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Product Details
| ISBN-13: | 9780393320831 |
|---|---|
| Publisher: | Norton, W. W. & Company, Inc. |
| Publication date: | 11/17/2000 |
| Pages: | 284 |
| Product dimensions: | 5.50(w) x 8.30(h) x 0.70(d) |
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Chapter One
London
The worst thing that happened then, or ever in my life, was your diabetes. It was something I was completely powerless to prevent and I couldn't even take it on myself. For years and years after that moment in July, it was on my mind almost every waking moment. I'm actually thankful that the medical world painted such a rosy picture for us then, because I probably couldn't have taken it otherwise. I can only imagine what it was doing to you.
—Letter from my mother, 1990
My childhood ended and diabetes began when I was ten years old and living in London, less than a mile from the hotel where, years later, I would sit amid the orange juice cans and confusion. My family and I had moved to London after two years of living like nomads. I was born in Bermuda, the tiny island-country in the middle of the Atlantic where my father's ancestors had been among the first settlers. My mother had gone there on a two-week excursion for spring break during her junior year at university. The island was alive with calypso music and beach parties, and the men flirted with the young women who had gone to enjoy the sun and find romance.
From the first time Mom and Dad saw each other, they were inseparable, and, just four months after meeting, their whirlwind vacation romance went spinning into a wedding and an extravagant reception in Bermuda. They moved into the ancestral home next to my grandparents' house. My brother Blair, sister Lesley, and I were born while my parents were still in their twenties.But under the surface of this fairy-tale union was the mixing of two bloodlines of diabetes. Unknown to them, I had been born with the full complement of genes required to develop the disease—a ticking time bomb surrounded by a perfect world. But who would have known? Amid cheers of pride, I walked the length of the living room on my first birthday; for the next five years, people held onto lamps and breakable objects when I came into a room to protect them from my rambunctious enthusiasm.
I was five the first time I went to the mainland, during our family's summer vacation. We stayed with my great-uncle Chet and great-aunt Rache in their log cabin near Worcester, Massachusetts. Wild blueberries grew in the woods there, and I developed a passion for them. One day, armed with a bucket, I went berry picking along the wooded paths carpeted with pine needles. All morning I picked blueberries, but only half of them ever made it back to the cabin where I divided my harvest among three bowls, covered them in confectioner's sugar and took them out onto the porch to share with my great-aunt and -uncle. They were delighted and, after a few mouthfuls, asked me to go to the kitchen and get some napkins. As I walked back through the living room I saw my uncle, through the window, tossing his blueberries into the bushes. I didn't say anything when I sat back down at the table. Later, when my aunt and I took the bowls back to the kitchen to wash up, I asked her why Uncle Chet had thrown my blueberries away.
"Honey, Uncle Chet isn't allowed to eat sweet things, and he just loves you so much he didn't want to hurt your feelings by turning down your nice present."
"Why won't you let him eat sweet things?" I asked.
"Because he has diabetes," she sighed.
"He's sick?"
"Well, not really sick, because he follows a special diet and takes a medicine called insulin to keep him feeling well." Uncle Chet seemed fine so I never thought any more about it.
Four years later, when I was nine, Dad left his job at the family bank in Bermuda to take a job with a bigger bank in the Bahamas. We lived just outside Nassau on the flat, hot, and dusty main island. Nassau teemed with a desperate poverty that huddled in the shantytown "over the hill" where people had no fresh water or clothes. In flagrant contrast, the very rich lived in their private clubs with yachts and private planes. The islands were rife with political and racial unrest as Bahamians struggled for their independence from Britain. Rioting in the streets led to curfews, and burglary had reached epidemic proportions. Work permits were being taken away from non-Bahamians to create jobs for the country's citizens. For expatriates like us, there was no future in the Bahamas. With the writing on the wall, and three children and a wife to support, Dad needed a new job away from the Bahamas.
A large, international executive search firm, forever alert to changes in the currents of people's careers, approached Dad to open an office for them in London, and he grabbed the opportunity. Dad caught, quite literally, the next plane to England to find a place for us to live. Settling quickly on an exquisite rented townhouse near Holland Park in the West End, he called for us to join him right away. We packed our things in the Bahamas, put the house up for sale, and, two days later, staggered through immigration at Heathrow airport, carrying just a few more things than we could manage. Dad picked us up in a vintage car, then drove us to the townhouse that would be our home. Blair, Lesley, and I sat in the backseat with our hair blowing in the wind as we drove along the M4 into London.
As the trees turned green with summer, I was consumed by a relentless thirst and hunger. No matter how much I drank, I was thirsty. Most days my brother, sister, and I roller-skated across the street to Holland Park and along the paths that wound through flower gardens and grassy spaces, but my body felt clumsy and lazy. More and more often Blair and Lesley had to skate in circles while I caught up. We rode to museums on the top floor of the big double-decker buses, and went to watch the guards changing shift at Buckingham Palace. Yet what I remember most about that summer was the taste of "orange squash" in little plastic containers with foil lids. Everywhere we went I wanted a drink. I'd hunt down anything wet—sodas, grapes, tea—to stop the dryness that tore at my throat and to soothe my sandpaper tongue. But nothing could stop my thirst. Ten minutes after stopping to go to the bathroom, I needed to go again. Each day I was thinner than the day before and, before long, my clothes were so baggy that Dad made extra holes in my belt to hold my jeans up.
One day the word diabetes lodged in my head.
"Do you think I have diabetes?" I asked Mom forthrightly.
"What? What did you say? No. Diabetes? No, of course you don't have that, sweetheart. My grandmother, your great-nanna, had diabetes. So does Great-uncle Chet. Uncle Dick does too. We would know if you had it," she said illogically and all too quickly, although the worry in her eyes reflected a greater truth that she didn't want to believe. The word diabetes remained silently in the air, but my unnamed disease was getting worse, and quickly. My once-rambunctious energy had been lost to the illness that reduced me to a lethargic, skin-and-bone waif. Mom knew there could be no more denying that my symptoms, our genetic predisposition, and the stress sparked by the change and uncertainty of relocating made it likely that I'd indeed developed the disease.
I will never forget that unusually hot Friday in July 1970 when she took me to see our doctor on Sloane Street. We sat in uncharacteristic silence in the sparsely furnished waiting room, needing, but not wanting, to find out what was wrong with me. No more than five minutes passed before an efficient nurse called my name. She measured and weighed me, wrote 4'10", 5 st. 2 lbs. (72 pounds) on a scrap of paper and ushered Mom and me in to see the doctor. He nodded knowingly as we explained the constant thirst and weight loss. Giving me a little plastic drinking cup, he asked me to go to the "loo" and come back with a sample of urine. The mission embarrassed me, so when I returned I surreptitiously put the cup full of urine on the edge of the sink near the door. The nurse took it and held it up to the light, then sucking in her breath she bustled off. It wasn't long before she came back and, in a kinder, more sincere tone than she had used when we arrived, asked me to let the doctor speak to my mother alone for a few minutes.
I returned to the dreary little waiting room by myself. Nervously I fingered through the magazines that were stacked neatly on the table in front of me with their worn covers. A basket of faded artificial flowers stood on the floor next to the exit, a cheerless contrast to the robust vibrancy of summer in full bloom outside. I scanned the room, searching for something that might stave off the apprehension that swelled in my belly. Looking at the chairs, I remembered the punch line of a joke Dad had told me about counting sheep. It was something to do with counting the legs and dividing by four. As I tried to fend off the nameless fear that circled around me, I counted the aluminum legs of the orange vinyl chairs and divided by four. I jumped when the door opened. Mom came over to me and I sensed that she was struggling to stay calm. Something had upset her.
"Sweetie, come with me. The doctor wants to explain the results of your tests to us." I followed her into the office.
The tension was palpable. I couldn't imagine what I'd done to make everyone so angry. The doctor was sitting behind his desk reviewing the notes he'd made in my file, perhaps wondering how to tell a ten-year-old child that she had an incurable disease; how to explain that, for the rest of her life, she must give herself multiple daily injections. How to explain to her that there was a 40 percent chance that in twenty years she would experience kidney failure. Should he tell her she had an 80 percent chance of getting eye disease? And could he explain that her life expectancy had just dropped by 30 percent?
"Debbie, the results of your tests show that you have too much sugar in your urine," he said looking at me over the top of his reading glasses to gauge my reaction.
"What difference does that make?" I asked.
"I'm afraid it means you have diabetes," he said apologetically.
I looked at Mom, and she was staring at the wall behind the doctor. Never in my life had I seen Mom cry—ever. As tears made her eyes glisten under the bright fluorescent lights, I realized that there was a lot more to diabetes than too much sugar in my urine.
"How did I catch it?" I asked trying to make some sense of what it all meant.
"Diabetes isn't contagious, anyone can get it." In those days nobody knew that diabetes is caused by the immune system attacking and destroying the insulin-producing cells in the pancreas. Neither Mom nor I said anything, so the doctor went on to explain, "Your pancreas isn't able to produce insulin anymore. Without insulin you can't convert the food you eat into energy, so the sugar builds up in your blood and spills over into your urine. The weight loss, hunger, and constant thirst that you've been experiencing are all classic symptoms of diabetes."
"Okay, so that stuff happened," I said sharply, trying to stop him from going over all the things that were wrong with me. "How can you fix it?"
"Debbie, I'm afraid diabetes can't be cured." Mom looked at me, I looked at the doctor, and he looked at Mom. My doctor, earnest, conscientious, an Everydoctor, chose, like most do, to punt: "The good news is that it's a completely manageable disease," he said buoyantly. "It'll be no problem once you get used to it." But his very word choices and explanations—"disease," "hospital," and "it can't be cured"—contradicted his platitudes. "Your mother and I think you should come to the hospital for a little while to learn about your condition." I stared at Mom, hoping that she would correct him.
"Sweetheart, we're going to be okay. We'll deal with this," Mom comforted. "Let's go home."
We left the doctor's office through the same doors we'd come in just an hour earlier, but the streets of London looked less exciting to me. From that day on I would share my body, my experiences, and my dreams with diabetes; as I grew, so would diabetes. Although I knew that something terrible had just happened, fifteen years would pass before I fully appreciated the severity of my diagnosis. Of course, "the future" has little meaning to a ten-year-old child, but the permanence of diabetes haunted my mother. My biggest concern was about what would happen at the hospital the following week. I held Mom's hand as we crossed the street to enter the underground station. Somehow our lives had changed. We were on a new road.
We had seen the doctor on Friday. My admission to King's College Hospital at Denmark Hill, just south of London, was scheduled for Monday. Over the weekend my family and I acted as if nothing was out of the ordinary. An elephant was in the room, but no one was talking about it. Mom masked her feelings and kept me busy. On Saturday afternoon she sent us children to the cinema. To this day I can't remember which movie it was, but I do remember sneaking up the dark aisle to the ladies' room three times. I remember stopping at the concession stand each time for a cup of orange squash. And I remember the bag of grapes Mom had given me to soothe my thirst. That weekend we might just as well have been living at the turn of the century when diabetes was not understood. The treatments then were often catalysts for death. Some doctors prescribed bags of sugar, thinking they could replace the sugar that their patients lost in their urine. We thought grapes would ease my thirst and make me feel better. We didn't know that eating sugar without taking insulin could lead to the comatose death that, before the discovery of insulin, had followed in less than a year from the onset of symptoms.
Had I been diagnosed with diabetes fifty years earlier, my parents would have been carrying an emaciated child to a special hospital ward filled with the sickly sweet smell of the wasting bodies of other young diabetics in their death throes. They would have sat with me while I tried to exhale the carbon dioxide that built up in my lungs as my digestive system consumed my muscle and vital organs for energy. In those days, the only one way to slow down the process of dying was with a Draconian starvation diet known as "Allen Therapy," named for Dr. Frederick Allen, the director of the Physiatric Institute in Morristown, New Jersey, and a leading diabetologist of the time. Dr. Allen found that by virtually eliminating his diabetic patients' carbohydrate intake and urging them to consume fats to maintain their vital bodily functions, he was able to delay death. Each morsel of food was weighed and measured as if patients were monitoring their own deaths from starvation. In his book The Discovery of Insulin, William Bliss explains that for a twelve-year-old girl who had diabetes before insulin, "A birthday cake became a hat box covered in pink and white paper with candles on it." Allen therapy was publicly criticized for merely prolonging death, but some diabetics did endure the agony of starvation long enough to be saved by insulin.
One person to survive the diagnosis of diabetes at the beginning of the twentieth century was a fourteen-year-old named Leonard Thompson, who had fasted his way to a death-defying sixty-five pounds. His father took him to the Toronto General Hospital, but the doctors held out no hope for his recovery. As Mr. Thompson watched his son waste away, the attending physician told him about the pancreatic extract that was being developed by doctors Frederick Banting and Charles Best, who would later win the Nobel Prize for medicine for the discovery of insulin. Leonard's out-of-control high blood sugar caused his body to consume stored fat for energy. Ketone bodies (partially burned fatty acids) built up in his blood, leading to ketoacidosis. The ketoacidosis made him vomit continuously, causing dehydration. His stomach knotted in pain, and his breathing was deep and rapid. There was no doubt that Leonard would fall into a coma and die if nothing was done to intervene and, just possibly, the experimental potion the attending physician mentioned, could help. The Thompsons latched onto that shred of hope and on January 11, 1922, Leonard Thompson became the first person to be treated with insulin.
The results were astonishing. Leonard's glucose levels dropped, and his life-threatening ketoacidosis disappeared altogether. As more patients were successfully treated with insulin, it was clear that the new drug could save diabetics from a horrible and certain death. Diabetes, the once quickly fatal disease, had been transformed into a chronic and treatable condition. But for all its benefits, the discovery of insulin is a bittersweet success story because it could not then, and cannot now, replicate the body's natural regulation of glucose; in time it became clear that even with insulin, diabetes leads to a host of secondary diseases.
Not much had changed since the discovery of insulin by the time I was diagnosed in 1970, but my family and I had been spared the fear of imminent death that had been faced by Leonard Thompson and his father. There was never any question in my mind that I would be fine—diabetes, after all, could be managed with insulin. On Sunday, knowing that on Monday I would go to the hospital and get better, we piled into our old Rover car and headed to Luton, a town on the outskirts of London where Mom and Dad had been invited for the afternoon. Blair, Lesley, and I sat in the gardens and ate sandwiches while the grown-ups had a formal lunch inside the stately old mansion. I wanted a drink but I felt like I'd vomit if I had one. My legs felt like lead; I was sleepy and thirsty. Stretching out on the grass, I looked up at the elegant mansion and dreamed of one day being married at just such a place. I'd drift through the gardens in a gauzy summer dress with flowers crowning my head. Lesley would get married there too, I thought, and I'd be her maid of honor, wearing a spring hat and carrying the train of her dress in my elegantly gloved hands. As I dozed in the sun, I lost sense of time, and the afternoon seemed to blend with the night.
When Monday morning came, my parents took me in my dazed and wretched state to the big, gray hospital on Denmark Hill. Dad had arranged to take Blair and Lesley to stay with friends so that Mom could devote herself entirely to me. I smiled as I said good-bye to him, and he hugged me extra tight. As he went to leave, he said, "You can handle it, tiger." Dad always made me feel secure. He did then by downplaying the drama of diabetes and taking the burden of worry upon himself, quietly managing the logistics without ever mentioning the gnawing anxiety of paying for doctors, hospitals, and medicine—indefinitely. But I guessed at his anxiety because I had overheard his tense conversation with our medical insurance provider about preexisting conditions and how my diagnosis had come just two days before his company's new policy went into effect. And yet somehow my forever charming and creative father talked them into providing a private room for me with my own bathroom and television! I felt very important and excited, in spite of my sugar-induced confusion. Dad kissed Mom and told her he'd call us later. I waved good-bye while clicking on the television.
In short order, nurses in crisp, starched uniforms with hats that looked like the Sydney opera house began to hurry in and out of my room with lists of foods, recipes, schedules, and information about medications. They asked us lots of questions that first day. How much did I weigh? How much had I weighed six months earlier? When did my thirst start? Did anyone else in my family have diabetes? How often did I go to the bathroom? What did I eat? How much? When? I was a child, so naturally I had never paid much attention to the processes of living. I ate when I was hungry, I drank when I was thirsty, my clothes were baggy, and I didn't know how much I weighed.
My case was to be managed by Dr. David Pyke, one of Europe's leading diabetologists and world renowned for his epidemiological studies with identical twins. Dr. Pyke entered my room with an entourage of people in white coats and interrupted the interrogation. Immediately I liked this slight, friendly man with the long face, dark brown hair, and lively dark eyes. He looked like a traditional doctor with his white coat and stethoscope. He was young, too, and progressive in his approach to the role I should play in the management of my condition, introducing me to my world of diabetes with a strong emphasis on self-reliance. Dr. Pyke told me that I must learn how to make my own decisions about what to eat and how to manage insulin. "You're in the driver's seat," he said. "Doctors will be there for check-ups and crisis intervention, but you must be your own attending physician."
No more than a minute after Dr. Pyke left the room, a nurse came in with a syringe and my crash course in diabetes management began.
"What's that for?" I asked nervously.
"This is the medicine that you'll be taking twice a day from now on to control your condition," she said matter-of-factly. "It's called insulin."
"That's insulin? Nobody told me that insulin is a shot! Can't I just drink it or take a pill instead?"
"No, I'm afraid not. Insulin is a protein and the acid in your stomach would break it down before it could work." She put her hand on my shoulder and said, "Debbie, this'll get rid of your thirst and make you feel better." I clenched my teeth and squeezed my eyes closed as the nurse deftly injected the insulin into my left arm.
"That wasn't so bad," I said bravely once the danger had passed.
"Good! Because you're going to have to do the next one yourself," she said cheerfully.
"Myself? Stick a needle into myself? I can't. I can't even look!" I protested.
The nurse smiled and left us alone. I talked Mom into walking around the sterile, linoleum corridors to see what was happening on the ward. There was a woman in a green dress pushing a cart of milk and cookies. You'd have thought there was cookie rationing and that the cows had stopped producing milk the way she was carrying on with her lists of who was allowed what. I smiled and chatted pleasantly to the patients and staff we passed in the hallway, but silently I churned over and over what the nurse had said about injections and forever. Breaking my train of thought, the woman pushing the snack cart walked over and asked us to meet her back in my room. A few minutes later she came in with a basket of fruit, bread, cookies, potatoes, a kitchen scale, and a measuring cup.
"That's very nice of you. I'm starving!" I said.
"Oh dear, no," she said, sounding astonished. "You can't have a snack until your glucose level comes down. My name is Miss Wilson, and I'm a dietitian. I'm going to show you how these different foods affect your system, and I'll teach you and your mum about a diet we know of here that will help you to feel better. Let's sit down."
We sat in a row on the bed with me in the middle and Mom and the dietitian on either side. Miss Wilson explained that from then on I would eat breakfast at 7:30 in the morning, lunch at 12:30, and dinner at 6:30, with snacks mid-morning, mid-afternoon, and before bed.
"This is just like Uncle Dick! Mom, he always eats dinner at exactly the same time, no matter what. Uncle Dick eats lemon on his pancakes too. He says syrup makes him sick. He can't eat cake either! Sometimes his shirts go wet with sweat and he starts shaking. Then he says candy makes him better! I have what he has, don't I? I'm going to have to live like him, aren't I?"
"You should see what they had to do before there was insulin! Back then children who had diabetes weren't allowed bread or sweets at all, and they had to eat lots of fats so they wouldn't starve to death."
"We're going to be all right," Mom said quietly, sensing my mounting anxiety.
Miss Wilson went on. "You need to learn the carbohydrate content of all the foods you eat. Every ten grams of carbohydrate is called 'one portion.' You can have four portions at each meal." She held the basket and passed a slice of bread to me, saying, "Two-thirds of this piece of bread is ten grams of carbohydrate, or one portion."
It was like arithmetic. "One piece of bread equals one and a third portions!" I said, my head beginning to twirl with numbers.
"No, not quite. A piece of bread is one and a half portions. Think about it this way. A piece of bread is fifteen grams of carbohydrates; two-thirds of that is ten grams, or one portion. The remaining five grams then is half a portion, right?"
"Oh, okay, I've got it. Sure, a piece of bread is one and a half portions, so a sandwich would have three portions of carbohydrate," I thought out loud.
I listened intently as she held up potatoes, apples, and additional slices of bread. Anyone from the outside world looking in at us sitting on that bed in the clinical white and gray room would have wondered what was so important about measuring and weighing such simple items of food. Yet, as I was to discover, calculating the carbohydrate, protein, and fat content of every meal and snack is a critical part of the diabetes equation.
Shortly after Miss Wilson left the room, another nurse came and asked Mom and me to go with her to the "lab."
"What are we going to do there?" I asked, still counting carbohydrates in my head.
"Well, I'm going to show you how to estimate how much sugar is in your body. You see, the goal is to try to keep your sugar in a normal range; insulin lowers your sugar level, and the carbohydrates and proteins that Miss Wilson was telling you about raise it."
"Really?" I asked hopefully as I roamed through the maze of information, looking for an avenue of escape.
"Yes," she said, heading off down the hallway.
"Wait a minute, I've got it! Eating will make my sugar go up and then insulin will bring it back down. I'll just do without both insulin and carbohydrates until I get better," I announced. "That'll be a whole lot easier."
She stopped and beckoned me to follow her as she said, "Don't be silly; if you don't eat you'll starve to death."
"But if I eat I'll have to take shots, right?"
"Just be thankful diabetes can be managed. Here, we're at the lab," she said as she held the door open like a sentry waiting for me to pass through.
"Pew! What's that smell?" I automatically wrinkled up my nose.
"That's urine. You'll need to collect samples of your urine throughout the day to test for sugar. You'll get used to it."
"You can't be serious!"
"Oh, yes, I'm quite serious. First you'll collect urine in a container like this one," she said holding up a plastic measuring cup. Next, with an eyedropper, you place five drops of urine into a little glass test tube, like this," she explained as she took a small sample of urine out of one of the test tubes in the wooden rack in front of her. "Then we add ten drops of water and place this pill in the mixture. It'll foam up, mind you, and can burn if it gets on your hands, so be careful. You'll need a watch with a second hand to count down sixty seconds. After one minute, hold the tube up against this chart to determine how much sugar there is in your urine. If it bubbles up orange your sugar level is too high, and if it's blue it means it's too low."
"How long will I have to do this for?"
"For the rest of your life, dear."
I felt trapped. "Everything around here is 'for the rest of my life.'" I sighed.
At 6:15 my dinner was brought in on a plastic tray. Just as I reached hungrily to lift the plastic cover off the plate, a nurse came in the door, holding a syringe, to tell me that before I ate I had to inject myself with the insulin. Mom was given an orange to practice the technique of injecting insulin, and I was given my leg. My hands started sweating. The syringe felt slippery between my fingers.
The nurse gave me instructions: "Relax your hands. Push it straight in. It hurts less if you go quickly. Count. One, two, and push. Okay, try again. One, two, and push."
I did. The needle slid into my leg. The more I concentrated on keeping my hands steady, the more they shook. The nurse went on, "Pull the plunger back to check for blood. Good, you're not in a vein. Push the plunger in. You can go faster. Push it all the way. Put your cotton swab next to the needle. Press your skin down and pull the needle out. Pull it straight so you don't bruise. Well done. Now hold your cotton swab on there to stop blood from oozing out." Mom felt faint and needed a glass of water. I felt stunned. "Now you can have your dinner, dear," the nurse said cheerfully.
I lifted the plastic cover and there, in the middle of the plate, were two egg-sized potatoes, a small piece of fish and a spoonful of green beans. For dessert I was given twelve grapes. It didn't look like dinner to me; it looked like portions of carbohydrates, proteins, and fats.
Mom stayed with me until nine that night when the nurses told her to go home and rest. "It's been a long day for you," they said, and so it had. In just one day I had learned how to stick myself with needles and how to count carbohydrates. I had heard about the peak and trough times of various types of insulin and how to test my urine for sugar. "We'll take good care of your daughter while you go home and get some sleep." Both Mom and I were exhausted, but neither one of us slept that night.
This was not the first Mom had known of adversity. She was born in a small mining town in Australia, where her father had taken a job as a geologist after receiving his doctorate in geology from Yale University. When she was nine she moved to Zacatecas, Mexico, where Grandad had accepted an offer to work with an American mining company. Life in mining towns was violent. Mom can still picture the machine guns set up along their driveway, and the night that her best friend's father was stabbed to death during a union dispute. Nonetheless, Mom had seen the romance and adventure in her life and had never lost her natural optimism. She believed that every story, no matter how gloomy or uncertain, should have a happy ending. Much later, Mom told me about the night she left me at the hospital, about how she had been inconsolable. She cried and railed against the enemy she couldn't see, the enemy that had slipped past her protective barriers and now lived in her child. She would have done anything to drain the diabetes from my body and take it on herself. That night she vowed she would find a way to free me of diabetes.
After Mom left for the night, tears of exhaustion and unspent emotion streamed down my face. A sense of panic betrayed the smiles I had worn all day. I wanted to run away from that gray, antiseptic-smelling place and from the disease I didn't want, as if I could leave it there along with my hospital gown. There was an enemy in my body and I was in a strange place with a disease I didn't understand. The nurses spoke with English accents, and their words were foreign: Clinitest, insulin, ketones, hypoglycemia. I tried to look inside myself for answers, but there weren't any. I was ten years old, alone with my diabetes, and somehow I knew that I always would be.
The phone rang beside my bed. It was Dad calling from the south coast, just as he had promised. He told me jokes to make me laugh, as he always could. Dad was the most exciting person in the world to me. I used to love going to the airport in Bermuda to welcome him when he came home from his business trips. Dad was always easy to pick out of the crowd of passengers because he'd be the one carrying some funny souvenir he'd picked up along the way for us. Talking to Dad, and being in the hospital with diabetes, made me remember my birthday two years earlier, and the three-foot-tall piñata he'd brought back from South America for me.
To a child growing up in the tropics where it never snows, a piñata in the form of a snowman, down to its big orange nose and black felt hat, creates its own excitement. But Mom decided also to make it the theme of my birthday party. She baked a fabulous snowman-shaped cake, covered it with white icing and coconut flakes, made a mouth out of licorice, and, of course, the nose was a carrot. My guests and I, all dressed up in our party clothes, wore cheerful paper hats as we sat around the big table Mom had adorned with little baskets of jellybeans and party favors. We ate barbecued hot dogs and hamburgers, and cheered when Mom and Dad walked out with my beautiful snowman cake all ablaze with candles. Everyone sang "Happy Birthday" to me. My face muscles ached from smiling as I blew out the eight little flames that flickered on the striped green and yellow candles. Mom cut each of us a big wedge of the moist, yellow snowman cake with its creamy icing that stuck the layers together; but she gave Tony, one of the little boys who lived farther around the harbor, a bowl of fruit salad. I looked quizzically at Mom and she whispered, "Cake makes Tony sick." Everyone ate with gusto, right down to the last exquisite indulgence of sucking the icing from our fingers—that is, everyone except Tony. He counted each bite of fruit he ate and studiously left the last four grapes.
After lunch we played games: pin the tail on the donkey, Simon says, and musical chairs. All of this led up to the crescendo, breaking open the snowman piñata that Dad had attached to a tree behind the house. Because I was the birthday girl I went first. As I swung wildly in the air, my friends clamored, "My turn, my turn." When my cousin Mark broke the snowman wide open, everyone shrieked with delight and dove for the candies and trinkets lying like treasure at our feet. But not Tony; he just stood on the side watching. I called to him to join us, not to be shy, but he just smiled and shook his head. Another of my friends bellowed, "Tony sticks himself with needles so he can't eat candy or have presents," and someone else chimed in, "When he cheats, he can't eat sweets." Tony looked sad and angry all at once. As I sat in King's College Hospital I finally understood that look I had seen in Tony's eyes.
Mom, I knew, would always worry about my diabetes and would try too hard to manage my problem for me. Blair and Lesley would help me to hide my "secret" from the world; and Dad of course would try even harder to fill my days with fun. But when all was said and done, only I could live the diabetic life I'd inherited.
The doctors had said I'd have no trouble with diabetes once I was more familiar with it, and I too was convinced that once I got used to the insulin injections all would be fine. I knew I was lucky not to have cancer or epilepsy, and I felt ashamed for the "Why me?" I wanted to scream at the world. Yet, with the resilience of a marathoner at the start of a race, my spirits bounced back and, by the next morning, I felt much better. I was less thirsty, and my head felt clearer. For the first morning in a long time I jumped out of bed without feeling like I wanted to sleep all day. All in all, I felt up to the challenge of diabetes and started asking about how soon I could go home.
Some years later, I came across a nurse's reminiscences of the 1920s scene as young diabetic patients like myself waited for their doctor, Dr. Allen, to arrive with some of the first bottles of the then newly discovered insulin. It brought home to me what a truly valuable discovery insulin was:
The mere illusion of new hope cajoled patient after patient into new life. Diabetics who had not been out of bed for weeks began to trail weakly about, clinging to walls and furniture. Big stomachs, skin-and-bone necks, skull-like faces, feeble movements, all ages, both sexes—they looked like an old Flemish painter's depiction of a resurrection after famine. It was a resurrection, a crawling stirring, as of some vague springtime.... My office opened on the big center hallways. I could see them drifting in, silent as the bloated ghosts they looked like. Even to look at one another would have painfully betrayed some of the intolerable hope that had brought them. So they just sat and waited, eyes on the ground.
It was growing dark outside. Nobody had yet seen Doctor Allen.... We all heard his step coming along the covered walk, past the entrance to the main hallways. His wife was with him, her quick tapping pace making a queer rhythm with his. The patients' silence concentrated on that sound. When he appeared through the open doorway, he caught the full beseeching of a hundred pairs of eyes. It stopped him dead. Even now I am sure it was minutes before he spoke to them, his voice curiously mingling concern for his patients with an excitement that he tried his best not to betray.
"I think," he said, "I think we have something for you."
Insulin was not a cure, but it had saved my life. Within a week I was back home and full of energy. My laughter and sense of excitement returned and I felt better than I had in months. My thirst disappeared, and flesh and muscle began again to fill out my gaunt, thin frame; but I had changed, and so had my family. Blair and Lesley asked me about the hospital and about taking injections. Rather than sharing the jumbled, scared thoughts on the tip of my tongue, I answered them with a bravado I didn't feel—a public posture regarding my diabetes that would become as familiar to me as the daily insulin that sustained me. I was, and would remain, embarrassed by diabetes, by testing my urine, by giving myself injections, and, like Tony, by not being allowed candy and cakes.
I had felt scared by the shaky, sweaty headachy episodes of disorientation I had experienced that summer when my sugar levels dropped too low. But instead of sharing this with Blair and Lesley, my two closest allies, I told them, "If I take care of myself, I'll live a normal and healthy life." I steered the conversation away from me and told them about the people I had met in the hospital. How could I explain my visit to the lab with the little glass tubes of urine lining the counter? How could I explain the diet to them when I still wasn't sure I understood it myself? And so I retreated behind a wall of smiles, echoing Mom's words of comfort—Everything will be all right—and I willed myself to believe that it would.
Table of Contents
Foreword by David E. R. Sutherland, M.D., Ph.D.Preface
PART 1: MY STORY
Prologue
1. London
2. School Years
3. A Healthy Diabetic
4. The First Complications
5. Small Patches of Numbness
6. Circling the Drain
7. My Broken Dream
8. The Road Back
9. Diabetes' Last Stand
10. My Cure
PART 2: AN INSULIN-FREE WORLD
Prologue
11. Birth of a Chronic Disease
12. Insulin Therapy
13. Pancreas Transplantation
14. Islet Transplantation
15. The Bird Is in Your Hands
Appendix: Pancreas and Islet
Transplant Centers
Insulin-Free World Foundation