To go – or not to go – public

Should I go public with my at-risk status?

That’s a question I’ve thought a lot about since I discovered nine years ago that my mother had HD. The prospect of going public leaves me excited about the new ways in which I could help the quest for the cure, but it also makes me nervous about the many perils my family and I would face.

The other night my wife and I once again debated the pros and cons of my revealing my status. I always raise the topic and advocate my coming out.

I could give talks to local organizations such as Kiwanis that might be able to donate money or help the cause in some other way. I could write newspaper op-ed pieces in which I use my family’s experiences with HD to describe the disease’s horrors and its terrible social impact. I could openly invite acquaintances and friends to attend fund-raisers or to assist the campaign against HD in some other way. I could finally wear a “Cure HD” button for the whole world to see.

In short, I could do my small part to take HD out of the Dark Ages and give it the public prominence it needs and deserves. At last I could end the secrecy and be true to myself.

If and when I became sick, I would be able to look back on my efforts knowing that I struggled with every inch of my being.

My wife tends to see the broader implications of going public and urges caution and patience.

Do you want to give up your chances at career advancement so soon? she asks. What happens if you lose your job or if your employer uses your at-risk status to get rid of you? Will others interpret every tiny slip or miscue in public as the onset of symptoms? What happens if we lose our insurance and I am excluded from a new plan? A public declaration of my at-risk status will tinge every decision others will make about me.

My wife asks: will I be able to live with unmet expectations of going public? Most of our friends and acquaintances will at first show sympathy, but then how will I feel if they don’t have the time or money to support the cause? What if my hopes for increasing donations do not materialize? Could the excitement and promise of going public later lead to depression?

And what about the impact of going public on my daughter? Insurers will want her to get tested. Employers might balk at hiring someone potentially at risk. There are numerous other ramifications as yet unimaginable.

I am always left in a quandary after these discussions.

I insist to my wife: if not now, then when should I finally go public? We have been dealing with HD for nearly ten years. As my potential age of onset approaches, the urgency of a treatment increases. I want to be able to fight for one while I still have all of my faculties.

You’ll know when the time comes, she says.

Like the onset of HD itself, that moment is inevitable but can never be precisely known. Just as we have faced HD together from the start, the decision to go public will ultimately be one based on what is best for the family as a whole.

At risk, but not alone

It’s hard to be optimistic when writing about Huntington’s disease. The immense suffering and stress caused by this malady weigh heavily in the lives of at-risk individuals and their families. But sometimes a ray of hope brightens my day.

The other night I left a meeting of HD activists touched and energized by the commitment of the numerous people who attended.

When I arrived, a group was wrapping up a discussion about a local fund-raiser. I could feel the excitement as these people put the final touches on an event months in the making and already guaranteed to bring in thousands of dollars for HD research.

I took part in a second session about other fund-raisers and other HD-related issues. Although everybody around the table had put in a long day at their regular jobs, we worked late into the evening with the liveliness of the morning hours.

This group puts on a half dozen events every year. Each requires attention to hundreds of details, networking throughout the community, and finding fresh ideas for attracting the public and donors. The smooth and timely execution of these events and the teamwork involved rival much of what I have witnessed in both the non-profit and business worlds.

All of this comes on top of the group’s array of other activities such as sponsoring a HD support group and educating the public about the disease.

The most impressive fact is that everybody is a volunteer.

But my admiration doesn’t end there. Some of the volunteers have family members affected by HD. They live the triple burden of breadwinner, householder, and caregiver. I am relatively lucky: I still have my health and can work and help my wife with managing the home.

Many members of the group have no connection to Huntington’s disease. Some of these not only work full-time but also have families and significant commitments to church and other activities. These individuals truly sympathize with the plight of families affected by HD and are drawn to the challenge of conquering a seemingly insurmountable disease.

As one activist put it, there is something special about being part of a grass-roots effort to stop a devastatingly cruel disease that doesn’t get the same amount of dollars and publicity that so many other diseases receive.

Many nights I lay down distraught about HD. I would prefer another life. But facing HD has also revealed a world of caring and dedicated people. I am at risk, but I am not alone.

Giving up my dreams

Huntington’s disease hits people in their prime. Knowing that the genetic defect is harming my brain and that I need to prepare for the day symptoms will strike, I have sadly relinquished many dreams.

One of the most difficult to let go is my career. Considering the pressures, I still turn in a solid performance at work. But I no longer have the energy or the time to strive for the top of my field. Like most professionals of my generation, I grew up desiring success and recognition. But as my life has become dominated by the drive for the cure and the need to take care of my health, my professional ambitions have waned. A wonderfully fulfilling part of me has disappeared for good.

The time I used to put in at night for my job I now spend reading on HD.

Professional gatherings are tough to attend, because I resent successful colleagues who advance without the burden I carry. I always rush home early to spend time on HD issues or with my family.

I only apply for jobs that are near adequate care facilities for HD people. Every application turns into an excruciating discussion with my wife about a move’s impact on our planning for HD.

I sometimes think that moving ahead professionally will somehow help me in the cause to stop HD. But I’m probably deluding myself.

More often I tell myself that career is irrelevant without good health. Better to spend time exercising, resting, and eating well than worrying about a better job.

The threat of HD has changed me for good. Even if the cure comes before I fall ill, I will have lost a large chunk of my life wondering about HD.

I used to define myself as a seeker of success. But HD has killed my passion for work. Now I am mainly a person living at risk.