In Mapping Fate, Alice Wexler tells the story of a family at risk for a
hereditary disease, once called Huntington's chorea. That her mother died of the
disease, that her own chance of inheriting it was fifty-fifty, that her sister
and father directed much of the extraordinary biomedical research to find the
gene and a cure, make Wexler's story both astonishingly intimate and
Recording her own emotional odyssey, Wexler sifts through memories, dreams, and
her mother's beloved books and letters to find the personality of the woman
Huntington's stole away. Despite such painful circumstances, Wexler writes with
clarity and depth about mothers and sisters, about the nature of living at risk,
and how her family was alternately driven apart and flung together by this
destiny they could not escape.
In later chapters, she explores how her father, Milton, and sister, Nancy,
developed innovative methods to stir up science. Nancy, like Alice, living at
risk, helped organize the effort that led to the stunning discovery in 1983 of a
genetic marker for Huntington's, decades before most scientists thought possible.
She then spearheaded an international collaborative group that identified the
gene ten years later. While in Venezuela to take family histories from people
with Huntington's on the shores of Lake Maracaibo, Nancy showed the hesitant
community her own biopsy scar. She was not just a doctor trying to help; she was
one of them.
With grace and eloquence, Alice Wexler lifts her story beyond the specifics of
Huntington's to write with a startling universality. It is as if, ultimately,
she writes of all families with secrets and illness, of all mothers who are loved
and longed for, of the reaches and limits of medical science. Mapping
Fate is full of people thrown by chance into living extraordinary lives and
illuminates the self-knowledge and action of which they are capable.
"[Mapping Fate is] made of heartbreak but so full of fascinating information
of every kind that it has the extraordinary power to transcend pain*.This is an
intense, beautiful, serious book. It reminds us that life can be awful, but that
human beings carry the capacity to be heroic beyond measure."
CAROLYN SEE, The Washington Post
"A fabulous read*.a book about love, scientific research, family fights,
duplicity, compassion, courage and pain. It is brilliantly written by one of the
principal characters in this real-life drama. You'll be riveted."
"A valuable primer in medical ethics, human genetics, personal, and even
literary style, Mapping Fate captures both the personal anguish and lifelong
ramifications of a hereditary disease."
BETTYANN KEVLES, Los Angeles Times
"Touching on science, autobiography, social criticism, feminism and more,
this is a lucid and original account of the refusal to submit to fate and the
cost that entails."
AMANDA HELLER, The Boston Sunday Globe
"[Mapping Fate] deserves a wide audience. Readers interested in the
psychological dimensions of illness, especially inherited illness, will find it
riveting*.[It] is an excellent introduction to human genetics."
ROGIN L. ALBIN, M.D., Journal of the American Medical Association