Illustration by Nishant Choksi
"After some reflection, I concluded that as long as I still felt infallible Parkinson's would not stop me from continuing to pursue my dream of becoming Pope."
-- Michael Kinsley, on his two-decades-past diagnosis of Parkinson's
by Ken
I guess there are people who think about the way their mind works (or doesn't) and people who don't so much. Still, I had to pause when I read this statement in Michael Kinsley's "personal history" piece in the April 28 New Yorker, "Have You Lost Your Mind?: More bad news for boomers" (unfortunately likely to be off the newsstands now, and unfortunately only an abstract is available free online): "The tsunami of dementia that is about to swamp us, as the baby boomers age, has got plenty of attention, but the reality has not sunk in." Is this so?
Before going further, let me say that this is the most stimulating and absorbing piece I've read in a long while. I guess it's also one of the more unsettling, because of the erudite and also charming yet also unrelenting way it ventures into this -- for me, at least -- disturbing matter of the diminution of brain function. It's a follow-up to a "reflections" piece Kinsley wrote for The New Yorker six years ago, "Mine Is Longer Than Yours: The last boomer game" (April 2008). In that piece he was 15 years out from a diagnosis of Parkinson's. As he wrote then, "Even fifteen years after I got the diagnosis, my symptoms are on the mild side, though no longer undetectable." He added that his symptoms "got even milder" following a procedure he'd had a couple of years ago called deep brain stimulation, or DBS --
an operation . . . to implant wires in my brain and two pacemaker-type batteries in my chest, [to] send pulses to a particular point in the brain that . . . well, I don’t really know much about how it works. But the result is that I take fewer pills than before and have much less "off" time, when the pills don’t work.
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Quite a while back now, I ran into a friend I hadn't seen much in quite a while (I had to resist the temptation to call him "a former friend") at a concert, and he asked if I'd heard about a mutual professional colleague, somewhat older than us. I also hadn't had any contact with the colleague in quite a while, but back in another lifetime for me, I was -- in a small corner of his life -- his editor, and the immaculate lucidity of his raw copy lingers powerfully in memory.
It wasn't just that the colleague was broadly and deeply erudite, which he was, but that his mind was so consummately organized. If you had a question about something he had written, it was easy to ask, because he would understand effortlessly, and quite likely it was something he had already thought about. For the same reason it was easy to discuss a matter as humble as adding or striking a comma.
I don't remember whether I knew before my friend told me what the news was, but I certainly should have. The colleague was of the right age. As you've quite likely guessed, the news was that he had Alzheimer's. Overlapppingly my friend and I said almost the same thing. One of us said, as I recall, "Of all people," and the other said, "Of all minds."
This is, of course, a distinction that Alzheimer's doesn't make.
It was hardly a new subject for me. In the early '90s my stepfather was released from his horrible slide into Alzheimer's, and not that long afterward, my mother, after all those years of exhausting, enervating caregiving, began to express apprehension tinged with terror every time she couldn't remember something. I pooh-poohed her apprehensions, pointing out that she still remembered all sorts of stuff that I didn't. I'm sure I never relieved her apprehensions, and there was no reason why I should have. In time, even I had to recognize that she was slipping, and in more time, she had sunk into just the fog she had been so afraid of. The last time I saw her, when I went down to Florida for her 90th-birthday celebration in the small assisted-living facility where she was beautifully cared for by a saintly woman, I never knew whether she recognized me.
For a while I thought I was special with my Alzheimer's story. Gradually it came to seem that everyone I know had his or her own. Which is why I paused at that statement of Michael Kinsley's that the reality of that "tsunami of dementia that is about to swamp us" hasn't really sunk in. He continues:
We stave it off with jokes: Ronald Reagan goes in for his annual physical and the doctor says, Mr. President, I have bad news and worse news. Reagan says, Lay it on me, Doc. The doctor says, The bad news is that you have cancer. Reagan: And the worse news? Doctor: You have Alzheimer's. Reagan: Well, at least I don't have cancer.Even Kinsley acknowledges that at least some of the reality, if maybe not the "tsunami," has set in.
There is a special horror about the prospect of spending your last years shuffling down the perennially unfamiliar corridors of some institution in a demented fog, your diaper hanging loose, being treated like a child by your children, watching TV all day but unable to follow even the most simpleminded propaganda on Fox News or the most facile plot twist of "Downton Abbey."As you've no doubt calculated, if you still have some of your wits about you, six years after Kinsley's 2008 piece, he is now 20 years-plus past his original Parkinson's diagnosis, and the symptoms still seem to him relatively mild. But he is concerned enough that he has undergone a new round of testing, which could be compared against earlier tests. And while the tests confirm that he still has a high level of cognitive function, under the extended time and stress conditions of the tests, the results show that his function deteriorates, in some tests quite badly. For someone who most of his life has had such a high level of intelligence function, this is clearly distressing. But perhaps more distressing to him is the realization rather forcibly impressed on him that his opinion of his function level and of the validity of some of the tests doesn't count, precisely because of his diagnosis, his "condition."
Dementia seems like an especially humiliating last stop on the road of life. There's no way to do it in style or with dignity. And you can't be sure that you're going to avoid it until the moment something else, like cancer or a big, big truck, comes along to carry you off first.
Baby boomers -- the seventy-nine million Americans born between 1946 and 1964 -- will be the second dementia generation, but the first to know that it's coming. Our grandparents generally died too young or too poor to worry about what used to be called "senility." They didn't provide much in the way of foreboding for their children, who are our parents. For us, however -- the boomers, now in our fifties and sixties -- ways of dealing with infirm and often mentally impaired parents is one of the top five subjects of conversation.
As he already wrote at the top of the new piece:
"Write about what you know," the creative-writing teachers advise, hoping to avoid twenty-five stories about robots in love on Mars. And what could you know better than the inside of your own head?Already in 2008 Kinsley wrote:
Almost anything. And almost anyone else is better positioned than you are to write about the foreign land between your ears. You are the person least qualified to be writing about changes in your own brain, since you need your brain to comprehend those changes. It's like trying to fix a hammer by using the hammer you're trying to fix.
Without getting into robots on Mars, I remember vaguely, from the nineteen-sixties, a comic-book tale about some residents of our three-dimensional world who go through a hole in space, or something like that, and find themselves living in two dimensions. "And nothing's changed," one says, triumphantly, unable to see what we can see: that he is now the approximate shape and depth of a postage stamp. Maybe this is what the descent into dementia is like: everyone around you knows or suspects you have it, but to yourself you seem the same.
Sometimes I feel like a scout from my generation, sent out ahead to experience in my fifties what even the healthiest boomers are going to experience in their sixties, seventies, or eighties. There are far worse medical conditions than Parkinson’s and there are far worse cases of Parkinson’s than mine. But what I have, at the level I have it, is an interesting foretaste of our shared future—a beginner’s guide to old age.In 2014, the new New Yorker piece itself is the most vivid testimony to the continued high level of Kinsley's function. Of course as a writer he doesn't have to be overly concerned about the questions of endurance and fatigue that emerged so alarmingly in the recent round of testing. Presumably he can pause and return to a piece as often as he needs to, and can still produce at a level that we can confirm for him -- since his opinion is no longer accorded significance by the doctors -- is indistinguishable from that of the writing he has produced in the past.
Many of the symptoms of Parkinson’s disease resemble those of aging: a trembling hand, a shuffling gait, swallowing—or forgetting to swallow, or having trouble swallowing—a bewildering variety of pills. Of the half-dozen or so main Parkinson’s drugs, the most effective by far goes by the trade name Sinemet. Its principal ingredient is levodopa, a chemical that turns into dopamine in the brain. Levodopa works differently for different people, and often stops working or develops intolerable side effects. But for me right now Sinemet’s effects last about four hours. During those four hours, I go through the whole cycle of life, or, at least, the adult part. I take a pill and shortly feel as if I am twenty. My mood is sunny and optimistic, I move fluidly, I’m full of energy—I don’t know whether to go out and run a couple of miles or finish that overdue book review. This feeling lasts for a couple of hours, then it starts to wear off. Another half hour, maybe, and I’m back where I belong, in middle age. Half an hour after that, I’m feeling old, stiff, tired, and gloomy. Then I pop another pill and the cycle starts all over.
But already in 2008, again, he wrote:
This terror of being written off prematurely (like being buried alive) makes it difficult to write about a medical condition that may linger and get worse slowly for decades while you try to go about your life like a normal person. People say, in all kindness, “Hey, you look terrific,” which leaves you wondering what they were expecting, or how you looked the last time you saw them. They seem taken aback that you are around at all. The first time you hear or read a casual reference to “healthy persons,” it is a shock to realize that you are permanently disqualified for that label. And then you realize—even more shockingly—that you’re the only one who’s shocked. Everyone else has adjusted, reassigned you, and moved on. Even if you feel fine, you walk around in an aura of illness.For anyone who has already been pondering that "tsunami of dementia that is about to swamp us," and perhaps even for those who haven't been, I can't recommend the new piece highly enough. Kinsley is a terrific, even dazzling, writer, and his charm is irresistible, an invaluable attribute as he insists on dragging us through some emotional terrain that most of us would do anything in our power to resist.
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