Dread
My new book will be published August 19, 2024, the day before my eightieth birthday. The title: My Father’s ALS: a Son’s Healing Journey.
It tells the story of the death of my father, Sam Kann, from amyotrophic lateral sclerosis. And it tells the story of my own coming of age, at age 37, helping my father live and die with ALS. I’ve had many years to think about these two life stories and how they fit together.
My father was a proud, self-reliant man. The child of a Chicago East European Jewish immigrant family, my father grew up showing his parents how to navigate American life, and he continued to show the way to family and friends throughout his life in the Depression and the postwar prosperity. But, as he approached retirement at 65 in 1979, over a period of 15 months he transformed from good health, working, traveling, and golfing to become a quadriplegic. During that 15 months he became dependent on others for everything, even to scratch an itch. ALS also attacked Dad’s ability to eat, speak, and breathe. It was relentless and it was devastating, with no cure and no hope. A friend described ALS as “a dread disease,” an apt description I learned, now the title of my book’s prologue.
When my father was diagnosed with ALS in 1979, I was living in Oakland, California with a new Ph.D. I had rejected a career as a history professor to work on two books about left-wing Jewish chicken ranchers. Yes, that’s “left wing Jewish chicken ranchers.” I was planning to invent my own new career as a free-lance historian. In the spirit of the sixties youth revolt, my own formative decade, I was confident I could do anything, until my father’s ALS diagnosis.
There is a picture of Dad and me a few years before the ALS diagnosis, along the California coast where I was living and beginning my life as a free-lance historian. In those days, the family worries were about me and my puzzling future.
That diagnosis, along with my father’s tears over the impending end of his life, shocked me into realizing that my life too would transform with his ALS. I found myself waking in the middle of the night worrying that at 36 I still was on the margins, like a Berkeley hippie. I had no wife or children, no home, no job, no savings or just a regular income. I still was battling with Dad over the little things, most recently my travel suitcase wrapped in twine to hold together its battered zipper and contents, a condition that infuriated him. We had gone silent over the big stuff like my free-wheeling hippie radical life in the Bay Area.
Within days after the diagnosis, I realized that I was not ready for Dad to die. I had to go home. That is where My Father’s ALS begins.