A Huntington's Christmas story: ten years of wondering

For the past ten years Christmas has come with a tinge of sadness in our family, as we remember the bad news about my mother.

It was the day after Christmas in 1995, and life seemed good. I was getting established in my career, and my wife and I were talking about starting a family. We were in our thirties and had few worries.

Then I opened a letter from my sister. “It’s a relief to finally know what Mom has,” it read.

This letter came as a surprise to me. For some time I had known something was wrong with my mother. My dad had mentioned that my mother’s legs were shaking uncontrollably at night. She and my father, who live three time zones away, had paid us a two-month visit earlier in the year. One day my mother was very depressed and angry, so I gave her a massage to try to lift her spirits. She said she felt better, but I sensed that there was more to the story than just depression or a quirk of personality. I urged my father to take her to a specialist. He did but failed to keep me fully abreast of the doctors’ reports.

I immediately called my sister. “What does Mom have?” I asked.

“You mean they didn’t tell you? Mom has Huntington’s disease.”

Huntington’s disease? I had never heard of it. I at first felt good that we finally knew what was wrong with my mother. My coaxing my dad to get her help had brought results.

Then my sister explained that Huntington’s was an inherited genetic disorder. She and I had a 50-50 chance of having it. And if we had it, our kids would face equal odds of losing their bodies and their minds.

My sister has three sons; in 1995, they were ages ten, eight, and six. What a terrible blow it must have been for her to learn that they were at risk for HD!

I rushed into the next room to tell my wife. One of the first things I said was that we might have to put off having children. We were devastated.

That same day I called one of my mother’s doctors to get further details on Huntington’s. I told him that I wanted to get tested immediately. He cautioned me not to do so, because of the risk of losing my job or not being able to get certain kinds of insurance. A person at the local chapter of the Huntington’s Disease Society of America gave me similar advice and invited me to attend the monthly support group meeting.

That fateful December 26 I felt gripped with fear as I lay in bed worrying about my mother and my own future. My wife hugged me as she had never done before.

And so began ten years of wondering.

How long will my mom hold out? She has experienced a steady decline to the point where she is now virtually helpless and living in a nursing home.

When will an effective treatment or cure be discovered? The HD gene was discovered in 1993 and literally scores of research breakthroughs have been made by some of the world’s most interesting scientists, but there is still nothing that effectively stops or controls the disease.

How and when will my own symptoms start? After living in denial for several years, I got tested in 1999 because we wanted to start a family. I am gene positive. Having this defect means that I will develop symptoms, perhaps as soon as in the next few years. As the years have gone by, I have become increasingly anxious. The worry becomes more acute at the Christmas-time anniversary. It’s also a few days before my birthday. Each year we’re reminded that time keeps ticking, and the probability of my illness increases.

Worst of all, this year Mom won’t spend Christmas at home for the first time in her 68 years. Instead my dad and my sister will celebrate with her at the nursing home.

This year there will be no gift of a treatment or cure. My dream is that I awake some December 26 to hear the news that Huntington’s disease has finally been stopped.

A Thanksgiving visit: a time to reflect on HD

My dad traveled to visit for Thanksgiving, bringing the stark reality of my mother’s affliction with Huntington’s disease into our household.

I have seen my father, now 78, become tearful only a few times. But he cried when he first talked about my mother, whom he left for the first time in 47 years of marriage in order to spend ten days with us. He has been doing a lot of crying since putting my mother, 68, into a nursing home in August, he explained.

“I ask God, ‘Why our family?’” my dad said. A devout Catholic who believes in accepting God’s will, he added quickly: “I suppose I shouldn’t ask that question.”

Later I decided to ask him: “Why do you think God would choose our family?”

“Maybe he’s testing us,” my dad responded.

“That’s quite a big test he’s putting us through,” I rejoined.

I asked myself that same question – “Why us? Why must I be at risk for HD?” – over and over again during his visit. I don’t discount the possibility that in some odd way there might be divine purpose in Huntington’s disease. But mainly I believe that our creator – whatever it may be – has placed us in a universal struggle for perfection and justice. Curing HD is just one of the great challenges that humanity faces. At-risk people like me who are fighting to ward off onset and striving to support those who research treatments are front-line fighters in that great struggle. We try to set an example for others, raising awareness about genetic diseases and pointing out the need for compassion.

I also don’t discount my father’s faith. Over the past fifteen years, it has helped him care for my mother day after day and to accept her gradual but inexorable decline into the infant-like helplessness HD causes.

“You’ve shown a lot of strength,” I told him as we went out for a drive one night.

“I didn’t know how much I loved your mother until these past few years, taking care of her and seeing how much she has lost,” he said.

The transition of the last few months – Mom into the nursing home and Dad living alone for the first time– has been tough. But that same strength is there. He visits her every day for several hours, taking her favorite fruits and talking patiently with her even though she can no longer speak.

For the first time since August, he and I talked to her together on the phone, because at my house we have two extensions. I have sorely missed these three-way conversations in which my dad and I did all the talking and my mom simply listened. Whenever I call her at the nursing home, I am at a terrible loss for words. I usually speak for just four or five minutes, telling her about her five-year-old granddaughter and other things in our life.

“Whenever I arrive at the nursing home, her face just lights up in a big smile,” my dad said many times during his visit. “That makes me feel so good.” He added, “I know I made the right decision putting her in the home. I know she’s happy there.”

One of the hardest parts of my dad’s visit was seeing him so frail. Seeing the man I might become has made me think a lot about my own mortality.

But I fear most my mother’s fate, because I, too, am gene positive for HD. More difficult than seeing Dad was looking at pictures he had taken of my mother at the nursing home. These were the first photographs I’d seen of her since the move. My dad pays a woman to do Mom’s nails and set her hair, but he still needs to coach the nursing home staff on how to use a shower cap to keep her hair nice. It was hard knowing that she can’t receive the same loving care that my father provided (but can no longer provide). There were also photos of her in a wheelchair and with the grimace HD people typically express.

My dad left me some of the pictures. My wife, my daughter, and I looked at them very briefly. My wife and I didn’t say anything, and we quickly put them away. I’ll let them sit a few days until I can collect my thoughts about the flood of emotions that came with my dad’s visit.

When I get the courage to look at them again, I think I’ll take out my favorite picture, the one in which Mom has that big smile that Dad likes to describe. Despite all that HD has done to her, it reminds me that she is still alive and human!

I think I’ll frame that picture.