research and offer education regarding celiac disease and gluten intolerance. Thank you for participating in this journey. Mush!

National Foundation for Celiac Awareness

Celiac Disease Foundation

Celiac Sprue Association

University of Maryland Center for Celiac Research

University of Chicago Celiac Disease Center

Celiac Disease Center at Columbia University

Human powers of denial surpass those of reason by what seems like an exponential degree. And maybe it wasn’t surprise I felt the next Monday morning after a weekend of torturous purging. Perhaps my confusion at the meaning of “You tested positive for celiac sprue” had more to do with the language used by the nurse on the telephone than the element of surprise at the reality of the situation. Perhaps acceptance is more closely linked to surprise than I had ever thought to acknowledge.

The truth I had to accept was the diagnosis, but the element of surprise would resurface periodically, as I searched for answers to questions I’d been asking myself for quite some time. Why had I followed my boyfriend out west? Why was I so intent on helping someone else pursue his dreams? What was I looking for? And why did everything I attempted seem to fail?

The puzzle pieces of my life were falling into place, and surprise and acceptance converged as I worked to come to terms with my new reality. Celiac disease, I realized, had been pulling the puppet strings behind the scenes of my life, probably forever. In the past I’d looked outward for my life’s direction. Now, a direction had been handed to me in the form of a diagnosis, shifting my perspective by an almost perfect 180 degrees. Control is overrated, I’d once told myself. Now I wondered, thinking again about at all the failures in my career, in my relationships, in my health. I’d been ill, I now knew, and nothing works if it’s broken inside.

Perhaps I’d searched outwardly for fulfillment because, on some subconscious level, I knew I didn’t have the power to dictate my own path. Perhaps I allowed life to pull me along in the hopes that the right path would present itself if I left the door open to possibilities. Or maybe I’d resigned to thinking it was enough to follow someone else’s path, one which seemed so much more certain than my own.

In the end, my own path did find me, in a manner I could scarcely have predicted or even imagined. When I first heard the diagnosis over the telephone, my heart plummeted with the knowledge that life as I knew it was over. The more I dwelled on the circumstances, though, the more I realized that my life made more sense now than it ever had before. Celiac disease, I’d learned in the wake of my diagnosis, was perfectly controllable through a gluten-free diet. Though it wasn’t easy or convenient, it also wasn’t impossible. I already felt better than I had in years. I was stronger and healthier and, for the first time ever, in control of these aspects of my life.

Had I not been diagnosed with celiac disease, I wondered, what kind of a life would I have had? More to the point, Would I have had any life at all? Though I will never truly know the answers to these questions, my experience-based suspicions were enough to help me accept that I did, in fact, have a lifelong disease. Like it or not, the path was finally clear, and my gluten-free journey was about to begin.

##

Conclusion ~ A Note on Celiac Disease

Around day seven they started doing different tests to explore the possibility that it might not be the stomach virus that had been going around. The nurse gave me a new shot every morning at 6:00 a.m. An associate of my doctor came in to explain what they were going to do next. He was young—fresh out of med. school, I presumed—and it looked to me like he had to struggle to keep a straight face every time he uttered the word “diarrhea,” which, to his misfortune, he was required to utter prolifically when discussing my case. They were starting to eliminate possibilities, he told me, managing not to snicker. There was a very rare disease and very little chance that I had it, but they had to start eliminating things to find out what the real problem was. So that’s where they were going to start. Again, he was sure I didn’t have that very rare disease. But procedure dictated that this was where they must begin.

A nurse handed me a two-inch stack of loose paper. “This is information on celiac disease,” she said. “It’s very unlikely this is what you have, but we’ll be putting you on a special diet to eliminate that possibility.” I looked down at the stack of paper on my lap and for the first time, I wanted to laugh. I hoped there wouldn’t be a test on this.

When everyone was gone, I started to read through the information the nurse had left. Celiac Disease; Gluten Intolerance; Gluten Sensitive Enteropathy; Malabsorption Syndrome; Nontropical Sprue … the list went on. I read three pages before deciding I did not have that disease. People who had that disease could not eat anything. No pasta, no bread, no cake or cookies, no food with unknown origin, not to mention bacon double cheeseburgers. Those three pages of information eliminated everything. And not only did I absolutely love food, I was currently starving.

They put me on the diet anyway, and my mom stopped bringing me buttered noodles in a thermos. Almost immediately, I showed signs of improvement. It must be a coincidence, I thought. My stomach virus is finally clearing up! Apparently, my doctor had been waiting for that window of opportunity to release me from the hospital so I could travel to a gastroenterology specialist for a certain procedure. As day eight showed more improvement, my release was scheduled for day nine. The special procedure, which turned out to be an endoscopy and biopsy of my small intestine, occurred shortly thereafter.

The results of the procedure would take a couple of weeks. So I waited, and I worked, and I drank plenty of orange juice to keep my potassium levels up. I tried to stick to that crazy diet, which consisted of bland meats, vegetables, fruits, potatoes, and rice, and I also started exercising because my body seemed to be inflating as quickly as an air mattress hooked up to a battery-powered pump.

Two weeks after the procedure, I hoped and prayed I’d get the results before the weekend so I knew if I could eat pasta or not. Before the stomach virus, I’d started what was quickly becoming a Friday night ritual of dining with my parents and friends at the local Italian restaurant. We drank Chianti, and talked, and laughed, and I ate mounds of eggplant Parmesan and angel hair pasta before retiring, satiated, home to bed.

After living away from my family for the past two years, these times together were like soul medicine. It was as much of an escape from the reality of my thirty-year-old life—having recently left the man I was only then beginning to realize was not my life partner, along with the life we’d made together, most of my belongings, and a failed career—as it was an elixir, with the strength of familial roots binding instinctively together to hold me up when I couldn’t do it myself. The truth was, that Friday night pasta filled me up, if only for those few brief hours every week. That’s why I stared at the telephone, willing it to ring that Friday afternoon at work. So I would know that the tests were O.K., and I could eat pasta with my family. So I could fill myself up with it. But five o’clock came, and the call with my test results did not. I decided to eat the pasta anyway.

Next ~ Part 9: Diagnosis

At night, the nurses took blood samples to monitor my condition. They came in every couple of hours, beginning at 11:00 p.m., each time poking into a new or freshly healed hole with their needles, or taking my blood pressure, or checking my heart rate, or all of the above. At least my blood was flowing freely thanks to the IV, for which they also had to stab open a new puncture wound periodically. Every morning, a doctor came to update me on my condition and to see how I was doing. “You’re ingesting the equivalent of this bottle,” he’d profess, “and you’re eliminating twice that amount.” There would be a pause.

I once tried to describe what was happening by telling my doctor that I felt best in the morning and progressively worse throughout the day until the evening when I would feel my absolute worst. “I feel like my food is poisoning me,” I once admitted, knowing it was outside the realm of possibility.

I was desperate and starving. I searched for food commercials on TV and salivated over the Pizza Hut pizza or the double Whopper with cheese. When my doctor asked what I wanted to do when I got out of the hospital, I said, “I want to eat a bacon double cheeseburger.”

“You don’t eat bacon double cheeseburgers,” he told me.

My mom started bringing me home-cooked meals. She wasn’t supposed to since they were measuring everything that came in and went out of me twenty-four hours a day. But I wasn’t getting any better, and the hospital food was barely identifiable, let alone edible. She could hardly watch my attempts to eat it.

Every few days I was allowed to walk down the hall for a shower. The nurses helped me in the shower so my IV didn’t get wet. When I got back to the room, sometimes my dad would dry my hair like he did when I was a little girl with the setting on low, slowly combing out the tangles until my chestnut-colored hair, which over the past few years had developed golden highlights, hung in loose waves around my face and over my shoulders. Devoid of sunlight for months, my skin had taken on a translucent quality, like skim milk, reminding me of the photograph I’d seen of myself as a baby with the addition of a smattering of freckles across my cheeks and nose. And my eyes, now ocean-gray, rather than blue, once again resembled the glass marble eyes of my childhood.

After three days in the hospital, I had some upper GI tests, and then a CAT scan. As I sat in the wheelchair, awaiting my instructions, those ocean-gray eyes must have looked wide and terrified. The technician made small talk to set my mind at ease. She asked how old I was.

“Thirty,” I told her, and her face went blank.

“I would have guessed eighteen,” she said. Then she helped me out of the wheelchair to begin the procedures.

The stomach cramps hit me shortly after the CAT scan. I was sitting in my wheelchair, alone in the hallway and doubled over in pain when my dad came in for one of his visits. I knew how it must have looked—his only daughter doubled over in a wheelchair, dressed in only a hospital gown and attached to an IV, all skin and bones and hurt. I wished I could pretend it didn’t hurt. Dad wheeled me back to my room and by the time he left, the cramps had mercifully subsided. I watched Animal Planet on TV.

That night my mother stayed with me later than usual. One of the tests was supposed to measure the length of time it took for substances to pass through my digestive system. Perhaps they were looking for blockage. I couldn’t be sure. I didn’t have the capacity to process all the tests and their various functions, whether or not anyone ever told me. What I did know was that I was not allowed to eat food until whatever fluids they’d given me to drink that morning reached a certain point in my system. Those fluids were all I’d ingested all day.

Apparently, I have the digestive system of a python because it was 11:00 p.m. before I finally received word that I could eat dinner. I was weary from tests and feeble from lack of food, but still, the elimination continued. I had just maneuvered my IV stand into the bathroom to use the toilet hat facility when I heard the nurse’s excited voice booming on the other side of the door.

“She’s in the bathroom,” my mother said, and I assumed the nurse would come back later. Almost before I’d finished the thought, two quick knocks barely prefaced the nurse bursting through the bathroom door with a hearty greeting of “You can eat, you can eat! What do you want for dinner?”

I looked up at her from my seated position. My mouth was no doubt open, but I found myself unable to utter a single word.

“You just think about it, honey, and I’ll come right back!” she said.

I did appreciate the nurse’s enthusiasm. I just was unable to show it. To its credit, my ability to show appreciation hung on a lot longer than my dignity had. I probably felt a tinge of guilt when I told the nurse, upon her return, that I wasn’t hungry anymore and I just wanted to go to sleep. That’s when I realized I wasn’t angry or frustrated or even embarrassed by her breach of what I’d previously considered to be my privacy. Where was my pride? I wondered, sinking heavily into bed amidst the familiar sound of plastic rustling under the sheets.

Next ~ Part 8: Rare Disease

We developed a routine. After talking to the doctor each morning, my mother called my employers to let them know that I needed to stay in the hospital for another day. Then, we watched The View.

My father visited a couple of times a day and paced the floor until he had to return to work. One morning the nurse asked if I wanted to see the chaplain, or to have my hospital announcement in the local newspaper. No, and are you kidding? Nevertheless, the chaplain stopped by on one of my particularly unfortunate days. I was resting during the middle of the afternoon with the bed completely reclined when a man poked his head through the doorway.

“Tara,” he said.

“Yes,” I said.

“Are you Tara Caimi?”

“Yes,” I said again.

“You’re Tara Caimi?” I stared at him in silence.

He then introduced himself as the chaplain who also happened to be the father of a long-time friend and classmate of mine. After exchanging all the pleasantries I could muster, I wondered if he judged me for asking not to see him in the first place. I decided that he did, and rather than resume my fruitless effort to fall asleep, I was now forced to think about the concept of pride.

I had not wanted my name to appear in the newspaper, I admitted to myself, because I didn’t want the entire town to know how sick I was, let alone to know how I was sick. I had no interest in receiving get-well balloons or flowers or, god forbid, visitors in my current state. I was melting from the inside out. It was hard enough to witness my own family witnessing that.

A philosophy professor in college once asked my class how each of us would prefer to die. I couldn’t answer the question, but for some reason I later came up with my own variation of it. I chose, instead, to wonder about the most embarrassing way to die. Looking at my current situation, I felt certain that the melting method would rock the death charts to within the top twenty most humiliating approaches.

The chaplain could not have known about the plastic hat that rested upside-down in my personal hospital toilet or that underneath my not-so-fitted bed sheet lay an even less fitted plastic mat used under “normal” circumstances for the potty untrained or otherwise differently continent-abled. Sure, it appeared I’d been sleeping during the middle of what was probably a perfectly acceptable afternoon, but I was in a hospital. I had nothing to be ashamed of, I told myself. More importantly, I should not be called upon to partake of such pleasantries as introductions while lying on my possible deathbed in a public hospital room. How thoughtless and maybe even selfish of him to barge in like that when I had specifically requested not to see him, I fumed to the best of my weakened ability.

Prior to the chaplain experience, I believed I had lost all my pride which, to my hospital-ridden self, seemed almost as useless as dignity. The chaplain experience changed that perspective altogether. If it hadn’t been for pride, I may have attempted to die from humiliation. As it was, my pride-inspired anger at the chaplain’s imposition and subsequent judgment bolstered whatever strength I had left.

Had the chaplain really judged me? I fleetingly wondered. It didn’t matter. Pride can certainly spark deception, self or otherwise-directed, and it often rises from a deeply rooted basis of illusion, just like dignity. The difference I noticed is that pride, at least in my case, seemed to support the types of delusions that can actually protect rather than tear down one’s confidence. Where dignity breeds self-hatred, I considered, pride inspires self-love, misguided as the reasons for both may be. I still had my pride, I realized then, albeit not very much of it. (Refer to previous paragraph re: toilet hat.)

Next ~ Part 7: Tests

My mother would later tell me that she’d seen in my eyes a look she had only seen twice before in her life—once in my great aunt’s eyes just before she passed away, and once in my great grandfather’s eyes, also right before he died. She’d left my house that morning and headed straight for the doctor’s office, where she marched past the waiting area, through the doors to the nurses’ stations and stood with tears streaming down her cheeks as she told the doctor in no uncertain terms to help her daughter or find someone else who would. The doctor wasn’t about to argue, and my mother returned to haul me back in to the emergency room, where the nurses tried exhaustively to insert an IV. In the end, they called a distinctly zealous EMT who wasn’t going to take no for an answer. He found success after several moments of twisting the needle in a variety of directions under the skin and jabbing forcefully until it penetrated a vein I hadn’t previously known existed in the base of my left thumb. I had to give the man credit for his ingenuity.

I then learned that the hospital had no beds available, or rather, not enough staff for the beds. So I remained on the little metal folding cart in the ER overnight. Every few hours, a different doctor came in to check on me. One of them looked at my fingernails and asked me how long they’d been curled over the tips of my fingers like that. “Forever,” I told him. “But they’ve gotten worse in the past couple of years.”

The next day, I was admitted into the hospital and provided with a real bed and my very own bathroom. Not having to share a bathroom normally would have been enough to brighten my spirits. But by that time, I had no spirits left to brighten. It was all I could do to watch as the world proceeded to function around me.

Eventually, my doctor came to see me. A week earlier, that same doctor had examined me in his office and told me with all the confidence I’d ever seen in a human being that I was on the mend from the terrible stomach virus that had been going around. I was “definitely getting better,” he’d said. Now he told me that my potassium levels were dangerously low—among the lowest he’d ever seen. They’d have to change my IV solution. Up until that time, I’d been able to endure the multiple IV stab wounds as well as the fact that they’d had to extract blood from a new puncture wound every six hours, but when they changed that IV solution, the potassium felt like liquid fire running through my veins. As the scorching pain extended into the flesh of my wrist and traveled up my arm I felt the familiar warmth of tears on my cheeks. Over the past two years, those tears had become my constant companions.

Several days later, my doctor asked if the potassium hurt. When I said yes, he had the ratio adjusted, so it didn’t damage my veins. “It shouldn’t hurt,” he said quietly. The same doctor who’d told me with a self-assured smile that I was getting better one week earlier now looked at me in a quiet way with a curious tilt of his head. I tried to define the look in his eyes, but desperation didn’t seem to capture it. Though his face was a picture of professionalism, his eyes, if mine did not deceive me, held something akin to sorrow.

Every day he called a specialist with an update on my condition. Every day the specialist told him about the stomach virus that was going around. So we waited. I had already gained a significant number of my lost pounds via the IV. I was hydrated and could once again recognize my face in the mirror, but I continued to eliminate more than I ingested. This I knew, because they measured. At one point I began to wonder what I could possibly have left to eliminate, but the images that line of thinking conjured were unbearable in my given state. I quickly banished the thoughts.

Instead, I considered the concept of dignity. Though I knew chances were likely that I’d experienced dignity once, maybe even possessed or enjoyed it, that state of existence was so far gone—years since removed—I could no longer remember how it felt. Lucky for me, hospitals don’t allow for dignity. That’s a life lesson learned the minute you trade all your undergarments for an approximate square yard of hospital-blue, threadbare fabric masquerading as a backless gown. At this pinnacle, dignity transforms from an illusion of superiority into a cruel joke on all humanity. (And if that isn’t enough, the subsequent measuring of bodily eliminations will step right up to hammer the last nail in dignity’s coffin. Of course, by that time, the joke’s on dignity.)

Who invented this circular concept that is destined to turn with venomous disdain on each and every one of us some day? That’s what I wanted to know. The good news was that I’d already lost much of my dignity prior to the hospital experience. Imagine the damage potential in one who is not so fortunate. A person, I considered, who does not experience dignity-crushing events at a still formative age may never learn that having dignity is the ultimate exercise in self-deception. At least I’d figured this out before it was too late. That I’d once had dignity, myself, was the impossible concept to grasp. This is how comprehensively it vanishes. Before the hospital, I realized, I’d been trying to recapture my dignity. In the hospital, by contrast, dignity was not an option. How freeing, I thought, then forgot about it altogether as I lay in the hospital bed awaiting my mother’s arrival.

Next ~ Part 6: Pride