Tara is one of millions of people who deals with celiac disease as a reality of her every day life. Via this interview, Tara and I hope to educate people about what celiac disease actually is, the challenges and very real health danger it presents, and how to accommodate someone in the workplace who needs a gluten-free diet.

What is your exact condition that requires you to have a gluten-free diet and how did you find out you have it?

I have celiac disease, which is an immune system condition through which the body attacks and destroys the nutrient-absorbing villi in the small intestine when gluten is ingested. Simply put, gluten is a protein in wheat, barley, and rye, and it hides in many other processed foods as a thickening, anti-caking, and flavoring agent, to name a few hidden sources.

I had been ill, on and off, for several years. At the tail end of 2001, I contracted what doctors diagnosed as a stomach virus. The virus never went away, and I ended up in the hospital after two trips to the emergency room. I spent nine days in the hospital before doctors started to test for other conditions. A biopsy of my small intestine in February 2002 confirmed that I suffered from celiac disease.

How long have you been on the diet?

I have been on the gluten-free diet since my celiac disease diagnosis more than ten years ago.

What are some of the challenges (and benefits) of being on this diet?

It’s a complete lifestyle change. In all aspects of life, from social to professional, people come together around food. It isn’t something we think about if not prompted. This is natural, innate behavior. The social ramifications of being on a diet that prohibits the general consumption of food has been the biggest challenge for me. It is one I will never overcome. I accept it and have learned to adapt by being honest with people about why I am not eating at a social event or a work lunch or a conference buffet, etc. I often carry my own food to ensure that I am able to eat something at a food-related gathering.

Eating at restaurants or in other people’s homes is an even bigger challenge. Trace amounts of gluten can damage the intestine to an unknown extent. This means that cooking surfaces and utensils used for bread or other gluten containing foods can cross-contaminate otherwise gluten-free foods if not thoroughly washed between uses. I can’t even dip mayonnaise out of a jar at someone else’s home or use their butter due to the risk of contamination from bread particles. Most people don’t realize the risks or have full awareness of the many places gluten can hide. I read all labels very carefully. If food is not labeled as “gluten free” and has an ingredient like “natural flavoring,” or any other unidentifiable source, I can’t eat it.

The benefit, for me, is good health. All sorts of problems can develop in people with celiac disease who don’t follow a gluten-free diet including a host of other autoimmune diseases, anemia, osteoporosis, infertility, neurological disorders, and even cancer. One statistic I read estimated that 42,000 children worldwide die each year from undiagnosed celiac disease. Not following a gluten-free diet, to me, is the equivalent of going undiagnosed. Another study showed that people with undiagnosed celiac disease have a 400% higher mortality rate than those without celiac disease. This makes it worth sticking to the diet.

What are some of the social hurdles? Do you find most people are understanding?

I’ve found most people to be incredibly accepting, more so than I would have expected. When I first started working at Penn State—on my first day here, actually—I walked into my cubicle to find a welcome muffin on my desk! I had to explain to my thoughtful co-worker that I had celiac disease and could not eat muffins made with traditional wheat flour. I was somewhat embarrassed to have to start our relationship that way, but I learned that she knew more about celiac disease and the gluten-free diet than most people at the time. She took the muffin back to her cubicle and, to this day, prepares gluten-free food whenever we get together and goes out of her way to provide a gluten-free option at social events and professional gatherings if she knows I’ll be in attendance. It is above and beyond, and this level of compassion and understanding makes the condition easier to deal with.

The social hurdles are often cases in which people have the best intentions but don’t have sufficient knowledge to accommodate my needs. Gluten is hidden in so many foods, and most don’t know everything to look for when considering what it takes to prepare a gluten free meal. It isn’t as simple as eliminating overt ingredients of wheat, barley, and rye. I have to think about everything, even the brand of spices used to flavor my meal since wheat is used as an anticaking agent in some.

Any examples of someone not being very understanding, and how you handled it?

Like I said, most people are accepting and really want to help. The problem comes with lack of understanding. I’ll target our own group as an example (because I know we appreciate constructive feedback). I’ve noticed that the registration forms for various IT functions now provide an option for special dietary requests. This is an excellent step in the right direction. To be as safe as possible, I make a point to gather as much information about the food provider and their preparation methods as I can prior to the event. There have been several occasions in which I was not comfortable partaking of the “gluten free” option after learning of the preparation process. My concern is that those not as familiar or comfortable with gathering more information may eat the “gluten free” meal and become ill, as did happen in one case I’m aware of. It’s important to remember that the gluten free diet is often not a choice, like other diets may be. It is a health requirement and should be treated as stringently as a peanut or shellfish allergy would be.

Has it affected you at work? If so, what are some situations where it has?

I’m affected with every work-related function that involves food—from birthday lunches to business meetings to office pot-lucks to conferences and events—there is always some level of discomfort. This has a lot to do with my personality, I think. My biggest source of discomfort with regard to my diet is creating an uncomfortable situation for others. Here’s an example. I recently attended a conference where many of the dinners were “on your own.” One night, I ended up with a large group of people who had already chosen a restaurant. After hearing my discussion with the host, they insisted on finding a restaurant where I could eat safely. Not wanting to put everyone through the fiasco a second time (it was getting late, and everyone was quite hungry), I checked my newly installed iPhone app to locate a restaurant in the vicinity that claimed to provide gluten free options. The woman who had led us to the first restaurant saw one she recognized on the list, and off we went. The conversation at this restaurant fared even worse than the first, ending with the manager saying he could not guarantee the food would not be contaminated in the preparation process and did not recommend that I eat there. With the group already seated, it took all my powers of persuasion to convince my new friends that I was happy sipping a beverage until I returned to my hotel room, where gluten free food awaited. (It travels with me everywhere.)

What about the current trend of people choosing gluten-free diets – is that good or bad for people with celiac disease/gluten allergies (more selections at stores, people more likely to incorrectly think your condition is a choice, etc.)?

Well, the obvious bonus is that gluten free food is more widely available than ever before. I remember, when I was first diagnosed, sending a letter to a list of restaurant chains describing my dietary requirements and asking if they offered any menu items that would accommodate my gluten free diet. With the exception of one, responses came back with differing versions of “I’m sorry but we are unable to accommodate those requirements.” Today, you can count on most people in the restaurant and food industry being familiar with the term gluten-free, and many restaurants now offer gluten free menus or will highlight the gluten free options on a regular menu. It’s much easier to have that dialog with a server, host, or chef than it ever was before, and grocery shopping is also easier with more foods being labeled as gluten free. I attribute these changes, primarily, to the rise in awareness of the gluten free diet.

The caveat is that, while awareness of the gluten free diet is at an all-time high, awareness of celiac disease remains fairly low. People are not making the connection between the diet and the disease with which it is dependently linked. For some reason, people have latched on to the gluten-free diet as a health trend rather than as a treatment for celiac disease and gluten intolerance. According to what I’ve heard and read from doctors and nutritionists, the gluten free diet provides no heath benefits to people who do not suffer from either of those conditions. In and of itself, the gluten free diet is not a weight loss diet and, in fact, many gluten free foods contain more fat and calories than their gluten containing counterparts. People may be mistaking low-carbohydrate diets for gluten free—I’m not sure—but for the normal population, gluten free does not automatically mean healthy.

I think once anything reaches the level of trend or fad it runs the risk of losing credibility, and I’ve seen some examples of this in the news. There was one case in which a restaurant chef admitted on Facebook to lying about the gluten free status of food he prepared where he worked. The chef did not take gluten free requests seriously, claiming the diet was a fad. Well, I guess it is a fad, but it is also much more. This level of ignorance is devastating to people with celiac disease.

I understand you’ve written about your experiences – where can that be found?

I wrote an article titled “Celiac disease remains tough to diagnose” for the State College Celiac Support Group that appeared in the Centre Daily Times a while ago. Also, to promote education during celiac disease awareness month last May, I shared the portion of my memoir that deals with my celiac disease diagnosis. All this content can be found in the “articles” and “gluten free” sections of my website at http://taracaimi.com.

Anything else you might like to add?

As you can probably tell, I’m dedicated to steering the recent rise in awareness of the gluten free diet toward better education and understanding of celiac disease. I want to thank you for highlighting this as an important diversity topic. Because of the natural connection between food and social activities, it is easy to overlook the related challenges for those of us with dietary restrictions. It’s hard to think that food could be anything but a unifying factor, but it’s important to remember that it can be just the opposite as well.

I recommend that people talk to those they know who have dietary restrictions to learn more about their experiences and also not to take it personally when someone with a dietary restriction refrains from eating in any given situation. This is often not a choice. When hosting an event, if you’d like to include options for special diets, be sure to consult an expert on all requirements to ensure the safety of those options. Food is good. For some of us, finding safe food is just a little more complicated.

Tara Streno saw her family doctor once a month for about a year, and John Askey received aggressive treatments for a disease he may not even have had before arriving at what each feels is the correct diagnosis. From weight gain and weight loss, chronic fatigue, migraines, anemia, memory loss, joint pain, and insomnia to treatment for depression, irritable bowel syndrome, Crohn’s, and even Lyme disease, the medical symptoms and health care experiences of an undiagnosed celiac patient sound like they belong in an episode of Discovery Channel’s Mystery Diagnosis.

“I was basically told that I was crazy,” said Streno, “like I had all these symptoms, and I brought them on myself.” In truth, more than three hundred signs, symptoms, and disorders may be associated with celiac disease, according to the Celiac Sprue Association, making the detective work toward an accurate diagnosis that much more complicated.

Celiac disease is an autoimmune disorder triggered by gluten, which is found in all forms of wheat, as well as barley, rye, and to some degree, oats. When people with celiac disease ingest gluten, the small intestine is attacked and damaged by their bodies’ own immune system responses. The damage with each ingestion is cumulative and negatively affects the body’s ability to absorb nutrients. Over time, this can lead to an unfathomable variety of associated problems, including other autoimmune diseases like lupus or diabetes, osteoporosis, infertility, neurological disorders, and even cancer. The only known treatment for celiac disease is the strict elimination of gluten from the diet and lifestyle.

Adding to the complexity is the fact that gluten is found not only in cakes, cookies, breads, and other flour-based products, but is also hidden in seasonings, marinades, medications, and many other elusive places. Gluten is in more foods and products than most people would think to imagine, but Streno and Askey must think about those potential gluten sources multiple times every single day.

Over the course of the year prior to her diagnosis, Streno experienced migraines, depression, numbness in her hands, severe canker sores, and “every GI (gastric) symptom” in the book. She was diagnosed with anxiety, irritable bowel syndrome, stomach ulcers, Crohn’s disease, and “intestinal cancer was a possibility,” she said.

Despite frustration with her experiences, Streno had to admit she was lucky to get an accurate diagnosis after only one year of illness. The average time from the onset of symptoms to a celiac disease diagnosis in the U.S., according to The University of Chicago Celiac Disease Center, is four years.

Askey wasn’t so “lucky.” In summer of 2005, he began noticing a tingling sensation or, what he referred to as pinpricks on his skin. Because Askey regularly handles agricultural pesticides at work, he received blood tests accordingly, but nothing showed up in the blood work to verify any relation between the pesticides and his symptoms.

Soon after, Askey began experiencing sleep disruptions. “I didn’t sleep through the night from summer 2005 until February 2009,” he stated. “Not one night.”

Over the course of those four years, Askey would struggle with severe fatigue, headaches, memory loss, light sensitivity, dizziness, and brain fog. After countless blood tests, a sleep study, MRIs, and bone scans, Askey, in desperation, responded to an advertisement for Lyme disease treatment and began an exhaustive series of antibiotic therapy treatments that would last a full year and cost multiple thousands of dollars.

Throughout all that, Askey’s symptoms persisted. He still couldn’t sleep, had lost more than twenty pounds, and was coming to the end of his rope. “I thought I was dying,” he said without pretense. “I thought, I’m dying and nobody knows why. And I accepted the fact that I’m probably just going to die.”

It was then that Askey’s neighbor, with whom he’d briefly spoken about his symptoms, was diagnosed with celiac disease. Knowing they’d suffered from similar symptoms, Askey’s neighbor shared his story, prompting Askey to request the test as part of his regularly scheduled blood work. For the first time in almost four years of illness, Askey finally had something conclusive. His initial tests were positive for celiac disease.

Askey remembers getting the phone call with the blood test results. He’d just finished eating a piece of cake. “My heart just sank because I love to eat. And so …” Askey’s voice trailed off for a moment, “… I had another piece of cake.”

Streno, a self-proclaimed “foodie” and practiced baker, had a similar experience. “When I first went on the diet, my best friend got married, and he got all these different cakes. I fell off the wagon completely, and I really paid for it. That was the last time I ever fell off the wagon,” she said.

The same is true for Askey, who went completely gluten free after further testing led to a final, positive diagnosis in spring 2009. Though relieved to finally have a diagnosis, he knew his life would never be the same.

Both Streno and Askey describe the gluten-free diet as a complete lifestyle change, stressing the constant need for careful planning. Streno carries gluten-free snacks in her purse, packs her lunch for trips to the mall, and both wonder about the feasibility of future vacations.

At Askey’s home, the whole family has switched to gluten-free pasta. They don’t share a butter dish due to cross-contamination from crumbs or particles of gluten which may be left behind from buttering toast, and they now use squirt-bottles for all condiments.

Streno can tell by her body’s reaction when she has unknowingly ingested gluten, but, she admits, the risk of cross-contamination through food preparation is high. While she has identified a few restaurants she feels are safe, Askey is more careful. He doesn’t experience digestive upset when contamination occurs but knows that intestinal damage may result from the slightest contamination. “It only takes a little bit of gluten to undo months worth of abstinence,” he said “so it’s really imperative that you never get any.”

With more gluten-free products hitting the shelves every day, celiac disease awareness is on the rise, according to Streno. “It’s a lot easier for us now than it was twenty years ago,” she said.

Still, both Streno and Askey share a desire for better education and support. Askey stressed the need for people to participate more actively in their own health care. “We need to ask questions,” Askey said. “Sometimes we need to dig deeper on our own. I was guilty of thinking that doctors were all knowing, and that was my fault, not theirs. Sometimes it just takes persistence.”

Askey recently attended a seminar presented by Dr. Alessio Fasano, Director of the Center for Celiac Research at the University of Maryland School of Medicine. “Dr. Fasano explained that out of all the autoimmune diseases the only one they know the trigger for is celiac disease, and if you remove the trigger it gets better. It’s the only autoimmune disease that gets better,” Askey said.

Once gluten is effectively eliminated, a person with celiac disease can lead a completely healthy life without supplemental medication or medical procedures. This, however, hinges on timely and accurate diagnosis and treatment. According to the Celiac Sprue Association, untreated celiac disease increases the risk that other complications—some irreversible—will develop.

The State College Celiac Support Group has been a valuable resource, providing information and personal support for both Streno and Askey. Each has noticed health improvements and a reduction in symptoms since beginning the gluten-free diet. “The foggy brain got better,” Askey said. “I no longer feel like I’m dying.”

Streno is in the process of planning her wedding, and this time, she assures, the cake will be gluten-free.

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.

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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.

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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

The next couple of days were a blur. I didn’t get any better. I lost more energy and more weight than I imagined I had at my disposal to lose. I was thinner than I remembered ever being. For days I avoided looking in the mirror because I simply didn’t recognize the person who looked back. I gave up on trying to get better and spent all my energy going from the couch to the bathroom and back to the couch and then back to the bathroom. I stopped wondering why this was happening to me—after all I’d been through in Utah—after moving home to make a fresh start. My health had been failing for years, and there was simply nothing I could do about it.

On the seventeenth day of the stomach virus, I rolled off the couch and crawled into the bathroom. As I wondered what could possibly be left to purge, the sharpness of a thousand daggers crisscrossing through my abdomen doubled me over in searing pain. I had a split second to wonder what in the world could be wrong with me before an intense wave of nausea lifted me up to the sink where I proceeded to eject the only thing I’d found in the house to eat that day—half of a tunafish sandwich.

I leaned my now ninety-pound frame into the sink and reached for the spigot. The hand that turned the spigot was nothing like my own. Projecting from the weathered skin, spindly bones disguised themselves as fingers with yellowing nails that curled over their tips. I wondered when I had turned eighty.

Then I realized that no water was coming out of the spigot. I turned it frantically as far as I could turn and reached for the other one. Nothing. It was then that I heard the utility trucks and the sounds of people working in the yard of my little rented house. You have got to be kidding me, I thought as I pushed myself up from the sink, raising my face to the mirror. A thinly veiled skeleton stared back at me with a vacuous expression. There was no flesh under the skin that stretched over her sunken cheeks. Paper thin eyelids hung low over the cloudy gray orbs that seemed to wander in their sockets. I quickly looked away from this specter and sank to the floor, letting my back rest against the cool porcelain of the tub in anticipation of the next abdominal convulsion.

There was a knock at the door. Before I could move, I heard the jingling of keys in the lock, then footsteps through the kitchen. Seconds later, the bathroom door flew open and my mother stood looking down at me from the doorway.

“We’re going back to the hospital,” she said. And I was in no condition to argue.

Next ~ Part 5: Dignity