Tommy Boyce was my uncle, my father’s brother. Here’s what I know about him:
He had “terrible epilepsy” with “seizures every day.”
He was “blind from birth,” something that was blamed on a “birth injury.”
He “was like a baby all his life.”
He died around age 8? 10? in the early 1950’s? from something related to epilepsy.
That’s all I know.
I found out about Tommy when I was about ten years old. My brother and I were on the floor of my grandmother’s living room, sifting through a box of old photographs. I came across a black-and-white photo of a beautiful boy I had never seen before. There was something…different…about him, but I didn’t know how to put it into words.
“Who is this, Grandma?”
“Oh, that’s just a little boy I used to take care of.”
Grandma was a retired nurse, so that answer rang true.
When I got home, my brother, who already knew about Tommy, must have told my mother what I saw. She sat me down and told me what little she knew about Tommy.
She described my Grandmother’s anguish, the wife of an alcoholic, who would not accept Tommy as his son. She described her devotion to Tommy, the amount of work required to care for him.
She shared a few sweet stories of my father’s relationship with his brother. He would ask their grandma for an extra cookie “for Tommy,” knowing Tommy didn’t eat cookies, and was saving the cookie for himself.
But that’s it. It was never discussed after that, and I didn’t think much about Tommy until that night in the Johns Hopkins emergency room in February of 2011, when I was told infantile spasms, a “catastrophic” form of epilepsy, was suspected as the cause of my Charlie’s strange movements.
“Tommy!” I gasped, as I crumpled to the floor.
Tommy died in childhood, presumably as a result of his epilepsy, but I know very little about the circumstances. I want to change that. I want to shine a light on the stigma of epilepsy and the mystery of SUDEP. I want to explore any possible genetics that tie Tommy’s epilepsy to Charlie’s. I want to tell my grandmother’s story, as it is my story, and the story of so many women throughout the world.
Please join me in my multi-part series as I try to solve the mystery of Tommy’s death.