The MegaBus from Washington, D.C., to New York was cold and uncomfortable, but for three hours I slept uninterrupted.
The long interstate nap that evening was a welcome coda to the nightly sleeplessness I’d endured for the previous three weeks of my sophomore year of college. Those nights, as midnight passed into early morning, I would hop out of my girlfriend’s dorm-room twin, and writhe and wince until the searing cramps in one of my feet subsided. Often, no more than a half hour later, just after settling back to sleep, I would have to dash from the room to the bathroom next door to avoid wetting the bed. Most nights I barely slept, simply dozing during miserably short intermissions.
Back in New York, on the Upper West Side, my mother greeted me at the door of our family’s apartment. “You look thin,” she said. I was. Pictures of me from that February show a gaunt, almost skeletal figure, wearing a forced smile and mismatched Old Navy blues. That winter evening I returned to New York, I stepped on the scale in my parents’ bedroom. It read 165, 25 pounds lighter than I was three weeks earlier. My mother fretted and I tried to convince her the cause was an unduly stressful second semester. But even I knew the heaviest course load couldn’t trigger such dramatic change.
“Regular” things like biking or a few drinks—which for me, taken to excess, is a direct path to a coma—offer a few dangerous moments of release. We all have our vices; mine is hypoglycemia. Those “regular” things give me a few moments of freedom.
The next morning my parents and I took a crosstown cab to the pediatric emergency room of a New York University hospital. The nurse led me to a private room, where a James Bond movie likely older than most of the ward’s patients was inexplicably playing on a TV in the corner. A few blood tests and 15 minutes later, the nurses and a doctor returned. My blood glucose level, they said, was 700 mg/dL—milligrams of glucose per deciliter of blood. Before meals, a normal, healthy measurement should have read somewhere around 100. The diagnosis: diabetic ketoacidosis; Type 1 diabetes, at its extreme.
AS A DESCRIPTIVE CATEGORY, Type 1 diabetes is a relatively new condition. The medical community did not achieve consensus around the disease’s name until the mid-1980s, after three decades of peer-reviewed debate about its origins, causes, and treatment. Before “Type 1” became widespread, researchers referred to the “insulin-deficient” category of diabetes as “juvenile,” an epithet that describes the general age of their clinical subjects. Type 2 patients, who are “insulin-insensitive”—their bodies produce insulin, but process it poorly—are mostly older than those with Type 1. Empirically, “juvenile” was a mostly accurate qualifier: without synthesized insulin, a high percentage of young people afflicted with the disease did not reach adulthood. Ketoacidosis, which releases hormones that intercept the processed sugars the body’s insulin might otherwise provide, killed those doctors’ young patients.
Diabetes is an autoimmune disease, and by some fluke of genetic design, I was born more likely to acquire the disease than the average human. My susceptibility meant that a bad infection I got that February triggered the disease’s onset. I had been prone to infections since early adolescence, when my middle-school pimples would metastasize and swell into large, unruly cysts. In the weeks that preceded my diagnosis, my body had become peppered with new cysts, larger than before, which would appear and rupture in quick succession. My knuckles grew scabbed and scaly, as if I had pummeled a leather boxing-bag with my bare hands. My mouth dried out; in class, my voice would slow to a slur before disappearing altogether. I began to experience the nightly cramps and insistent urination. My body could not absorb the foods I gave it, and so it turned to itself for meager sustenance.
After the diagnosis, I spent three days in the hospital’s intensive care unit, where I learned to live in a new, self-afflicting body. My doctors gave me technologies to manage the symptoms of the disease. A full roster of specialists introduced the practice of diabetes “maintenance,” as if my insulin-deficient body were a faulty elevator struggling to meet its inspector’s code. Theirs was a vocabulary of precision. From the educator, I received a glucose meter, to track shifting blood glucose levels. The nutritionist advised that I keep a food journal, a self-help guide that guards against gummy peach rings and Arizona iced-tea lemonade, among other occasional dietary slip-ups. The endocrinologist, my care roster’s captain, assigned me a regimented suite of insulin supplements, which together adjust my blood glucose to a normal level. And there were extras: ketone sticks, to anticipate the return of ketoacidosis, and a glucagon pen, in case my glucose levels drop too low.
This arsenal is intended to make my diabetes a disease of adulthood, even old age. Had I been diagnosed before the discovery of insulin, in the early 1920s, my doctors would have characterized my disease as a state of fragile dependence, often sustained by a diet of starvation. With the invention of synthesized insulin in 1978, the technology of diabetes medicine has become straightforward. I can track my glucose levels and moderate my insulin dose with precision, all from a small carrying case.
With my arsenal, my doctors suggest, I am prepared for all unknowns. If my glucose levels rise too high, I can correct them. If they drop, I can fix that as well. I can now be “normal,” or as normal as anyone lacking a functioning bodily organ can be. The uselessness of my pancreas is the most direct consequence of my disease, but diabetes’ constant reality is much more than a matter of malfunctioning bodily organs. My glucose meter calculates the relative damage of the disease: if it reads 103 mg/dL, I have consumed enough insulin; 236, too little; 65, too much. I’ve found that each number corresponds, roughly, to an emotion: At 103, I am calm; at 65, I stagger and stumble; at 236, my high glucose levels overwhelm my body and the simple act of standing up becomes intolerable. There are times when my disease may be more accurately described as a disorder, in the way it wreaks mental havoc.
I covet my glucose meter for more than its technical measurements. If my emotion wavers, I rush to the meter to justify my momentary dysfunction, hoping, by some weird logic, for an irregularly high result. The tip of my left ring finger, from which I compulsively draw my meter’s blood samples, bears a constellation of maroon-colored scars, many fresh. Some days, I puncture this spot 10, 15 times: before breakfast, after breakfast, after lunch, after-after lunch, after-after-after-lunch for good measure. Whatever emotional relief my meter brings is always short-lived. But I return to the meter hourly, half-hourly, to confirm that my glucose levels are where they should be, and that my emotions make sense. My disease is physically taxing and its maintenance exhausting.
My compulsive maintenance keeps most of the disease’s worst afflictions in check. But the difference between “normal” and “dangerously sick” can be a small mistake. One week during my senior year of college, my endocrinologist accidentally bungled an insulin prescription submitted to the local pharmacy. The pharmacist filled the original prescription on a Friday; the endocrinologist would not be able to correct her mistake until Monday. The intervening weekend was a mess of anxiety, as my glucose levels crept higher with every meal. Fortunately, I retrieved my insulin before ketoacidosis returned. But the trademarks of gradual depletion returned—exhaustion and a heavy, cluttered mind, along with the fear that my glucose levels would continue to climb unabated.
The technology of diabetes maintenance reiterates the vulnerability of my diabetic body, and the ways in which I am not always my own best keeper. My most frequent mishaps are minor human errors: a lost insulin pen or a dwindling supply of glucose meter test strips. My collection of life-saving medicine is now distributed between several backpacks and a portable case, multiple cities, and the turned-out pockets of my recently washed jeans. Once I discovered a half-used insulin pen in the pocket of an old winter coat. But these human errors are not surprising or uncommon: Type 1 is a human disease.
I covet my glucose meter for more than its technical measurements. If my emotion wavers, I rush to the meter to justify my momentary dysfunction, hoping, by some weird logic, for an irregularly high result.
Of all my potential human errors, low glucose levels are the most dangerous. Ketoacidosis kills slowly, but the damage of hypoglycemia is immediate. Below 70 dg/mL, my body is running on fumes; life becomes a gathering collection of near-death experiences. But while high blood glucose dulls my thoughts, hypoglycemia is a sensory spectacle; the dimmest light glimmers in Technicolor, like a distant horizon in Oz. These bouts of low blood glucose are also the closest imitation of the “normal” life my doctors promise. My dietary constraints briefly disappear, and the burden of maintenance gives way to a playful euphoria. These moments can be as spectacular as they can be lethal.
Given the gravity of hypoglycemia, it is logical to think that I would meticulously monitor my glucose levels during a long bike ride, or lock up my booze. Instead, I find myself sneaking an extra unit of insulin before dinner, to prompt that quick high two hours later. “Regular” things like biking or a few drinks—which for me, taken to excess, is a direct path to a coma—offer a few dangerous moments of release. We all have our vices; mine is hypoglycemia. Those “regular” things give me a few moments of freedom.
There are other technological advances that are meant to lessen my mental burden of maintenance and to make “normal” a more constant feature of my diabetic life. When I was diagnosed, my doctors offered me “the pump,” the next technological stage of diabetes treatment. Part electronic monitor, part portable insulin catheter, the pump allows its wearer independence from the ritual of manual injections. The pump would mimic but not replicate my negligent pancreas, injecting a finite and continuous supply of insulin into my bloodstream. But three years in, my endocrinologist no longer raises the topic. My glucose checks and insulin shots are chaotic and unreliable, but they have become routine. Even if the solace of my routine is imagined, the rush to my blood glucose meter is a distraction from the physical dysfunctions caused by my pancreas. The pump is healthier, my doctors insist, the regular insulin injections better mimic the functions of a normal, non-diabetic body. But I fear the new routine of an unfamiliar technology, the abandonment of my imprecise, imperfect maintenance of my disease. There is comfort in habit and ritual, and in the human connection, no matter their faults.
The Weekend Essay is a Saturday series edited by Leah Reich.
