My Life as a Body
Katherine Reilly McGovern
In fifth and sixth grades we passed around spiral notebooks called "Slam Books." On each notebook page there was a category - like "cutest couple" or "smartest boy." Nearly everyone made their own notebook, and filling the pages with names from our classes took a lot of time, in class and on the playground. A quiet, generally good kid, I sometimes saw my own name on the "nicest girl" page.
The fall of 1986, at age eleven, I began finding my name on the "thinnest girl" page where sometimes my name appeared more often than Kristen Schmidt's or Angela Baker's did. I don't remember thinking about my weight much before that year. Girls had begun announcing in the cafeteria that they were on diets and avoiding the butterscotch pudding, but I thought they were silly. It was with no small amount of pride, however, that I began sneaking looks at the "thinnest girl" pages in the slam books.
My mom had begun to worry that I was malnourished - I never wanted to eat when my parents ate dinner but I would eat snacks frequently. I wasn't trying to lose weight and I didn't know why it was happening. In addition to losing weight, I had to pee all the time and I had no energy. I was thirsty too. I remember very clearly standing on the blacktop during P.E. class and daydreaming of a cherry slurpee - nothing seemed as divine as big cup of cold, sweet liquid. I spent inordinate amounts of time planning how to sign out and take the hall pass to go to the restroom without drawing attention to the fact I had to go all the time. My school picture from that fall shows a sickly looking skinny girl with nearly yellow skin.
Things came to a head when I went to my sixth grade camp-out. The long-anticipated trip is memorable to me only for my insatiable thirst and my nighttime trips to the latrine. I got out of my sleeping bag and walked to the outhouse in the dark so many times I lost count. The next morning I couldn't stop shaking, no matter how many sleeping bags my friends piled on top of me. I went home early from camp and my pediatrician made the obvious diagnosis - I had diabetes.
At age eleven it's hard to imagine all the consequences of a chronic illness, and that's probably a good thing. If during those five days I spent at Children's Hospital in Washington, D.C. learning the ins and outs of diabetes treatment I had been able to see myself at age 22 finally saying out loud that I have an eating disorder and had spent years lying to my doctors and my parents, or at age 25 beginning to lose my sight, I don't think I could even have processed that diagnosis.
When you're not a "good diabetic" doctors and nurses often suggest that you're in denial - as if you don't believe you have diabetes. But it's denial that forms the coping mechanism of not just diabetics themselves, but of their circles of friends and family and the medical establishment.
Diabetes makes a person at once tremendously aware of her body and amazingly disconnected from it. From the first few days in the hospital when the doctors set your dosage, you begin to recognize how blood sugar highs and lows feel - high means tired, nauseous, depressed, and low means shaky, hungry, nervous, sweaty.
Having diabetes also means that food takes center stage. You constantly think about food because you have to - even if your doctor doesn't have you weighing portions or counting carbohydrates, you have to be aware of the quantity, timing, and sugar content of what you consume and how it will effect your blood sugar.
Your body functioning also becomes public - everyone knows what you should and shouldn't eat and they feel free to tell you when you stray from the diabetic diet. You have to inject insulin in public sometimes because it is often not feasible to juggle vials of insulin in a cramped public restroom. Inevitably, other people will have to help you treat low blood sugar.
Doctors and nurses will see you so often that you may feel that your main extracurricular activity is visiting them. When you run the mile in school the P.E. teacher will stop you, and only you, to ask if you're okay. Your body is grotesque at times. Sometimes you'll be grossed out by your body and the odd dips that form on your thighs as a result of giving your shots there or the bruises that appear when your needle hits a blood vessel, or the pin prick marks always on your finger tips.
The most common comment you will hear, starting the day you're diagnosed, will be, "I could never give myself shots." Your curt response shows that early on you're at least a little aware of your mortality. "If the other choice was dying, you could do it too," you say. Some people, maybe even your grandma, will find the sight of you testing your blood sugar, which you do four times every day, so repulsive that they will ask you to leave the room.
At the hospital when you begin taking insulin you will be surprised by your new appetite and soon you won't be on anyone's thinnest girl lists. At your first post-diagnosis sleep-over the other girls' eyes will grow large as you consume three bowls of cereal at breakfast, as your body, aided by the insulin, finally is able to feed your cells. Weight control will be complicated by the fact that because insulin is a hormone, increasing dosages make you gain weight. It won't be long before you figure out the process - decrease insulin dose, secretly of course, eat sugar, let blood sugar run high and lose weight. "But aren't there complications?" asks your best friend when your stand in the locker room telling her your new diet plan.
Complications always loom. You hear a lot about complications, all of it scary and some that you try to tune out. They're scary because you know your blood sugar isn't the best and you know you're lying about it, altering blood sugar readings in your little log book. Heart disease, stroke, neuropathy, kidney damage, blindness - it's hard to think of any dread disease that is not a complication of diabetes. Later you learn you're prone to all kinds of cold, flus, and infections. Yeast infections, styes in your eye, carpal tunnel syndrome, athlete's foot, the weird curve in your little finger - all more common in diabetics.
What no one ever tells you is that a striking number of young women with diabetes experience eating disorder and diabetics are four times as likely to develop diabetic retinopathy, which leads to blindness. No one tells you that at twenty-four, having survived the first year of law school and your first broken heart, you could be sitting in urgent care while the nurse practitioner peers into your eyes. You have come here because you think you have allergies that are making your contacts hurt, but the allergies aren't what the nurse is referring to when he says, "I'm not good on eyes, but this really doesn't look good."
A week later the opthamologist will be drawing on the back of a tissue box explaining that areas of your eye are being deprived of oxygen and your body is building new blood vessels. These vessels, structurally unsound, are leaking. When these vessels break, they obscure a patient's vision with spider-web type formations that bob around as the eye moves. When the blood vessels pull on the retina, it will start to look like the world is on the other side of a shower door. When the lasers have filled in the periphery of the eye with tiny white marks, the change in night vision will mean that you can't find your friends in a crowded movie theater. Your serious but gentle opthamologist tells you that this is happening to you because you've been diabetic for thirteen years, and for thirteen years your body has been under a state of siege.
Siege doesn't seem like an overstatement, when he calls it that. You've always carried with you a sense that your body would fail you. It betrayed you all the time. You felt exposed and trapped by it in 7th grade when in the cafeteria the boy you liked stood up and accused you of giving yourself shots. A girl you didn't really know yelled back that no, you didn't. You felt ashamed of your body when it grew larger and betrayed your eating too much or the wrong thing.
A girl who always earned praise for her behavior and her grades, diabetes meant you were always in trouble because your blood sugars were too high or you weighed too much. At each visit, even armed with your carefully falsified blood sugar logs, written in different inks and with randomized numbers to add to their authenticity, you were always presented with the choice - up the insulin and gain weight, or eat less and exercise more. The doctor would always express reluctance about increasing the dose, as even when you were what you now know to be a normal weight, the doctors told you you weighed too much. You would always pledge greater compliance to avoid the increase.
All through it, you and those around you would minimize the impact of this disease. It's no accident that diabetes research, in proportion to its human impact, is under-funded. We all say, "It's no big deal, I just have to plan ahead a bit and take my shots." "Sure, I need to watch my diet, but we all should follow this type of diet." "I can still become anything I want as a diabetic. The only thing I won't be able to do is be a commercial pilot, and I hate to fly anyway." "Steel Magnolias was written in the 1950s, we've come a long way since then - diabetic women can certainly have children - it just takes planning and dedication." Or as someone said to me when I was first diagnosed and in the hospital, "You should be glad you don't have cancer like some of the kids on this floor." Or as the essays in the back of the monthly diabetes magazines frequently begin, "I'm grateful for diabetes because it has taught me _______."
But even as those words came out of my mouth, I always knew they were false. I said them to counter all the "I could never give myself shots" and "Are you sure you can eat/do that?" comments. I went clear across the country to college to silence those remarks. I stopped wearing my medic alert bracelet, which was sure to start a diabetes lesson when it caught people's eye. I ate what I wasn't supposed to - in secret and quickly. I skipped shots when they seemed inconvenient. I told myself I never wanted children. I drank. A lot. With a buzz, I began to forget my body - both its shameful size and its "brokenness." I stopped caring about a future I didn't think I could have. And I put on a face of competence - I even wrote one of the "what I learned from diabetes" happy ending essays that I hated. A feminist from high school on, in college I became a vocal critic of dominant beauty standards and body hatred while bingeing in secret and hating my own body.
Laser surgery begins with Dr. Lorenzo putting a big lens in my eye to force it open. I lean forward into chin rest, pressing my head against the head strap. My hands grip the side poles, hold them like prison bars. Dr. Lorenzo holds the lens in my eye with her left hand and focuses the instrument with her other hand. She fires the laser with her foot. The laser makes a zapping sound and I see a flash. My free eye closes involuntarily and I have to open it quickly but carefully to make sure it doesn't move. She moves quickly, or as quickly as she can, allowing me to refocus on whatever spot she's told me to look at. When we're done and she takes the lens out and wipes the goop from my eye, a tissue in her warm, soft hand, it's the most welcome and soothing feeling I can imagine.
At the first surgery I was very afraid and I learned how connected my body is to my mind. When Dr. Lorenzo showed my mother and I a picture she'd taken of my left eye after injecting me with a dye, a black and white photo on a microfiche machine that showed clearly the fluid leaking from the stringy vessels in my eye, I felt faint, the world began to spin, and I thought I might throw up. Beginning in the week leading up to the first of what would be more than 17 laser surgeries and continuing through the year, I would find myself crying in public places and feeling queasy all the time. I was forced into a consciousness of my body. I struggled with my blood sugar, each of four or five daily testings offering another chance to screw up. To cope with laser, I tried to leave my body - I tried not to think about what was happening - tried to forget that a large mental object was touching my eye, or that 350 laser burns were being put in my eye each time, or that any sudden move on my part during surgery could result in central vision loss. I felt simultaneously trapped in and absent from my body.
By the time I was scheduled for a vitrectomy so that my surgeon could remove the jelly-like material inside my left eye in order to prevent a retinal detachment, I knew that my anxiety would manifest itself in a way my mind would not be able to overcome. As I waited for surgery in my hospital gown, I padded down the hallway in my silly slippers to the restroom, praying that I would not throw up. I cried there in the stall, knowing that I could afford to release only a few short sobs, because if I started releasing the flood inside it would never stop.
What I wanted then, what I want second most now (because sight will always be the wish I make first), was to be in a relationship with someone who would wrap his arms around me and hold me while I sobbed. I wanted that sense of safety and warmth so badly that I dreamt about it, but I could not let myself hope for it then and I still can't now because it feel like it's too late, like with already, pre-serious, disabling eye disease, I'd have "tricked" someone into caring for me, that my body, both in its largeness and in its disability, has made me unlovable, at least in a romantic way.
Each morning after the surgery, the first thing I did was check to see how the current bleed was doing - was it settling, beginning to clear? When I studied, I wore a pirate eye patch on my left eye so I wouldn't see the floating spider-webs. When I lost my vision would I feel like a brain trapped in a broken casing?
My range of motion seemed to decrease when I had to quit aerobics after my eye bled. When I cried too hard my eye bled again. When I caught the flu and vomited, my eye bled again. I spent one Sunday with my wonderful opthamologist as she tried to get in as many burns as she could between my trips to the restroom to vomit. As I stood up, rinsing out my mouth and wiping away my tears with a paper towel, looking at my puffy eye and grimace, I felt profoundly pathetic. At the end of the session, as I thanked my doctor, bleary-eyed and weak, for her responsiveness and kindness, she grew teary. My future seemed to narrow just like the peripheral vision I was losing from the laser.
What was an acceptable life and acceptable vision changed each time I had a setback as my goals narrowed and became more short term - finish law school, finish the semester, get myself to class. I felt like I was in a tunnel, afraid to look to either side because I might truly be closed in. My parents told me I was brave but they didn't hear my weekly calls to my best friend during which I sobbed so hard I couldn't breathe and told her about my fears and my rage at the unfairness of my situation and all the bargains I wished I could make with God. I cried more than I ever had in my life. I wished I could go back to feeling like my heart was slowly breaking because, in retrospect, that seemed like a cakewalk. The emotional seems, at least in theory, transitory and it can be hidden. Physical disability feels agonizingly public and permanent.
Finding a way to connect my mind and body, finding a space between being a body and being a person that posses a body, finding a way to reconcile with my "broken" body while living with my body's unpredictability and disability seem the central struggles in my life. I may spend a lifetime looking for them.
© Katherine Reilly McGovern
Katherine Reilly McGovern is a public interest lawyer in Maine.
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