Dance Me to the End: Ten Months and Ten Days with ALS (PDF)

by Alison Acheson

A profoundly honest and intensely personal story of a woman who cares for her husband after the devastating terminal diagnosis of ALS.

Marty, age 57, was given a preliminary diagnosis of ALS by his family doctor. Seven weeks later, the diagnosis was confirmed by a neurologist. Ten months and ten days later, Marty passed away.

From day one, Alison, Marty’s spouse of over twenty-five years, kept a journal as a way to navigate the overwhelming state of her mind and soul. Soon the rawness of her words harmonized to tell the story of Marty’s diagnosis, illness, and decline. Her journal became a chronicle of caregiving as well as an emotional exploration of the tensions between the intuitive and the pragmatic, the logical and illogical, and the all-consuming demands of being both spouse and nurse. Divided into short pieces, some of which reads as free verse, Alison’s words are at times profoundly intense and painfully private.

The composition of the intricate notes of a life in its final movements includes another stanza of the journal that became Dance Me to the End: the guiding of children grappling with the imminent loss of a parent, and the shifting roles of family, friends, and community—all of which add their own complex rhythms.

Dance Me to the End is an evocative memoir about the emotional impact of witnessing a loved one suffer from a neurological, degenerative, and terminal disease. This is a detailed account of grief, shock and pain coexisting with the levity, laughter and love shared with her husband and sons in those final months of Marty’s life.