It began with a call in the night. The windows and doors were open, allowing the balmy summer air to sift through the spacious goldenrod rooms from the back porch, through the kitchen, and to the front door. Chicken nuggets were sitting on the stove, and I had just gotten another lukewarm soda out of the garage. You could hear the crickets outside. It was an hour before midnight. I was twelve years old.
Less than a minute after my mother answered, she began crying. She held her hand to her mouth and inhaled stifled breaths as she got up and made her way upstairs, where my father was.I wanted to prepare myself, so I began to race to conclusions. I thought of whom she knew who could have suffered a catastrophe; maybe my grandparents, maybe my aunt, maybe one of her colleagues got into an accident. Whatever it was, it was a disaster. I could not make out the words, but from upstairs I could hear worried voices.
I distinctly remember a movie called ‘The Little Vampire’ playing on television when we got the call, that my younger sister was in her room, and while my mother was on the phone my brother, eight years old, sat on a chair opposite of her.
"What happened?" I asked, approaching him.
My brother, known for his stoicism in even the most hectic of situations, replied with an almost-alien look of alarm. He nodded his head: "I don't know."
June 4, 2004
June 4, 2004, before a dance recital. I remember being complemented on my lithe figure; perfect for dance.
I was standing in the kitchen, waiting for a death announcement, some sort of explanation. My concerned brother ran upstairs, while my father came down. He stood in a doorway between his office and the kitchen, where I stood in front of the stove, leaning on island counter, bracing myself for a funeral announcement.
“Who was that?” I asked.
I had never seen my father look so shaken, and stood before me as if preparing to catch my fall.
“Children’s hospital... “
Two weeks before, I had gone in for what my parents amounted to a ‘blood test’, much to my chagrin. For about a month, I had been consuming food and water as if it were air. Initially, it was thought to be a growth spurt, yet I had only lost weight. I thought of myself, humorously, as a monster.
My father combed his hands through his hair in a usual gesture of worry. “Your blood sugar was 645.”
“Is that good or bad?”
“Not good,” he said. “You need to go to the hospital.”
I don’t remember what happened next, but I do remember sitting opposite the door of the oven, staring into my reflection in its dark window. I stared into my gaunt, pale face, my empty eyes. I hoped against hope that this was all a grand mistake, that my blood work could have been mixed up with that of someone else, or somehow exposed in a strange way to make the glucose level so high.
I was twelve, and I couldn’t imagine my comfortable life being turned upside down by any sort of serious illness. I was almost a teenager, I was supposed to feel irrationally invincible.
Even when my mother was driving me over to Children’s Hospital of Wisconsin, I half expected another phone call to come. We would turn back around and continue our lives as if this nightmare had never happened. During the two hour drive, I almost fell asleep, wondering what scenarios were happening in the cars driving alongside us.
I was told we arrived at the hospital at around 1:00 in the morning. I was so tired, I didn’t remember much beyond that.
The next morning, I awoke in a comfortable bed with an IV in my wrist. The room was painted sky blue, my favorite color, and the white gossamer drapes gave the impression of a seaside palette. The light from the windows indicated fair weather. The contrast between the serene setting and my harsh reality was jarring. I was twelve, in the hospital.
I still tried to convince myself I was dreaming; hoping that whatever deity sat in the sky wouldn’t be so cruel as to inflict this upon me, who already was dealing with another slew of problems with school, friends, and family.
And yet, I was diagnosed with type 1 juvenile diabetes on June 25, 2004.
I knew, on that day, that my life would never be the same. In a sense, the phone call was a kind of funeral announcement; my idea of myself, my plans for the future, the way I would live my life, was dead.
Type 1 juvenile diabetes is a condition caused by an autoimmune response which destroys all the insulin-producing cells in the pancreas, resulting in the body being incapable of processing sugar and other nutrients. For unknown reasons, diagnosis is frequent in young people between the ages of 10 and 20. Some are even born with it, and some aren’t diagnosed until they’re in their thirties.
Less than a hundred years ago, those who suffered from juvenile diabetes faced a tragic, inevitable fate. Over the course of a few months, they would grow more hungry and thirsty than they had ever been. Unable to produce the hormone which would break down the sugar in their bloodstream, they would become alarmingly thin and lanky as their bodies turned to fat as a means to feed itself.
With a full stomach, most died of malnutrition.
I have seen old photos of children at the age of my diagnosis starving on a hospital bed, staring listlessly into the sky as a nun duteously sat by, their only company in their final hours.
Though I knew the hospital was populated with patients whose conditions were undoubtedly worse than mine, on the morning of June 26, 2004, I sat on my hospital bed, feeling shocked, numb, and in a spiritual sense, betrayed.
Meanwhile, a rotating cast of nurses, doctors, and relatives poured in to give their condolences.
“How are you feeling?”
“Are you okay?”
“You’re so brave.”
My sister brought me a stuffed animal monkey from the gift shop, with a confident purple face, long blue body and BRAVE emblazoned across its belly.
I didn’t feel brave. Sitting in bed, quietly suppressing a rising sense of panic, passively accepting one’s fate is not being brave. Bravery requires some form of agency, and while I stayed in the hospital, acts of agency were simply not practical or pertinent to my continued health. I could do nothing but accept.
I wasn’t facing death, but imagining the rest of my life was suddenly impossible. At that age, I wanted to be a rainforest biologist, a paleontologist, or a jet pilot, all of which implied extended periods of time completely cut off from civilization. I wanted to be an adventurer, in need of no one but her wits and a healthy body. It didn’t take long before I realized these dreams would be difficult while trying to maintain my health.
I remember the situation as tangibly surreal. I let the world pass by me, one insignificant human being who happened to be at the center of a crisis. I appreciated the nurses who came in and out of my room with the façade of a friendly smile; removing my IV, testing my blood sugar, injecting insulin into my body; but despite the hospitality I was given I was overwhelmed by a growing feeling helplessness. I felt like an object, to be acted upon, but had most lost emotional incentive to assert myself.
After my period of incessant hunger, however, I did want to know for which foods required an insulin injection. As a first proactive step in managing my diabetes, I listed off foods I practically inhaled during the past two months, when my body was convinced it was starving:
“Does pasta have carbs?” I asked. “Does soup? Fruit? Ice cream? Bread?”
The answer to all of these questions was yes. A shot of insulin would be required for each, to be measured out according to consumption. I was expected to do this myself.
Anyone with a chronic illness knows that if you plan to live with it, a lot of education is involved.
As many fad dieters may know, carbohydrates are a saccharide (sugar) which provides both energy and structural components to cells, as well as being an abundant source of calories. There are two kinds of carbs, complex and simple, each with different health effects. Complex carbs, in the form of bread, pasta, and other starchy foods, are an essential part of a normal diet. Simple carbs, from candy, sugar, and to a lesser extent, fruit, are the kind loathed by diabetics and health professionals everywhere.
Institute of Medicine suggests that Americans get about half of their body energy from carbs, and the World Health Organization advises that national dietary guidelines of adhere to deriving over fifty percent energy from complex carbohydrates.
In the months after I had been diagnosed, doctors and medical professionals spammed my family about various programs we could use to alleviate our anxieties about the intimidating future ahead of us. One of these, sponsored by Children’s Hospital, promised to teach us everything we would need to know about living with diabetes, and how to cope with its complications. We had to attend four hour sessions for four weeks, after which we could receive consultation and participate in other programs dedicated to assisting recently-diagnosed diabetics.
When my mother and I first entered the sessions, a cast of characters filled the two person tables pointed towards the front of the room, where a nurse practitioner was already giving an introduction.
I remember distinctly three people my age: a small and tired-looking boy in a black hoodie featuring some topical music group of the day; a plump and well-dressed older teenage African-American girl, and a young blonde man with glasses who seemed fit to teach a lecture. I could tell by looking that I was the youngest one in the room. We went around and briefly introduced ourselves, how recently we were diagnosed, and how old we were. Most of them were teenagers, at least two about to enter college.
My mother and I sat at a table near the back, which happened to be between these three people and their parents, and quietly commented to each other as we grew more impatient. I don’t think I had ever been in a situation where the personality similarities I have to my mother were so evident. When we were told that diabetic needles weren’t allowed on planes, she interrupted to ask how on earth someone could hijack a plane with nothing more than a syringe. She mimicked the scenario:
“They would have to be like ‘hold still!” She made a small stabbing motion.
I may have been the only person genuinely laughing in the room, but it was a relief to make light of something which had so rudely interrupted our lives.
Two Years After
I grew tall, and my cheeks began to fill in.
When I think about my disease, I still think in terms of how it limits me. Lately, there have been many topical movies and books about the apocalypse, whose survivors are somehow able to overcome the collapse of civilization around them. Some people, especially college students, even seem excited by the prospect, explaining to me detail by detail how they would survive various forms of inhuman invasion.
Me? Well, in a scenario where human civilization crumbles, I would be amongst the most likely to die. Without insulin or regular access to food, my intelligence, reflexes, and athleticism would be so impaired that my chances of dying of violent causes would be more likely than eventually dying because of any lack of medical supplies.
The years following my diagnosis were a test of survival, and not one I passed eloquently. I saw countless doctors and endured more lectures than I can remember emphasizing the 'proper' way to care for one's diabetes, which mostly involved recording, calculating, and tracking every blood sugar number, carbs per meal, units of insulin taken, and what time. I didn't even keep track of assignments in my school's planner.
Before doctor’s visits, I would try to fill out my number booklet with fake numbers, which would later be betrayed by a blood test. You must write down everything, as your life depends upon it, the doctor would say with a raised voice.
“If you don't do it, it's like driving a car with your eyes closed.”
I remember being offended by this statement. My inability to keep track of my health would be a danger only to myself, and certainly not other people.
The average juvenile diabetic has a lifespan fifteen years less than the average healthy person. This was something I learned in the sessions, when they discussed the eventual consequences of fluctuating blood sugars. If you were really bad at taking care of yourself eventually your fingers, toes, limbs, eyes, and mind would slip away. When imagining this, I thought of the kind of limbless dummy whom nurses in training would practice breathing life into. I thought it a good metaphor because no matter how hard they may try, that dummy will never come to life.
Fed up with my lack of concern, eventually my doctors gave up the tactic of threatening me with horrible visions of a life spent in a hospital bed. Maybe that was a tactic in and of itself to get me to be more responsible with my health.
The worst period of my health was through high school, when I frequently missed injections, ate too much, and deliberately missed checking my blood sugar out of fear of the result. By the time I graduated, I gained weight because of my insulin-saturated health regimen. I didn’t know what future to expect, and as my self-esteem plummeted, I imagined a life cut short by something as stupid as an accident.
And yet, I survived.
Independence is a hard thing to achieve, and this is especially true if you're living with a chronic illness. Sometimes I wonder if the term ‘juvenile’ leads to a kind of infantilizing of diabetics of the type. After years of being told I was on a path to destruction, eventually I lost the will to care.
My doctors and relatives braced themselves in the months before I graduated high school. Whereas high school seemed bookmarked with choices I regret, the independence I was expected to have in college seemed like an invitation to disaster.
It turns out, that independence was exactly what I needed.
As soon as I entered college, I found new friends, new teachers, new people in my life who would listen and understand rather than chastise and lecture. I gained self-confidence most people would have never guessed I had.
As I took on challenging classes, greater course loads, and multiple majors, I could see and feel myself transform into a new person. The experience was like coming up for fresh air after being held underwater.
While I still struggle with recording everything, I no longer miss an insulin shot, I compensate my blood sugars, and consult doctors before trying a new treatment. In about a week, I am going to test a new insulin pump for the first time.
Despite all the difficulty it's given me, diabetes has allowed me to recognize viscerally that most individuals are facing more struggle than they would ever tell. It has afforded me a kind of empathy that allows me to take people at their word when they describe their problems, invisible to the naked eye.
The photo on the cover of this story is that of a beach in Au Train, Michigan; a captured moment from a solo road trip I was told was a crazy idea. How could I keep the insulin in good condition? How would I ever budget my meals, or book a hotel? How could I take care of myself in an unknown place?”
It turns out, the explorer in me never died; she was only reborn.
This past semester, I wrote a piece called "Steps to Coping with your chronic Illness." This was the final instruction:
"Take a step forward, ignore your scars, throw yourself out into the light of day. Look at the pads of your fingers, filled with pock marks from testing, and feel proud. Learn the rhythm of your new life. Exercise, embrace, enjoy; buy yourself moments of sheer freedom, and let heavenly bliss wash over you when you exert power over your treacherous body. Know that if you play your cards right you will live to use the technology which will free you of this demon, that you can will force your body into that frame of time. Remember, as far as you know, this life is the only one you’ll live."