I wasn’t hungry, and the pie, although delicious, didn’t satisfy a particular craving I was having at that late hour. Nor was I savoring the experience of eating it. I didn’t warm a slice in the microwave, garnish it with a bit of whipped cream, and sit at the table to let the flavors of the flaky crust and the tart apples wash over my tongue. Nope, I deliberately stood, half-bent over the ice box, as if a tsunami might come and wash it away, and scooped pie with my fingers. I half-listened for Jay to come down the stairs and see me in the bluish glow of the appliance’s single light bulb with handfuls of forbidden food. See, I’ve been diagnosed with diabetes, and apple pie is not exactly on the Top Ten List of diabetes-approved foods.
The picture I am painting is not a pretty one. I’d rather my readers — both those I know in person and those who have come to know me only in cyberspace — not see this ugly side of myself. But whether or not the image of a fat woman uncontrollably wolfing down pie is pleasant or cheerful, it is true and it is real, and not enough people talk about what is true and real in chronic town. Also, I know I am not the only person who engages in rampantly self-destructive behaviors—even though at three o’clock in the morning, with a handful of pie, I sure felt lonely.
I am an overweight — no, to be fully honest, a fat — diabetic on enormous doses of steroids. I am nearly eighty pounds heavier than I was before I was diagnosed with sarcoidosis four years ago and started steroids. My body valiantly tolerated fluctuating doses of prednisone for those years without becoming insulin-resistant, but a recent boost to 80 milligrams of prednisone (necessitated by a sarcoidosis flare-up in my cranial nerves and bones) has apparently pushed my endocrine system over the edge. I, like millions of others, am now a diabetic. My physician told me to check my blood sugar six times a day, record and count my carbohydrates, and inject myself with rapid-acting insulin before every meal. The doctor sent me to a perky diabetes educator at the hospital who determined my carbohydrate range for each day. She encouraged me to keep a food log and measure and define the amount of every morsel I put between my teeth.
I’ve been having an extremely hard time with this new food regimen. Eighty milligrams of prednisone makes a body plenty hungry, but still, I tell myself, I should be able to manage. I’ve done more difficult things than eschew pasta and chocolate chip cookies in the name of fighting this disease. I took methotrexate and wanted to barf for days on end. I injected myself with Enbrel and watched the needle marks well into six-inch painful “injection-site reactions.” I’ve put off trying to conceive or adopt a much-wanted second child. I’ve undergone almost every kind of cardiac testing known to the field, including two heart catheterizations, and even geared myself up to have a defibrillator implanted in my chest, until the doctors blessedly decided that this could be postponed. I’ve strolled through hospital halls from Montana to Mount Sinai in New York with my ever-enlarging ass hanging out the back of insubstantial gowns to have my lungs, liver, heart, brain, and nerves, biopsied or evaluated. I snort saline solution thrice daily to ward off sinus infections. For six months I breathed into the rubberized mask of BIPAP, a sleep apnea machine, when my cardiologist thought that my right-heart enlargementmightbe aggravated by possible sleep apnea. It wasn’t. You get the idea. I’m not opposed to the idea of compromise or personal inconvenience in the name of getting well. Except, apparently, when it involves carbohydrates.
It baffles me because I’ve always been such agoodpatient.Why then, do I chafe at my carbohydrate restrictions? Why do I take my doctor’s orders as a personal affront—or, rather, almost like a challenge? Compared to the lovely day when I had a dual endoscopy/colonoscopy, a few less pieces of bread should be a piece of cake — or maybe pie.Yet I want to — almost need to — break as many carbohydrate rules as possible, to wallow in the glory of pasta, bread, and dessert. I stave off the desire most of the time. But I break down too often. I’ll eat seven cookies in quick succession, or half a pie in the middle of the night. I’ll loathe myself for being such a bad patient. I vow, never again will I do this. Until the next apple pie or batch of cookies arrives.
I’m not so clueless as to think my problems are about an unfulfilled sweet tooth and a hearty appetite. My sugary binges are all about control—or the total lack of it. Oddly enough, I once witnessed this scenario of a diabetic disobeying doctors and damaging herself from the other side. I was on the outside, living obliviously in the the land of the healthy. Although I didn’t fully understand the situation then, revisiting it now helps me make sense of my own erratic behavior.
A few years ago, Jay and I took spinning classes at the local gym. The instructor was a bike racer—and a good one at that. But chatting after class one day, as we wiped the sweat off our stationary bikes, he mentioned that he hadn’t always been the thin, muscular, motivational guy who spent his lunch breaks leading group stationary cycling and his Saturdays slogging out hundred mile rides on Montana highways. He had been overweight, listless, a smoker.
I ended up hiring him as a personal trainer to put together a strengthening program for my own bike racing season. We never became friends, exactly, but as I gasped beneath heavy squat racks and lunged forward with a bar on my shoulder, we’d swap a few personal details. He liked to hear stories about my glory days as a cyclist, back when I trained with the big wigs at the Olympic Training Center in Colorado and met (and raced against) some folks who went on to become pretty famous in cycling circles. I wanted stories from his day job as a drug and alcohol counselor. Truthfully, though, besides a passion for going fast on two wheels and for hearing tales about people skating (and crashing) close to the edge of their choice, we didn’t have much in common. That’s why I was surprised when one day, as I was in the midst of some torturous exercise, he turned to personal matters and said that his marriage was falling apart. His wife, he said, hadn’t made the transition from plump smoker to lean, mean, cycling machine as he had. She was a diabetic, but she took very bad care of herself, he said. It had become too painful for him to watch her health deteriorate while his soared. He was moving on. They divorced a few months later.
His pain was real, and my sympathy for him was genuine. As to her, though, I was a simpleton in the realm of compassion. “Why doesn’t she just lose weight and take her diabetes medications and go on bike rides with him?” I wondered, with the befuddled earnestness the healthy sometimes carry with them onto twisted streets of chronic town. How could she sit back and eat sweets while her husband packed his bags and the diabetes destroyed her nerves? Didn’t she have any self-control?
Back then I didn’t understand how chronic illness can turn everything on its head and warp the meanings of our intentions and actions. Trying to understand why you do something — or what something means — is a lot like excavating an ancient city—thepolisof the self. But instead of chipping away through rocks, pottery shards, and the detritus of daily life that remains, you have to get beneath the mood-altering medications, chronic pain, endless medical tests, ongoing fear, surgeries, hospitalizations, and the looming thought of death. Then you’ll reach the place where reason and reasonableness and reasonable behavior don’t always reign. You’ll be far below the strictures of logic. You are at the base layer of chronic town. You’ve dug down to control.
In this place, sometimes the only way to regain a piece of control, sometimes the only way to survive the weight of illness is to abdicate control—to grab a handful of pie andnotdo the very things to care for yourself. When your body is no longer your own, when it is assaulted by disease, pumped full of drugs, and prodded on a regular basis by a parade of white coats, reclaiming control means eating the pie. With each bite, you say to yourself and the faceless white coats in your mind, “This is mine.” My spinning instructor’s wife probably felt both her least and most in control of her diabetes when she cheated on her carbs and chose aSeinfeldre-rerun over an aerobics class with her husband.
Funny isn’t it, how that simpleton’s compassion can come back and bite you in the ass? Now I’m the diabetic with a super-fit husband. Jay has shown only unconditional love and support, but I can’t quite believe that some day he won’t head for the hills with someone who can match his aerobic capacity. I know that Jay wants me to take better care of myself onthe blood glucose front. I should be logging every carbohydrate I chew and calorie that I ingest. I should be losing weight — or at least giving it the old college try — so that my beleaguered body might have an easier time withstanding the ravages of both my disease and its treatment. But here’s the rub. I don’t want to. And it’s not like I’m thinking “I don’t want to” with an adult’s reasonable tone. My inner voice is akin to Andrew’s when I’m forcing him to floss his molars or blow his nose. The voice is loud; it’s petulant; and it adores apple pie.I don’t want to.
It makes sense that my new food restrictions chafe with extra force. Plenty of people struggle with making the shift to a diabetic diet, even if they haven’t had four years as a medical pin cushion as a run-up. Food taps into our primal selves. It is linked with our survival, our communities, our cultures. I wrote my undergraduate thesis on medieval women mystics who used their bodies — especially by withholding food (even to the point of starving themselves to death)—in their spiritual practice. For them, going without food was a vehicle that drove them closer to God.
And, as every anorexic worth her salt can tell you, food — perhaps because it links into a nerve center as complex as it does — is about control.
Pardon a little excursion down a self-pity path, but I have no control — zero — in my life now. Because my immune system is so weakened from the daily bombardment of prednisone and the monthly one of Remicade, I have been ordered by my doctors to avoid coming into contact with potentially sick people (i.e., the world). I’m lucky to have good enough friends that I’ve had lots of visitors, but still, an outing to the grocery store sounds downright exotic. Even if I wanted to break out and head to Safeway, I’ve been forbidden to drive because of my sarcoidosis-induced vertigo and the cocktail of drugs I swallow every morning. If I bribed the babysitter to drive me, I can’t be in the car (even as a passenger for more than about ten minutes) before the seasick feeling sets in. I have to cover my eyes with a shade like some Victorian neurasthenic and pretend I’m not moving through space at what feels like disturbingly impossible speeds. As I’ve mentioned in earlier entries, the new neurological impact of my disease has made it difficult for me to read or write. Since I’m a writer, I’ve lost my income (which was never that grand to start with, I admit, but still, it wasmine). The horrible headaches keep me bedridden and unable to care for my kid. I listen to expensive, but very good babysitters, raise him.
Since nothing in my life feels like my own, you would think that being able to control one aspect of my illness — my food and its direct impact on how I feel — would make me want to count every carbohydrate that even thought about sneaking into my body. You would think that I would want to chew on nothing but celery and cabbage in the hopes of reclaiming my face, which, with the prednisone bloating and the extra weight, is unrecognizable to me. (I have no neck, and it looks as if I’m storing up acorns in my cheeks. ) But, no, I want to eat spoonfuls of cookie dough, chased with pound cake and a bag of chips. I am ashamed to be such a bad patient, such a bad person, such a fatty. Who knows? Maybe being able to loathe myself on cue is my way of asserting my autonomy.
I wish I could close this essay on a hopeful note, that I could tell you that I have figured out a way to turn the feeling of being completely out of control—in my body, in my life, in my marriage, in my family, in my world—in a new direction. I am doing the best I can. I record my bloods sugar levels and I loosely log my carbs. I try deep breathing exercises when Andrew and the babysitter are making cookies. But yesterday, when my doctor called to tell me that I might need to get a bronchoscopy (where they run a tube down into your lungs) to isolate the pneumonia bug that seems to be resisting all the best antibiotics they are shooting into me, all I wanted to do was head down to the kitchen and shove something sweet into my mouth. I didn’t, but it was a close call. I found out later that I don’t need the bronchoscopy because the CT scan showed improvement. I would have endured the tube in my throat and the indignities of minor surgery. But I’m not sure I could have done it without a cookie beforehand.