In the fall of 2010, as my brother was dying of colon cancer, I learned a terrifying secret. He also had Huntington's disease, a horrific brain disorder that is passed down in families.
Suddenly, even as I was losing my cherished sibling, my childhood soulmate, I was also grappling with my own possible death. Because Huntington's is purely genetic, I had a 50 percent chance of having the incurable disease. And if I carried the lethal gene, that meant my children could have it too.
There are no drugs that slow the progression of the disease. Eventually, if I did have HD, I'd lose control of my muscles, stumble like a drunk, be unable to speak or feed myself, and possibly suffer dementia.
I was terrified.
Before he got sick, my brother had been a fearless athlete, a tall, good-looking guy who barreled down the steepest ski slopes. When our kids were small, we often went skiing together, and I would stand at the bottom of the mountain watching him fly, snow spraying out behind him in a beautiful white arc.
By the time he died, he couldn't walk. He was so thin his bones were visible. He could still communicate though. He could still understand me. I was able to tell him I loved him. He knew. He was so sweet. He adored his kids.
He died at home on Christmas Eve.
In January, I began researching genetic counseling centers, created a Google alert for “Huntington’s disease,” spoke with journalists I knew who covered science and medicine. Did they know any experts in Huntington’s they could refer me to? Most had never heard of it.
Even as I was grieving, waiting to hear news of my brother's memorial service, I needed to make a decision. I was living in fear, anxiety. My siblings and I were emailing each other, sharing information, trying to decide whether to get tested. Did we want to know we were going to die a slow horrible death?
Although I had no symptoms, I was conflicted. As I agonized, I thought of Nancy Wexler, a neuropsychologist at Columbia University. After discovering her own risk for Huntington's, Wexler led the famous search that identified the HD gene, in 1993. She was the disease's strongest advocate. Yet the scientist had never revealed her own status, or if she’d been tested. "I know that with me," she told NBC Nightly News in 2009, "if I were to go to bed every night thinking I'm going to die of Huntington's, you know, why should I bother to get up?"
The difference was I had children to consider. I could spare them the worry I now constantly felt if I got the test. That is, if I didn’t have the gene.
One day, I came across an article in the Guardian by Charles Sabine, a former British war correspondent for NBC. I recognized the name immediately. He had covered the war in Kosovo. I had been in Albania in May of 1999, doing a story on refugees spilling over the border. I was stunned when I read that he had Huntington’s. I read on.
“I now speak publicly on behalf of Huntington's families around the world,” he wrote. “I chose to come out of the Huntington's closet, so to speak, in 2007 because I wanted to make a difference. Huntington's patients suffer in silence. There is a lot of shame surrounding the disease because patients appear to be out of control. Thousands of people in Britain are hidden away as a result. This disease has wiped out my family. There has to be something positive that can come out of this.”
I couldn’t go on being as depressed as I was. I couldn’t even think about my brother's memorial service two weeks before, at New Life Church. My cousins from Oklahoma had come, Dick and Maggie, Dinah and Sudi and Ann, their husbands and sons and girlfriends. But the service was awful, cold and impersonal.
I made my decision. I was going to get tested. It was better to know, be 100 percent sure. I called the Huntington’s Disease Center for Excellence at UCLA. “May I speak to Michelle Fox?” I said.
Mona Gable is the author of Blood Brother: The Gene That Rocked My Family, a memoir recently published by Shebooks.
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