“As a little boy, I remember my grandmother only as a figure confined to her bed, then a nursing home. She was sick, but specifics were never discussed. Four years after I married, on a family visit in 1979, I was told about the “family secret,” Huntington disease. No one must know — people will be fired from jobs; the family name will become synonymous with “crazy,” future prospects for the children will be non-existent. I remember my mother telling me that she did not have it. But I somehow instinctively knew she did. And as I watched her for the next number of days, I could see mannerisms and movements that were strange. Her sister, who we visited, had carbon-copy mannerisms as well. My wife and I had a good cry that night. I look back now and wonder why — was it because of what was going to happen to me and us, or was it because of the uncertainty? There was no way to be tested back then.
When I returned to work after vacation, I immediately discussed the condition with my boss. I would not live in the “dark ages attitude” that my relatives did. I decided that I needed to know if my possible future health risk would actually risk my current job. Since they said absolutely not, that was one worry out of the way, but looking back I suppose this risk-taking indicated that I wanted to know what all the facts were, good or bad, to better my life and to be in control. I didn’t like surprises of that nature.
As my wife and I reflect back to those years before testing, we realize that a wall built up between us, a fear of getting too close. Though our relationship was fine most of the time, the uncertainty every once in a while would beat down the mutual growth that two people require. This was a subtle thing, and not truly apparent at the time. We were also looking at our finances differently. Rather than put money into our house, we took trips. We wanted to have our “retirement” now, in case. “In case.” Two words, often unspoken, that cover us like a family heirloom.
When predictive testing became available, I immediately wanted to know. But because many of my relatives were gone, however, I had to wait for the genetic testing in 1993. I found that preliminary meetings with the medical team were essential for the support and information that they gave me. I felt prepared on both a technical and spiritual level for the answer that we had been waiting for after all those years.
My results came back negative. I did not carry the HD gene. Another good cry followed. I remember standing there with my wife, hugging each other, saying, “I’m free, I’m free,” over and over. I don’t think we realized how much of a relief it would be. I don’t know how we would have reacted if bad news had been in the cards, but somehow I suspect we were always thinking HD was there. We assumed the worst without ever saying so.
I think we telephoned and wrote everyone in the world who knew us, and it surprised me how much our concern had been on the minds of so many others. Though I never hid it from my relatives and friends, I didn’t realize how much the uncertainty had affected them as well.
“‘In case.’ Two words, often unspoken, that cover us like a family heirloom.”
So it is now two years after the test. My wife and I have grown closer, and though we kept children out of the equation (in case), we talk more about our lives together, and especially about future plans, with far more conviction than before. Our house, which I often saw as a place in space, became a home to me, our garden more interesting, and yard work less painful. Though we had decided long ago to pay off our house and other debts before I’d be incapable of working (in case), we now are doing it with a relaxed attitude, taking life in and thinking the sooner the better, not the sooner we’re safer. I guess we feel in control of our fate now. No one can be certain what the future holds, but now we know what it doesn’t hold, and we can both deal with that.”