Cover image for Sweet invisible body : reflections on life with diabetes
Sweet invisible body : reflections on life with diabetes
Roney, Lisa.
Personal Author:
First edition.
Publication Information:
New York : Henry Holt, 1999.
Physical Description:
xx, 297 pages ; 22 cm
Personal Subject:
Format :


Call Number
Material Type
Home Location
Item Holds
RC660.4 .R66 1999 Adult Non-Fiction Central Closed Stacks

On Order



An uncommonly intelligent and honest look at how living with a disease can affect every aspect of a person's life.

Diabetes is one of the strangest and most insidious of all diseases: a diabetic can give the appearance of robust health and often lead a long and active life, but within moments can be catastrophically ill, even dead. Diabetes is the seventh leading cause of death in the United States, where over 16 million people have the disease. The related statistics are staggering: diabetes makes an individual two to four times more likely to have heart disease or a stroke and it is the leading cause among adults, of blindness, renal disease, and lower-limb amputations. Lisa Roney was diagnosed with diabetes in 1972, just before her twelfth birthday. Sweet Invisible Body is her candid and exquisitely written account of living with a disease that directly impacts the choices she makes in every aspect of her life every day, from food and exercise to career and family. Moreover, and most remarkable, is Roney's willingness to intelligently explore and reveal the usually hidden consequences of living with a disease such as diabetes: how it erodes self-esteem, induces feelings of vulnerability, influences sexual choices, and leads to a heightened awareness of mortality. Full of wisdom, humor, and practical advice, Sweet Invisible Body will be welcomed by diabetics and their friends and families who have never had a spokesperson as articulate, honest, and insightful as Lisa Roney.

Author Notes

Lisa Roney is currently working toward a Ph.D. in literature at Penn State. Her first short story, "Nothing by Comparison," was published in Harper's in August 1996. This is her first book.

Reviews 2

Booklist Review

Butterfield and Roney are almost exact contemporaries, but their books about struggling with diabetes are remarkably different. Butterfield's is much less personal. Coming from a well-to-do family and diagnosed at 10, she had less to worry about than Roney. She dwells on her successful career as a global personnel headhunter, with her major crisis occurring the first time she had to turn down a foreign assignment because of her illness. Detailing the various related medical difficulties she encountered, which affected her eyes, nerves, and circulation, she presents a broad picture of her many-sided disease. Because of her financial situation, she was able to have two pancreas-kidney transplants, which ultimately put her back on her feet as an ex-diabetic. The proceeds from her book go to the Insulin-Free World Foundation, a nonprofit organization she founded and heads. Roney characterizes herself as a combination of aggressiveness and insecurity. Diagnosed at 11, she tells of her difficulties learning how to inject insulin, her problems in school and college with balancing life with diabetes and living in a group, and her several love affairs. Her accounting of those things is highly personal and clearly conveys the emotional ups and downs in her view of herself and in her relationships. Her successful standoff with her illness almost crumbled when her 15-year-old cat died from diabetes, but she ends the book on an upbeat note. Diabetes is a widespread disease, and both these personal records should have no trouble finding readers. --William Beatty

Library Journal Review

More than 16 million people in the United States have diabetes. Despite the ability of medicine to control the disease partially, its long-term complications make it the seventh leading cause of death in this country. Diabetics are more likely to suffer from heart disease, strokes, blindness, renal disease, and lower-limb amputations. Roney was diagnosed with diabetes in 1972, just before her 12th birthday, and her life has been indelibly marked by the physical and psychological effects of the disease. Candid, beautifully written, and touching, this exploration of the hidden sequelae of diabetes will spark recognition in anyone who lives with a chronic condition, especially those physical and psychological conditions that are invisible to casual observers. Suitable for the general public and highly recommended for all libraries.ÄStacey Hathaway-Bell, State Lib. of Louisiana, Baton Rouge (c) Copyright 2010. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.



Chapter One Pretty Ugly My mother didn't want me to let my hair grow, but I insisted. At five years old, living in a new town with no new friends, I wanted to be like Patsy, my favorite baby-sitter back in Memphis. If I could be like Patsy, with her long, shiny brown hair pulled into a neat ponytail, her eyes round and sweet as root beer candies, her legs below her pleated skirt tan and smooth like the surface of my mother's creamy coffee, then maybe I would have some friends here in Knoxville.     And, so, over my mother's protests, I began to let my own blond locks descend. I think my mother thought I would give it up, that it would be another child's whim gone tomorrow. Indeed, when the hair began to flip and curl in strange ways around my chin, I was annoyed. But in a little girl, it doesn't take much to reach the ponytail stage. I had to learn to braid it myself, by feel behind my head, because my mother said that if I wanted the hair, then I had to take care of it. I practiced on the fringes of the white chenille bedspread at my grandparents', and soon enough, though my hair would never stay in firm, tight ropes, I got the hang of it. My growing collection of barrettes--two turquoise Scottie dogs, a brass clasp enameled with three red roses, an old silver oval of my grandmother's, several plastic clips from the dime store--and assorted ribbons and elasticized bands filled a plastic box that had come containing shower curtain hooks. They were my first cosmetic concern, and I soon developed a love-hate relationship with them.     In fact, I liked them all as objects and I loved fingering the box's contents, lining them up on the dresser, and matching them to my socks. But I hated wearing them in my hair. The elastic bands and barrettes simply wouldn't stay. My hair, fine and wispy, escaped around the edges, and the ornaments fell out. My braids looked like shaggy caterpillars, my bangs would fall straight over my forehead with a barrette flapping between my eyes, and the ribbons would slide toward the back of my head. The ribbons were the worst, and my mother and I battled over them for years. I always preferred to wear my hair loose, but she wanted me to keep my hair out of my face and before school every morning would tie a narrow ribbon, bow on top, behind my ears. They pinched, they looked stupid, and I always took them out and slipped them into my book bag on the way to school. Sometimes I would forget to put them back on before I went home, and my mother would sigh and shake her head.     When you are a child, beauty is such a simple thing--no makeup, anti-wrinkle cream, hair dye, hair removal, or surgery required. In spite of my mother's worry about the hair hanging in my face, I had confidence in the beauty of my hair all by itself. I was the darling of both my grandfathers, who praised my cuteness on every visit. My second-grade schoolteacher, in a thank-you note for a scarf I'd given her at the end of the year, wrote, "Each time I wear it, I'll think of a pretty, little girl who does such fine work in school...." Compared to my cousin Rebecca, who was always rubbing her puffy eyes and allergy-red nose into tormented shapes, I was angelic without even trying.     I would get my comeuppance. But even before that would happen, I had begun struggling with beauty. I wanted long hair, but I also wanted to wear pointed-toe shoes, not the practical saddle-oxfords my mother forced on me. A few years later when saddle-oxfords became all the rage in my middle school, I had my first realization of the arbitrary nature of beauty standards, an inkling that no one could ever get purchase in the shifting sands of fashion and in the quicksand of unrealistic cultural ideals. I lived, after all, not only in the larger consumption-driven culture of the United States, but more specifically in a South where many women and girls still wouldn't leave the house "without my face on." During high school summers, my friend Susan would apply her makeup before our 7 A.M. jogs, because we might stop by the grocery store for a bottle of juice afterward. At seventeen, she couldn't afford to be seen sans mascara, eyeliner, foundation, and lipstick. She didn't feel herself without them.     My childhood was characterized by my mother's ambivalence about all of this. Many years later, after my parents' divorce when I was twenty-four, my mother would renounce the feminism of personal habits to become a high-heeled, sculpted-nails clotheshorse, but when I was small she was an attractive but low-key professional educator, dressed for the public school trenches without any makeup. Looking back, I realize that she never cultivated any of that sort of femininity in me, never taught me how to apply eye shadow, never curled my hair, never gave me jewelry.     I think my mother, only twenty when she first became pregnant and with two children by age twenty-three, wasn't even used to her own adult body, and, of course, she wanted to avoid the mistakes her own parents had made. Her own mother had made her aware from a young age of how her own body was a commodity for marriage. Scratched across the cheek during a neighborhood scramble at age eight or nine, my mother was admonished that she must rub the wound with Vaseline twice a day in order to avoid a permanent scar. Such a disfigured face, her mother said, might prevent anyone from falling in love with and marrying her.     Not wanting to inflict such strictures and fears on me, my mother let my body grow like honeysuckle over a back lot fence--strong and unfettered, but also undisciplined, untended, and basically ignored. I ran hard with my brother and our friends, first in the sandbox and backyard, later exploring the nearby woods and playing "night games" of Kick the Can and Capture the Flag. But my parents only reluctantly taught us how to swim and how to ride bikes. My mother insisted I have short-term tap-dancing lessons, but we never danced at home. Though we enjoyed a good meal, a hike in the mountains, the purring presence of a cat, we were a rather cerebral family.     As with swimming and bike riding, I always felt behind when it came to style and grooming. When I went to my mother to ask about shaving my legs, after having the difference pointed out to me at the local swimming pool, she told me I was too young. It was my step-grandmother who gave me my first razor for Christmas one year. There was no ear-piercing, no bottle of lavender nail polish, no poster of Donny Osmond on the wall. I didn't start wearing bras until a boy at school had run his finger down my back and commented that my boobs were swinging free. I went home and tearfully reported the incident to my mother, and, with her apologies, we went immediately to the department store.     It was the fall of 1971, just before my broken bones and my diabetes. My family was back in Memphis, and I had left behind my rough-and-tumble friends in Knoxville for the ultimately conservative social atmosphere of the real South, untempered by the presence of East Tennessee mountains. Tomboys were not tolerated, and the girls in my school already had a growing interest in the opinions of boys.     The "foundations" department at Goldsmith's spread across half of the entire second floor, and my mother and I rode the escalator right into a land of lace, satin, and spandex. A plump, gray-haired lady packed into her dark blue suit minced her way over to us, moving tightly between the overladen racks and within the obviously great compression of her own underwear. I cringed at her discomfort. She smiled hungrily.     "We're here for her first bra," my mother whispered conspiratorially.     The woman appraised me kindly. "Well, we can fix you right up, sugar," she said. "It's so exciting--you'll be prettier than ever."     Embarrassed, I milled through the lacy, heavily padded, variously colored bras hanging on racks, while my mother and the saleslady selected several "training" bras in cardboard boxes. I tugged at the elastic bands of my sleeves and scratched idly at the red welts they always left on my arms. What would it be like wearing elastic around my chest all the time? Did the tiny swelling of my breasts really merit this?     In the dressing room, I tried on several of the thin, unthreatening training bras. They weren't bad, and, surprisingly, I liked the sense of protection they gave me. My mother showed me how to lean forward, to let my small breasts fall into and fill the cups, and handed me each bra as she took it out of its box. We didn't talk much, but in the next cubicle, a drama took place.     "It hurts, Mama," a girl's voice whined. "I don't want to wear it."     She sounded about my age, perhaps a little older, and I thought at first she was talking about a bra. Some of the ones out there had looked pretty tough--rigorously shaped, with hard wires around the bottom of each cup, with straps so thin they looked cutting, and bands so wide that it took three or four hooks to keep them secured. But then her mother spoke.     "I won't have you jiggling all over the place. No proper young lady can do without a girdle, and you might as well get used to it now."     "But, Mama ..."     "No buts about it. If you want to get a larger size, then fine. We can face up to how fat you are. But you're going to wear a girdle. I want no more arguments."     "Very old-fashioned," my mother said on our way out of the dressing room, probably in answer to the horrified look on my face. "Don't worry. You'll never have to wear one of those." In spite of the fact that I'd wanted a bra, we were together on the matter of girdles. No matter how plump you got, too much bodily discipline of that sort seemed horrible, somehow sick.     I might get annoyed that my mother ignored my developing body, but at least that allowed me to roll happily in the leaves with my dog, to run wide circles through the long grass, to rise over the double oxer on the back of my horse, to never question that connection between the idea and the execution of a physical act. With my fall from the horse in December 1971, my physical confidence began to fail, and this was compounded by the budding sexuality that my mother did not teach me to manipulate. Sometimes I wonder if it would have helped if I had learned earlier that my body was something to disguise. That might have prepared me better for what was to come. From inside the house, I could hear the thwack of my brother's basketball against pavement and backboard, a mesmerizing sound, rhythmic yet irregular as my own breath. Mom wasn't home yet, and I felt at a loss, tranquil in the zone of still air provided by the house yet irritable with the way I felt my cells rubbing against each other. Though the squeak of Kelly's tennis shoes and the slap of the ball seemed far, far off, they bounced incessantly between my ears.     My head hurt and my body ached. I had become so pasty and wasted that my brother had taken to calling me "Flat-Bottom Boat." Awkwardly I maneuvered around the house, poling my way with crutches, a cast still on the ankle I'd broken a few weeks before when I fell from my horse. Taut skin over skeleton, I floated, bumped into doorframes and furniture, a clumsy and pointed canoe indeed, and looked for something I would have the energy to do.     I docked myself on the floor in the living room, paging through a magazine without reading, watching the weak winter sun flicker through the limbs of the trees in the backyard, eating Hershey's Kisses out of the turquoise glass candy jar on the coffee table. Holding and twirling the transparent candy-jar lid in front of my eyes, I thought about the spatial division--sofa, lamp, hefty armchair all out there, me under watery glass, drowning peacefully. I peeled another Kiss and balled the foil, almost wanting to bite it, to make of it a filling in my perfect teeth that had felt so funny lately, to chew and swallow something that might make me feel full with its substance. Even the pale winter sunlight felt good on my skin, and I drowsed, cheek to the carpet, the residue of chocolate a comforting thickness in my mouth.     Vaguely, I was aware that I was not well, but I didn't care. I was too tired. I was too sleepy. My cast was too heavy.     Out of that remote world where there was still noise, however, the telephone rang, and I raised myself slow as molasses to answer it. A crisp female voice asked for my mother, and I replied that she was not home yet. "Could I take a message?" I asked in the polite manner of the well-trained child. "No, no," she said, "but tell her to call Dr. Verner's office immediately."     A tube of blood had been drawn painfully from my arm at Dr. Verner's office a few days before, and I paused as I hung up the phone because now I knew clearly that I was ill. The nurse wouldn't tell me the results of the test, even though she knew that I was the one tested. She had not told me that everything would be all right. This had to mean the results were bad. Even in my weary, fuzzy state, I could figure that out.     My mother had already proffered a suspected diagnosis. Because I had been in a wheelchair for six weeks, with broken finger and ankle, and only just recently promoted to crutches, my condition had made itself obvious. Washing my hair, dressing me, helping me to the bathroom, my mother felt under her helpful hands my limbs shrivel like stalks of drought-dry grass. She fetched endless glasses of iced tea and saw that nothing slaked my thirst. It seemed unbelievable that yet another physical calamity should befall me, but she remembered from childhood a Cherry Ames nurse story about the unmistakable symptoms of diabetes: weight loss, excessive thirst, frequent urination, fruity breath.     "You smelled," she would ever after recall, "like an overripe banana."     Only the weekend before, spending the night with friends of the family, I had impressed everyone by peeing every fifteen minutes. I had sat with Sharon and Stacy, playing Parchesi, eating chips and drinking Coke, while their father watched TV and their mother hovered. The lines on her face deepened every time I scrambled up to go to the bathroom. I hardly slept all night, afraid I would wet the bed. No one else slept much either, as I had clomped up and down the hall, announcing the urgency of my overworked bladder each time. When my mother picked me up the next morning, she and Mrs. Fortner exchanged whispers out by the car. Speaking hastily across the open car door, both of them glanced toward the porch where we girls made one last set of cat's cradles in the strings looped around our fingers. Our mothers' eyes struck me over and over with cold worry, and I felt tingling darts along my bare wrists. Only later would I know that this sensation was probably a nerve reaction to my elevated blood sugar.     At the time, I only knew that the looks that people gave me had changed over the past two months. From approving smiles beaming back into my pink-cheeked face and fond pats on my platinum-crowned head, responses of relatives, teachers, friends, and strangers had all become frowning and grim, pitying and repulsed, simultaneously judgmental and bland. I knew I didn't look good, but the broken bones were supposed to be a temporary condition, so I hadn't thought much about it. Now something crept over me, forcing my eyes across the bony wrists sticking from my coat sleeves, showing me the red rubbed marks from the crutch handles, making me stare down at the grotesque knobs of my knees.     This feeling, and the evolution of the glances I earned, slid through my mind when the nurse called, and I hobbled back into the living room and resumed eating Hershey's Kisses, understanding crudely, thinking that perhaps this would be the last time I would have a chance to savor chocolate. The truth was that I would taste chocolate again, but that the easy sense of an appreciative universe would be gone forever. I would miss that far more than any sweets.     Anyway, although I knew I shouldn't be eating the candy, I was ravenously hungry, and afraid. Under my jeans, my hipbones jutted up like beware-of-dog signs and my stomach emitted growls as if the cage of a slavering Doberman. I could see myself reflected in the sliding-glass door, the gray trunks of January trees forming a skeletal backdrop outside. I felt as skinny and wooden as they, and I raised one crutch over my head in imitation of the reaching branches. Finally, I plopped into the rocking chair, looking between my reflection and my actual body. In the glass, my heavy, brown, octagonal-shaped eyeglasses overwhelmed my pale face, and my hair hung dull and stringy all around. But worse were the surfaces and sensations of my body up close. My right ring finger, crooked and scarred from being broken, pierced laterally with a traction pin, and then growing to the foam rubber padding of the splint, refused to fold neatly into place next to my other fingers. Texture-wise, the surface of my skin had become peculiar--dry and almost stiff with dehydration, but oily to the point of slime in patches over my face and torso. Unless something was in my mouth, causing my saliva to flow, it dried up like poured concrete, my tongue stuck like a footprint in an old sidewalk. My left arm sported an oblong green bruise from the blood sugar test of a few days before, and I could not forget the sensation of that long needle sliding into my arm so purposefully.     The afternoon shadows lengthened, I listened to the outside--boys playing basketball, cars swishing down the street, dogs barking in the twilight--and felt my own lassitude. That world receded further and further as I drifted into a different kind of awareness. Around me the house stood, a protection, a box, a prison, a haven, a moat, an almost inescapable divider. The house became my body, and my body only a dysfunctional part. I imagined that I was some internal organ my mom had called a pancreas and that I could no longer do anything inside this body of a house but instead lay passive, inert. I thought of the texture of severed chicken livers, dense and glistening--they were all I knew of internal organs.     For a moment my mind reached toward a book, roamed the back rooms, even ran into the barn and pasture across the street. So much waited for me. I still wanted to do things! Then even the living room retreated, and I realized that I was inside, not only inside the house, but looking and experiencing inside my body, not only the surface in the glass reflection, but further inside, in the land of long veins like rubber bands, of stringy intestines and soupy cavities, where food was transformed into something entirely different from itself, properly or not. Everyone else was still outside; I had this space all to myself.     It was, if not a pretty place to be, an interesting one. The rhythms of my heart and my breathing comforted me in a peaceful dual pattern of systole and diastole, in and out, rise and fall, one and two. My ribs protectively hugged my lungs, my breasts seemed to be growing as a cushion for my heart. I had always flushed easily, and, now, when the hyped-up metabolism of uncontrolled diabetes combined with the slightest embarrassment or exertion, I could literally feel the blood flow into my face, the capillaries expand and open, the heat come to the surface of my skin so hard and fast that it sometimes felt as if there were no blood left in my heart and major arteries. I could also, for some reason, feel my huge, hidden eyeballs in my head and, when I closed my eyes, see the image of blood vessels, little snakes of vision stretching toward the light. Certainly I could feel the hollow bag of my stomach, the pain of its emptiness outlining its shape and size as clearly as any metal pointer during an autopsy for medical students.     In this, my first experience of the inwardness of illness, of a future of defining myself from internal states, I realized that I'd at least partially lost contact with what was external to me, even my own appearance and demeanor. I did not analyze the feelings, but, though I could see that my cuteness had withered, I did not want to connect to the fearful glances people had started giving me--they had to be looking at something or someone else. Granted, too, that perhaps my internal and external states were pretty well matched that day, but soon enough that too was untrue. I had to develop the ability to pay attention to a whole range of physical phenomena that others could not even see, and this focus meant that other information--from the surface--was blocked.     Over the years, other people have marveled at how well I know my body. Because I constantly monitor myself--signs of low and high blood sugar and all the related minor "symptoms" of complications--it seems to others that I am unusually in touch with my own physicality. And I am. Internally. But the outside? My skin, the contours of my face, the proportions of my legs, the shapes of my breasts, belly, ass--my connections to the rest of the world? Even standing naked in front of a full-length mirror, I still cannot see them clearly.     But I always retained the desire to please, and so I paid ever closer attention to others' faces in response to my appearance. I have read those faces as though they were mirrors, as though I could see myself only through them. I think I am searching these faces for clues about my fate, based on a moment in time when nobody told me very much. That day early in 1972, I waited for what seemed like a long time before my mother came home. When she arrived and called the doctor's office, her face knit itself into a web of pained wrinkles and grieved furrows. She put her hand tenderly on my cheek, and looked at me with fear and horror.     To this day, whenever someone frowns, I have a tendency to feel ugly, sometimes even sick, all over again. The results of that first blood sugar test defined me most certainly as having diabetes mellitus, "juvenile," as they called it then, with a ratio of more than 400 mg/dl (milligrams per deciliter) of glucose in my blood. I was not far from ketoacidosis and coma. Her face set with grim determination, my mother packed me a suitcase and loaded me up in the car for another ride to the hospital. But this time things were different. No longer a knock-about kid with a couple of broken bones, waiting in the gruesomely fascinating hubbub of a crowded emergency room, I was this time ushered quietly through carpeted halls, and not into the children's ward because it was full, but into a large, empty room on a silent, tense floor.     What I remember most about that stay in the hospital is needles. My thin arms soon enough were tracked up and down with bruises and punctures, as in those days a full tube of blood was needed just to determine the moment's blood sugar. Ah, for the quick finger-prick technology of today, but it didn't exist then. Soon, it was discovered that I was cursed with "rolling" veins, so that most samples required that the needle be turned and gouged back and forth, as the lucky seeker sought to catch the vein as it turned evasively in my arm. I dreaded the arrival of the technicians and when one mistakenly told me that I would be "giving blood" every hour all night I wept uncontrollably until a nurse asked me what was wrong. Hysterical, I could hardly tell her, but soon enough she corrected the error and left me lying in a barren pool of white light in the dark room, relieved, but drained, staring at a wall that I did not see.     With that I had overstepped my allotment of tears, and I did not cry about my diabetes again in front of people. Instead, I focused on my arms as morbid attractions, their swirls of earthy colors like watercolor landscapes and the pattern of punctures like clock faces plotting out important moments of the future and past. I was fascinated at how the blood could leak under the skin, how the body eventually cleaned up and repaired each little mess, the bruises and pinpricks shifting and fading like each day's sunset. The skin was such a transparent layer, flaking off and replacing itself over and over, and I was nothing but these separate and temporary parts, smelly substances, decaying flesh.     Why, I wondered, did the bruises go away and yet the moles stayed? I fixated on the more permanent status of my moles, especially on my left arm. I spent hours staring and memorizing the patterns, again using the clock face image to make this possible. There were four main clocks: 2:25 near my elbow, 5:49:47 largest and in the middle, 5:10 just below that, and 8:12 just behind my wrist. I was obsessed with the idea that my mother should also memorize these patterns, in case I should disappear and a replica or substitute of some sort should masquerade as me. Surely no one, no matter how diabolical, would have the ability to duplicate me down to the moles on my arm. I never, in all the years I had this fantasy, thought about whether or not my replacement would have diabetes.     Would anyone recognize me through all the physical changes? No longer cute, I searched for other ways to assure myself this was actually my own body. Somehow, I wanted affirmation that someone knew me, understood the essence of me, would miss me if I were gone. What I got was a lot of attention to the practical matters of keeping me around, but little acknowledgment of the painfulness of what I knew: that I had a serious illness that would almost certainly shorten my life and which could arbitrarily end it at any time. Although improvements in treatment since then have rendered differences in life expectancy minimal for those of us in good control, the diagnosis had altered every thread of my existence.     About the fourth day of my stay, my mother returned from her first and only meeting of the American Diabetes Association support group. "You're not leaving the hospital until you can give yourself your own shot," she said, wearing the dogged, stubborn expression that was becoming so frequent on her face. She had found the meeting full of whining self-pity, and the contents of her stomach rose dangerously as she listened to a mother of a teenage girl who still refused to give herself injections. Whenever the girl wanted to attend a sleepover, her mother would get up and drive across town to the friend's home in the morning to administer her shot.     "You have to be able to take care of yourself," my mom said, and I nodded my agreement. Just like with the braids, I thought. No big deal.     Doing it was another thing. Injecting sterile water into oranges proved fun, and I played for hours, my boredom relieved slightly, the bright color and soft shape of the fruit welcome in the dull, white room with its square, sterile surfaces. But I would hunch for hours over my thigh, my left hand urging the scarce flesh into a dimpled mound, the syringe posed spearlike in my right hand, unable to stab. Self-mutilation would never have been my choice, but here I was, learning it in the hospital. Everything in me resisted. I didn't want to hurt myself. I held my arms a hundred different ways, varying angle, height, distance from my sides. I tried closing my eyes, but could still sense when the needle drew near my skin. I tried to force myself into the quick, casual motion that was so easy with the orange. Nope. Nothing doing. So, against the nurses' teaching, I tried a slow approach, resting the tip of the needle on my leg and trying to talk myself into pushing it in. I could bear the pain of the very tip of the needle in my skin, I found, but to shove it into the firm flesh was more than I could bear.     Besides, hadn't I done enough already? In spite of its repugnance, I had mastered the skill of urine testing right away. Every time I peed, I caught some in a clear plastic cup. Then I opened a little kit in a vertical stand, opened and dropped a Clinitest tablet into the test tube, took the eyedropper and measured out three golden tears of stinky pee into the tube, and waited to see it bubble and change into malevolent colors that I had to compare to a chart to see how much sugar was there. In the hospital, I thought, this is okay, but in the bathroom at school, no way. The entire setup had to be washed and laid out to dry every time, and I began to imagine that my fingers, even scrubbed with soap and disinfectant, reeked of urine. Eventually, the urine tests would become more of a problem than the shots, but at first it seemed almost natural in comparison to sticking needles in my body.     Once, at age five, I had stepped on a nail, instantly bending and pulling it out, as my toe bled into the grass in the backyard. That whole sense of something alien invading one's body--it was worse than the pain! But the nail had been an accidental collision; now I was being asked to do this intentionally. The space is already occupied by me, I thought, how can something else be forced into that same space? It was too weird that we weren't solid after all, but permeable, insubstantial, wobbly. How could I ever again feel the same about the surface of my body?     A few days earlier, I'd sat in the living room, looking into an inner self ever divided from the world; now I saw that the world was not so separate, that I was subject to its incursions at any time. And worse, neither idea canceled the other out, the paradox being the most horrible truth of them both. Isolation and vulnerability to invasion, both delivered via the same little syringe.     For days I had disappointed my keepers. Every nurse on the floor, at every shift during the day, had tried her hand at encouraging me. We had all failed together, and patience was growing short, even among those who used the gentle approach. The days had been an Everywoman parade, as various nurses represented a panoply of psychological strategies to get me to stick the needle in my leg. There was the Fun Approach--see? your leg is just like the orange, see how fast you can jab it. There was the Tough Approach--no big deal, just do it. And there was the Sympathetic Approach--I'm so sorry, but it has to be done. In all of them there was the idea that I should be a brave girl. "Make it easier on everyone," one of the nurses finally sighed in exasperation, glancing guiltily over her shoulder to make sure no one else heard, "and don't be such a fraidy-cat."     The nurses on my floor, after all, did not usually deal with children, and I never saw or heard another kid while I was in the hospital. Only a monotonous roar of televisions, P.A. system bells and pages, and whispered conversation floated in my door, and I seldom left the room. At night, I might be awakened by the moans, sometimes shouts, of the man across the hall, and I dreaded it, but in the morning it seemed like a dream. For me, stuck in this odd ward full of older patients, there was no one to play cards with in the long hours of the day, no one with whom to compare injuries and symptoms, no cheerfully decorated playroom or lobby, no camaraderie. I met no diabetics who could give themselves shots and no other youngsters who had learned difficult treatment regimens. Of course, I resisted.     Eventually, the task was accomplished with the clever help of a candy striper. I still remember her with all the awe and fondness accorded a savior, her bright face and her helpful lies. As part of the encouraging entourage, she had visited me at least once during each of her shifts, always popping her head politely in the door, her eyebrows raised cheerfully and expectantly in a question of whether I had done it yet. She exuded an unusual sincerity, as though she thought it really was her job to help people. A few years later, when I was fourteen, I followed her example and became a candy striper myself, but, ironically, the hospital considered me too young to work with patients and assigned me to work at the gift shop, the main feature of which was a huge selection of fresh candy displayed old-style in glass jars and scooped and weighed into individual bags by me. I bought and ate tons of it on the sly, and quit after a few months, feeling as though I had helped no one. I've often wondered if my candy striper knew how much she helped me, even had the notion of going on Unsolved Mysteries to see if I could locate and thank her, though it probably wouldn't merit a segment because she didn't do anything as dramatic as pull me from a burning or sinking-in-the-water car.     What she did was to cut a deal with me: she'd let me try it on her first if I'd go on and do it to myself immediately afterward. She said she wasn't afraid because it wouldn't hurt anyway. If I had to do it the rest of my life, she said, she could certainly let me try it on her once.     To shoot her in the arm with the ubiquitous sterile water, I sat Indian-legged on the bed, facing her side. She sat firmly on the edge of the bed, looking out the window at the gray February sky and the ugly roof of the neighboring wing of the building, a professional smile fixed on her face. Around us fanned an audience of the concerned: my parents, a floor nurse, all the witnesses necessary to test me, to urge me on, to sigh again if I failed.     Hands cold and with a show of false bravado, I expertly filled the syringe and tapped out the bubbles. This was something I could do, but I knew that it meant nothing, that the hard part remained. The candy striper's pushed-up sleeve revealed a smooth, tanned bicep, which I took reluctantly between my blue-white fingers, first pinching up too much flesh, then too little, adjusting the pressure to the resistance I could feel growing in her muscle tissue, which quivered in spite of her posture, straight and stalwart as a tongue depressor.     The airy dart-throw technique still evaded me, and finally I braced the side of my right hand against her warm skin and with small jerks planted the needle bit by bit into her arm. This seemed to take forever, my peripheral vision going dim, a rivulet of sweat running frightened down my back, and midway she sucked the air in through her teeth and tensed her arm in spite of herself. I knew I was hurting her, and as soon as I could I pulled the syringe back out of her flesh. Then I recoiled. Where I had squeezed with my left hand, I could see the scarlet imprints of my fingers. Where I had withdrawn the needle, a purple-green bruise already swelled around the nimbus of the tiny but angry puncture wound.     Everyone in the room breathed together in a heaving sigh of relief instead of one of disappointment. "Now, see? That was easy," the young woman said. "Piece of cake." I smiled at the metaphor, but no one else seemed to notice, focused as they were on cheering me on to injecting myself.     After that, my own leg seemed fairly easy to stick with a needle, but I must admit that I've never really mastered the technique of the quick and painless jab. Certainly, the less I'm thinking about it the better it is, and most of the time it really doesn't hurt much, as the needles have shrunk to a filament thinness, but always I remain aware of the crossing of the boundary of my body. Taking shots is the least of my troubles as a diabetic--almost nothing--except when I pause and think about the permeable surface of my skin, my being.     In December, I'd had a traction pin drilled through the end of my right ring finger, and the doctor had only a few days before pulled it out with a pair of pliers. I had been afraid that with it gone I'd be able to see through the hole, from one side of my finger out the other, but instead blood trickled out each side and the finger's solidity reasserted itself. Giving shots is similarly strange, and even now when shooting up, I often think about painter Frida Kahlo, impaled on a pole in a girlhood tram accident, about the dagger entering the breast of Juliet with a stab she suddenly finds is different from that of love, about the bayonets of World War I, the shrapnel of World War II, the machine-gun fire of Korea and Vietnam, transforming living bodies into meat. It's not the pain that bothers me, but the creepy violence of other matter merging with mine.     At eleven, I wasn't ready for this idea, much less for its physical fact. And yet, as with so much of growing up (or refusing to), something happens and you either face it or you don't. We are called upon, so to speak, both happily (as in falling in love, receiving a scholarship or job offer in some new and far-off place, or embarking on writing a book) and unhappily (in the face of illness, death, and other types of loss and trauma). We have little choice about when these things happen in life, but we do choose whether to grow or shrivel.     I'm grateful that I was able, with that young woman's help, to take the first big step toward growing up. Sitting on the hospital bed, with an expectant audience, I performed. In earning others' relief and approval, I learned that doing for others often is also doing for oneself. Alongside that, however, I encountered my own solitary nature in the heavy responsibility that would never leave me, not for a waking or sleeping instant, though I might rail and rage and plead and despair over it. Staring down at my leg, taking the plunge, swallowing my fear of my body, I learned that I was so much more than just that mass of flesh.     I was also beginning to understand that others seldom really feel this way, no matter their rhetoric, that people's attitudes about me differ once they know the truth about my body. Our society has an elaborate system of denial in the face of our biology, and suddenly the Emperor's clothes were stripped away. I could see him, and myself, naked, but no one else seemed to notice.     During the elevator ride up to my room the night I'd been admitted to the hospital, my family stood hushed and somber, as I leaned tiredly against the wall with my crutches. Facing us, and our obvious distress over what seemed to her a minor event, a nurse patted my cheek, pointed at my cast, and said, "That'll be all healed in no time, don't you worry," before cheerily exiting the elevator and leaving us further stunned and embarrassed.     This misapprehension of my illness soon became a theme, and has remained so all these years. When you have a disease that no one can see, you are alone with it in a peculiar way: the more obviously ill and handicapped may be rejected out of hand, but with diabetes you are accepted, to the extent that you can "pass." And, I might emphasize, only so far as you seem "normal." What this creates is a division of self, the "abnormal" hidden within the "normal," the body primed to betray its secrets, the rejections delayed but looming. I have learned over the years to expect them, and many friends have commented on this trait of skittish anticipation of the worst. This attitude, however strange and sad it seems, reflects my reality. I am always a guest in the good graces of others, and, directly or indirectly, it is my body that will turn them away from me.     This lesson began to take root in my mind immediately, and budding adolescent femaleness soon reinforced it. A few short weeks after my diagnosis, my broken ankle was deemed healed and the cast was removed from my leg, an oddly shrunken limb that no longer seemed mine. The muscle was stringy and wasted, dead skin in chalky layers flaked from my surface, and long black hairs the likes of which I'd never seen emerged through the powdery crud like strange weeds, prickly as burrs, sharp as scissor-grass. Home from the doctor's office, I locked myself in the bathroom, scrubbed until my skin turned red, and shaved until the razor was packed with detritus. Already I had a typical horror of the real, mature female body. In another few weeks, the first brown stains appeared on my underwear, another phenomenon to hide at all costs. I developed a horror of and disbelief in the tampon commercials that depicted slim young girls in white pants. Never, never would I wear such clothing. They could keep the white pants in the same dustbin as the girdles, the one as overly revealing as the other was oppressive. Soon, my skin was breaking out from scalp to waist, and within months, I began gaining significant amounts of weight and metamorphosed from skinny to plump. I no longer knew myself.     And so, I did what we all do. I covered myself and I hid what all women hide--menstruation, bulges, hair, pimples--and the extra mess of urine tests and injection sites. The women that I wanted to be like were smooth, nice-smelling, and functioned as imperceptibly as the grass grew. I took to wearing high collars and long pants in dark colors, continued to let my hair grow as a veil over my ears, neck, and face, and took to filthy bathroom stalls to take my shots. No one wanted to see the truth, and I wasn't about to make them. Although in the back of my head I wanted to believe there were more important things than cosmetic beauty, I thought the truth was just as gross as most people did. It was just that because of my diabetes I knew that the ugly truth was me. Copyright © 1999 Lisa Roney. All rights reserved.