Childhood diabetes got its 15 minutes of fame when Sonya Sotomayor was nominated to the Supreme Court in 2009. In a host of interviews and a subsequent memoir published in 2011, she recounted how she was forced to manage the disease herself as a young girl. Her father was an alcoholic and her mother was too frightened to handle the burden of keeping her daughter alive. When she was eight, Sotomayor had to boil water to sterilize a syringe –as required back then– fill it with insulin and then inject herself. She had to figure out how to stick to her rigid diet and measure food on her own. Her parents’ abdication might make them seem pathetic to those unfamiliar with diabetes, but I sympathize with them.
Sotomayor and I were both diagnosed in 1962. Reading about her mortified, intimidated parents made me realize the dread and stress my own parents must have felt when the disease descended on us.
I have told the story of my diagnosis to a succession of therapists over the years, and have spent more than a little time trying to fathom its impact on me. But I am embarrassed to confess that I took the time to consider its impact on my parents, especially my mother, only recently.
By all appearances, I was a healthy second-grader when my grandfather Sholem, my mother’s dad, died in a nursing home in the Bronx in January, 1962. When the news came, I accompanied my parents and older brother on a drive from our home town in the Poconos to my grandmother Pearl’s apartment in New York City. I hadn’t known Sholem well. For several years, he had been nearly incapacitated by hardening of the arteries and Alzheimer’s. My grandmother, though, was a bestower of potato latkes with maple syrup, gifts and Yiddish lullabies, and visiting her was usually a treat.
This time, as soon as we arrived at Pearl’s apartment in Morningside Heights, my mother and grandmother immediately hurtled towards each other in the musty living room, letting loose with wild high screams just before they embraced. This was the first time I had ever heard the sounds of raw grief, and I was terrified. So I ran away, down a high-ceilinged hallway, and hid in my grandfather’s study.
Eventually my parents found me and coaxed me out of the study, but the damage, I’m now convinced, had already been done. That evening, I got an ear ache and began to guzzle massive amounts of black cherry soda. The next morning, there was a scratchy throat and more thirst. Two days later, back in Pennsylvania, our family doctor tested my blood and I was rushed to Babies Hospital in Upper Manhattan, where I received the first of approximately 50,000 insuin injections.
Many people with Type 1 diabetes experience traumatic events shortly before their diagnoses, as I’ve pointed out here. Researchers don’t understand the role of major stress in triggering autoimmune diseases, but I have always assumed that the keening sounds from the women I loved were partly responsible, and even now, flashbacks of that 7-year-old boy fleeing from grief still recur sometimes, of their own accord.
When I returned home from the hospital, the main responsibility for managing my moments fell to my mother. She threw herself at the challenge with what my brother has described as “a frenzy,” determined that I would live a normal small town life and not consider myself irredeemably flawed.
These days, there is plenty of online advice available for parents of kids with chronic diseases, and some have support groups and mentors. My mother was mostly on her own. She educated cafeteria workers and Cub Scout leaders and baseball coaches about my condition. She gently coaxed me to test my urine in order to gauge my blood glucose, then record the results in a notebook. She figured out dietary exchanges, measured and weighed carbohydrates and proteins to match my insulin dosage, and — without a diabetic cookbook — somehow incorporated them into meals everyone in the family enjoyed. That’s an incomplete, woefully short list.
More than 50 years later, shortly after reading Sotomayor’s account of her parents, while alone in the kitchen and washing some dishes, I suddenly realized something that literally made me shout: “Idiot! Of course!” It had taken too many decades to notice what should have been obvious, and I talked to myself like a second grade teacher scolding an inattentive student: “She’d just lost her daddy!”
There are different ways to mourn. Perhaps the furious activity and obsessive attention to unfamiliar tasks were healthy for her, easing the burden. Sholem’s death had not been unexpected, but she had been close to him and it was still a terrible blow. Before she had a chance to absorb it, when she should have been sitting shiva, that second blow struck.
It was probably more upsetting than the first one. Parents of children with Type 1 diabetes often experience “chronic sorrow,” according to a study in the Journal of Nursing Studies, and “the data indicate that grief experienced by parents…may not have an endpoint.” But my mother never let on that she had been given a double dose of grief while calmly doling out insulin, counting out precise numbers of grapes for my lunchbox, and driving me to Cub Scouts and Hebrew school.
While I had thanked her for many things over the years, until that moment by the sink it had never occurred to me to feel grateful for her response to the diagnosis. I had taken her help for granted. And while I had been aware of other suffering that had been foisted upon her –the sudden death of my father when she was 39, a troubled second marriage, a Russian novel’s worth of other difficulties — the diabetes had always been my problem, a central part of my narrative, not hers.
“Gratitude,” according to a French proverb, “is the memory of the heart.” I can attest that more than half a century after an event, the memory can come of its accord, and it can linger, with no endpoint.
Originally published, in a different form, in Huffington Post.