Charting new territory: going public about HD

On June 10, for the first time ever, I revealed in public that I am gene-positive for Huntington’s disease.

It’s been a long road – from the time I learned in late 1995 of my mother’s diagnosis for HD, to the test in 1999 that changed my life forever, to the speech at which I had the courage to tell an audience that my mother died of HD and that I run the risk of developing the disease at any moment.

The reasons for not going public continued to loom like enormous storm clouds in the days and hours leading up to the speech that I gave at the Catholic University of Rio Grande do Sul in Porto Alegre, Brazil. By revealing that I would likely lose my ability to walk, talk, and think at some point in the next decade, I would be forever putting at risk the possibility of advancement in a field in which people highly prize research, writing, and speaking.

Now that I’ve opened up to others in public, I’ve thrown off my protective sheath of anonymity. I didn’t realize how convenient, comfortable, and reassuring it was to have that anonymity. I could avoid controversy, and I could go on acting as if nothing would happen to me.

I now feel that I’m charting completely new territory in my life, the life of my family, and my involvement in the movement to stop HD. I have no way of knowing what triumphs and pitfalls await me. I fear that I won’t be ready for them when they occur.

Planning a trial run

In January I received an invitation from the Catholic University to speak on the theme of sustainable development. That’s not my field, but as a frequent commentator on current events for Brazilian newspapers, I felt fully capable of working up a presentation.

Just days before I had completed the first draft of my previous blog entry, “God, Huntington’s disease and the meaning of life,” which featured a discussion of the life and writings of the Catholic Jesuit priest Teilhard de Chardin (1881-1955). Teilhard focused on ecological issues in parts of his work, and he has inspired more recent thinkers to embrace environmentalism.

I decided that in 2010 I would start going public. So I decided to use the speech to start getting the feel for life out of the HD closet.

I felt comfortable sharing my HD predicament, speaking in Portuguese, with a Brazilian audience. Brazil is a second home for me; I first traveled there in 1986 and haven’t missed a year since.

At the same time, I felt that revealing my situation for the first time before an audience in a distant land was less risky than doing it in my own backyard. It’s hard to explain, but it felt safer than coming out someplace closer to home like work, where I’m not yet ready to speak to people about HD. It would be a trial run for both a speech on my gene-positive status and the powerful feelings sure to surge up from within the depths of my being after so many years of public silence.

The act of going public

About 250 people gathered in the auditorium for my speech. There were students, professors, and people from the local community.

After I provided some background on myself and some thoughts on 25 years as a historian of Brazil, I began by showing pictures of three people with HD. I explained that HD is a 100-percent genetic disease and that people with the defective gene all get sick. I described it as a combination of Alzheimer’s and Parkinson’s diseases. Huntington’s, I explained, attacks the brain and robs people of their ability to walk, speak, think, and swallow.

Many HD people shake or have exaggerated movements. As a result, I continued, HD people are sometimes arrested by the police on suspicion of drunkenness. Standing at the podium, I tried to recreate the movements of an HD person by swaying left and right.

HD can go on for up to 20 years, I said. During that time the patient becomes increasingly dependent on relatives and caregivers.

The end is a difficult and sad death.

After describing the three pictures in detail, I put up a slide demonstrating MRI images of a healthy brain and another terribly compromised by HD, with large areas of white space where neurons had died.

There is no treatment or cure – only a few palliatives to reduce the effects of symptoms such as the uncontrollable movements. No medication attacks the disease’s root causes.

Getting personal

Without pause, I went on: my mother died of the disease in 2006. Because my wife and I wanted to have a child, I got tested eleven years ago this month. The result was positive.

“Tonight, before you in this beloved and honored land of Rio Grande do Sul, I am speaking publicly about my situation for the very first time,” I said, my voice becoming more intense. “This means a lot, because it’s been 15 years of anonymity – an anonymity imposed by the fear of genetic discrimination, a new discrimination created by the advances of science, which increasingly allow a person to know his or her future health profile, and discrimination also because denial and prejudice continue to impede the understanding and acceptance of people with disabilities.”

I’m okay now, I told the audience. But the disease could start at any moment.

I finished the HD portion of the presentation by showing two photos I had taken illustrating the Isis Pharmaceuticals, Inc., research for an oligonucleotide that could become a potential treatment to attack the disease at its genetic roots.

During the conclusion of the speech, I returned to the theme of HD. “We face immense problems, from the cure of diseases such as Huntington’s to the salvation of the planet from environmental destruction,” I said. “But our capacity for research is also growing.”

Worrying about reactions

In the days before and after the speech I feared how people would react.

My wife, who is Brazilian, counseled me not to mix my work with personal life. It wasn’t right, she said, to insert into the speech something that (apparently) had nothing to do with the requested topic. But the organizer of the event had given my wide discretion, and I believed that a personal reflection comparing the need for research on two critical problems facing humanity would capture the audience’s attention.

Later, however, my wife came to understand my need to include HD. I reminded her that if we in the HD community won’t even speak out for ourselves, then nobody else will have any reason to care about us. She agreed.

The morning of June 7, the day before I departed for Brazil (without my wife or daughter), I had an intense dream in which I had a very frank and amiable conversation with a cousin whose mother had kept him in the dark about my mother’s condition until she died. In my waking life, I am extremely angry at this branch of the family for ignoring my mother. I awoke from the dream with the absolute conviction that I needed to come out about HD during my speech.

The aftermath

It’s impossible to know what people in a crowded auditorium are thinking about a speech. I noticed that people seemed riveted throughout the presentation.

After the speech, three commentators – Brazilian experts on sustainable development – offered their thoughts on my words. All three of them expressed solidarity with my situation, and one in particular thought my personal reflection was very important.

In a long question-and-answer session with the audience, however, nobody asked anything about HD. I was disappointed. Neither did the topic come up afterwards at a dinner with the organizer and two of the commentators.

This was probably the first time that anybody in the audience had heard of HD. Despite the increasing publicity, HD remains still a relatively unknown disease even in the U.S., compared with amyotrophic lateral sclerosis (Lou Gehrig’s disease), Alzheimer’s, Parkinson’s, and muscular dystrophy.

Brazil is many years behind in awareness about neurological diseases. The Huntington’s Disease Society of America has more than 30 chapters and 25 Centers of Excellence for Family Services and Research. However, Brazil, a country of nearly 200 million people and an estimated 20,000 HD people, has the equivalent of only two chapters, only incipient family services, and no research programs for treatments or a cure. The Associação Brasil Huntington was founded in 1997 and bravely seeks to assist HD families spread throughout a country larger than the continental U.S.

Also, the fact that I am currently asymptomatic undoubtedly reduced the impact of my comments on HD. If I were already showing symptoms, the presentation would have been infinitely more powerful.

One woman, though, left me a note with a little prayer card thanking me for the opportunity to hear me speak. “Don’t forget that for God nothing is impossible!” she wrote. “May the size of the problem become small alongside the size of your faith!”

Another woman, an engineer, thanked me for my courage in speaking about HD and for pointing out, via Teilhard, how everything in the world is interrelated. Lamenting the attitude of a colleague who doesn’t want to consider his projects’ impact on people, she agreed with me that everything we do has a social consequence.

Unpredictable paths

After the speech I felt angry for a while at my colleagues. I asked myself: why didn’t they want to know more about HD or my situation? But, thinking about it carefully, I understood that it wasn’t fair to expect any further curiosity, given the general lack of knowledge about HD and the fact that the main theme of the speech did not deal with it.

Over the years my wife has regularly warned me about this. In fact, she worries deeply about how I will handle the lack of attention and maybe even rejection that will be part of a public stance about my gene-positive status.

Away from my family and friends in San Diego, I felt very lonely in Rio Grande do Sul.

When I revealed that I was gene-positive, no bells rang, no lightning struck. Coming out as I did is just one step by one person in the process of building awareness about Huntington’s disease. It’s a huge personal step for me, but the steps still will be even bigger and more important ones as I strive to keep healthy and do my part to the build the movement.

Before June 10, I was quite accustomed to acting as a behind-the-scenes advocate.

Now I gently leave behind that phase of my life to try out new and unpredictable paths.

Moment by moment

No matter how widely known my gene-positive status becomes, I will continue to write in this blog under the pseudonym “Gene Veritas.” The name has come to mean a lot to me and to many of the readers of this blog. It’s a trademark – “the truth in my genes” – that reveals so much about my predicament and that of so many other people facing the possibility of a genetic disease. It also gives me the freedom to continue expressing myself freely about HD.

Going public about HD is a process for which there is no ritual or long history of examples. I’ll learn as I go, finding the right formula and pace for me.

I have learned to take living at risk for HD day by day. For a while, at least, I will go moment by moment as I step further out of the HD closet.

Right now, I’m going to rest up from my trip and let tomorrow worry about tomorrow.