In the years between early childhood and high adolescence, I spent a lot of time on my bicycle. I loved facing into a breeze with my hair blowing back, pushing off, and standing on the pedals to climb a hill and then sitting for the downward coast. At dusk the neighborhood was quiet and I could hear the adhesive zip of my tires on the road and the click of my gears as I changed them. Around and around I went, mesmerized and free.
There were other pleasures. On a lake, my body rested in the top few inches of water, hands and legs liquid, face turned up to the sky, and mouth sipping the lakey air. Down a white and steep slope I made my way curvily on skis that did what my legs prompted them to. In bed, after a day on the bike or water or snow, consciousness yielded easily to sleep, which was then a friend.
These experiences exemplified what the yoga teacher, writer, and paraplegic Matthew Sanford has called “the childhood love of the body.” It was a body to be enjoyed, not measured, monitored, and worried over. In other words, this was a body before the fall into adulthood, and chronic illness.
It was winter 1992. I was 26 years old. For a few months I had been feeling uncharacteristically gloomy, and I attributed my lack of energy to the New England weather and job frustrations. My mood buoyed a little when I discovered I was pregnant; this was something my husband, Jimmy, and I had wanted. Although the early days of the pregnancy exacerbated my fatigue enough that I was coming home from work at 5:30pm and napping before dinner, I went buoyantly to my first pre-natal appointment. The nurse practitioner took my family medical history and ordered the usual battery of tests, plus a random blood glucose sample after I mentioned my youngest brother’s type 1 diabetes. “Let’s cover the bases,” she explained, waving her hand as though not worried. Neither was I.
Two days later — after a prescribed high carbohydrate breakfast and a trip to my health care center’s lab — I sat in a chair in a waiting room, exerting some inner muscular force to keep myself from shaking with the fear bubbling inside me. I looked at my stockinged knees pressed together, at my watch, at other people reading news and celebrity magazines. My husband sat next to me. Not ready to cry but not wanting to talk, I felt a spreading tightness behind my sternum; I consciously gripped it there. At last the obstetrician entered from some door off to the side, and, although we had never met, she found me and communicated the results of the additional tests. There was glucose in the urine, and something called ketones; they were high. “We’d like you to go home and get a few things and make your way over to the hospital. Can you do that today?” Doctors rarely touch us outside an examination room, and her hand was on my arm. She looked at Jimmy, silently impressing on him the importance of conveying me.
At home I packed quickly and telephoned my mother, whom only two days earlier I had called to announce my pregnancy. The uncharacteristic softness of her voice unhinged me. In the foyer, I stood fixed in my spot crying, making loud wailing noises, and letting Jimmy hold me. By then my brother Brian had been living with type 1 for five years, and I knew about the testing, injections, special diet, and worry. Of the few times I had ever seen my father cry, one time was in the days Brian spent in the hospital after his diagnosis. Now I was worried about myself, and suddenly the pregnancy, still viable inside me, seemed doomed.
Admission to a hospital means “sick,” and the illness label and the treatment protocol signaled to me that I was no longer in good health, which was how I would have described myself just a week earlier. “Sick” is when I was thirteen and had the chicken pox and all the lymph nodes on the back of my neck and around my ears were as big and hard as golf balls. “Sick” is the packed-head sensation of the sinus infection. “Sick” is leaning over the toilet and puking. I was not feeling this kind of sick. My blood sugar was in the 300s — not so high that I was experiencing the thirst, nausea, excessive urination, weight loss, and headaches that other diabetics have itemized as the symptoms they experienced in the weeks before their diagnosis.
Suddenly, though, I had the resources of a major hospital bearing down on me. “This seems to be type 1, and not gestational diabetes,” my new endocrinologist said, “and we’re treating two patients here: you and your baby.” In a few hours, I learned how to collect my urine and use a plastic strip to check it for ketones, prick my finger for blood and test for glucose, and choose foods from the hospital menu that met my goals for carbohydrate, protein, and fat servings for a particular meal, which had been explained to me by a brisk nutritionist. At the end of the first day, a nurse with short red hair and a pine green cardigan over her white dress taught me how to inject insulin, first in an orange and then into my own flesh. The needle, directed by my hand, went in. Mechanically, it was easy; psychologically, it was a feat. So much of what a person with diabetes must do is force herself to act against the body’s desires: to eat when she is not hungry or resist food when she is; to puncture and bleed herself several times each day; and to look beyond food’s appeal and see it for what it really is — not pleasure, but fuel.
On my first night in the hospital, for what would be a week’s stay, I lay in bed and calculated my life expectancy. A work friend, Linda, had died at age 38 after 30 years on insulin, and I used her life with diabetes to project my own. I added 30 to my age and gave myself several extra years for what would surely be better behavior on my part. (Linda had confessed to what she called a misspent youth: “Cake, candy, pizza — I ate it all when I was a teenager.”) Whether optimistic or delusional, I picked 75 years for myself. Why stop at one calculation? Arithmetic was a comfort. I figured the balance of my years remaining:
75 projected years – 26 current years = 49 years
I rounded that to 50, because an even integer makes mental math easier. Next, trying to gauge the scope of the task ahead, I multiplied daily injections by the balance of my years for total lifetime injections:
4 injections x 50 years x 365 days = 73,000 injections
I calculated, too, a lifetime of finger sticks: 6 per day or 109,500 self-inflicted drops of blood over my lifetime.
Proud of this logical approach to terror, I called my math teacher father, who surprisingly advised against multiplication. “Jane, just do one injection, and then the next.” Instead of making small tasks into immense ones, as my imagination had been doing, he advised breaking them down into the smallest possible unit: one. Sometimes trite advice works, and my father’s helped.
All that week, members of my family came and went. Jimmy set up camp in our room and stayed by my side while he tried to keep his work life going by telephone. Emily, my youngest sister, visited and brought her boyfriend Joe; they sat in chairs and ate take-out food. I wondered how two people could sit and eat so… innocently. Did they not know how many carbs, how many fats were on their paper plates? I did. My parents arrived, and from my father’s flatness and mother’s pinched brow I had a sense of how shell-shocked they were by a second child being diagnosed with the same illness. From them I heard news of my other siblings, and I registered it but could not rouse myself to care.
My friend Sybil called me in my room and murmured the soothing words picked up from psychotherapy: “It’s all new and sudden but someday you’ll integrate this into who you are.” Integrate. I clutched this word to me like a talisman. For the rest of that week in the hospital, through the strangeness of nutrition education and the 3 a.m. blood glucose checks and learning how to mix short-acting and long-acting insulin, I frequently reminded myself, “I will get used to this.”
A few months later, after I had established a routine of measuring food portions and testing drops of blood for glucose and drawing up and injecting insulin and urinating on a strip and writing data in a diary and sending faxes to the endocrinologist, my mother said that she had bumped into Ruth, my brother’s diabetes educator, at a local pharmacy, and my mother told her about my new diabetes. Ruth shared some wisdom, which my mother passed along: “When young people – people in their teens or twenties or so – are diagnosed with a chronic illness, they usually experience a period of mourning for their lost good health.” This sentence immediately rang true. Even though I remained pregnant and would eventually give birth to a healthy baby boy, I was dogged by what felt to me like an absence, as though I had left behind a beloved possession in a hotel across the world and continued to yearn for it as I was persistently pricked by a palpable, tantalizing memory of what had been lost. It was here a minute ago. The thing existed out there in the world — in this case the idea of good health — yet I couldn’t get it back. That feeling of gliding or floating through life in a body I merely enjoyed was long gone and a door behind me seemingly shut.
More than 18 years have passed since my diagnosis day; in that time, I’ve injected or bolused insulin at least 26,280 times, and never mind how many units. I’ve pricked my finger and tested my blood almost 40,000 times and counted and eaten more than 900,000 grams of carbohydrates. There have been many moments when the immensity of my task has been so overwhelming that I have stood at my kitchen counter with a syringe or insertion set poised in my uncooperative hand and said to myself, “Jane, just do this one.”
Yet, as Sybil predicted, the illness and my care and feeding of it have become integrated into who I am. Diabetes and I have become even closer than my bicycle and I once were. I try to remind myself that the unselfconsciously useful body of my youth is a myth. Surely, my masterful riding of a bicycle, which I could even do no-handed, took practice, trial and error, a few scrapes, and kinetic awareness. My diabetes, in a way, has demanded the same. And although my good health with diabetes does not feel like flying, it does often feel like a marvel.
Jane Kokernak is a regular contributor to ASweetlife. Read her blog Balancing Acts.