I’m alone one night watching Field of Dreams on TV. As my blood sugar drifts down, the movie becomes more and more profound. Death isn’t the end! We’re too bounded by reason to catch the shafts of light all around us! I look up from the screen at the living room. The bookcase is swaying, the arm chair mumbling quietly to itself. My hands are attached to long, rubbery strips, and the hairs on my arms, light brown and silky, are beautiful and mysteriously meaningful. A drop of sweat runs down my forehead, splashes onto my thigh, and ripples out on the surface of a pool. And I think—slowly and with a dangerous smile—I’m having a really low blood sugar.
I’m in front of the refrigerator with the door open. Cold air moves across my skin. I’m slick with sweat and I can’t remember what I’m supposed to eat. I bite off some cheese (bad idea, no effect on blood sugar). I grab a container of orange juice and gulp (good idea, sugar galore). Ten minutes later I feel normal and watch Kevin Costner meet his dead father in a cornfield. His acting is stiff, and James Earl Jones looks foolish greeting dead baseball players. I miss my field of dreams.
In one precariously low sugar, I was convinced time was running backwards. My wife at the time was handing me a glass of orange juice and waiting for my jumbled speech to mean something. I could swear everything happening had already taken place. I said, “I’ve just had the orange juice.” In the film Memento the main character goes around without any operating memory and has to piece together what’s happened from notes he finds tattooed on his body. As he constructs and reconstructs this knowledge, the story is revealed in the reverse order in which it happened. That’s what my experience felt like, and the odd sense it aroused—of feeling ahead of the game while everyone else is behind—stayed with me for days.
I understand these moments are tricks of low blood sugars, but I see them, nonetheless, as special mental abilities. I’m not suggesting time was running backwards, rather I enjoyed the sights and sounds as you might enjoy a journey to the Arctic or the Amazon, even though you wouldn’t want to live in these extremes for long. How many Richards are there? In the rhythm of sudden sickness and rapid recovery, I experience little deaths and rebirths many times. The return to a sense of self not shaken in the fist of an extreme sugar is sweet in the same way altered states are illuminating. I feel hopeful as I reassemble my fractured parts, languid on a couch, the littlest hairs on my body, now dried of sweat, feeling air moving across them. I am small and excited.
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 genetics and lifestyle. Type-1 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 slip into a coma. High and low sugars left untreated for too long result is coma and death.
I became diabetic at twenty-three, which means I’ve had it for forty-three years. I’ll die with the disease but perhaps not of it.
After my diagnosis, a hope swam in me that I could bring my sugars under control, step out of the mental fogs they ushered, and save myself from blindness and missing limbs. The wish went unanswered until, in 1984, I read in a magazine about a study recruiting type 1 diabetics. 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. Am I fit enough for the study? I am. A few weeks later, on a cold November day, the local coordinator of the study hands me a phone. A voice on the other end says, “Wait.” Someone in Washington DC is looking at a random number table, or checking me off a list, or tossing 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 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 join over 1,400 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 in the experimental group—where we test our blood glucose many times a day, take 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 people in the standard-care group are offered the experimental regime.
I’m assigned a psychologist, and I once ask her whether there is a diabetic personality. She says, “Oh yes,” 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.” I could see her point, and I was pleased to be seen not as a Cartesian, with a separate sense of body and mind, but rather as an Aristotelian monist: a person who, in choosing to be his disease instead of trying to beat it, is free to complain all he wants of its requirements.
While shaving one day I cut myself below my bottom lip, and it turns into an ugly bump that bleeds on and off for a week. It’s 1973, and I’m in the waiting room of the student health care center of Leeds University, in the north of England. Around me are women in their late teens and early twenties. We fidget before our names are called, seated on steel chairs that make a horrible scraping sound on the linoleum. It’s the first week of the autumn term, and most of the people here are signing up for the Pill. The center is the place for free birth control.
My then girlfriend has urged me to get the cut checked. I’m reluctant and self-conscious. The center is located in a row of imposing Victorian houses. This one, staid-looking from the outside, is a maze of jutting staircases and corridors, and although the walls are painted a clinical cream color, the environment still shouts upper-middle class home. I’m jittery in this typically English palimpsest of old breaking through new—where the values of sexual liberation and expanded opportunities for children of the lower classes, like me, are serviced in signifiers of establishment wealth and power. The mixture confines as it liberates, and no sooner do I enter a place like this than the issue of compliance rears up in me like a sleeping snake made irritable, even as it remains curled in its basket.
The English class system, like bacteria and fear of death, is amorphous and everywhere. Education is the only way through it—or the door out of it—for kids like me and my girlfriend. We are part of the Labour Party’s postwar leap of change, whereby offspring from every class can go to university free. The government pays our expenses, so we can study without having to work. But my place in the class system is slippery. My father is a tailor—a bespoke tailor—and his shop is in our house, but our house has a back garden, and all these factors weigh into your assignment in the pecking order. Depending on where you are from, as well as your accent and skin color, you navigate the class system the way Alice does Wonderland, in one context taking up all the space in a room, in another becoming the ball in a croquet match. Alice in Wonderland is a brilliant meditation on the ways we feel small or large, depending on the context. It’s a parable about how children experience their place among adults. It also describes the feelings of people in a class-bound culture and of those diagnosed with an illness who live amid the well. Class, education, and diabetes swirl inside me, one aspect of my condition moving me up in rank, another threatening my stability.
At the center, I’m called in to see Dr. Cameron—big and beefy and with a ruddy complexion—who speaks in a broad Scottish accent and wears a tweed jacket with leather patches on the elbows. He waves me to sit down, and it feels condescending. With a firm hand-shake—perhaps in the manner of the doctor who might once have practiced here with his family and servants bustling about—he asks what I’m studying. “Philosophy,” I say, and there is no reply. In the past few months, he’s probably asked a thousand students the same perfunctory question, and many, like me, have come trailing cultural aspirations he’s unable to address—perhaps even notice. He gets down to examining my cut and asks about my general health. He directs me to step behind a curtain and pee into a cup. I don’t ask why. A doctor directs you, and you comply. Afterward, he tells me to return to the waiting room where I sit long enough for a whole new crop of students to enter and leave. My lip throbs.
Eventually, a nurse calls me to the counter. She’s wearing a bright pink jumper like ones my grandmother knits for herself, and I’m disposed to trust her. She says I must taxi immediately to St. James Hospital on the other side of the city. The center will pay the fare.
“Why the rush?”
“They’ll explain when you get there, dear, but your urine contains high amounts of sugar.“
Nothing registers, although the signs of diabetes are glaring.
“Can someone bring you pajamas and a toothbrush? It’s a Friday and you’ll probably have to stay a few days.”
On the ride across town, I’m thinking about class, not illness. Leeds, despite housing the country’s largest urban university, is grim. We speed through labyrinthine streets of back-to-back terraced housing. Washing flaps on lines strung across side streets. Neighbors chat to each other from door steps. Pubs are the main life of the community, and there is one on every other street, interspersed by fish-and-chips shops and corner stores. Here and there soot-blackened churches are becoming Sikh temples and Muslim mosques.
I’m installed on a ward with five other men. One is hemophiliac, about my age and from a village like the one where I grew up. He paces the corridors until he’s informed he needs an operation. He’s told his chances of surviving are fifty-fifty. Everyone can hear, and I’m stunned by his reaction, which is no reaction. He says okay, his eyes cast down, his chest curving inward. I want to say: “Speak up for yourself. Ask questions. Are there other hospitals that specialize in my condition? Do I need a second opinion? What is the track record of the surgeons on my case?” I say nothing. What would I do in his place? Am I in his place?
I remain in the dark until Saturday night when an orderly asks me to pee into a bed pan. Under his scrutiny, I manage a trickle. I am handing over the pee when I see, written along the side of the container: “Richard Toon—diabetic.”
“Does this mean I’m diabetic?”
“Yes,” he says, striding away with my pee.
On Sunday, a nurse wearing a blue uniform briskly demonstrates how to inject insulin into an orange and then into my upper arm. It’s simple to impale the orange but something else when I’m expected to plunge a needle into my flesh. “Go on,” she urges. And after taking a moment to notice light glinting off the steel spike, I slip it into the fat layer above my right biceps. There’s a dull ache. I repeat the procedure in the other arm with the same hesitation and pain. I don’t complain. I want her to praise me for getting on with the job.
Over the years I’ve completed scores of surveys about diabetes. How many pats of butter do I spread on bread? Do I hear voices? Can I feel my toes? I’m in San Diego for my annual checkup as part of the epidemiological study that’s now reached its 25th year. I’m in the white examining room at a small table, pen in hand, filling out forms between medical tests, when I come to a survey about peeing. Long-term diabetes can damage the nerves that control urination.
How often do I pee? How long does it usually take? Is my flow strong? Am I able to stop it when I want to? I’m not sure. What’s a normal flow? How do you know how good you are at stopping? Do I dribble? Do I stop and start again? Do I really know when I’m finished?
I have lots of opportunity to ponder the questions, as I’m in the middle of a renal test which requires I drink a quart of water every half hour, pee into a cup, and pour the contents into a big plastic jug. The container, embedded in ice, has my name on it and looks like it’s filling with chardonnay.
If I can’t tell I have a problem, I figure I probably don’t have one, so I check no to all peeing issues. During stints at the urinal, though, it crosses my mind maybe I do have issues. Do I empty my bladder in the preferred-but-curiously-unstated way the survey hints at? Does my pee gush in a mighty torrent, but one that can be halted sharply in mid-stream—and without residue? Oh my god, there is a bit of residue, I discover, when, toward the end of my visit, the clinical supervisor asks me to lower my trousers so she can measure my abdomen and compare this year’s numbers to last.
I undo my belt, unzip my fly, and let my trousers bag around my knees. I am holding my shirt up, so she can get the tape measure around, and I am looking down at her head, which is exactly at crotch level, when I notice a dark patch on my light blue knickers. The stain is about the size of a quarter and seems to be expanding. She is right there with it but doesn’t let on. I mean, what can she say? I keep silent, but I am aware now there is empirical evidence that I have a peeing issue, no matter what I’ve claimed on the form. Surely, she’ll be cross checking my answers when I’ve left.
Weeks later Laurie finds a particularly fine pair of pants on sale at Macy’s. They are Alfani’s: 31 inch waist and 30 inch in-seam. They fit tight and look good, and we buy them, a light fawn color. I’m at work, unzipping myself in front of the urinal, when I discover that the zip is short, by which I mean I have to bring my penis up over the bottom of it to point my member, as they say, at the porcelain. It’s a bit of an effort to get a smooth flow, and as I push my dick back into my trousers and zip up, I suddenly feel a spurt of warm liquid around my middle. I look down to see a large, dark shape forming on the front of my pants, announcing to everyone who enters: This man has peed himself. Fortunately, no one comes in. I splash water on the stain and duck into a stall to wait. Next time I fill out a form and come to the question: How long does it take your urine soaked trousers to dry? I will be able to answer: 20 minutes