A Family Disease

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 with ataxia were disparate. Where Creighton eventually found the right tools to piece together meaning and purpose in her life, her mother resisted accepting the reality of her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother's suicide, Crieghton'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, her narrative highlights the gap between the lived experience of debilitating ailment and the impersonal aims of clinicians, and shows how the stories parents tell themselves about living with a genetic disorder influences how they communicate it to their children.