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Formats
Open Ebook Ebook Details
  • 04/2017
  • 9780998442228
  • 312 pages
  • $9.99
Paperback Book Details
  • 03/2017
  • 9780998442204
  • 312 pages
  • $16.99
Watching Their Dance: Three Sisters, a Genetic Disease and Marrying Into a Family at Risk for Huntington's
Would you marry the man you adored if you knew he had a chance of inheriting one of the cruelest diseases on earth? Therese Crutcher is not a risk taker. Through meticulous planning, she eliminates as much uncertainty from her life as she can. Yet during her senior year of college, blithely planning to marry her beloved John Marin, she is suddenly thrown into turmoil when John’s sisters announce they finally know what killed their mother, institutionalized when her four children were all under ten. Phyllis had Huntington’s disease, an inherited neurological disease with horrible odds: John and his three older sisters have a fifty-percent chance of inheriting this terrible wasting disease, which slowly kills the brain cells that affect movement and cognition. There is still no treatment or cure. John says, “You never know what will happen in life,” but his at-risk status shakes Therese to the core. How can she live with such uncertainty? Eventually, Therese decides to marry the man she loves. All four Marins choose to ignore what they cannot change; and in the early years, John and his sisters—a big part of Therese’s life— remain healthy, fun-loving, and as close as ever. Therese takes another big gamble and has a child, and then another. When she observes symptoms in Lora, the oldest sister, Therese fears that Huntington’s has found her. And when Marcia, the gentle middle sister, is diagnosed with the disease, Therese—with two small children, a career, and a husband now in the prime age range to show symptoms—struggles against the demons that feed her fear. After Lora dies, Therese feels unprepared to support her family should the unthinkable occur, so she earns a master’s in healthcare administration and begins a new career. When Marcia’s symptoms worsen, John moves her nearby, and Therese lovingly oversees her care. Several years later, Cindy, the youngest, most athletic sister, also develops Huntington’s, and Therese does the same, feeling that managing the care of these loved ones is a privilege and the greatest gift she can give them. Thus unfolds a life filled with unpredictability, tough choices, and pain, and yet full of love, good times, and great joy. Therese comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. She has learned to overlook shortcomings and to compromise, to let go of anger when she can’t control a situation, to find joy in the simple things. Life is just too precious to waste a moment on small stuff. And though John’s sisters leave this world far too soon, the Marin siblings, she realizes, have taught her about embracing life, forgiveness, and unconditional love.
Reviews
Goodreads

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
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. 

News
03/06/2018
Free Gift With Purchase of Book

Purchase the book on my Author Website, and I'll send you a dozen "Help Fight HD" wristbands and bookmarks.  

Formats
Open Ebook Ebook Details
  • 04/2017
  • 9780998442228
  • 312 pages
  • $9.99
Paperback Book Details
  • 03/2017
  • 9780998442204
  • 312 pages
  • $16.99

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