It has been almost nine months since I've written in my
blog. Last March I began to write the following:
My mother died in her sleep on February 13.
So ended 15 years of struggle with Huntington's disease.
I still cannot believe that she is dead.
But in many ways she had already died long before February 13. The dementia of HD had slowly but inexorably done away with her ability to communicate and to lead a normal life.
Seeing her in the casket at the funeral home, I could not cry. She seemed to still be with us. Only after the wake, when the time neared for the lid to be closed, did I finally break down.
In some ways my mother's death was a relief. HD had dehumanized her. That's why we had decided against connecting her stomach to a feeding tube. Her suffering has ended. Indeed, in death she had a look of peace on her face.
I am tired of thinking of Huntington's disease, this threat from my genes that taunts me every day but has yet to manifest itself.
Now that Mom is gone, I am preparing myself to renew my energies for the continuing battle to find a cure.
After I wrote that - which I did not post to my site - I could not bring myself to write again. Starting around that time, and extending into May, I went into a dual spiral of anxiety and depression.
I also went into denial about my mother's death and Huntington's disease, especially because I had traveled home to see her just a couple weeks before her death. At the nursing home I squirmed with fear as I looked into the genetic mirror that revealed the symptoms and decay that I myself likely will experience in the not-too-distant future, because I too have tested positive for HD.
I badly needed a break from HD, and staying away from this blog has been part of that process.
Without realizing it, I began to take on the symptoms of an HD person. The littlest of tasks became like mountains to climb, and thinking about bigger responsibilities and plans terrified me. Whenever I became anxious, I started to rock back and forth on my feet or bow my head ever more quickly and ever closer to the floor. My hands fidgeted too. My wife had to keep telling me to get a hold of myself. I simply didn't know how I was going to get through the next minute, let alone the next day, week, or month. I couldn't enjoy anything. I rocked back and forth even when playing with my daughter, although I tried to do it only when she wasn't looking.
I was acting out my feelings of doom. Seeing my mother in such a horrible state before her death drove home more than ever the utter destruction wrought by the disease and the inevitability of its arrival in my own body. On a deep level I was convinced that I would get this disease.
On another level I was identifying with my mother by taking on her suffering. This was my way of being close to her in death. I was her son, I had inherited her gene-positive status, and now I would be just like her.
I also felt guilty about her death. Why had I not visited her more often? Why did I often ignore her when I was in the same room with her? Could I have done more to save her? I began to ask myself these questions in the months following her death and realized that avoiding her was a way of repressing my own fears about the disease. Maybe I deserved to get HD.
And I was struggling to come to terms with death itself - not death as most people think of it, but death in one of the most excruciatingly painful ways imaginable, dragged out over many years and pronounced to oneself and to everybody else as the HD-stricken adult disintegrates into a creature more helpless than a toddler, incontinent, unable to swallow, speechless.
I don't know how I got to the month of June without totally breaking down. Luckily, I got on some new medications for anxiety and depression. They helped enormously, and now I feel better than I have felt in years.
Denial has helped, as well. For many months after my crisis I have simply blocked out of my mind the possibility that I am gene-positive for HD. I stopped fantasizing about symptoms. I stopped worrying about when I would get sick. I tried to live in the moment as best I could.
I also started taking time out to enjoy life. In July we splurged and went on a week-long family cruise to Alaska. Seeing whales, eagles, green mountains, fjords, and glaciers calmed me and renewed my spirits. Being at one with nature made my worries and the death of my mother seem less ominous. Lately I have been thinking that my fate with HD is just another act of nature, part of the grand mystery of God and the universe.
Above all the trip was important because my dad came with us. He was crying every day about my mom. He wondered what he was going to do with his life, and he talked about how he would soon join her. Even though HD had destroyed her mind, she had been his companion. As he kept reminding me, 48 years with a person was a very long time. He's 79.
The trip got his mind off of mom and focused on the living members of his family, especially his granddaughter. At six, she now has an understanding relationship with her grandfather. When my wife asked her if she wanted to see grandma in the casket, my daughter said yes. She stared for a long time. It was the first time she saw a dead person. She attended the funeral, laid a flower on the casket at the cemetery, and witnessed the pain of all of us. She clearly made the connection between Huntington's disease and death. At our home and on the cruise ship she saw her grandfather without his spouse. She held his hand and in her own special way helped draw him out of himself and his suffering.
It was also a time for my father and me to bond again. We shared a room for the first time in more than twenty years. He watched me take supplements that I hope will delay the onset of HD. After so many years of focusing on my mother, for the first time he has realized that this disease can affect me too.
As fall sets in and the first holiday season without my mom approaches, we are back at the routine of life. My daughter is in first grade, and my wife and I are in full swing at work. My dad visits his doctors, goes to weekly Mass, helps the neighbors, and feeds the squirrels and birds that appear in his yard.
And we are all girding ourselves for the next battle with HD: a father wondering whether his son will follow in the footsteps of his spouse, a wife worrying about raising a child and caring at the same time for a sick husband, a daughter reassuring herself that all will be okay with her parents.
And I, taking many months to get up the courage to write again, am finally coming to grips with the death of my mother at the hands of Huntington's disease.