I wrote this article that will appear in the HDSA Northern California Chapter Spring/Summer newsletter, The Nucleus. https://www.facebook.com/hdsanocal/
I once read, “If you have one true friend in your lifetime, you are lucky”. With that said, I have been extraordinarily lucky! When I met John in 1976 and we became a couple, I quickly learned that being with him meant having his three older sisters in my life as well. The four siblings had had a difficult upbringing and were exceptionally close and I was thrilled when they welcomed me into their circle. Like their brother, Lora, Marcia and Cindy were kind, positive, unselfish individuals and I became closer to them than I was to my own sisters. Through the years, I would count my blessings for the loving relationship the three sisters and I shared, as they became tried and true friends. These brave, gentle souls would inspire and teach me many lessons that would enrich my life.
When the sisters discovered the Marin family secret in 1978, their mother had Huntington’s disease, I struggled with my commitment to John, broke off our engagement and walked away from the four of them. But, after much soul searching, and deciding life was too short to walk away from the man I loved, John and his sisters welcomed me back with loving arms. John and I married in 1980.
Thus began our journey into the uncharted world of living AT RISK for Huntington’s disease. Though we didn’t speak about living in the shadow of Huntington’s, I acknowledged the possible consequences of my decision to marry into a family where four individuals had a 50/50 chance of inheriting the mutated Huntington gene. In my mind, based on statistics, this inherited neurological disease with horrible odds, translated into the fact that probably two of the four Marin’s would eventually show symptoms of the disease. It was a coin toss that we all tried to ignore.
Through the years, John and I shared many good times with his sisters playing softball, having barbecues and parties, camping, taking vacations together, and just hanging out at Lora’s house in Citrus Heights. Unfortunately, in 1984, Huntington’s began its attack on the Marin women. Lora was the first to fall prey to HD with severe, deep depression that led her to self-medicate with alcohol, and she was stolen from us at age 41 in 1989. Marcia was diagnosed in 1986 after a terrible car accident that seemed to trigger and exacerbate HD symptoms and she died at age 49 in 1999. Cindy, who we thought was free from the disease, began showing symptoms at age 41 and died at age 54 in 2008. Because of our close relationship, all three sisters lived with John and I at particularly hard times in their lives and I cared for Marcia for many years until I needed to return to fulltime work.
John and I miss them terribly and we wish we could have grown old together, celebrating birthdays and the holidays together and sitting on the deck at our cabin in Lake Tahoe sipping wine and watching the sunset. Forty years ago, I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.
Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s….. http://amazon.com/author/theresecrutchermarin