HOPES Review (Huntington’s Outreach Project for Education, at Stanford University)
“Huntington’s 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).
GOODREADS REVIEW: This memoir is a compelling story of love, of enormous stress, and of coping. As a young woman, Therese Crutcher-Marin weaves herself into the fabric of the Marin siblings, so different from her own family. Getting tangled in the fibers of Marin lives, she evolves through the paradox of committing without knowing what’s ahead. She grows to accept her own obsessive-compulsive nature as perhaps a plus.
The author began writing to cope with stress. Over the 36 years covered in this memoir, the author copes with her own need to plan and be in control while living with a family haunted by Huntington’s Disease (HD). She married into this family knowing the gamble; then upped the gamble twice by choosing to have two babies, knowing she might be perpetuating the HD nightmare her husband’s mother had succumbed to.
This book honors her three sisters-in-law, each of whom succumbed to HD. She tells their stories as they were unfolded to her, and the reader becomes aware gradually of the strengths and weaknesses of the four siblings. The Marins lived in the moment and did not dwell on what might come. They took care of one another in a way the author had never known with her own siblings and parents. Merging into the Marin mentality was a steep climb, but the author also drew strength from their forgiveness and unconditional love.
The youngest Marin sibling, John, and his three sisters had raised themselves through their mother’s unexplained hospitalization and their father’s frequent absences. Before the author’s marriage, the siblings discovered that the reason for their mother’s demise was a genetic disease: Huntington’s Chorea, as HD was then called. Each of the four could be carrying the same gene. At that time, there was no test, no way to know their fates. The author did know how much she loved John Marin. She committed to living with “not knowing”—to looking at life through a lens very different from her Catholic upbringing.
Huntington’s symptoms typically appear between the ages of 30 and 50. The oldest Marin daughter was the first to succumb, then the second, then the youngest daughter. The disease and suffering manifested differently in each. The author skillfully tells their three stories with compassion and reflection.
When a test for HD was developed, all four siblings refused to take it. They did not want to know, choosing to simply live each day to the fullest. Then the only remaining sibling, John, decided to be tested for the HD gene when his own children married and began planning families. His results were negative.
My recommendation? Read this book as if you were looking into a mirror. You will find metaphors for living in the moment, for dropping the need-to-know, and for valuing differences in others. You will find reflections of your own anxieties and likely come away encouraged to “keep on keeping on” with life. While you will learn a great deal about Huntington’s Disease along the way, this book has much to offer beyond the boundaries of any disease.
by Jazz Jaeschke https://www.goodreads.com/review/show/2094596155
for Story Circle Book Reviews
reviewing books by, for, and about women
KIRKUS REVIEW: A debut memoir focuses on a family wrestling with the genetic legacy of Huntington’s disease.
Crutcher-Marin met her future husband in 1976 while they both attended junior college in California—it took no time for her to be captivated by him. Then, a few weeks before Thanksgiving, John’s three sisters called a meeting and revealed that while visiting an aunt they discovered the family was plagued by Huntington’s disease, a debilitating neurological disorder. John’s mother, Phyllis, and three of her siblings—four out of six overall—suffered from it. The odds that John would eventually come down with it were about 1 in 2, and there was neither a test to definitively diagnose it nor a cure to combat it. When the author met John he was 21 years old, and, generally, the symptoms start to appear between the ages of 30 and 45. Overwhelmed by the prospect that such uncertainty would forever haunt their lives, Crutcher-Marin reluctantly left John, a move encouraged by her own family. She even briefly dated someone else. But she couldn’t bear the separation and eventually returned to his embrace; they wed in 1980 and had a child. But the threat continued to loom over them like a storm cloud, and two of John’s siblings did eventually grapple with, and die from, the terrible affliction. This is a story more about the power of hope than the wages of Huntington’s—a pre-symptomatic test for the disease eventually hit the market, but John refused to take it. As he explained: “I’d rather live my life with the hope I don’t have the mutated gene than find out I do.” Crutcher-Marin writes affectingly about the way her marriage was actually fortified by its precariousness—she learned to love more deeply in the shadow of her husband’s mortality. She also tenderly portrays the plight of his sisters—beleaguered not only by the deadly genetic inheritance, but also difficult childhoods stained by loneliness and abandonment. This is a rare treat—a true story that is as uplifting as it is heartbreaking.
A poignant remembrance of a love forged in crisis.