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The verge-of-forties fears were mostly that they’d be more of my late thirties--which pretty much sucked. At 38, I was on my own for the first time in my adult life--not that I’d chosen to be-- following the “official” end of my 18-year-long marriage (which had “unofficially” ended about 2 and a half years earlier, but that’s another story). And 2000 miles away, my son went off to college. I had my job, my dog, and my books--and visions of a small and lonesome life stretching out indefinitely, except for when I considered cutting my losses, as it were.
Three years ago, I read a book called Still Alice by a neuroscientist-turned-novelist named Lisa Genova--a book I’d resisted for well over a year at that point. It’s the story of a woman with early-onset Alzheimer’s, and it’s written from her point of view. It's a very well-done novel, and it's one of the scariest books I've ever read.
Genova does a remarkable job of truly getting inside the mind and emotions of an Alzheimer's patient. She includes facts about the disease and its effects without interfering with the story, and she effectively captures its disruption and alteration of family, career, and daily life, but the fact that it's all told from Alice's perspective makes it unique and unforgettable. The instances where the author "loops" an episode by repeating its opening paragraphs at the end, and when she frames Alice's behavior with someone else's response to it, are particularly affecting.
Three years ago, my sister and I read Still Alice together. Last weekend, we participated in the Walk to End Alzheimer's, as we do every year. (Our team helped raise more than $105,000 this year!) We're involved with it because our mother, who passed away in 1999 after seven years in a nursing home, had early-onset Alzheimer's.
Still Alice gave me a lot of insight into Alzheimer’s, particularly its early-onset form, which can manifest with symptoms in people as relatively young as 50. Alice was 50. My mother was just a few years past 50 when it started for her. I have a better understanding of it now--not just the medical details, but some idea of how it may have felt for her. It was terrifying, and as I get closer to 50, it doesn’t get any less scary.
This is a case where “the more you know” isn’t necessarily all that helpful, and knowledge doesn’t afford much power. Alzheimer’s remains incurable and unstoppable; the treatments now available can only slow its terrible progression. There’s a test to determine whether someone has the genetic mutation associated with developing it--but with no means of prevention, what can you do, going forward, with any result besides “no”? At this point, I’m choosing fear of the unknown over certainty of doom--but either way, I’m afraid.
Among people in my age range, jokes about Alzheimer’s are pretty common--when we can’t find our keys, or think of someone’s name, or remember what we meant to do in the kitchen thirty seconds after we walk in. I don’t make those jokes. I’m afraid to tempt fate. I’m afraid those lapses might caused by something besides menopausal hormones or “normal” aging processes. A relative with early-onset Alzheimer’s unfavorably increases the genetic odds.
I fear that turning 50 will flip a switch, or start some sort of countdown clock. I saw what became of my mother in her fifties, and through Alice, Lisa Genova gave me a sense of what it must have felt like for her to experience it. It scared the hell out of me.
Then again, I could take after my dad--83 years old and still a piece of work. Like my divorce, that’s another story, and it raises another set of fears entirely. But in the meantime, I have 18 months before that switch flips, and I don’t want to be afraid to make the most of them.
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