I was diagnosed with juvenile diabetes when I was ten years old. I got called to the Principal’s Office right before lunch. Mrs. Clark, the school secretary, told me that Mom was coming by to take me to the doctor. As Mrs. Clark finished speaking, I saw my mother’s car pull up outside the school. When I got into the car I could tell that Mom was upset. Her lips were stiff, and she avoided looking at me. She didn’t smile. “We have to go see Dr. Davis,” she said. “He thinks you have diabetes.”
This was bad news. Alice August, a girl in my fifth-grade class, had diabetes, and she was a mess. Her hair was stringy, she dressed in knit pants that were too tight and a not-quite-matching top that was too short, so her belly hung out. She was kind of slow, had no friends, and was generally considered weird. Was this what diabetes would do to me? I didn’t dare ask, because I could see that Mom was wound tighter than a yo-yo.
I liked Dr. Davis. He always paid attention to me, and from the examining table I could look at the top of his bald head where the skin peeled from a sunburn he often got playing golf. He had a soothing voice, from North Carolina, and when he smiled his big teeth flashed at me. I always had the sense that he liked me more than he liked my mother.
I didn’t have to change out of my school clothes at this appointment. He got me to stand on the scale, and wrote down my weight with a serious look on his face. He asked me how I was feeling. “Okay,” I said. “Hungry. I haven’t had lunch.” “Have you been going to the bathroom a lot?" I shrugged. “Are you thirsty?” “Yeah, I’d like some water.” He and my mother exchanged glances. “We’ll get you to give us a urine sample and Mrs. Rollins will get you a glass of water,” he said, going to the door to call the nurse.
When I came back, Mom looked like she had cried. Dr. Davis spoke to me. “You have diabetes, Elizabeth. Do you know anything about diabetes?” I looked away from him. “Alice August in my class has diabetes.” Dr. David paused briefly. “Yes, she does,” he said. “I’m afraid of being like Alice August,” I said, and began to cry. Dr. Davis smiled at me and put his hand on my shoulder. “There's no comparison. You’re not ever going to be like Alice August,” he assured me.
In the early ‘70s, a child newly-diagnosed with diabetes was sent to the hospital for a week: to learn how to inject herself and get stabilized on insulin, and to learn the basic protocol of diet, testing for sugar in the urine, and treating low blood sugar. I don’t remember much of that, just a few details: a mean nurse who laughed at me when I asked for ginger ale like my roommate had. “You can’t have that,” she said. “You have diabetes.” She brought me some diet ginger ale eventually, but it wasn’t until Dad came to visit that night and explained that ginger ale had a lot of extra sugar in it, and that I was going to have to learn to avoid food with extra sugar, that I had any idea what diabetes meant.
I remember I was taught to use a syringe by being given a navel orange to pierce with a syringe needle. Over and over and over again, I injected that tough-skinned orange with water from an old insulin bottle. By the time they had me inject myself, I was prepared to pierce the hide of a rhinoceros. I have never had difficulty injecting myself, so perhaps it was good training. I laugh now to think of that orange, though: the needle on a syringe now is so thin and so short that it would bend and break off before it would pierce a navel orange.
My third memory is of a very beautiful young nurse finding me crying in bed one afternoon. When she asked what was wrong, I told her I was afraid of how other kids would treat me when I went back to school. When she asked why I was afraid of that, I told her about Alice August. She listened quietly, and then said, “It’s hard to have something different, like diabetes. But being different in one way doesn’t mean that you’re different in all ways. You’re still you. Sharing something with Alice doesn’t mean that you’re just like Alice. It just means you both have diabetes, like you and I have brown hair.” I liked the thought of being pretty like her, and I understood that I might share something, but not everything, with Alice.
When I went back to school, a week after diagnosis, my mother told my teacher that I didn’t want everybody to know that I had diabetes. In retrospect I think Miss Orne was probably quite taken aback. It was such a great teaching moment for fifth-graders! They could learn a bit of science and health, they could offer sensitive Elizabeth some friendly support, and poor Alice August could have a bit of vicarious self-esteem-building too. But since I wanted to keep things quiet, Miss Orne was left making a presentation to the class about glucose testing. She had bought a package of urine test strips for us to use to test the glucose in water (none) and ginger ale (a lot), and had hoped to give me a chance to talk about my experiences testing at home. But I had already begun to treat diabetes as a secret, and didn’t break the taboo until I was in graduate school 14 years later. My illness was on a strictly need-to-know basis: once at Molly Blake’s slumber party in junior high, I had such low blood sugar in the night that I had a seizure. (Poor Mrs. Blake!) And at chorus rehearsal one time in high school, I had to ask Alice August if I could have some of the orange juice she carried with her everywhere, and everyone looked at me like I was crazy. She gave me some, but with a look that filled me with shame for avoiding her.
In grad school, I almost died from hypoglycemia, which led to changes in my treatment and in my attitude toward diabetes management. But that was after I had learned that low blood sugar during a math test could make me fail; and that other people got scared when I passed out; and which things people presumed I shouldn't, and therefore wouldn’t, ever eat; and that if I did eat them anyway it was shameful. I learned I mustn’t complain about taking shots, or cry when my blood sugar was low, and I learned that I wasn’t allowed to do everything I wanted to do—I couldn't go to an overnight leadership program in high school, nor go to Africa with the Peace Corps after college—because I might get sick. I learned that I could in fact have children when Dr. Davis told Mom that the recommendations about child-bearing in women with juvenile diabetes had changed. But because I had never known I couldn’t have children, I wasn’t inordinately pleased to learn that now I could.
Mostly I learned that it was my responsibility to manage all the things that diabetes presented, and to do so quietly, calmly, and competently. No one ever said that to me directly, of course. But I knew that to behave otherwise—to make a fuss, to eat and drink forbidden things, to not test my sugar, or to forget my insulin—would cause problems for other people, and make me unattractive and unlikeable. Just like Alice August.
In a future post, I’ll write about how I eventually learned to adapt more maturely to diabetes. As I continue to adjust now, in middle age, I remember with compassion the girl I was, whose initial reaction to diagnosis of a chronic illness was anxiety about becoming unpopular.