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Diabetes, Sotomayor's Parents and the Memory of the Heart

Parents of children with Type 1 diabetes often experience "chronic sorrow." 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.
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I was diagnosed with Type 1 diabetes in 1962, the same year as Supreme Court Justice Sonya Sotomayor. In her recent memoir, she recounts how she managed the disease herself as a young girl. Her father was an alcoholic and her mother was too frightened to handle tasks like boiling water to sterilize a syringe -- as required back then -- filling it with insulin and then injecting it. Her parents' abdication might make them seem pathetic to those unfamiliar with diabetes, but I sympathize with them.

They were mortified by her diagnosis, which was more frightening back then, when it was assumed that the condition was an automatic ticket to amputated limbs, blindness, kidney failure and early death. Reading about them made me realize the dread and sadness my parents must have felt when diabetes descended on us.

I have told the story of my diagnosis to a succession of therapists and spent a lot of time over the years 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. Our family drove from our small Pennsylvania town to New York City to be with my grandmother. When we arrived at her apartment, my mother and her mother immediately hurtled towards each other, both of them letting loose with wild, high screams before they embraced.

This was the first time I had ever heard loud, passionate expressions of grief, and I was terrified. So I ran away and hid in Sholem's study until my parents came to fetch me. That night, I developed an ear ache and had flu-like symptoms the next day. Soon after the funeral, I was taken to a doctor who tested my blood and found that my sugar levels were dangerously high, and my parents rushed me to a Manhattan hospital, where I received the first of approximately 50,000 insulin injections.

Many people with Type 1 diabetes experience traumatic events shortly before their diagnoses. Researchers don't understand the role of major stress in triggering diabetes, but I have always assumed those mournful screams 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 older brother has described as "a frenzy," determined that I would live a normal, small town life and not consider myself fatally flawed.

These days, there is plenty of online advice available for parents of people with diabetes, and some are lucky enough to have support groups and mentors. My mother was mostly on her own. She educated cafeteria workers and Cub Scout leaders 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, very short list.

Some 51 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 had been sick for several years, and his death was not 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 my diabetes. I had taken it for granted. And while I had been aware of other suffering that had been foisted upon her -- the death of her first husband, a troubled second marriage -- the diabetes had always seemed like my problem, 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, with a different title, in The Insulin Chronicles.

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