Okay, so that’s a shout-out to me: today marks 8 years since I was diagnosed with Type 1 diabetes. I can remember it (sort of) clearly: puking, stumbling to the campus health center and writing down a list of seemingly unrelated symptoms that any first-year medical student would immediately recognize as signs of the ol’ DM. (“Wait, so you say you’re peeing all the time, losing weight despite eating large quantities of chocolate, can’t really see straight and are so thirsty you’d consider drinking out of the toilet? I think I might have an idea of what’s wrong. . . .”) A day later, I got called back to the health center. My friend Ellie held my hand as a doctor announced that my blood sugar was over 400 and that I had type 1 diabetes.
It was, to say the least, shocking. But perhaps even more shocking is the fact that since then, I’ve lived 2,920 days as a diabetic. 2,920 days of constant blood testing and insulin injections, of evaluating everything I eat by what effect I think it might have on my blood. It makes me want to post a mini-essay I wrote a while ago about what it’s like to live as a type 1. Reading it over I realized it’s a little depressing, but I also think it’s very true — and it might be a source of comfort to other people who have been living 8 years — or 15, or 50 — with this disease, managing it every day without a break, feeling your emotions fluctuate with the numbers on your glucometer. It’s my anniversary gift to you: an acknowledgment that as we live each day with diabetes, we’re not alone.
Thought for Food
When I look at food, I don’t see food. I see carbohydrates—or, rather, a vague, fuzzy picture of carbohydrates, obscured by proteins and fats and serving sizes and times of day.
I didn’t use to do this. Before February 17th, 2001, I saw food as food, and ate it as such, simply, casually, with no real thought attached. The winter of my senior year of college, after a bad cold and a painful breakup, I began eating more of it—not to cope, but to feel full, not emotionally, but physically. I was hungry, always hungry. Hungry and thirsty and tired, piling my tray in the dining hall high with massive salads, pasta, cheese, dessert, getting up in the middle of the night to slurp water from my dorm’s bathroom faucet and, when I woke, forgetting what I had done the night before. I gorged myself and yet my pants were looser, my arms thinner, my stomach flatter. Chocolate, pretzels, half loaves of bread. One afternoon I threw it all up, stumbling to my bathroom to crouch over the toilet, convinced I had food poisoning even though the vomit itself was still sweet from the cookies I had eaten that afternoon. In bed, I stared at the ceiling and waited for my nausea to pass, and yet even when my stomach had settled, my mind was cloudy. The world swirled. I couldn’t stand without stumbling. On February 17th, I entered the hospital and, since that day, food has never been the same.
To live with Type 1 diabetes means to be aware, constantly aware, that putting food into your mouth means putting sugar into your blood—your body negotiates with every bite that you ingest, disarming it, absorbing it to keep you alive and, by controlling the glucose, to which it is almost all reduced, stave off your death. There is no tissue that diabetes does not affect. Brain, eyes, toes, heart, they all have blood; everything that has blood has sugar. I could live in denial—many people do—eat what I want, take a few insulin injections, not test my blood sugar, and ride on a hyperglycemic plateau whose immediate effects would be nearly impossible to feel. But to do so would be to ignore the destruction going on inside, the glucose flooding the capillaries in my eyes, the tiny vessels in my kidneys overwhelmed by sweetness, the nerves in my feet losing their ability to feel. Instead I calculate constantly, measuring my food’s potential effect on my blood against my desire to eat it, trying to walk a Goldilocks tight rope where my sugar is not too high, but also not too low, and loathing myself when my willpower fails. Does a banana justify the effort it requires? Will that extra bite of pasta outweigh the annoyance of an injection? Is a cookie worth a spasm of self-hate?
From the outside, diabetes itself is invisible. Look closer, though, and my fingertips are calloused where I prick them, ten, twelve times daily, to test my blood sugar. A bulge in my pocket reveals my insulin pump, a machine connected to me by a tube that, in giving me insulin, keeps me alive; scars from its insertion sites pepper my hips. My pump means freedom from injections but it is a literal tether, its plastic stint in my side a constant reminder, as I sleep with it, exercise with it, and go on dates with it tucked into my bra, that I am not normal. Diabetes’ subtlety is both a blessing and a curse, saving me from stares and pity but, in remaining hidden inside, making part of me hide as well.
It has been eight years. I hate myself daily, frustrated that I do not have constant self-control, and that, even when I do, my body does not react in the way that I expect. Yogurt might be yogurt, but if I am sick, it is yogurt times 1.5, or 1.7, or 2.3. If I exercise before or after eating, it is different. If I have my period, it is different. If I am tired, or stressed, or if I eat it later in the day, it is different. Every time I prick my finger to test my blood I am judging myself; my self-image fluctuates with the numbers on my glucometer’s screen. I hate it, diabetes, wish I could take a vacation from it, eat a slice of bread without calculating carbohydrates or bite into an apple without guilt. Living with diabetes is an exercise in measurements and judgments and self-control, and somehow, in some ways—and I’m not there yet—learning to let go.
I remember sitting in the dining hall after my diagnosis watching a friend eat breakfast, his tray weighed down with bowls of cereal and pancakes smothered in syrup, two tall plastic glasses of orange juice, and I remember thinking to myself that he was not thinking, that he was just eating. Everything on my tray now required thought. Even “healthy” foods were dangerous—bran flakes a minefield, pineapple taboo, their effects nearly instantly quantifiable, my body immediately affected. I watched as he gulped a bite of pancakes, chased it with orange juice, and realized for the first time that when it came to food, I would never not think again.