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Seeking Higher Ground: What I didn’t know

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“Financial planning would be far simpler if we came stamped with an expiration date on the bottom.” Thus saith my financial planner.

True, that.

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I have planned for my “golden years” with the goal of living until 90. But recently, I learned that I have a rare, fatal and untreatable ailment. It means that my expiration date will probably come long before 2042, the year I would have entered my ninth decade.

After initial consternation, I found I could greet the news of my mortality with an ironic gratitude: It means I don’t have to worry about outliving my money. I probably won’t spend many years alone, even though my spouse is two decades my senior. And now I’m actively working on my bucket list.

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When the specialist named my malady, he initially said that “it was too bad” no one diagnosed the disease when its first symptoms showed up in 1981.

Not true.

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Silence has been golden. What would it have been like, at 30, to learn that I had an incurable disease? One with a median survival time of 21.7 years? That knowledge would have been the elephant in the room during every decision of my adult life: deciding about marriage, about having children, about whether I should “come out” at work.

I can take this in stride at 66. I do understand that none of us gets out of here alive. I know that a likely expiration date has been stamped onto my genes from the moment I made my first entrance into this world.

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Listening to the radio on my way to Canyonlands last week, I found myself resonating to a country song:

People always said, There ain’t no fish in there…

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If I had known

I might have stopped fishing right then

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It’s just as well we don’t know

When things will never be that good again…

If, at 30, I had known the identity of my probable assassin, it would have caused me great anxiety. Ironically, anxiety is the one thing I can point to as prompting the three rare bouts of illness I have experienced during 36 symptomless years.

This experience has prompted me to wonder about the impact of genetic testing. In a recent New York Times piece, columnist Pagan Kennedy noted that, in the next decade, blood tests will be able to reveal the earliest signs of Alzheimer’s in 30-40 year olds, long before symptoms appear. Kennedy writes about an online group of carriers of ApoE4, the gene that predisposes humans to Alzheimer’s, saying, “Many of the [group’s] members maintain their anonymity for fear of being “outed” as carriers of the gene variant. One member of the group — I’ll call her D. — told me that she feared public exposure almost as much as Alzheimer’s itself.”

  1. has taken steps to safeguard her health, but keeps her genetic status secret. She’s afraid of being denied insurance. She fears social stigma. Because she’s a lawyer, she worries that she might lose clients if they knew what was written in her genes.

On its website, the National Institute of Health warns about the “emotional, social, or financial consequences” of genetic testing, noting that a “major limitation is the lack of treatment strategies for many genetic disorders once they are diagnosed.”

If you’re harboring something untreatable, how does it help to know?

Had my liver ailment been diagnosed when I was 30, the emotional consequences might have been severe. As the country song puts it, I might have stopped fishing right then. As an adult, I have lived through several bouts of serious depression, and knowing that I had an untreatable and fatal disease might have pushed me over the edge.

But by now, like Stephen Hawking, I have long outlived the probabilities. I know that the median — 21.7 years — is not the message. Even though my assassin wasn’t named back in 1981, doctors did know that I had some liver ailment. I did my best to control it by eating well, sleeping enough, exercising and avoiding alcohol.

Of course, “control” over one’s physiological destiny is somewhat of an illusion.

Our genes do predispose us to certain frailties, and when and whether we succumb isn’t entirely a matter of healthy habits: Euell Gibbons, an early advocate for a diverse plant diet, died from an aneurysm at 64. Baseball great Lou Gehrig died at 38 from the disease that now bears his name. NFL linebacker Junior Seau took his own life at the age of 43.

Still, this begs a question: If genetic testing could finger the assassin most likely to take you out, if it could reveal your expiration date, would you want to know?

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