“Huntington’s disease was first known as Huntington’s chorea, as in choreography, the Greek word for dance. The term chorea describes how people affected with the disorder writhe, twist, and turn in a constant, uncontrollable dancelike motion. It is a hereditary, degenerative brain disorder for which there is no effective treatment or cure.”
–Watching Their Dance, pp. 11
In one life-altering moment, Therese Crutcher-Marin learned that the man she loved and his three beloved sisters were at risk for one of the most devastating genetic diseases: Huntington’s Disease. In Watching Their Dance, Crutcher-Marin recounts her journey of love, uncertainty, loss, and strength in the face of Huntington’s Disease. She tells a vivid and personal story of the experience of loving someone at risk for Huntington’s Disease, meticulously sharing the details of her fears, the symptoms of the disease itself, the care-partner experience, and the loss that inevitably comes with Huntington’s. Thrown into the wildly unsteady and frightening path of Huntington’s, Crutcher-Marin returns repeatedly to the mantra, “nothing is certain in life.”
Crutcher-Marin weaves in details of her personal struggle with uncertainty, a daunting challenge for a woman averse to taking risks. She skillfully captures the awkwardness and difficulty in breaching the subject of Huntington’s with loved ones, and expresses a deeply personal account of her anxiety and suspicion as she worries that she can see the beginning of Huntington’s symptoms in her husband and friends. The book shows the diverse ways in which Huntington’s Disease can manifest itself in daily life to affect both patients and their care partners.
The book reads easily, a captivating and accessible memoir and love story that gently pulls the reader in until one cannot help but care deeply for the characters. The reader follows Crutcher-Marin’s journey as she learns that she could lose John and his sisters to Huntington’s, finds the strength and resolve to stand by them in the face of unpredictability and devastating loss, and ultimately learns to embrace life and uncertainty with unconditional love.
Watching Their Dance offers a wide range of insight into living at risk for Huntington’s, living with Huntington’s, and caring for someone with Huntington’s. It is a worthwhile read for a broad audience: those affected by Huntington’s Disease, those curious about the disease, or those who know nothing of the disease but wish to read a captivating and insightful memoir. Despite the heavy topic of Huntington’s Disease, Crutcher-Marin writes an uplifting and beautiful love story, a meaningful tribute to her sisters-in-law who passed away from Huntington’s. Proceeds from Watching Their Dance are donated to the Huntington’s Disease Society of America (HDSA).