November 23,2009
New York Times
Thinking About Diabetes With Every Bite By Cathernie Price
When I look at food, I don’t see food. I see sugar — in the form of carbohydrates — plotted on a multidimensional graph with proteins and fat and serving sizes and sickness and exercise and times of day. Catherine Price
I didn’t always do this. Before I received the diagnosis that I had Type 1 diabetes, I saw food as food, and ate it as such — simply, casually, with no real thought attached.
The winter of my senior year of college, after a bad cold and painful breakup, I began eating more — not to cope, but to feel full. I was hungry, always hungry. Hungry and thirsty and tired, piling my tray in the dining hall with pasta, cheese, dessert, getting up in the middle of the night to slurp water from my dorm’s bathroom faucet.
I gorged myself and yet my pants were looser, my arms thinner, my stomach flatter. One afternoon I threw it all up, convinced I had food poisoning. My stomach eventually settled, but my mind did not. The world swirled. I couldn’t stand without stumbling. On Feb. 17, 2001, I entered the hospital, and since that day, food has never been the same.
To live with Type 1 diabetes means to be aware, constantly aware, of insulin — a hormone produced in the pancreas that unlocks your cells so they can use the energy in your food, which circulates in your blood as glucose. A healthy person’s pancreas pumps out insulin in exact, perfect doses, masterfully managing the level of available glucose so that it never rises too high, which could lead to complications, or too low, which could kill you on the spot.
My pancreas, however, doesn’t make insulin. It can’t. For reasons no one can fully explain, my own immune system killed off the cells that produce it. That’s what Type 1 diabetes is — an autoimmune disease in which your body turns against itself. It’s frequently confused with the more prevalent form of diabetes, known as Type 2, but the diseases are not the same. Unlike Type 2, Type 1 diabetes can’t be prevented or managed with diet, exercise or oral medications. Instead, it requires artificial insulin — through injections, not pills — to stay alive. Before insulin was discovered in 1922, Type 1 diabetes was a terminal disease.
Today, artificial insulin means that a Type 1 diagnosis is not a death sentence. But living with diabetes takes much more than simply giving yourself shots. It requires constant, unwavering attention to your meals, lifestyle and medication — and even the most conscientious person with diabetes will never achieve the balance that a healthy pancreas effortlessly maintains. If I take too much insulin, my blood sugar will drop too low; my body will sweat and tremble; I will become anxious, irritable and confused. If I don’t quickly eat something to give my body the glucose it needs — or, worse, if it’s the middle of the night and I am too deeply asleep to notice the warnings — I could lapse into seizures and unconsciousness and never wake up.
It would be easier to keep my blood sugar a little too high, to coast comfortably above the turbulence of tight control. But doing so would mean ignoring the destruction caused by high sugar levels — slower than a seizure, but devastating nonetheless: the capillaries in my eyes bursting from too much glucose, the tiny vessels in my kidneys overwhelmed by sweetness, the nerves in my feet losing their ability to feel.
Instead I calculate constantly, measuring my food’s potential effect on my blood against my desire to eat it, trying to walk a Goldilocks tightrope where my sugar is not too low, but also not too high. My blood sugar’s reaction to food depends on far more than the food itself. If I exercise before or after eating, it is different. If it’s the morning, it is different. If I have my period, it is different. If I am tired or stressed or sick, it is different.
From the outside, diabetes is invisible. Look closer, though, and my fingertips are calloused where I prick them to test my blood sugar 10, 12 times a day. A bulge in my pocket reveals my insulin pump, a machine connected to me by a tube that, in giving me insulin, keeps me alive; scars from its insertion sites pepper my hips. My pump means fewer injections, but it has no brain — I still decide how much insulin to take. Instead, it is a literal tether, its plastic stint in my side a reminder, as I sleep with it, exercise with it, and go to dinner with it tucked in my bra, that I have a disease, that there is something wrong. Diabetes’s subtlety is both a blessing and a curse, saving me from stares and pity but keeping the difficulty of the disease — and its severity — hidden as well.
I hate it, diabetes — wish I could take a vacation from it, eat a slice of bread without calculating carbohydrates or have dinner with friends without fear. But I can’t. So instead I try to flip things around, to use the challenges of diabetes as an inspiration to live as fully as I would if I didn’t have it — if not more so.
One of the best decisions I ever made was to participate in a clinical study for a new experimental drug as soon as I learned my diagnosis; I encourage everyone to do the same. As my endocrinologist, himself a Type 1 diabetic, explained to me, “We need just about every single newly diagnosed person to get involved in a trial. It’s the only way things won’t be the same in five years.” You can find a clinical trial for Type 1 through the Juvenile Diabetes Research Foundation, the National Institute of Diabetes and Digestive and Kidney Diseases, the Immune Tolerance Network or ClinicalTrials.gov.
I have also started writing for a diabetes Web site called A Sweet Life in hopes that, by sharing my own experiences with Type 1, I can help other people feel less alone. But there is plenty about my life that has nothing to do with having Type 1, like co-authoring a cookbook and writing a parody travel guide. My most recent non-diabetic adventure was to join a no-audition hip hop dance group.
Living with Type 1 is an exercise in measurements and judgments and willpower and constant self-restraint. For me, the most difficult part is accepting that I will never be perfect; I will always have bad days and, perhaps worse, there is no way for me to “win.” Like everyone with Type 1 diabetes, I will have to keep at it — every day, every hour, until we finally figure out a cure.
The best I can do in the meantime is to control my disease without allowing it to control me, and to not let the autoimmune attack on my pancreas develop into an emotional attack on myself.
And, of course, to dream of a day when I can once again think of food as food — simple, enjoyable, with no strings attached.
Catherine Price is an Oakland, Calif., freelance writer whose work has appeared in “The Best American Science Writing 2009,” Popular Science and The New York Times. She is the author of “101 Places Not to See Before You Die,” to be published in 2010 by Harper Paperbacks.
