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A Love Story

A Love Story

Kirkus Review-“Watching Their Dance”

A debut memoir focuses on a family wrestling with the genetic legacy of Huntington’s disease.

1976

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.      

kirkusreviews.com    Amazon Author Central website    http://amazon.com/author/theresecrutchermarin

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.   100% of the proceeds from Therese’s book is being donated to Huntington’s Disease organizations around the world. 

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A Love Story, Family

Excerpt from “Watching Their Dance”

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’sChapter 17……………….

“On March 1, 1986, Big John drove his daughter to University of  California San Francisco Medical Center.  I’d been worrying about the Marin siblings for eight years, though it felt more like fifty, and many times I’d just wanted to flee.  This was one of them.  I dreamed of escaping with John and Keith into a world that had no illness, no genetic disease, where we could live happily ever after.  But that was a fairy tale.  The reality was–and I had no doubt–that Marcia had HD.  My fear was almost consuming me, but, of course, it was nothing compared to what Marcia must have been feeling.  UCSF Huntington’s Clinic

The neurologists at the medical center had a rating system, which they used clinically and in research, to evaluate a patient’s motor, cognitive, behavioral, and functional abilities on a scale from zero to four, four being the most severe dysfunction.  Marcia would be evaluated in fifteen areas, among them gait, tandem walking, rigidity in arms, tongue protrusion, and ocular pursuit.  

John called that evening to find out how it went, but she didn’t say much, only that the doctors would call with the results in three weeks.  He tried to be upbeat, but you could tell it was a hard conversation.  Even Big John was at a loss for words. Once again, I wished with all my heart that I could simply stop time, so that no more cells in Marcia and Lora’s brains would die and they wouldn’t have to experience any more pain or sorrow.  And that way, HD could never find my love.”

We can never lose HOPE………..Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

A Love Story

A Precarious Life

The Kirkus reviewer of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s,  wrote the following regarding my book.           

“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.”

Many folks don’t know how rare Huntington’s disease is, $30,000 people in the U.S. have the disease, and the second fact unknown to many is that approximately 250,000 people live AT RISK.  So, what does that mean? It means those 250,000 had a parent with Huntington’s disease and they have a 50/50 chance of inheriting it. https://www.wehaveaface.org/    https://help4hd.org/           http://www.hdsa.org  

John and his three sisters, Lora, Marcia and Cindy were AT RISK since their mom had HD.  The five of us traveled a precarious road in the shadow of Huntington’s disease, not knowing when and who Huntington’s would attack.

 

We can never lose HOPE…………………………Therese

To purchase Therese’s memoir, an inspirational story of hope and love, please go to   http://www.theresecrutchermarin.com