Revered Canadian fiction and non-fiction author Clark Blaise takes us on a deeply personal journey into the medical world of inherited diseases in this moving, revelatory memoir--by turns tragic, touching and inspiring--of a father and son, the love that binds them, the dark genetic heritage that may be embedded in family trees, and the hopes and dilemmas of today's latest scientific discoveries.
What do you do when you learn your child has a degenerative disease? When you learn that this disease is hereditary--that, unbeknownst to you, you have carried it your whole life? When you learn you have cursed him or her with a cruel heritage?
This is the situation Clark Blaise and his wife found themselves in when their eldest son, Bart, was diagnosed with MMD, myotonic muscular dystrophy, which affects the muscles, heart, lungs and gastrointestinal system and leads to the loss of the most basic attributes: from walking to, ultimately, thinking.
Blaise sets off on a quest to find the genesis of the disease--a search that takes him deep into his family's past, into the wild and isolated communities of rural Quebec where MMD is particularly common. In intimate interviews with his son--a rare and astoundingly personal case study--we learn through Bart's own voice--as well as Bernard's, Blaise's second son who has inherited juvenile diabetes from his mother's side--what it feels like to live with an inherited illness. In interviews with doctors, scientists and science researchers, we understand the interplay of genetic diseases with family life. And Blaise grapples with the sense of guilt for having passed on a devastating condition to his beloved, brilliant son, asking hard questions about the responsibilities of a parent when the gift of life may be the cruelest gift of all.
CLARK BLAISE is the award-winning author of twenty books of fiction and non-fiction. Born in North Dakota to Canadian parents, he has lived in both Canada and the United States, teaching writing and literature at such famed institutions as Emory, Skidmore, Columbia, NYU and UC Berkeley. He has taught at the Writers' Workshop at the University of Iowa, served as Director of the International Writing Program there, and founded the postgraduate Creative Writing Program at Concordia University, Montreal. Internationally recognized for his contributions as a writer and teacher, Blaise has received an Arts and Letters Award for Literature from the American Academy, and in 2010 was made an Officer of the Order of Canada. He now divides his time between New York and San Francisco with his wife, the American novelist Bharati Mukherjee. The author lives in San Franciso, CA; New York, NY.