Search This Blog

Just Because: 'Blood Brother: The Gene That Rocked My Family'

Mona and Jim
A few months ago, my friend and former co-worker Mona Gable emailed that a book of hers was being published. Of course, I bought a copy, but at the time, I read only the first few pages before life intervened. The other day, I was sick in bed and picked it up again. This time, I read the entire thing, cover to cover. I couldn't put it down. It is the story of how, four years ago, Mona discovered that her little brother had Huntington's disease, which is genetic, and of how it turned her and her family's world upside down. She exposes her reactions, her thoughts, her grief courageously, with a simple, sometimes raw, honesty that makes it easy for a reader to put him/herself in her position and to understand how the premature loss of a beloved sibling can be doubly devastating.

 Blood Brother

One late winter morning in 2011, I sat in the waiting room at UCLA's pediatrics clinic. Although I have children, I wasn't there because of them. I was there to see if I was going to die anytime soon. After three weeks of agony, I was about to get the results of my genetic test for Huntington's disease.
   Oddly, as I sat in the room with its cheerful murals of Disney characters, my husband and a gaggle of parents and toddlers around me, I was more numb than afraid. I suspect I was still in shock. I was also still grieving my youngest brother's death.
   Until a few months before, I had been only vaguely aware of Huntington's. I knew it was the fatal
brain disorder that had killed iconic American folksinger Woody Guthrie. But I didn't know it was rare. I didn't know it was purely genetic, passed down from parent to child. And I didn't know it combined the worst aspects of Alzheimer's, Lou Gehrig's disease, and Parkinson's—a cocktail of misery and eventual death. Or that there weren't any treatments or a cure.
   And then in December of 2010, my brother Jim was diagnosed with Huntington's—on top of terminal colon cancer—and suddenly I was thrust into a world I never could have imagined. Jim didn't last long; he died of cancer on Christmas Eve, only 58. Because we were close, so much alike, it was like watching myself die, too.
   ...

No comments:

Post a Comment