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.
Therese Crutcher-Marin is an advocate for Huntington's Disease, which haunted the family she married into and became catalyst to her own development through adult years as wife, sister-in-law, and mother. Her career in healthcare led to hospice work, and her experiences caring for others led to writing this book. She is now retired, serving on the HDSA Northern California Chapter Board of Directors. She lives in California with her husband, John Marin.
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