I don’t post on this blog enough; anyone who follows here, knows that. As I’ve noted in the past, fear keeps me away. If I hide my eyes, maybe it will go away? It, being Huntington’s Disease.
My family was blindsided by HD. My grandmother was a powerhouse and true icon in the world of Massachusetts’ realtors, for more than two decades. She was named top realtor in the state of Massachusetts, for the top real estate company in the state, for sixteen years! This, at a time when women were still making their way into this area of business. I grew up enormously proud of her, and hugely impacted by her. She helped raise me, and was the solid person in my life. She taught me to shake hands firmly, to make a mean pumpkin chiffon pie, and to be kind to others. I think we all both adored and feared her… she was a huge presence in our family and the community.
When she started tripping, while showing houses; walking strangely; forgetting things she’d always remembered, and a myriad of other strange changes, everyone assumed she’d developed a drinking problem. Family and friends urged me to look for drugs and alcohol, they all believed she was hiding, when I spent summers living with her, during college. I found nothing, and she grew worse.
When my grandmother was finally diagnosed with Huntington’s, our entire family went into denial. We didn’t know what it was. We were overwhelmed with the idea that anyone or anything could impact my grandmother in such a way, and none of us believed it would impact us too. We were an entire family of ostriches–– even after the hard reality of watching Grandma sink into herself, and eventually die of HD. We stayed paralyzed as my mother was diagnosed, but took more notice. By the time my forty-nine year old aunt died (my mother’s younger sister), after only a short nine months with rapid symptoms, we all were terrified. My mother’s illness was prolonged and horrible to watch. My younger sister is living with HD.
A few months ago Therese Crutcher-Marin read one of my posts here on the Huntington’s Chronicles, and contacted me. She has written a powerful new book, Watching Their Dance: Three Sisters, A Genetic Disease, and Marrying Into a Family At Risk For Huntington’s (buy here). The book looks at her husband’s family history with HD. It begins before there was testing–– when love was a leap of faith, and brings us to the present. Anyone dealing with this horrific disease may benefit from reading her book.
Interview to be continued on my next blog.
We can never lose HOPE……………..Therese