by David Shenk
Mother has for some time referred to herself in the third person. Usually this happens when we have been talking about her for a little while. She will ask a question that fits right in to the conversation, but begins, “Does she …” If I ask to whom she is referring, she’ll answer, “That woman we have been talking about.”
There are also lots of double people here. My husband is “the boys. “My daughter’s friend, who came over so I could go to a support group, was just one person when she walked out the door, but within fifteen minutes was two! I am a different person in the morning, afternoon, and night, which is logical considering that she thinks she’s living (and working) in an institution. She was a nurse, so three shifts, right? Sometimes I’m different within the hour: “I can’t go to the store with you because that other girl is taking me somewhere else.”
—M.A.J.
Nampa, Idaho
Chapter 13
WE HOPE TO RADIO BACK TO EARTH IMAGES OF BEAUTY NEVER SEEN
In a short story by Jorge Luis Borges, a group of elite mapmakers are given an inherently unrealizable task: to create a map of the empire that is on the same scale as the empire—a map as big as its subject matter. Analogous is the challenge Morris Friedell took upon himself after receiving his Alzheimer’s diagnosis. He wanted to unravel the mystery of a brain disease just as this disease was unraveling him. He wanted to study his own undoing.
In a sense, he’d been preparing for this project for most of his life. His college courses focused on human dignity and what he called the “social psychology of affliction.” Now, in his unexpected new role among the afflicted, he could test the practicality of his ideas.
Shortly after his diagnosis he wrote a short essay entitled “Introduction to Myself and My Plight.” The essay concluded:
I hope to be able to contribute to existential philosophy from a unique perspective. Perhaps, as my selfhood diminishes, I can add to the general human understanding of matters such as “self” and “time” and “nothingness.” With this orientation I can perhaps make my slow dying a final Intellectual and esthetic adventure.
When I was In my early teens in the 1950s I avidly read science fiction by Robert Heinlein and Arthur C. Clarke. I fantasized being an “astrogator.” We collide with an asteroid, there is not enough fuel to get back to earth. We turn the ship straight away from the sun, we voyage out beyond the orbit of Pluto. We know we will perish in the interstellar void, yet we hope to radio back to earth images of beauty never seen as well as valuable information.… On August 19, 1998, my neurologist told me [Alzheimer’s] is what the PET scan indicated. And here I am on that spaceship.
It wasn’t long before he sent back his first dispatch, about a surprising advantage he discovered in forgetting. With less of a grip on what happened two hours or ten minutes ago, Morris reported feeling dramatically more involved in the present. “I find myself more visually sensitive,” he said. “Everything seems richer: lines, planes, contrast. It is a wonderful compensation.… We [who have Alzheimer’s disease] can appreciate clouds, leaves, flowers as we never did before.… as the poet Theodore Roethke put it, ‘In a dark time the eye begins to see.’
“So many of us go through life like tourists with a camera always between our eyes and the world,” Morris observed. Alzheimer’s won’t allow that sort of detachment. Like H.M. from the 1950s, the short-circuiting of memory forces every Alzheimer’s sufferer to be always in the Now. This is widely regarded as one of the horrors of the disease. But from his firsthand experience. Morris argued that being perpetually in the Now has an upside. It leads to an actual heightening of consciousness. “I can watch kittens playing in a way I couldn’t before,” he said.
How could a neurological disease enrich awareness?
All of waking life is a stew of familiar and unfamiliar experiences; it is the brain’s job to turn the unfamiliar into the familiar. Familiar sights, sounds, and ideas don’t demand as much energy or attention, and can elicit quicker and more graceful responses. Thanks to familiarity, a person can do many things at once, and even process relatively complex ideas almost completely in the background, without having to bother the conscious mind.
New experiences, by contrast, demand conscious attention, so that they may be examined, understood, contextualized, reacted to, memorized, learned. Think of learning to play the piano or to ride a bike; think of the first time you went to a baseball game or ate sushi. The unfamiliar demands focus, greedily occupies consciousness. Confronting the new is a captivating, exhausting experience.
Alzheimer’s keeps things new. After onset, the unfamiliar can never become familiar. The Alzheimer’s mind is constantly flooded with new stimuli; everything is always in the moment, a rich, resonant, overwhelming feeling. “I’ve noticed that I have a large amount of appreciation for whatever I’m focused on,” commented fellow Alzheimer’s sufferer Laura S. in response to Morris’s declaration. “It is very clear and real. Look away and it is gone. Look back and it is fresh and new. I am checking this out with a red geranium blossom right now. When I look away, ‘red’ no longer exists except as an abstract term. No blossom image remains.… But I can look again.”
Ever-freshness, then, may be considered an Alzheimer’s consolation prize. This may be a particularly difficult idea for caregivers to swallow because their own experience is often precisely the opposite. As their forgetful loved ones repeatedly stumble over the same tasks and information, caregivers must suffer through the oppressive repetition. They repeat the same mind-numbing instructions over and over again. Life threatens to become less and less fresh in the way that a tour guide quickly loses any real enthusiasm and interest in the material that she must repeat twelve times a day, five days a week. In the often deadening, disheartening world of Alzheimer’s care, caregivers wake up thousands of days in a row facing the same tourist wanting to take exactly the same tour.
Still, caregivers must try to understand both the frustrations and the unexpected benefits of having an unraveling mind. What they may at first presume to be a uniformly awful experience for the victims can sometimes perhaps be peculiarly satisfying and even enriching—“a final intellectual and esthetic adventure.”
In the late 1970s, close friends of the master Abstract Expressionist painter Willem de Kooning began to notice that he was having trouble remembering names and recent events, and following the thread of conversations. At the time, de Kooning was trying to escape from a decades-long dependence on alcohol, and the memory problems were assumed to be acute side effects of his difficult recovery.
It turned out that the forgetting was not the end of his alcoholism; it was the beginning of his Alzheimer’s disease. He recovered his strength and, with the aid of friends, family, and a drug called Antabuse—which nauseated him every time he tasted alcohol—managed to stay on the wagon. But his forgetfulness grew steadily worse. Slowly, over nearly two decades, he unraveled entirely. His estranged wife, Elaine, who came back into his life in 1978 and became the chief architect of his recovery from alcoholism, eerily predicted the course of his later years in a frank lecture she gave him that same year.
“Bill,” she said. “Your genes are sensational. Your mother lived to be ninety-two and was strong as a rock. Your father lived to eighty-nine, your grandmother to ninety-five. So your body’s going to last, but your brain is going to go. You will be a vegetable.”
“You’re scaring me,” de Kooning replied.
“Good,” said his wife.
By 1983, five years later, he was forgetting so much that he started to experience moments of genuine confusion. On a transatlantic flight from New York to Amsterdam that year, de Kooning turned to Elaine in the middle of the in-flight movie and said, “This is a lousy film. Let’s get out of here.”
When his wife gently reminded him they were not in a New York cinema but on a plane to Europe, de Kooning revealed an even deeper confusion. “This is terrible,” he said. “They’ll find out I left the U.S., and they’ll ne
ver let me back in again.” De Kooning had originally come to the U.S. as a stowaway in 1926, and had not become an American citizen until 1961. Now, on the plane to Amsterdam in 1983, he was stuck in an old awareness, a sense of himself that had long since expired.
Such a time regression is common for Alzheimer’s sufferers in the confusional stages; quite often, they find themselves jerked back so forcefully to earlier memories that they expect spouses to be young and parents to still be alive. They might also think of themselves as younger looking, failing to recognize their own faces in the mirror. All of this happens because relatively fragile memories from recent years have dissolved, leaving only much older, more durable memories. While a memory formed forty years ago is not inherently more resilient than one formed four years ago, older memories of childhood playhouses and wedding vows have become more durable through thousands of recollections in the intervening years. Since the act of remembering itself creates a brand-new memory of that memory, the most powerful images from childhood and early adulthood get replayed over and over again in a person’s mind and thus become virtually indestructible by the time a person reaches his seventies. Those seasoned memories are as durable as limestone, while the more recent are still relative impressions in sand.
De Kooning, remarkably, kept painting. In fact, as he recovered from his drinking problem, he commenced in 1981 what would turn out to be one of the most productive, if also controversial, periods of his career. De Kooning not only produced an extraordinary 341 paintings over a ten-year period, but created work that has since received high critical praise—even given the general awareness of his dementia.
The paintings from the 1980s are, in many respects, very different from his earlier work. They are more melodious, graceful, and far less dense. Overall, they seem happier, far less angst-ridden, than his more famous creations. In contrast to his previously complex color palette, premixed with great care, de Kooning came to rely heavily on primary colors pulled straight out of the tube. In contrast to his thickly layered paintings from before, these late works have a lot less texture. The strokes are less animated, more relaxed; the dominant form is a bright, ribbonlike weave vaguely suggesting human curves and natural landscapes. Blank space takes a more prominent role in these late paintings—“like a blank mind picturing itself,” observed art journalist Kay Larson.
“There is no question in my mind that it’s an extraordinary body of work,” San Francisco Museum of Modern Art curator Gary Garrels told Larson in 1994 as he organized a major exhibition of the eighties work. “There is intense concentration and consciousness in these paintings. They are not just someone spreading paint around. This is definitely an artist in control.” Garrels went on further to say that many of de Kooning’s works from this period are “among the most beautiful, sensual, and exuberant abstract works by any modern painter.”
Critics took special notice of the 1995 Garrels exhibition because they had, by 1980, more or less written de Kooning’s artistic obituary—one which included an especially unflattering final chapter. “Anyone who remembers the [1983] Whitney [retrospective] exhibition knows there are acres of sloppy, slack, fizzled paintings from the sixties and seventies,” wrote Larson. “Nobody had a reason to think the eighties would be different.”
But this new work, everyone agreed, was very different from previous periods. “The effect they gave was one of lightness and joy,” Curtis Bill Pepper wrote in the New York Times after seeing a collection of de Kooning’s latest paintings in the early 1980s. “It was an old man’s lyrical elegy distilled from the turbulent recesses of the self.”
Pepper did not mention that a metabolic process in de Kooning’s cerebral cortex was radically redefining his “self.” What was taking place in that Long Island studio was much more than a personal resurgence; de Kooning was documenting on canvas his own progressive forgetting.
Was he really a happier man? It’s entirely possible. Alzheimer’s can be severely frustrating to patients at certain periods, but can also leave its victims extraordinarily serene. The patient loses the awareness of what he has lost. He has fewer thoughts, fewer worries. Life is not as complex or demanding. In this sense, Emerson was speaking hopefully on behalf of all Alzheimer’s sufferers when he said, “Things that go wrong … don’t disturb me,” and “I have lost my mental faculties but am perfectly well.”
When, in the 1990s, the art community finally got to see the eighties work as a whole, now very aware of de Kooning’s slide into dementia, there was a flood of interest in the paintings and curiosity about what they meant. Inevitably, a debate ensued about their artistry, their importance, and their connection to the artist’s previous work. Ultimately, these were subjective judgments, of course, but it was only natural to wonder if de Kooning had maintained his greatness-throughout illness. Were his late works genuinely a part of the oeuvre of one of the most important painters in the twentieth century, or should they instead be thought of as works by a once-great artist now “on autopilot,” without any fresh ideas or even any ideas at all?
This was not just an academic question. Millions of dollars and the reputations of many collectors, curators, gallery owners, and critics were riding on the answer. The stakes were so high that in 1995 the San Francisco MOMA’s Garrels assembled a panel that included the painter Jasper Johns and directors of several major modern art museums. (De Kooning was in the final stages of his illness at the time, no longer painting; he died in 1997.) Over two days, they reviewed and discussed scores of the late paintings, and considered some fundamental questions:
Should current works be judged as a group or individually?
Should they be judged purely on their own merits or in comparison to prior work? If the latter, how much familiarity with de Kooning’s past was necessary to make sound appraisals of this work?
Should the viewer’s own expectations play a role?
Should de Kooning’s intentions be taken into account? If so, how could one best discern his intentions?
These were all formal and polite ways of poking at a very uncomfortable question: Could this new direction of work legitimately be seen as an extension of de Kooning’s provocative career, or had he lost his artistic spark along with his functioning hippocampus? It is an impossible question to answer fully, of course, but still one well worth asking. The insidious creep of Alzheimer’s erases the self in such tiny increments that trying to determine any sort of distinct cutoff point approaches the paradoxical quality of a Zen koan. What is the sound of fewer neurons firing?
One factor in sizing up the effect of Alzheimer’s on the artistic process is the distinction between mind memory and muscle memory. Mind memories are formed in association between the hippocampus and the cerebral cortex, stored in the cortex, and are highly vulnerable to sugesstion, to the vagaries of time, and to the plaques and tangles of Alzheimer’s disease.
Muscle memory, also called procedural memory exists as an entirely separate neural network in different regions of the brain. These are the unconscious, but exquisitely detailed, movements that a person makes when walking down the stairs, riding a bike, playing the piano, typing, clapping, painting, kissing. Muscle memories are much harder to lay down than mind memories—they take practice, practice, practice. But once ingrained, they are also far more difficult to erase. Notice that even victims of extreme amnesia do not “forget” how to walk. It takes a stroke or some other traumatic brain injury for muscle memories to be disrupted. Doctors were interested to discover that H.M., whose ability to form new mind memories was immediately and forever removed along with his hippocampus, could in fact develop new coordination skills—even though he was never actually aware of the new skills he had.
In the same way as H.M., Alzheimer’s sufferers generally retain complete muscle memories until the very late stages of the disease, when the plaques and tangles finally creep into virtually every area of the brain. This steady erosion of intellectual capacity without noticeable physical disruption is wh
at sparks public fascination with the disease in the first place, and haunts even the most seasoned observers. Even for people who spend years immersed in the culture of the disease, it is positively ghostly to be in the presence of a man who for several years has not recognized his wife but who can still walk or sing or even dance a waltz.
Or paint. We know, both from firsthand reports of de Kooning’s studio assistants and from the closely studied patterns of Alzheimer’s disease, that de Kooning’s signature brushstroke did not erode at the same time that he had trouble remembering what he had eaten for breakfast. His muscle memory remained intact for a long while, and the act of painting remained important to him. People who spent time with him during his long period of forgetting say that his sagging posture and lethargic manner abruptly shifted into an erect, energetic, passionate professionalism whenever he walked from his kitchen to his adjacent studio.
What was ebbing slowly in de Kooning’s brain was a refined cognition and a capacity for lucid discourse. He could no longer manage his practical affairs, engage in sophisticated conversation, or socialize on any significant level. Many years before he was forced to stop painting, he became effectively cut off from the world around him, losing the ability to discuss his work intelligently or consider it in the larger context of society and art history.
From a certain creative standpoint, such forfeitures might not be considered a liability. After all, artists are not analysts. To the contrary: Every creator knows that thinking can disrupt creativity. “Art … is not cognitive,” Israel Scheffler wrote in his book Symbolic Worlds, “but rather emotive in its import. Its function is to stimulate, express, or vent emotions rather than describe reality.”
Throughout his long career, de Kooning had not relied on elaborate conceptualization in the same way, for example, that Andy Warhol had to create his Campbell Soup silk screens or Georges Seurat had to create his painstaking pointillist Sunday Afternoon on the Island of La Grande Jatte. “De Kooning was never a very intellectual painter,” wrote Kay Larson. “Even in the beginning, in the Women [series], in Excavation, his talents emerged from the moment—from the thrust and parry of the brush, from the ‘excavation’ of his emotional state.”