When I was a senior in college, I lived many American women’s dream: I ate whatever I wanted to and lost weight. Not only that, but the more I ate, the more weight came off. Clothing was loose that had fit snugly just months before, and I had to use a belt to keep my favorite pair of pants from sliding off my waist.
Of course, other strange things were happening as well. I was tired all the time, my head felt like it had been stuffed with cotton, I was ravenously hungry but nauseated after meals, and I kept finding tickets in my pockets for performances that I’d forgotten that I’d gone to.
I attributed my symptoms to having just been dumped.
“I can’t believe he broke up with me!” I said one night to Marie, my best friend and college roommate, as I gnawed on an oversized chocolate chip cookie. “I was supposed to be the one who hurt him.” I wiped a crumb off my chin, then ripped off a piece from a loaf of bread and smothered it with butter. “Do we have anything else to eat?”
It was as if I were on heavyweight crew. After waking up to a breakfast of two bananas covered in peanut butter, I ate a scone as a mid-morning snack before devouring three slices of bread with Muenster cheese, a cup and a half of chickpeas and yogurt with raisins, a plate of pasta and an ice cream sundae. And then only a cup of tea and a plateful of cookies stood between me and dinner, after which I could have my before-bed snack.
I also couldn’t stop drinking. Not alcohol, but water. Cups and cups of it. I drank upwards of a gallon a day and went to sleep fantasizing about the glasses that would await me when I woke up, ice cubes sparkling in the morning light. As a result, I constantly had to pee. I surreptitiously disappeared into the bathroom after every meal, a habit which, when added to my binge eating and weight loss, made it seem that I was bulimic. Lectures now necessitated an aisle seat; conversations could last no more than twenty minutes. Even sleep was not a refuge. Sabotaged by the four glasses I had drunk at dinner, I woke up upwards of three times a night on the verge of wetting my bed, and made up for the liquid I’d lost by lapping water from the bathroom faucet on my way back to my room.
Wondering if I were the only one suffering, I casually brought up my thirst in conversation, as if I were at a party trying to subtly gauge whether the host also did cocaine.
“You know, it’s the funniest thing,” I’d say at lunch, wolfing down a turkey club with extra mayonnaise. “I’m feeling a little thirsty. Is anyone else feeling, you know, a little thirstier than normal?” When no one responded, I’d have to act like I wasn’t into water, either, and come up with another excuse for why I kept sneaking into the kitchen, where I’d duck behind the soda machine and chug another sixteen-ounce glass.
When it became clear that none of my other friends were falling asleep with visions of Italian sodas in their heads, I chalked my thirst up to my appetite (surely I needed liquid to balance out my food), and my appetite to my depression. The fact that I was losing weight while eating 7,000 calories a day was a bit harder to explain, but as I lost first five, then ten, then fifteen pounds, I hypothesized that I had found dieting’s holy grail: if you stopped worrying about your weight, it would go away on its own.
One afternoon, after weighing in at my lowest weight since eighth grade, I decided to reward my (lack of) efforts with a plate of cookies, as if I were on some bastardized carbohydrate version of the Atkins plan. I had started dating a new guy, I looked good in a bikini—I obviously deserved nine mint Milanos and seven chocolate-dipped grahams. Forget the fact that my vision was so blurry that I couldn’t see, and waves of nausea rippled through my body. I gave my new boyfriend what he called a “sweet kiss,” tottered back up to my room, vomited into our communal toilet, and collapsed into bed. As I lay on my back, staring up at the ceiling, I thought to myself, “Wow, I actually just tossed my cookies.” Then I needed to pee.
* * *
Doctors don’t know what causes Type 1 diabetes, but the disease’s basic effects on the body are well-understood. When a non-diabetic’s body releases glucose into the blood stream (from either food or energy stored in the body), the pancreas secretes a hormone called insulin. Insulin acts like a key, unlocking the body’s cells so that they can take the glucose out of the blood stream and use it for energy. The pancreas, working in conjunction with the liver, maintains a consistent concentration of glucose in the blood regardless of what the person eats.
Type 1 diabetes is an autoimmune disease in which the body attacks and kills its insulin-producing cells. Without insulin, the glucose can’t get from the blood stream to the cells. Blood sugar concentrations rise but since the body can’t absorb any of the energy, it literally begins to starve—hence my weight loss. As blood sugar levels get higher, the body flushes out the excess sugar in the urine (diabetes’ full name, “diabetes mellitus,” literally means “sweet siphon”). The result of all this flushing? Excessive thirst. High glucose concentrations affect tiny blood vessels in the eyes—and, therefore, your sight—and make undiagnosed diabetics’ breath smell like juicy fruit (when he referred to my “sweet kisses,” my boyfriend was speaking literally).
Untreated high blood sugar, or hyperglycemia, damages all parts of the body, with complications that range from blindness to stroke to kidney failure to heart disease to amputation. Hypoglycemia (or low blood sugar), on the other hand, is caused when excess insulin in the blood pulls too much glucose out of the blood stream. Going too far in this direction can quickly lead to seizures, coma, and even death.
* * *
DUH, or the Department of University Health, is a six-storey cinderblock building built during the glory days of the 1970s that delivers health care to students, faculty, and members of the community. Among undergraduates, DUH is both an acronym and an exclamation—as in, “Duh, I know I need my stomach pumped, so why did you give me a pregnancy test?”
Apparently, a diagnosis of diabetes freed me from suspected sexual promiscuity, because as far as I know, my blood work did not involve my reproductive hormones. Instead, I found out that my glucose levels were five times what they should have been and that I’d almost passed out in a hyperglycemic coma. A friendly doctor apologized for having to diagnose me, and sent me upstairs to the inpatient ward.
My hospital room was bright and smelled like spring, thanks to an arrangement of hydrangeas from a friend’s mother that arrived less than a day after I checked in. A television dangled from the ceiling, and an IV stand stood at the head of the bed, dripping a bag of saline into my arm as I lay on the plastic-covered mattress. In the bathroom, a white, plastic contraption called a “hat” hung from the toilet bowl, collecting my urine so that it could be tested for sugar and ketones.
Up to the moment of my diagnosis, I had always been exceptionally healthy. I had never broken a bone or had surgery; I wasn’t allergic to anything except ragweed; my cholesterol was notably low. I hardly even got colds. Sickness—let alone disease—was an abstract concept, something for me to worry about in the distant future. And yet here I was, 22 years old, diagnosed with a disease that I didn’t know anything about, but which I realized had no cure. Marie insisted on staying with me that night, curled up on a cot next to my hissing radiator as I lay in the darkness, trying to cry but too confused about what was happening to actually produce tears.
On my second day in the hospital, I was still in shock—both about having a disease and about the fact that reality didn’t match up with the soap-opera “Getting a Disease” fantasy I apparently had tucked away in my subconscious, along with “Marrying Jon Stewart” and “Winning an Oscar.” Where was the dramatic music? Where was my ex-boyfriend, arriving on bended knee to tell me he’d made a mistake?
And where were the cute interns? Perhaps they’d been whisked away to fulfill someone else’s “Visit to the Emergency Room” dreams, since they certainly weren’t on my floor. Instead, I had Laurie, a plump middle-aged nurse who wore teddy bear-printed scrubs and gave me frequent, much-needed hugs. Since all the diabetes specialists were off duty for the weekend, Laurie taught me how to give myself insulin shots.
“So you want to try to get rid of the bubbles,” she said as we both pulled insulin out of small vials and into disposable syringes, flicking our fingernails against the bottles to drive out the air. It looked like we were about to shoot up. “Then pinch a bit of skin between your fingers, and stick it in.”
There’s something disconcerting about realizing that your stomach has the same consistency as a Jell-O mold. Despite the fact that I didn’t have much body fat, I still felt like if I had just embedded some canned fruit into my abdomen, it could have doubled as dessert.
Between trying to learn how to gauge how much insulin to take for every meal, getting used to pricking my fingers to test my sugar levels, and learning everything I could about diabetes, I felt overwhelmed. While at first I’d rebelled against the idea of staying in the hospital, by the third day, I didn’t want to leave—my room became a refuge from everything else I was supposed to do. I had an art history exam. But how important was Kandinsky’s use of color when I didn’t know if I could eat pasta? I was supposed to write a screenplay within the next two months. But you can’t write a screenplay without a computer, I told myself, sinking back onto my plastic sheathed pillows and flipping on a rerun of “The Golden Girls.”
Besides, why leave when you get to feel so special? Friends visited daily, dropping by on their way to and from class.
“Come in, sit down,” I directed from my bed, waving my hand toward the two pleather chairs that sat by the window looking out onto the unforgiving New Haven gray, my hospital wrist tag taking the place of a society woman’s golden bracelets. “Make yourselves at home!” I wrapped my hospital dressing gown around me like a satin robe.
I could offer my guests conversation and syringes, but food and drink were tough—alcohol obviously wasn’t allowed in the building and the water faucet in my bathroom was off-limits, thanks to the hat full of my urine that dangled appetizingly from the toilet’s edge. Instead, I stockpiled saltine crackers and plastic cups of orange juice, remedies for low blood sugar that I decided could double as finger food.
“Another cracker?” I’d ask friends as they sat curled up next to the radiator. “I’m sorry I don’t have any cheese to go with it. But I think you’ll like this juice.”
By the fourth day after my diagnosis, I had established something of an afternoon salon, a “catch-up-and-chat” session attended by some of my closest friends.
“I brought you a book!” said my friend Marc one afternoon, walking into a room full of people nibbling on Saltines. We gathered eagerly on the bed and chairs to hear the story. An illustrated children’s book, it was called I Have Diabetes. It didn’t look particularly captivating, but another friend had just finished demonstrating a game in which he stuck his hand down his pants and fished for pubic hair, and we were up for something new.
“When you get diabetes,” Marc read in a slight sing-song, as if addressing a room full of second graders. “Your whole world changes. Nothing will ever be the same again.”
The accompanying illustration showed a small child laying on a hospital bed, looking confused, a nurse with a crisp white hat standing beside the bed, brandishing a needle.
“Now you will need to test your blood sugar every day,” read Marc. “And take shots of something called insulin, to keep you alive.” He showed us a drawing of the same child wincing as the nurse jabbed a needle into his upper arm. The room was silent.
Marc quickly flipped to the next page. “People will tell you that diabetes can do very bad things to you,” he read. “They might talk about your heart, or your eyes, or about losing your legs.” He began to show us the accompanying picture and thought better of it, but not before I’d gotten a glimpse of the little boy in bed, dream bubbles above his head imagining himself with a missing foot. “Some might even mention your kidneys.”
“You know,” said Marc. “Maybe we should do something else.” For the first time that afternoon, the room fell awkwardly quiet. I tried not to cry.
The best things about diabetes—that it isn’t immediately terminal, that you can avoid many complications by carefully monitoring your blood sugar and watching what you eat—are also the worst. Every misstep means potential problems down the road—numb feet leading to amputations, leaking capillaries in your eyes stealing your sight—and every blood sugar reading can, if you hold yourself to high standards, potentially be blamed on something you did. This is somewhat irrational since blood sugar can be affected by things out of your control—stress, hormones, fatigue, illness, time of day. But I quickly began to base my moods on the numbers on my glucometer, the small machine I now carried with me to test my blood sugar. If it was in a safe range, I was happy. If it wasn’t, my fears about diabetes translated into frustration with myself. Where was my willpower? Why couldn’t I do a perfect job? Succumbing to a cookie began to feel like a kind of suicide—and I certainly didn’t want to kill myself.
One morning, Laurie walked into my room with a huge smile on her face. “We have a special treat for you today,” she said.
I looked up from my breakfast tray, where I had finished the eggs, sausage and bacon and was hard at work buttering my toast. Now that I was getting insulin and my body didn’t need to flush excess sugar out through my urine, I was no longer thirsty—but my hearty appetite stuck around.
“What is it?” I asked. I had spent the morning examining a gift from one of my friends—a pink dishcloth from a Korean deli that featured an elephant standing in a green pool of liquid with the enigmatic caption, “Contented Golf.” I was ready for a distraction.
“There’s another diabetic here.”
Now she had my attention. “Right here? On this floor right now?”
“Yes,” she said. “His name’s Jeff. Would you like to meet him?”
I enthusiastically agreed, and ten minutes later I walked out toward the nurses’ station. A man was waiting for me, his greasy brown hair pulled back in a ponytail. He wore a white t-shirt with a picture of a motorcycle, an ironic choice, since he was in a wheelchair.
“You must be Catherine,” he said, reaching up to shake my hand.
“Yes,” I said, reluctantly. “You’re Jeff?” I was hoping that there had been some misunderstanding. Not only was Jeff in a wheelchair, but he had a large bandage wrapped around his right thigh.
“What happened to your leg?” I asked him, once he had wheeled over to a couch so that I could sit down, too.
“Skin graft,” he said. “Fucking painful.”
“But that’s not because of diabetes, is it?”
“Oh, for sure,” he said. “I’ve got nerve damage in my feet, so I can’t feel it when I step on things. Got a big infection. Doctors said it could turn to gangrene.”
Gangrene? I looked around to try to find Laurie, but she had disappeared to take care of the flu patients down the hall.
“Yeah, I’ve got trouble with my eyes, too,” said Jeff, as if commenting on the weather. “I’m just hoping my kidneys don’t go. My father’s on dialysis and let me tell you, it’s a bitch.”
But these are the stories that people like to share, tragic anecdotes that somehow you, as a sufferer yourself, are supposed to help them deal with.
“My mother had diabetes,” said one family friend, sitting in a chair by my window on a rainy afternoon.
“She did?” I said, hoping that he was going to follow this up with an enlightening tale about how she was now ninety five and going strong, with no complications and a newfound love for life.
“Yes,” he said. “She died from it.”
“Oh.” I wrapped my gown closer around me and cultivated feelings of guilt and self-hate for having just eaten an apple, which had raised my blood sugar out of my target range. “That’s really too bad.”
“She had a tough time,” he continued. “She lost her leg before it killed her.”
“It took twenty two operations.” He gazed at my hydrangeas. I wondered why they hadn’t just taken off her leg to begin with. Skin grafts, dead amputees—what was next? A blind amputated heart attack survivor on dialysis?
Diabetic pets, as it turned out. My friend Brian’s family had a cat that, despite twice-daily insulin injections, kept peeing on the couch.
“At first we thought the injections would help,” said Brian, sipping some apple juice. “But that didn’t work and my aunt suggested that we put the cat to sleep.”
“Just for peeing on the couch?” I asked.
“Well, she was peeing everywhere. That was just the most obvious spot.”
“My uncle’s diabetic, too, and he refused to let her do it. He said, ‘I’m diabetic and you’re not putting me to sleep.’”
“What’d she say?” I asked.
“Yeah, but you’re not peeing on the upholstery.”
One afternoon, Marie arrived in my room carrying an oversized card she had made, signed by everyone she could find in the dining hall. As she sat perched next to me on the bed, I got misty-eyed as I read people’s get-well wishes. It was as if I were witnessing eulogies at my own funeral—I felt like Huck Finn and Tom Sawyer when they fake their own deaths.
Except, of course, I wasn’t dead. I was just diabetic, whatever that meant. Everything was so new that the reality—and permanence—of the disease had not yet fully hit me. I didn’t know that from then on my life would be punctuated by ten finger pricks a day and injections every time I took a bite of food, injections that would eventually be replaced by a small blue machine called an insulin pump that I have to keep attached to me in order to stay alive. I didn’t know that one of the other good things about diabetes—it’s not obvious from the outside—was also one of the most frustrating; looking normal means that people treat you as if you’re normal, even if you’re constantly counting carbohydrates, trying to guess insulin dosages, worrying about complications, and blaming yourself every time your blood sugar is high. My therapist once called diabetes an invisible disability, pointing out that if I were to, say, lose a limb, at least people would give me credit for everything I managed to accomplish.
“You know, they’d be like, ‘Wow,’” he said. “’Look at all that Catherine accomplishes, despite her missing arm.’” Feeling antagonistic, I pointed out that, if I didn’t control my blood sugars, I could lose a limb. But even then, I still wouldn’t be able to eat baklava.
Ten days after I’d entered the hospital, I finally decided to leave. I could have checked out earlier, but I didn’t want to—in the hospital, my disease and I were special. We got gifts. We had breakfast in bed. Once I left, I knew that I would be forced to reenter my old life, to act as if things were normal, even though they weren’t at all.
The worst part was putting on my pants.
“Were these hanging on the radiator?” I asked Laurie, as I slipped out of my hospital gown on my last morning at DUH. By this point in our relationship, I felt completely comfortable changing clothes in front of her; we were practically blood sisters, after all.
“No, sweetie, why?” she asked.
“Nothing. They’re just a little tight,” I said, struggling to force the zipper. I thought that perhaps, inspired by the room’s climate control, they might have shrunk two sizes. “Do you have a scale around here?”
I knew I’d been eating a lot in the hospital, but eleven pounds in ten days still felt like a bit much.
“This is water weight, right?” I asked her, squatting to try to loosen the waist of my pants.
“Probably not,” she said, looking at me with genuine concern. “Sorry.”
It was a bright February morning when I finally left the campus hospital, clutching my basket of hydrangeas, tight pants clinging to my thighs. Marie had pulled her car around to the front of DUH, and her Toyota Previa sat idling outside, its exhaust steaming in the cold air.
Laurie had come downstairs with me. Handing me my “Contented Golf” towel, she gave me a hug and a kiss on the cheek.
“You’re going to be okay,” she said, clutching me to her chest. “It’s all going to be all right.”
Students scurried past us on their way to class; in the distance, bells in the clock tower struck ten. Marie put my bag in the trunk and I climbed into the front seat.
Catherine Price is a regular contributor to ASweetLife, she writes the blog The Reluctant Diabetic