The not-so-sweet life

A diabetic restaurant critic reflects on the disease that taught him how a body can die.

Published August 24, 1999 4:00PM (EDT)

No matter what the evidence otherwise, something skeletal and stubborn in Western culture leads us to believe that whatever we experience, we experience alone. Anomie, lust, mean-spiritedness: It makes no difference -- for each of us, for some part of our lives, even these universals seem borne and suffered only by ourselves.

So it is even more isolating than usual to be singled out by gene or circumstance as special: The hermetic effect on your already-solitary life is fearsome. But if you are lucky enough to discover that this "special you" has special company, relief may be profound. Almost every gay man in my almost-Stonewall generation can recall the moment of thrilling surprise when he learned there was at least one other fellow whose compass needle pointed south. And it was nearly as world-changing when I met, more than 20 years ago, my first fellow diabetic.

It's amazing to me now that it took so long. I was practically 30, an insulin-dependent diabetic since age 8. "Janey" and I worked at a small but nervy weekly newspaper; I was an editor and restaurant reviewer, she was a critic of contemporary dance. I don't recall the mechanism of disclosure, the way we each came out of our diabetic closets. Had I asked her to join me in a review meal (I ate out almost every night) that she perceived as threatening to her diet? Did she invite me to join her at a performance that would require a supper that, too early or too late, would upset the delicate balance of meals and insulin dosage that enabled me to eat any type of food that could be eaten, sculpting my limitation into my life's work? (Diabetic readers will understand that we met before the invention of the portable blood-glucose monitor, back when we had to be guesswork magicians and annoyingly self-aware to figure out our diets and our timing.)

Balance, I have learned from more than four decades of hands-on experience, is the secret word in the mouth of that diabetic duck -- a word that, in a clinical context, I have never heard a single physician say.

A week or so after Janey and I compared our diabetic stories, furies and fears, our colleague "Laura" the photographer said "Me, too" and hiked up her already-short skirt to show us the bruises on her thighs -- proud blue badges of daily insulin injections. Three of us! And Laura had a daughter, something Janey found heartening, because she was at the age to think along those lines.

At that time, I thought I already knew everything there was to know about diabetes. The name actually applies to two different conditions: the severe type we three had, which occurs when the body produces little or no insulin, and the more common "adult onset" kind, which can often be controlled without insulin. For years I had studied my type on the sly; my need to protect myself from the casual authority of random doctors probably had something to do with my first -- aborted -- career as a science whiz. Yet I hadn't realized that bearing a child could give the mother a type of temporary diabetes, or that being diabetic made childbearing itself both difficult and risky. (It is wonderful to know that diabetic pregnancy, though still a demanding course, is much more manageable now.)

And I just remembered something else about Janey: She had once been a restaurant critic, too. We agreed that something in our life-or-death focus on food had led us to fasten on the compensatory (and thus heightened) pleasure of eating and transform it -- to the manipulated pleasure of language, of opinion, of something we could almost completely control. We were savvy enough to say that being diabetic didn't determine our careers, but the condition seemed to sensitize and poise us in remarkably similar ways. Or so we thought, in that first spurt of shared coincidence.

Go to the sexuality/gender section of a real or virtual bookstore and you'll find more first-person accounts of coming out as gay or lesbian than you can shake a rainbow at. It makes sense that gay writing should embrace autobiography; when I was trying to come out, so many eons ago, there was almost nothing to use as a mirror, to compare myself to or to model myself on.

For a diabetic child, things were just the same. When sullen, curious little Jeff looked for something in the library that would verify or even partially normalize him to himself, he found nothing but scolding texts about the punitive exchange diet, which reduces all foods to bland interchangeable units, or cheerful but hortatory profiles of a few "successful" diabetics such as tennis champ William Talbot. (Only later did I discover that artist Charles Demuth was not only gay and diabetic but also one of the first users of insulin.) Could I play tennis like Talbot? More likely, it turned out, I could toss my tam in the air and cock my head like that later exemplary diabetic, Mary Tyler Moore.

And so naturally I am pleased that the book market, still happy to embrace the triple crown of memoir, illness and food, has seen the publication of "Sweet Invisible Body: Reflections on a Life With Diabetes" by Lisa Roney. It's the first book I have read by another diabetic that's not a how-to manual and that mirrors my experience as a person who takes a body- and mild-altering substance, insulin, two to four times a day. It's the story of another diabetic who finds that words offer some control over the frightening swings of body and mind we are stuck with.

A teacher of writing now in her late 30s, Roney looks back to childhood -- she was diagnosed at age 12 -- in order to answer a question that certainly seems answerable: How does having diabetes, "being diabetic," affect one's life? But lives, though they unfold and give up secrets under many kinds of artful scrutiny, resist cause-and-effect analysis at every turn.

I'm afraid that a simple exercise may show how Roney's discursive and sincere attempt to account for herself via diabetes is doomed, at least on an empirical level. Could she or I (or anyone) predict how our lives would have gone had we never become diabetic? No, of course not. There is no undiabetic duplicate, no control population, in the personal diabetic experiment. Too many springs feed behavior, character and career to allow for a "being diabetic made me this way" life story, no matter how tempting it is to view one's life in those terms.

"Sweet Invisible Body" contains 10 story-of-my-life chapters, mostly chronological but organized more around the growth of self-awareness. Aside from the brave futility of its program, the account has two major flaws. The first is the quality of writing. Throughout, Roney is searching for a then/now voice that will communicate her constant disappointment in physicians, lovers and most friends; her understandable ambivalence about accepting the seriousness of her disease when all that the world sees is an attractive woman who "shouldn't eat sugar"; her Damoclean pleasure in sexuality and flavor; and her real fears: of infection, of neuropathy (the progressive disintegration of nerves, especially in the retinas, hands and feet), of kidney failure, of a life diminished and then cut short.

Her prose, however, is burdened with awkwardness and clichi. One chapter, about Roney the college student's job in a small-town Minnesota cafe, reads as though a writing-class short story sneaked its way in and no editor complained. Metaphors are mixed to a mush or, as in this breathtaking passage (just a portion, too) about a lover of Roney's, followed to the point of no return:

Panos had a gaze like a magnifying glass -- when he turned it on you, you knew you were observed, and your internal organs began first to melt, then to burn. All I wanted, once his eyes had focused on me, was to be grilled to perfection, to be bitten by those white, white teeth, to have those molars release my warm juices into his mouth, and to slide down his throat into the caverns of his body. At the time I never gave a thought to how I would come out on the other end ...

The other obstacle is unavoidable, and much more interesting. The author, at least as she presents herself, is not likable. She whines, she bitterly despises the men she has dated (though with some reason, if even half of what she says is true) and she is annoyed and puzzled by her present solitude. Her uningratiating self-presentation results in some powerful passages; her sideways portrayal of provincial graduate-student life is chilling. (What injections could sweeten the sourness of academia?) Yet though the author's response to diabetes is the topic of the book, a strong whiff of "Why me?" pervades even her reflections on the dangers of diabetic martyrdom.

Early on she lets us know where she stands: that her diabetes is "a condition with you forever that will almost certainly limit your life and eventually kill you, but which, if you accept some lifestyle adjustment, allows the appearance of good health and normalcy." It seems as if diabetes has gotten the best of the writer. Few of those who live with diabetes and struggle against the limitations of a solely diabetic identity will like witnessing that.

So why is "Sweet Invisible Body" a significant book? It does a beautiful job of counting off diabetic milestones: learning to fill a syringe and puncture your own sweet self; negotiating the hypoglycemic dangers of travel; handling those who think you got this way from eating too many Oreos; figuring out, finally, that most doctors rarely tell you anything a lab report couldn't. Roney's pleasure in food is obvious and complicated -- although the simplistic "Oh, for the red, ripe tomatoes of the farmer's market" tone of her delight is sometimes grating.

But the book moves beyond the anecdotal when it highlights the link between the body and the mind that injected insulin makes visible. Insulin, the hormone that enables bodies to metabolize food and that Roney and I lack, is a powerful agent of consciousness. When not matched by a precise amount of blood glucose (because of late or paltry meals, exercise, stress -- all the unavoidables of life), it creates a hunger that at its most raging and dangerous mimics the throes of starvation. It can transport diabetics to a full-fledged psychedelic, seat-of-the-soul place where you see all too clearly how the body tethers and regulates the mind. In insulin shock you understand how a body can die. Roney gets that shock down immediately in her prologue, the best chapter of the book:

The first thing I remember from one day this past summer is standing at my dresser, where I keep my glucose meter, and seeing Leslee nearby, peering tentatively through the door. I knew that her presence embarrassed me, but I could not figure out what Leslee was doing there. In fact, it surprised me to be standing, as the last thing in my mind was curling under the covers of my bed, and the sensation of awakening in this vertical position rendered me dizzy, unsettled. As in a dream, I wondered if I might be naked and looked down on my silly pink pajamas with relief. Then I glanced at the jumble of items on my dresser, but they, too, made no sense to me ...

When blood sugar drops, one may seem drunk, pick fights, take absurd risks, sit in a chair and watch the second hand of a wristwatch move from 11 to 12 and back again, over and over, into infinity. It's a comfort to know, though, that you may already have programmed yourself to survive, waking up, as I have, with a remedial can of Coke in my hands, not knowing how it got there.

Insulin shock, which is the risk inherent in the careful or "tight" control often recommended as a way to lengthen the diabetic life, deals out small and early intimations of death. Granted, Roney acknowledges this peculiar circumstance numerous times.

But I wonder if she's aware how profoundly the experience has turned her life into the one religious medievals accepted as a given: a convalescent memento mori, a period of waiting, in this hospital of a world, for the inevitable last supper.

By Jeff Weinstein

Jeff Weinstein is the fine arts editor of the Philadelphia Inquirer, for which he writes the Eating Around column. He has written about food and the arts for the Village Voice, the New Yorker and many other publications and is the author of "Learning to Eat" (Sun & Moon).

MORE FROM Jeff Weinstein

Related Topics ------------------------------------------