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.