That’s how Swift’s Lemuel Gulliver described the Struldbruggs, a race whose members live forever but lose their mental faculties in their 80s. Horribly prescient, Swift had witnessed an uncle’s memory loss and was sure that the same thing would happen to him. It did.
“They can never amuse themselves with reading, because their Memory will not serve to carry them from the Beginning of a Sentence to the End.”
Powerless to help, I watched my mother-in-law struggle to read a newspaper article, her eyes anxiously and repeatedly darting back to the top of the page. Jonathan Swift, I realized, had not only been horribly prescient about the ravages of memory loss; he’d been absolutely, horribly precise.
The medical vocabulary describes Alzheimer’s as a disease of “insidious onset.” Insidious is a good word for a disease that begins so slowly and stealthily — “treacherously,” my dictionary says. Sufferers don’t forget everything at once: long-term memories (like my mother-in-law’s disapproval of my easily-stained hall carpeting) may remain untouched for years.
The old memories stick because at first Alzheimer’s doesn’t hinder memory retrieval. Instead — like Leonard in the recent film “Memento” — the Alzheimer’s sufferer can’t make new memories. Here’s how Shenk describes memory formation in the normal brain: “Each notable experience causes a unique set of neurons to fire in conjunction with one another. As a result, these connections become chemically more sensitive to one another so they can more easily trigger each other again. With that unique constellation of synapses, one has created a permanent physical trace of the original sensation.”
A memory is a physical trace, but not like the linear procession of ones and zeros marching across my hard disk as I type this. Memory is branching, multidimensional, a dense web of association and combination. Shenk reminds us that Memory was the mother of the muses — as though the arts had derived their multiplicity of techniques from her.
The normal memory is in a state of constant, imperceptible revision: Impressions are perpetually rewritten, exhaustively reworked. Old memories are durable because we’ve revisited and remade them every time we’ve experienced a related perception. They can be untrustworthy in a court of law because we’ve sifted and summarized them so extensively, perhaps integrating a chance resemblance or fortuitous suggestion. We even reshape them by selective forgetting, cutting back a tree here or there in order to keep the forest in view.
Sensations don’t go directly or easily into the brain’s long-term memory matrix. Short-term memory enables us to learn — to negotiate the new and unfamiliar, juggling them until we can fit them into our permanent data store. As we get older we sometimes have to make a conscious effort to remember something new, perhaps effectively “underlining” it in our short-term memory buffer by writing it down. But for an early Alzheimer’s sufferer, such efforts often fail. Malformations (“plaques and tangles”) have grown within the brain’s cortex, impeding the neurons’ initial firing, interfering with short-term memory creation.
Still in the early stage, my mother-in-law is pretty content right now: Friendly home health aides help her with the laundry and shopping, get the mail and tell her when to take her pills. A geriatric care manager makes sure the aides arrive on schedule and that prescriptions are refilled. My husband oversees her bill paying; my adult son balances her checkbook; I replace her clothes as they wear out. It takes a village to do the work of one normal brain, but for now she likes living in the jerry-rigged village we’ve built at the upper tip of Manhattan. She’s always wanted us to call every day and now we do. I’m not sure what my husband discusses with her, but she and I often happily revisit my home-decorating misadventures. She’s lost her impatience with my blunders, and I’ve begun to rather cherish them.
The future will doubtless be a lot tougher. As Alzheimer’s progresses — slowly, over years — the plaques and tangles spread and memory attenuates until, late in the second stage, identity itself is obliterated. In the final stage the brain “forgets” how to regulate basic body functions like swallowing.
“And I’m at risk for it, you know,” my husband commented. “But by then,” I replied — much too quickly — “there’ll be a cure. Or … or therapies. Something.”
Researchers do talk about the possibility of a cure — it’ll be here in 10 years, one of them tells Shenk exultantly. Responding to the prospect of millions of octogenarian boomers wandering around on a last long strange trip, Alzheimer’s research is well funded and promises rich rewards. Scientists are making progress: There are now a few drugs on the market that stimulate memory for a limited period, even as the disease continues to ravage the brain.
Shenk describes the research — theory, technique and furious rivalries between contending schools of opinion — in vivid, laypersons’ language. He goes further as well, to speculate on the limits of the human lifespan itself.
Little-understood environmental factors aside, the reason Alzheimer’s is so common nowadays is that we’re beginning to live on what biologists call “manufactured time.” Inherited traits that would have prevented us from reaching the age when we’re most likely to reproduce have been winnowed out by natural selection. What happens to us in our later years, however, doesn’t affect our chances of reproducing. And so diseases rarely seen before the 20th century have become more common as science has created new ways to keep us alive into our 80s and beyond.
Far beyond, perhaps: “I am now working on immortality,” Shenk quotes a biologist interviewed in the pages of Wired. Is this for real, I asked a friend who follows these developments. Oh yes, she told me, “Immortality is their killer app.” Not a bad reply, I thought: The Delphic Oracle would have relished the paradox.
But then, scientific innovation is often veiled in paradox. Wondrous improvements exaggerate intractable old problems. Longer lives remind us of ancient questions of how to live well. And high-tech solutions do little to untangle the riddles of social and family life, care and responsibility.
For some answers to these questions, Shenk looks to contemporary Alzheimer’s sufferers and their families and looks back to some real and imagined forebears. Although relatively few people lived to be very old before the 20th century, aging and senility have appeared in literature and mythology since the earliest times. After the Egyptian sun god Ra created the universe and all the other gods, he became old and senile, easy prey for usurpers. The notion of body outlasting mind and identity speaks not only to our astonishment at our mixed, mysterious natures, but to our fears about the limits of love and obligation.
“King Lear” is of course based on ancient legend, but according to Shenk, it’s only in Shakespeare’s version that the king enters a senile fog. Shenk speculates that Shakespeare might have been inspired by the case, two years before “Lear” was first presented, of a wealthy courtier who began publicly losing his wits. His oldest daughter, Grace, sued to have him declared a lunatic so she could take over his possessions; his youngest daughter, Cordell, succeeded in placing the estate in the custody of a loyal friend, ensuring “that he would have the most comfortable and dignified descent possible.”
Financial worries (and sometimes conflicts) will plague many families, but it’s the nature of mind and memory itself that makes Alzheimer’s so difficult for caregivers. Novelty stimulates the brain while redundancy numbs it. And yet, as Shenk says, “As their forgetful loved ones repeatedly stumble over the same tasks and information, caregivers must suffer through the oppressive repetition.” Order and category are natural and necessary, but sometimes a caregiver must sacrifice them. This quote that Shenk found in a caregivers’ listserv seems to me a small but remarkable achievement of the spirit: “I no longer scolded her but thanked her for bringing the frying pan into the bathroom. After that, life changed very much for the good.”
Shenk found evidence of a more ambitious spiritual quest on the same online discussion group: One of the caregivers, Morris Friedell, had himself been diagnosed with the disease. Friedell, a sociologist, used to teach a course called “Human Dignity,” examining the Holocaust and the work of authors like Martin Buber and Elie Wiesel.
Friedell is a pioneer, a sort of astronaut, part of a new class of Alzheimer’s sufferers who are developing the disease in full knowledge, “diagnosed,” as Shenk observes, “so early as to still be able to speak for themselves, to eloquently describe their experience, and to champion their rights.” The essays — personal and theoretical — on Friedell’s Web site combine a breadth of research on the brain and disability with a lifetime of study about humanity in extremis. Friedell says that in person he’s not so coherent anymore, but I found his writing profoundly articulate and thought-provoking, smart, humorous, humane and helpful. Consistently inspiring and not at all “inspirational,” Friedell continues, through his writing and by example, to teach the subject of “Human Dignity.”
We’re fortunate, these days, to have firsthand guides like Friedell, brilliant caretaker-memoirists like John Bayley (“Elegy to Iris”), and compassionate chroniclers like David Shenk. Of course no one will stop hoping fervently for a cure — and I don’t know if the lessons gained from suffering ever justify the suffering itself. Still, it wouldn’t be so bad if an understanding of Alzheimer’s made its way into the general culture. As perhaps it’s beginning to do.
Certainly we think a lot about memory these days: “Memento” has a devoted cult following; a surprising number of people are attempting Proust’s huge, slow meditation on memory, “In Search of Lost Time.” Shenk finds Alzheimer’s compelling because the gradual pace of deterioration “causes us to experience life’s constituent parts and understand better its resonances and quirks.” Imagining death is difficult, but Alzheimer’s forces us to try: “What is usually a quick flicker,” Shenk writes, “we see in super slow motion, over years. It is … perhaps the most poignant of reminders of why and how human life is so extraordinary.” Which, in a culture of quick fixes and killer apps, wouldn’t be such a bad thing to remember.