Kneeling between the leaders at the front of the lines, I watched my dad struggle to restrain Little Lefty as he clutched the chain around her neck and ran from the truck to the sled, where Nick waited to hook her up with the rest of the team. The usual frenzy ensued, fraught with jumping, howling, and nerve shredding cries that seemed more ghostly that canine. I was accustomed to this routine, having ridden with Nick several times that winter, but this would be my dad’s first dog-sled ride. He and my mother had flown in to visit for the first time since Nick and I moved from Pennsylvania to Utah six months earlier in pursuit of his dog mushing dream.

Since then, Nick had discovered trails on Strawberry Ridge where he now trained the dogs twice a week. From October through March, pristine snow blanketed miles of wilderness, which ranged in elevation from 8,000 to 9,500 feet. The trail Nick most often traveled wound through the Uinta National Forest, and the trees lining that trail often parted to reveal breathtaking views of the valley below. When we didn’t cross paths with snowmobiles, the silence of the ride transported me into a wonderland reminiscent of fairy-tales.

“Haaaa—aayke!” Nick yelled, and the dogs surged forward in concentrated, now silent, effort. As the sled pulled away with my dad in the cargo basket, leaving my mother and I in the echoing wake of their departure, I closed my eyes to imagine what he must be feeling. My own experiences had felt like gliding on a cloud in heaven by way of sled-dog drawn chariot. The most fascinating part, I noticed after a few rides, was the chain of events that occurred when one of the chariot-pulling dogs relieved him or herself mid-stride. I’d witness these proceedings from my privileged perspective as a passenger in the chariot. Nick would urge the dogs to keep on running, and they’d do just that with barely a blip in the motion as the droppings from one or another bounced off the snow and disappeared behind the sled. The entire display represented a natural wonder from which my fleeting worry about the trajectory of the bounce in relation to my position barely distracted. I was gliding on a cloud in heaven with nary engine sound nor fume. The sporadic puff of fecal odor could not disturb my inner peace. I did not know if Dad would share my fascination with the dogs’ secondary talent, but I surmised he’d reach transcendence either way. The gaping grin affixed to his face as they glided into the parking area validated that prediction.

We entertained my parents through the rest of the week by treating them to an assortment of scenic attractions highlighting the glamour of Park City and rustic charm of surrounding areas, all the while touting the depth and range of our new homeland’s appeal. As we prepared dinner in the Harvest Gold kitchen of our rented mobile home the night before they were scheduled to fly back to Pennsylvania, Dad admitted that nothing matched the allure of the dog-sled ride. His words of confession, to those of us familiar with the feeling, were superfluous.

The next day, the mobile home fell silent in the absence of its guests, affording ample time to ruminate on the state of my affairs. In six months, I’d found neither cultural comfort zone nor social solidarity in Utah. This wasn’t something I had verbalized to my parents. At the age of twenty-eight, my relationship with them had yet to strike an emotionally supportive balance. Chemically induced clashes of will with my mother and note-card driven lectures by my father in response to any manner of irresponsible teenaged behavior (I tried most on for size) had driven me to silence through the better part of high school. It wasn’t until I left for college and found my confidence in academic success that we forged respectable relationship terms. This included conversation, albeit mostly intellectual. I knew they were not pleased about my choice to move with Nick, but eliciting further judgment through discussion seemed counterproductive. So I smiled while Nick and I showcased the area for my parents, and we talked about the high-desert weather that, we all agreed, seemed too perfect to be true.

That spring, Nick told me about his ideal scenario. “How great would it be to own land on Strawberry Ridge?” he’d say to me periodically. “I could build a house with a dog kennel, and run tours right out of the back yard.” Though certain the question was rhetorical, I could not stop myself from imagining such a home in a remote area of the wilderness with no one around but the dogs. The fantasy prompted me to mention once in casual conversation at work that I enjoyed the company of the sled dogs more than I did most people.

“Well, they don’t talk back,” one coworker quipped, leaving me spinning in rapid-reply impotence. Is she saying I lack tolerance for the beliefs and opinions of others because I enjoy the company of animals who can’t talk? I wondered after a moment. As the retaliation window slid shut in my stunned silence, I recalled other times I’d failed to trump someone’s jab with a clever response. My talent, to my life-long dismay, lay not in snappy comebacks, but in long-term analysis. I pondered the insults people hurled at me long after they’d hit their mark. This one, in particular, proved to be quite thought provoking.

One of Nick’s sled dogs had fallen ill earlier in the year. When I walked into the kennel on that Saturday afternoon, I saw the dog’s eyelids at half-mast and noted the way his once perky ears lay limp, now parallel to the ground. I watched his head hover at shoulder level as if his collar were loaded with lead, and I knew in an instant he was sick. He did not verbalize his feelings, but the message in his demeanor was clear. I knelt beside him, and he leaned his body into mine then gazed into my eyes. The English language would have served no better in communicating the desperation I recognized. Without words, that dog spoke to my heart, an epiphany destined to remain subconscious in the absence of my coworker’s remark.

My thought train continued on its tracks to consider the complex communication processes that took place within the canine pack. Sans human intervention, I’d seen the dogs quickly and innately find their positions to form a fully functional team. This amazing feat would not be possible without communication. As I’d never witnessed the formation or experienced the existence of a fully functional human team, it seemed to me that dogs communicated more effectively than people, “talking” notwithstanding.

Having arrived at this triumphant conclusion, I overcame the sting of my coworker’s comment. Shortly thereafter, I approached her with a graphic design idea. At the adjacent desk, I overheard Lena, another graphic designer, ask John, a member of the sales team, if he wore the “holey underwear,” and I turned my head in time to see John smirk in lieu of a reply.

“Wait a minute,” I said, abandoning one conversation to perform a hostile takeover of the other. “Why would anyone wear holey underwear?” I envisioned a one-piece cotton garment hanging in dilapidated rags off someone’s body.

“It’s a Mormon thing,” Lena replied. “John is a steak leader.” I briefly wondered what the role of “steak leader” might entail but felt the need to first attend to the holey underwear order of business. Did the Mormons consider holey underwear to be a sign of humility? I wondered. Did they have to wear the same underwear every day, until it became holey?

“But why does it have to be holey?” I continued after a thoughtful pause.

“I have no idea,” Lena said. “It’s just what they have to wear. It’s supposed to protect them I guess.”

“But how would something with holes in it protect anything?” I still didn’t get it. Lena burst into laughter.

“No, it isn’t holey! It’s holy—like blessed!” she said.

“Oh!” I forced a communal laugh rather than proceeding with questions about the steak leader position.

In time, the art of active listening, as opposed to blatant questioning, would enlighten me to the fact that the term “stake” referred to a division of the church and not, as I had surmised, a juicy slab of beef. When this information revealed itself, somewhere in the middle of a typical workday, a smile usurped my face. At the same time, I wondered if I’d ever relate to the people and customs in my new town.

This is home now, I thought, glancing at the phone on my desk. My smile faded as a lump swelled in my throat. Though I had no idea what I’d say, I felt the sudden urge to talk to my parents. Instead of picking up the receiver, I returned my gaze to the computer screen, where the clock in the menu bar displayed the time remaining in my workday. I hoped the Utah sunlight would persist long enough to afford a late afternoon visit with my surrogate family of sled dogs.

I declared a red alert for puppy arrival to all my colleagues and supervisors. Tracy looked like she had swallowed a beach ball. I’d worked at the publishing company for more than a year, and historical eyewitness accounts of the owners ogling and fawning over the kittens and critters other staff brought in by the basketful assured me of their comparable respect for the significance of my first litter of puppies. This was the second position I’d held since Nick and I had moved from Pennsylvania to Utah almost two years prior in pursuit of his passion for sled-dog racing. When he called the office on a Friday afternoon to tell me Tracy was in labor and had already given birth to her third puppy, I leapt out of my chair and ran in circles repeating “The puppies are coming!” before sprinting to the time clock and yelling in the direction of the raised eyebrows behind me as I flew out the door, “I have to go! The puppies are coming!”

I arrived at the kennel as Tracy gave birth to her fifth puppy, and she showed no signs of slowing down. Nick, who had been monitoring the proceedings for several hours, relinquished his post to look for a cardboard box, so he could transport the puppies across the street. They’d live in the shelter of our garage with Tracy until they were weaned and old enough to move into the kennel. He’d purchased a plastic kiddie pool for their enclosure and lined it with blankets for warmth. The pool awaited their arrival in the garage that day as I sat before Tracy, mesmerized by the surprisingly gory show. Tracy’s instincts served her well as puppies continued to emerge. When Nick returned with the box, she was up to number eight.

“Isn’t she done yet?” he asked.

“Apparently not,” I said.

“Oh my god!” he laughed, and I realized he’d just gained an entire team of sled dogs.

“Poor Tracy,” I said. Her eyes had assumed a wild cast, desperate as she was to finish this job. With her snout saturated in blood, she struggled to clean the puppies that pushed forth with each contraction. Nick and I stared at the untouched sac beside her, trying to determine if it was a puppy or afterbirth. When she got around to working on it, the sac revealed a puppy.

“Do you think they’ll all survive?” I asked, worried for the first time since Nick had told me about the pregnancy.

“I doubt it,” Nick said. “I’ve never seen a dog have this many puppies. She probably won’t have enough nipples to feed them all.”

The words unlatched a portal to the past, and I saw myself at eight years old, standing beside my mother at the porcelain sink in our kitchen. “I’m going to have puppies instead of babies when I grow up,” I told her.

An “old soul” is how my mother sometimes referred to me, saying I knew things I shouldn’t have known at my age. It’s possible, at the time, she believed me. In the twenty years that followed, my conviction receded, pushing the prognostic declaration into the pits of my subconscious until this moment. Sitting 2,000 miles across the country from my mother, I now watched as that childhood prediction unfolded in the form of my boyfriend’s dog mushing dream come true.

“You can do it, Tracy,” I said quietly. She looked at me with a vacant gaze and continued her work. Tiny wet puppies of various colors squirmed around her. At last, she hit the magic number and was finished. We sat in silence as she stretched out to feed all ten of her offspring. They looked like piglets with their eyes sealed shut and their ears barely perceptible on their heads. They inched forward on round bellies with rubbery legs paddling toward their mother.

“Nick,” I said, craning my neck toward the puppies, “it looks like they’re all feeding.” He leaned above Tracy, and reached in to separate the puppies.

“Wow,” he said. “She’s got that crazy long torso.”

“Do you think she can do it?” I looked at him.

“We’ll have to wait and see, sweetie.” Tracy lifted her head at the sounds of our voices, her eyes now steady and clear. She shifted her gaze from Nick to me then lay her head back down with a sigh. Nick put his arm around me, and we watched his sled team continue to nurse.

Four months after moving in to the run-down mobile home, I still hadn’t gotten used to the popping pinion in the woodburner, the sinking floor underneath that woodburner, or the whistling winds that sometimes pushed the battered old trailer to the brink of impending flight. In a strange way, these things that threatened our world actually brought Nick and I closer. We were in this struggle together, I often reminded myself—the young couple starting a fresh new life. Things would get better. And our bond would be stronger for all that we’d gone through. We’d look back on these times with fond memories. The fact that were starting at the extreme bottom made it all the more romantic, I thought. The trailer was just a starting point. A decidedly unfortunate starting point.

But for all the frights, frustrations, and inconveniences that loomed over us in the makeshift living quarters, there was one paramount saving grace that even I couldn’t deny—a grace that transcended anything built by human hands. And all Nick or I had to do to access that grace was walk outside. Across the street from our less-than-regal mobile home was a majestic wilderness. In addition to having unobstructed views of the second highest peak in Utah—Mount Timpanogos—we lived on Soldier Hollow road. By that time, Soldier Hollow had already been designated as the venue for the 2002 Winter Olympic Games biathlon event. Between our trailer and the Soldier Hollow future Olympic venue was a right-hand turn that lead to the most scenic drive of my life. I can’t count the number of times that fall we drove up the road that led to Cascade Springs, continuing through the Alpine Loop Scenic Byway to witness the shock of flaming colors as we wound through the switchback crack of a road nestled in the towering folds of deciduous-blanketed Wasatch mountains. But Cascade Springs road was impassable in winter. And that made it a perfectly acceptable, though treacherously steep, sled dog training track.

The first time Nick took me on a dog-sled ride I almost chickened out before he even had all the dogs hooked up to the sled. It was ten o’clock at night. The moonlight radiated off the snow, illuminating the world around us in a mystical glow. The dogs went crazy.

Nick’s handmade wooden racing sled was approximately six feet in length, crafted with long, slender strips of White Ash that Nick had glued and clamped to the perfect specifications before securing each with hand-tied knots of the strongest fishing line he could find. With a forward thrusting brush bow that mirrored the curve of the upright drive bow, this sled was as graceful as it was sleek. In the center of the sled, sitting delicately atop the six-foot long runners, was the basket—traditionally built to hold supplies, untraditionally built to hold me. Nick had lined the sled with thick blankets, topped with a sleeping bag, which he unzipped in preparation for our quick takeoff. He would drive, standing up at the back of the sled. I would ride, all snug inside the blankets in the cargo basket.

Nick set the claw brake and, for extra security, dug the snow hook deep into the snow behind the sled before instructing me on how it was all going to happen. He would hook the two leaders up first, Drizzle and Simba. I was to stand up front with them, holding the line between them and making sure they didn’t get tangled as he hooked up the other dogs, one by one.

Got it, I thought, no problem. I took my position at the front of the lines, only then noticing how long the lines actually were. The lead dogs, I realized, would be a good twenty feet from the front of the sled. As I was considering the implications of such long lines, Nick came running toward me with a frantic Drizzle beside him. He had to hold her up by the chain so that her two front feet didn’t touch the ground. Otherwise, he would have had no chance of keeping a hold on this dog that was bred to run. Even with Nick’s restraints, Drizzle plunged forward on her hind legs in giant leaps, and I realized that if her two front feet were to make contact with the ground, that dog would be gone in a flash to anywhere. I was beginning to get nervous.

Once Drizzle was hooked up to the line, she plunged forward in a frenzy, jerking the sled off its runners behind her.

“Hold her!” Nick yelled, as he ran like crazy back to get another dog. I tried my best to hold Drizzle by the shoulders and convince her to contain her mania. Next came Simba, our gentle black giant whose only previous mission in life seemed to be that of sweetly pining for as much attention as he could get. I wasn’t worried about Simba, until I saw the look in his wildly possessed eyes. Somehow, the Simba that Nick attached to the line next to Drizzle seemed to be inhabited by the spirit of a dog I hadn’t yet met. One that I probably wouldn’t have cared to, given a choice. While Drizzle had only partially accommodated my firm directive of settling down, Simba would have none of it. The sixty-pound wad of muscle lunged forward with all his might, and out of his throat came blood-curdling sounds that didn’t seem natural. A cross between a howling bellow and an agonized wail launched with every thrusting lunge. The little wooden sled dangled on the end of the flailing lines, and my blankets went asunder in the jumble.

“HOLD HIM!” Nick shouted as he approached the next set of lines with Lefty. By that time, I was as frantic as the dogs were, yelling back at them and forcing my arms between the two leaders as they barked and screeched and yowled in my ears. The mind-numbing ruckus only got worse as more dogs took their places in line.

I have one job, I told myself, to keep the leaders untangled and steady. At one point I thought Lefty and Whitey seemed to be on the opposite sides of where they’d started. Nick must have noticed at the same time and came forward to untangle them. As I watched Nick fling little Lefty over the line and back into position, I saw Swede jump straight up in the air and land on Mufasa. Both dogs started jumping, and lines twisted everywhere. Nick continued up and down the line of dogs, fixing the tangles and adjusting positions. The dogs seemed determined to raise the dead with their heart-pumping uproar.

I have one job, I kept telling myself. My breath was now coming in short gasps. My heart felt like a hummingbird’s, ready to explode. One job, I thought.

“Come on, come on, get in the sled!” Nick shouted from the helm. I released my hold on Simba and ran like crazy, jumping into the sled and falling clumsily into the cushion of blankets just as the hook came loose.

“HAaaaa-Ayyyyke!” Nick shouted.

Whoooshhhh! We were off like an arrow into the night, and absolute silence echoed in my ears.

Shhhhhhhh, Shhhhhhhhh, Shhhhhhhhh . . . Nick’s delicate wooden sled glided over the snow like a ballerina on her stage.

“Wow,” I whispered.

“Cover up,” Nick said, reaching down to pull the sleeping bag around me. I adjusted my position after having fallen so haphazardly into the sled. I pulled my hat over my ears and snuggled down into the blankets, drinking in the silent beauty of the winter night. As the dogs slowed to pace, a light snow began to fall.

“What do you think?” Nick eventually asked. He couldn’t see the tears in my eyes.

“Unreal,” I said.

“Yeah,” he replied.

The ride lasted for about an hour. We went part of the way up Cascade Springs road before turning around for the descent. It was a hairy turnaround in the middle of the night on a narrow road, but by that time, a kind of absurd tranquility had infiltrated my body and soul and we could probably have launched right over the side of that mountain before anything shook me up again. The dogs seemed to have found their balance as well, never again fidgeting or making a sound after the initial disarray. This was a team in harmony, I realized, not caring that I had no earthly idea as to how it had all come together.

The next day I was still in a daze from the dog-sledding experience. I made us a big brunch of fried potatoes, toast, and eggs—mine over-easy and Nick’s sunny-side up, the way he liked them. We sat at the table in contented silence.

“Hey,” I said, finally shattering our morning reverie as something popped into my head from the night before. “You never said ‘Mush.’”

“Huh?” Nick looked up from dipping his toast into the sunny part of his egg.

“Mush,” I repeated. “You’re supposed to say mush when you mush dogs. You never said it.”

“Nobody says mush,” he informed me. “The dogs wouldn’t even know what to do. You may as well say banana,” he smiled.

“What?” I couldn’t believe it. “Then why is it called dog mushing?”

“I have no idea,” he said. “I’ve never heard anyone say mush in all the years I’ve run dogs. The word is completely meaningless,” he said, and he pushed his plate away, the whites of his eggs still completely intact with the indentation of a perfect round circle where the sun used to be.

~~

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