My Very Human Errors With My Very Human Disease - Pacific Standard

My Very Human Errors With My Very Human Disease

The reality of a life with diabetes is much more than a matter of malfunctioning bodily organs.
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(Photo: Shutterstock)

(Photo: Shutterstock)

Editor's Note: A version of this story first appeared on PSmag.com on December 6, 2014, with the headline "My Vice Is Hypoglycemia." This edited version was published in our January/February 2016 print issue.

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My mother greeted me at the door of our apartment on the Upper West Side. “You look thin,” she said. I was. Pictures of me from that time show a gaunt, almost skeletal figure. On that winter evening when I returned to New York from college, I stepped on the scale in my parents’ bedroom. It read 165, 25 pounds lighter than I had been three weeks earlier. I tried to convince my mother the cause was an unduly stressful second semester. But even I knew the heaviest course load couldn’t trigger such dramatic change.

The next morning my parents and I took a crosstown cab to the emergency room. A few blood tests later, a doctor returned. My blood glucose level, he 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, or Type 1 diabetes, at its extreme.

The discovery of Type 1 diabetes is a relatively recent event. The medical community didn’t achieve consensus on the disease’s origins until the mid-1980s. Before “Type 1” became the accepted term, 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 resistant”—their bodies produce insulin, but process it poorly—are mostly older than those with Type 1. “Juvenile” was a fairly accurate qualifier: Without synthesized insulin, a high percentage of young people afflicted with the disease didn’t reach adulthood. Ketoacidosis, characterized by the release of hormones that counter the effects of insulin, generally killed young patients.

After my 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. 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. From my educator, I received a glucose meter, to track shifting blood glucose levels. My nutritionist advised that I keep a food journal, a self-help guide that would guard against peach-flavored gummy rings and Arizona Iced Tea lemonade.

My endocrinologist—captain of my care team—assigned me a regimented suite of insulin supplements, which together adjust my blood glucose to a normal level. And there were emergency tools: ketone sticks, to anticipate the return of ketoacidosis, and a glucagon pen, in case my levels dropped too low.

This arsenal is intended to make my diabetes a disease of adulthood, even old age. With my resources, my doctors suggest, I am prepared for all unknowns. If my glucose levels rise, I can correct them. If they drop, I can fix that too. I am now “normal,” or as normal as anyone lacking a functioning organ can be.

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, anxiety makes even standing up intolerable.

The tip of my left ring finger, from which I compulsively draw blood samples, bears a constellation of maroon-colored scars, many fresh. Some days, I puncture this spot 10, even 15, times. I return to the meter hourly, to confirm that my glucose levels are where they should be—that my emotions make sense.

The technology of diabetes maintenance emphasizes 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. So I’ve learned to build in automatic safeguards. My collection of life-saving medicine is now distributed between several backpacks, multiple cities, and familiar pants pockets. Once I discovered a half-used insulin pen tucked away in an old winter coat. These human errors are not surprising or uncommon: after all, Type 1 is a human disease.

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