I was sixteen when I told my mother I didn’t want to die.
I don’t remember much of that time, those two weeks where my body was eating itself alive, desperate for insulin, desperate, ironically, for simple sugars and complex carbohydrates, but I remember that. I remember her face. She tried not to flinch when I said what I said. She tried not to let her terror show. But I know my mother, and I know that when she purses her lips into a thin red line and looks away, as though to find a distraction, she is afraid.
She hugged me tight, using the embrace to hide her expression.
“It’s like nothing sticks,” I said, referring to food and drink. I had been urinating fully every half-hour for the last three days, and I had not eaten in a week. Despite my untreated diabetes reducing my body mass to a skeletal one hundred and eight pounds, I was not hungry. The sugar trapped in my blood told my body I was full, and my body, stupid as it was, believed it, choosing instead to dump the excess sugar into my kidneys and out, uselessly, through my toilet.
My mother already knew what was wrong, that the lab technician handling my bloodwork had called my primary care physician, who had called the pediatric endocrinologist, who then had called my mother.
The rationale was to spare my feelings, I later heard.
The doctors, the nurses, my mother — they did not want to frighten me.
I used to think their sentiment was silly, that they should have just told me then and there, over the phone, while I was at home, sleeping twenty hours a day, my mother and my father and my brother at work and at school. I probably wouldn’t have understood the person on the other end anyway, as delirious as I was. For all I knew, the flu was to blame.
But when my mother drove home early from work to take me to the Emergency Room, having to carry me out like an infant to her still-running sedan, I could see why. As she closed the passenger-side door I finally caught a glimpse of my face in the rear-view, the face of an emaciated teenager who hadn’t shaved in weeks, his hair thick and bushy and wild. He was utterly unrecognizable, even though he was me, with sunken cheeks and yellow skin, with week-old pajamas hanging off his wasting frame like the bed sheets of a Halloween ghost. No parent of any strength would ever want to name an episode like that for her son. No parent would ever want to say its name aloud, the name of the Devil who was killing their child.
For when we name something, when we give something — even suffering, especially suffering — a title, a designation, a nomenclature, we make that something real. We create it, forge it, with nothing more than the flutter of our lips and the exhalation of our breath. And then, like magic, that something, that suffering, becomes permanent. Immutable.
Like a diagnosis, never to be changed again.