Overview

When I was forty-five years old, I was identified as a person at risk. A sample of my DNA revealed an inherited genetic mutation. Ironically, because I was in excellent health according to all conventional measures of cardiovascular fitness, I was told that the first symptom I would experience would be sudden death—an unforeseeable, instant, and total failure of the system that sustains my heart beat.

I was alone at home when a nurse from the Harvard genetics lab called with the bad news. It was as if the story of my life had been cut in half. That genetic diagnosis suddenly illuminated my past, and it considerably darkened my future.

For the first time in my life, I felt like my father’s son. I was the youngest of nine children, and my father had died—suddenly, inexplicably—when I was three. He was forty-four. We’d understood this as god’s will. We were good Catholics. Years later, one of my brothers died—suddenly, inexplicably—when he was fifty-three. Again, the family diagnosis was god’s will.

I thought I was safe. I was so clearly and singularly identified with my mother’s side of the family in appearance, temperament, and family lore that I believed a long life was my birthright. But when my phone call with that nurse ended, I realized my inherited sense of self was a fiction.

And that’s when I lost control of the story of my life.

As I entered the strange and secretive world of modern medicine, I really thought I was simply choosing to prevent my sudden death. But the medical intervention to prevent my sudden death almost killed me—more than once. Five years, four surgeries, and three implanted devices later, I see that I was effectively adopted by a close-knit family of genetic researchers, clinicians and surgeons, and medical-device manufacturers. I knew I was dependent on them, and I soon learned that they were not entirely dependable. But did I really trust my own version of the story?

I wrote Life with Sudden Death to answer a simple question: Who has the authority to tell the story of your life?