Friday, October 27, 2006

Mourning mom

It has been almost nine months since I’ve written in this 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 this 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.


Gerard said...

Hi Gene,

First my condolences. Fine to see you writing again an telling the world about the struggle of HD.
Thanks and strenght to you an you're family.

Gerard (Netherlands)

steinre1 said...


Sorry for your loss. My father passed away about 6 months ago from HD, so I know what you are going through. Hang in there and enjoy life and your daughter. You should visit the some support websites and chat with some of the members (e.g. Besides finding support for yourself, I think you could be a great benefit to the people who visit. Your posts are not only informative, but quite eloquently writen.

As an aside over the last couple years I too became quite anxious, forgot information, seemingly tripped over nothing, etc. I tested HD negative about a year ago. It's funny how the mind can play tricks on you.

Keep your head up - there is tons of promising research on the way...

Angela_F said...

Oh Gene, I just want to send my best wishes to you and your family in what is still a difficult and emotional time for you all.

Mourning a family member is always horrific but to know now that the cycle will start once again... I think, certainly with my mum, half the battle at the start certainly is in the mind. But you give me hope that we can face this illness and fight back with all that we have.

All the best

Brom Sulaiman said...

Hi Gene,

I am terribly sorry for your loss.

Reading your post today, I found myself inspired by the strength of human spirit in the face of adversity.

HD is devastating. My Grandfather died from the disease, and now my mum and uncle both have it. My mum is in the later stages of the disease and I can relate to everything you have written.

One point you made about the dehumanising of the affected person, is in my mind, one of the worst parts.

Thanks for your post. It helped me greatly on a day that I most needed it.

I wish you all the best, and always think of all the families out there affected by it. My heart is with you.

Brom (UK)

Anonymous said...

Also my condolences. Its a hard struggle a live whit Huntington.
Good from you that you can write about it.
My name is Patricia I am 26 jears old and mum from 2 little boys.
I have the same struggle whit my dead He is alive but very ill.
And I have also the disease.
I want too wish you all the best.

White love

Patricia Netherlands

Gene Veritas said...

Dear Patricia,

My heart goes out to you and your family! I will continue to do my
best to support the search for a treatment and a cure so that all of us
can take a rest from this horrible fate. Thank you so much for reading
and commenting on my blog. Is there an e-mail at which I can write you?

Thank you to everybody else who has read or commented on this article.

Yours in the struggle,


Andrea Smurf said...

Hello Gene,
I am sorry for your loss, and I truly understand what you mean when you said that you began to lose your mother a long time ago. I am 26 and gene-positive, and my mother has been in a nursing home for 10 years. I felt like I lost her at the age of 15, but she definately was symptomatic long before even that time. I really appreciate you reaching out and being so open and honest in your blog. It really helps me to hear that other people struggle with this as well. Nobody deserves to have this disease. I think, hope, and pray that we can beat it with the right attitude, spirituality, supplements, and support. Thanks again.
Andrea, San Francisco