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A Family Disease: A Memoir of Multigenerational Ataxia
Paperback
Biographies GeneralMetaphysical GeneralGenetic Conditions
ISBN13: 9781476683188
Publisher: Toplight Books
Published: Jan 25 2021
Pages: 202
Weight: 0.67
Height: 0.47 Width: 6.00 Depth: 9.00
Language: English
Dana Creighton and her mother both were affected by the same inherited cerebellar degeneration, known as ataxia--a loss of control over body movements. Both were treated by a healthcare system that failed them in different ways. Yet their experiences were disparate.
Creighton eventually found the right tools to piece together meaning in her life; her mother resisted accepting her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother's suicide, Creighton's memoir finds striking similarities and differences in their lives and traces a lineage of family trauma.
Drawing on research in neuroplasticity, medical records, personal correspondence and genealogy, the author highlights the gap between the lived experience of a debilitating ailment and the impersonal aims of clinicians. She shows how the stories parents tell themselves about living with a genetic disorder influences how they communicate it to their children.
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