Sudden reversal

Richard
Sudden reversal
Starbucks, June 15, 2007

I set about using the prompts to explore my life as a diabetic. I brainstormed with Laurie. “Needles,” “diagnosis,” and “altered states” were some of the topics that came up, and one by one I ticked them off. After I’d generated material, we began to shape it into a text called Sugartime for a performance piece, a la Spalding Gray’s monologues. In the prompt practice, ideas and memories flow, although if I’d tried to carve a narrative from whole cloth, I would not have known where to begin and I suspect I would have grown discouraged.

The Egyptians first recognized diabetes around 3,000 years ago, although the hormone insulin wasn’t identified until 1921. Ninety percent of diabetics (roughly three million in the US) have type 2, caused by overweight, sugary diets, and genes. Type 1, also known as juvenile diabetes or insulin-dependent diabetes, affects only 10% of people with the condition. I am one of those.

With type 1 diabetes, the immune system destroys the insulin-producing beta cells of the pancreas. Current theory suggests both genetic and environmental triggers, although the reasons remain unclear. Without insulin the body can’t transfer the sugar in blood to cells where it’s used for fuel. Blood sugars too high for too long, and you wind up with kidney failure, blindness, nerve damage, amputations, heart attacks, and strokes. Blood sugar too low, and you can’t think straight, although the altered brain states low sugars produce are temporary and cause no brain damage. Unless you go into coma. High or low sugars left untreated too long and the result is coma and death.

I became diabetic at twenty-three, which means I’ve had it for thirty-six years. I’ll die with the disease but perhaps not of it.

After the diagnosis, a nameless hope swam inside me that I could bring my sugars under control, step out of the mental fogs they usher in, and save myself from a future of blindness and missing limbs. The wish went unanswered until, in 1984, I read in a magazine about a diabetes study recruiting patients and I volunteered.

In a small annex of New York Hospital, a nurse interviews me about my health history, what I eat, how I sleep, and whether I think I’m a robot. A few weeks later, on a cold November day, the coordinator of the study hands me a phone. A voice on the other end says, “Wait,” while someone in Washington DC looks at a random number table, or checks me off a list, or tosses a coin to determine my assignment either to standard care, which will change nothing, or the experimental group, which can point me to a future. I never learn how the decision is made, but after moments during which I feel myself dancing lightly over a plank bridge that at any moment can plunge me into a cold, rocky stream or deliver me unharmed to the other side, the voice says, "You’re in the experimental group." And that is how I become a patient in what will turn out to be the world's most comprehensive study of diabetes, the DCCT or, to give it its full title, the "Diabetes Control and Complications Trial.” I feel chosen, you could even say liberated, as I will many times in America, where my English accent—a salad toss of nonOxbridge vowels—sounds Beatles sexy and urbane, as opposed to, in England, a set of notes that can shut doors.

I join with over 1,400 other volunteers in a nine-year international experiment to see what happens when diabetics, balancing food and insulin, try to maintain blood glucose levels as close to normal as possible—not less than 70 milliliters of glucose per deciliter of blood and not more than 120. When the results are announced in 1993, they are hailed as the most important finding in diabetic care since the discovery of insulin. They show that good blood glucose control (in the target range as often as possible) slows the onset and progression of the major debilitating complications. Indeed, the study reveals that any sustained decrease of blood sugar helps ward off illnesses even in people with poor control.

For those of us fortunate enough to be in the experimental group—where we test our blood glucose four or more times a day, give ourselves multiple daily insulin injections, stick to a diet and exercise plan, and visit the study’s health care team for monthly monitoring and testing—the risk of eye disease is reduced 76%, nerve disease 60%, and kidney disease 50%. The results are so dramatic that the comparison study is suspended a year early and all those in the standard-care group are offered to move to the experimental regime.

As part of the study, I’m assigned a diabetes educator named Clair, whom I see every month for many years and who says at our first meeting, her mouth swerving to the side, "It's easy to follow the protocol, you just have to think about diabetes every twenty minutes for the rest of the study." She might as well have added, “And for the rest of your life.” And that's what I do, me who disdains all routines. It’s interesting the shape you can assume with a gun to your head.

I once ask Mary, the psychologist I visit during the first few years, whether there is a diabetic personality. “Oh yes,” she replies, smiling, "there are those who are at war with the condition in themselves—and they develop the complications first—and there are those who find an identity in the disease and it helps if, like you, they’re neurotic compulsives." Well, yes, that’s true but never mind. I’m less interested in the Freudian profile she draws than in the philosophical one—pleased to be seen not as a Cartesean with a separate sense of body and mind but as the decidedly Aristotelian monist I consider myself to be: a person who, in choosing to be his disease instead of heroically trying to beat it, is free to complain all he wants of its irksome requirements.

During an examination, a doctor in the DCCT study tells me I should try harder to maintain tight control because I’m a representative for the thousands of diabetics who aren’t in the study. Like I am suddenly responsible for all those other poor diabetic slobs! I say, “I may be representative of a thousand diabetics, but I’m certainly not a representative for them. There was no election, and if there were one, I wouldn’t run. And if I ran, I wouldn’t be elected. And if I was elected, I would oppose the notion that volunteer patients should be fed this crap.” It’s the first time I realize that because a person is a doctor wearing a white coat with a tongue depressor in the pocket she’s not necessarily right. I want to slam out of her office, but I’m wearing one of those gowns where your ass sticks out the back.