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Philip
Hometown
Richmond, VA
Diagnosed
hATTR amyloidosis in 2019
Started treatment
July 2019
Time to diagnosis
Two years
Family history
Hereditary (Father)

Patient Ambassador

Philip S.

"Every patient is a narrator. The illness wants to take the pen. We don't let it."
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Philip is a novelist. He has published four books, taught at a small college for fifteen years, and once, briefly, had a story optioned by a film studio that never made the movie. He has spent most of his adult life thinking about narrative — who tells the story, who controls it, what gets left out. So when his diagnosis arrived, his first instinct, almost embarrassing in retrospect, was to think: this is going to want to be the narrator now. He decided early that it would not be. He did not stop writing. He did not stop teaching, except for the weeks when treatment made it impossible. He kept a journal — not a polished one, just a notebook on the kitchen table — in which he wrote down what was happening as it happened, in the same matter-of-fact voice he tried to use in his fiction. He says the journal kept the illness from running away with the story. His husband, a painter, kept the household running on the days when Philip could not. His students, who knew only as much as he chose to tell them, were generous in ways that startled him. His editor, a longtime friend, simply pushed his deadline. He learned, he says, that the people around him were better at this than he had given them credit for. Philip has a new book out this fall. It is not about being sick. It is about a man who builds a boat in his backyard, alone, over the course of a long winter. Readers have asked him whether the book is about his illness, and he says it is not, and then, sometimes, he says it is, in the way that everything we make in those years is about whatever we lived through to make it.

Gallery

6 photos