Living with a positive test result for the Huntington’s disease gene requires a constant juggling of life’s many demands and opportunities. What many would see as unambiguous success, for instance, actually causes new complications and stresses.
Take this blog. I haven’t posted here in several months. I would like to write several times per week. But job, family, chores, exercise, taking care of a new puppy, volunteering for the Huntington’s Disease Society of
The complications of success
In the past few months, unimaginable professional success has further diverted my focus from HD. I received an all-expenses-paid three-month trip to write a book, won a prize for another book, and have garnered numerous other accolades. I’m entering the prime of my career. The joys of such achievement have occasionally allowed me to forget my mother’s death at the hands of HD last year as well as my own at-risk status.
Success has created greater opportunities, but also made HD an even bigger factor in my professional life.
For the first time in 14 years, I have the chance to move to a better job. In my current job I’ve been but a cog in a mediocre machine, while the offer of a new job would allow me to join a team of people who truly appreciate my skills and want to employ them fully in an exciting work environment. I’d gain great prestige, a position of international leadership in my profession, and a 70-percent raise. I’d ultimately be positioned for a shot at the top jobs in my field.
The decision sounds like a “no brainer” – until you consider that I very likely could develop HD symptoms in the next few years. I’m 47, and my mother’s first symptoms, emotional outbursts, probably started around that time. By her early 50s, she had chorea (shaking), had stopped speaking normally, and could no longer take care of herself.
With that possible scenario in mind, should I take on a challenging new job? Unlike my mother, I know that I’m at risk, and perhaps I can stave off the symptoms until my sixties by eating and sleeping properly, exercising, and taking supplements recommended by the Huntington’s Disease Drug Works program (see www.hddrugworks.org).
However, because HD is a 100-percent genetically caused disease, there is no guarantee that I won’t get my first (noticeable) symptoms tomorrow morning.
The stress of success
The challenges of moving my family to another state, facing a higher mortgage, starting a new job, and certainly working longer and harder hours might not be worth it, especially since stress itself might trigger or worsen symptoms.
The financial rewards become far less significant when we consider that my wife would face a $30,000 cut in salary and lose some benefits, for example, an excellent retirement that we’re counting on for our future. Those losses are outweighed by my gains, but only if I remain healthy. If we had to rely on her lower salary and my much lower unemployment-related disability pay, we might face a bigger crunch than if we just stayed put.
Because of HD, just thinking about this opportunity has generated stress and enormous pain, frustration, and outright anger. I’ve frequently wanted to blurt out to my colleagues and the interviewers, who are anxious for me to accept the offer, that I can’t easily embrace this wonderful opportunity because I’m at risk for a deadly brain disease.
Paradoxically, I’ve chosen to stay in the “HD closet” precisely because revealing my status likely would lead potential employers to discriminate against me. Legally they can’t, but, in reality, they’d avoid a job candidate who might not be able to work more than a few years.
By moving, I’d also lose connections with the local HDSA chapter and a group of caring individuals with whom I share a life-and-death struggle. I could certainly volunteer for the chapter in my
Tough choices
I’ll be weighing the pros and cons of the job offer with my wife, close friends, and with you, my readers, in the coming weeks. Like many people affected by HD, I continue to prepare for the worst but live as best as I can. That attitude gives me eternal hope and keeps me professionally active and always in search of new job opportunities. But while I know that money and prestige are great boosts to anyone’s ego, they can’t solve the challenge of living at risk.
Giving up one’s dreams very early is one of the cruelest realities facing HD families. This hits especially hard when I think of my mother’s death at age 68 and of friends who have recently passed from the “at risk” to the “symptomatic” category. “You’re not just contemplating a job – you’re contemplating your whole life,” my wife tells me.
She believes that I am now beginning to understand her frustration at not having a second child. Having two children was her dream, but we abandoned the idea because of the stress involved in testing the child before birth – an experience we know all so well from having our first daughter, who tested negative (see my previous entry on this topic by clicking here). As my wife concludes about the dreams we’ve given up because of HD: “They’re so real and so close to you, yet they’re so far away.”
