The Man Who Wasn't There: Investigations into the Strange New Science of the Self (8 page)

Pia Kontos is not comfortable with claims that Alzheimer’s patients ultimately have no self. She argues that even in the face of severe cognitive decline evident in Alzheimer’s patients, a form of selfhood persists, a precognitive, prereflective selfhood that’s embedded in the body. She takes her inspiration from French philosopher Maurice Merleau-Ponty and French sociologist Pierre Bourdieu. “Bourdieu and Merleau-Ponty help [us] think about what the body brings to our engagement with the world that doesn’t rely on cognition,” she told me.

She has seen examples of such “embodied selfhood” in her research in long-term care settings with people with Alzheimer’s disease. One particular observation—of an elderly male resident who was severely cognitively impaired and spoke only in single words, often nonsensical—left a deep impression on her. One day, on Simchat
Torah, a Jewish high holiday to celebrate the Torah, the residents went to the synagogue in the long-term care home. The old man stood in line, waiting to be called to the bimah (pulpit) to sing the prayer. “I saw this gentleman get up in the lineup, and I remember my whole body clutched,” said Kontos. “This is going to be a disaster, I thought, because he can’t put two words together.”

What followed stunned her. When his name was called out, the man confidently walked up to the bimah and recited the prayer with utter proficiency. One could argue that there was some cognition still intact in him that allowed him to do so. But Kontos thinks otherwise.

“The way that I have analyzed it is that there was an orchestration of an event there. There was the touch of the Torah, the presence of the rabbi, the presence of all the congregants, and that elicited in him what Bourdieu has termed ‘habitus,’ but I term ‘embodied selfhood,’ and it enabled him to perform in that moment,” Kontos said. “If you took that gentleman to his room and asked him to recite the prayer, he couldn’t do it.”

Embodied selfhood is “
the idea that bodily habits, gestures, and actions support and convey humanness and individuality.” Merleau-Ponty argued that we are all born with a primordial body that is capable of engaging with the world. “
Nothing human is altogether incorporeal,” he wrote. He took as an example the skill of touch-typing. If you are a capable touch typist, then typing for you is an activity that does not require you to think about the location of keys on a keyboard. “
Knowledge of typing,” Merleau-Ponty argues, “is in the hands and manifests itself only when bodily effort is made and cannot be articulated in detachment from that effort.”

Bourdieu extended the role of the body beyond its primordial capacity: the body, he said, incorporates our social and cultural habits.
This is what gave rise to the name “habitus.” “
Habitus comprises dispositions and forms of know-how, which function below the threshold of cognition and are enacted at a prereflective level,” writes Kontos, where a disposition is “
a way of being, a habitual state . . . a tendency, propensity, or inclination,” according to Bourdieu.

Kontos combines Merleau-Ponty’s primordial body with Bourdieu’s habitus to come to her notion of embodied selfhood. “We all have embodied selfhood; you have it, I have it. It’s just that when our cognition is intact, it goes unnoticed; it is sort of in the background. But when we have cognitive impairment, it comes to the foreground,” she told me. “This prereflective ability to engage with the world becomes even more important in the face of cognitive impairment because it becomes the primary means of engaging with the world.”

Embodied selfhood is blurring the distinction between body and mind; it gives the body its due in making us who we are. Thanks to Descartes, Western neuroscience had elevated the mind, demoting the body to being a mere container, and while neuroscience has slowly distanced itself from Descartes and done away with a stark split between body and mind, the legacy of centuries of such thinking still leads us astray when we attribute to Alzheimer’s patients a total loss of self. “Because of Cartesianism, and this constant devaluation of the body, what happens is that when we lose cognitive ability, people jump very quickly to the assumption that there is no self,” said Kontos. “But there is still this fundamental dimension of our existence that persists.” If we drop Descartes’s legacy entirely, and stop distinguishing between body and mind, a new perspective on the self begins to emerge.

So, embodied selfhood involves the brain
and
the body, but in a way that does not necessarily involve cognition. The brain is broadly divided into three physical regions: the cerebral cortex, the cerebellum,
and the brain stem. The cerebellum plays a significant role in procedural memory and in coordinating how our bodies move, and it survives more or less intact until the very late stages of Alzheimer’s disease. So, even as the cerebral cortex atrophies and cognition declines, some parts of the brain-body complex continue to store and play out aspects of our selfhood.

Another person living with Alzheimer’s disease drove home this message for Kontos. She was an elderly woman, with cognitive impairment so severe that she could not speak, or even dress or feed herself, and was confined to her wheelchair. She was also incontinent. When the nursing staff would wheel her to the dining room and put a bib on her (institutional policy to prevent patients from soiling themselves), she’d struggle to reach under the bib and pull out a string of pearls that she wore, and rest it on top of the bib, where they could be seen. “She’d never begin her meal until she did that,” Kontos told me. “She emerges from the depths of dementia with a very strong presence. If that’s not self-expression, I don’t know what is.”

But the making of a complex narrative selfhood (cognitive or embodied) might involve something even more fundamental: the ability to simply be the subject of an experience. When I met Allan, it was clear that despite his incoherent storytelling, he still was someone who was experiencing his own scrambled narrative. It’s possible that during the very late stages of Alzheimer’s disease, when one’s narrative self is completely destroyed, all that is left is the self-as-subject, experiencing those aspects of the self that exist even before a narrative forms. One could argue that the self at its most fundamental is the self-as-subject, and it’s not one’s narrative. Who or what is this self-as-subject? Sadly, those in the grips of the disease cannot communicate what it’s like to be without a narrative—and it’d be too cruel to ask.

We have to turn to clues from elsewhere to understand the basis of this subjectivity. For example, for touch-typing to become an embodied ability and a part of my extended narrative self, do I need to feel the touch of a key at my fingertips and know that
I touched the key
, as opposed to feeling as if someone else was doing it? Or, for that matter, don’t I need to feel that my fingers are
my own
? These might seem like outrageous questions, but the next chapter will show that something we take for granted—ownership of body parts—can be disrupted, in experiments and pathologically. When it’s the latter, the consequences can be unimaginably dire.

Billy Joel’s “It’s Still Rock and Roll to Me” is playing on the car radio as I pull into the parking lot of the assisted-living facility to see Clare’s father. “
What’s the matter with the clothes I’m wearing / Can’t you tell that your tie’s too wide
?” The California afternoon sun is hot, accentuated by my car’s barely functional air-conditioning. Clare is waiting outside the building for me. She punches a security code to enter, a precaution not to prevent outsiders from entering, but rather to keep the residents—mainly patients with Alzheimer’s—from wandering out, which they tend to do. We walk down the corridors, past her dad’s room (a sign wishing him a happy birthday when he turned ninety last month still hangs on the door). A couple of elderly ladies smile at us and one says, “Good morning.” After a moment’s pause she adds, “Or good afternoon, I don’t know.” I can’t tell whether she’s indulging in some inside humor or not. Either way, it imbues the place with a tender resilience.

We go to see Clare’s father in a large hall. It’s a scene I have seen only in movies. About twenty men and women, all elderly, are sitting,
some slumped over, some relatively alert. A television set is playing a movie, loudly. It’s a recent Michael Caine movie (
Last Love
, I find out later). Clare points to her dad—he’s sitting in his own chair, which Clare’s mother had brought over so that he’d be more comfortable than in the standard-issue chairs. He is asleep. Clare walks over and gently nudges him. “Dad, Dad,” she says. He wakes up perturbed, agitated. Clare reaches for his hands, but he angrily swats at her hand. She tries again to hold his hand, and he reaches out in a handshake gesture, only to twist her hand. She pulls away. He’s clearly upset at being woken up. We leave him for the moment and go to his room.

Clare has a key to enter her dad’s room—the rooms are locked because otherwise the patients would go around opening doors and entering. The room is simple and sparse. Framed pictures hang on the walls, reminders of Clare’s father’s life. There’s one of him looking handsome at the wheel of a sailboat. There are many family photographs. On the table is a scrapbook made of colored construction paper, the kind a child would make. It’s actually something Clare’s sister has made for their dad—a simple storybook of some key moments in his life: a photograph of him when he was seventeen; Clare’s dad and mother signing the marriage register in Europe; their fellow rowers holding up their oars to form an arch for the bride and groom to walk under as they come out of the church; the family at a beach in Morro Bay, California, after they had come to America—Clare and her sisters are little girls; their home in Minnesota, where Clare grew up; building a barbecue pit at home (one of the few times Clare’s dad actually worked with his hands); Clare’s dad on the cover of his company’s magazine, pictured as a captain on a boat; a trip during a wedding anniversary, around when he turned seventy; and a photograph
of Clare’s dad from ten years ago. “There’s been a tremendous decline since then,” says Clare.

Clare’s sister’s attempt to jog her father’s memory, to give him back his narrative, his coherent story, his self, with this scrapbook hasn’t made much of a difference as far as Clare can see.

We go back to see Clare’s dad. This time he lets Clare hold his hand briefly. He even squeezes her knuckles. Clare blows a kiss at him, and a few kisses later, he smiles and does the same. I turn to Clare and ask if that means he recognizes her. She says she doesn’t know. He hasn’t said a word. There’s no way to tell. I too try to shake his hand; he doesn’t respond at first, but then for a brief moment, he smiles and shakes my hand firmly. He then squeezes my knuckles too. There’s no way to tell.

Or maybe there is. For Clare, the knuckle-squeezing takes her back to childhood, when her dad would do that to her playfully. It would make her wince. “‘Ha-ha-ha, little joke,’” he’d say, Clare recalled. Could it be that somewhere in that body, Clare’s dad still persists—a fragment of his self, a memory, a strong, strapping man still playing with his daughter?

About a month and a half after I met Allan, Michaele took him to check out a board-and-care home. Allan had been incontinent for days, suffering from severe diarrhea. Michaele had spent sleepless nights changing sheets and giving Allan numerous showers. Realizing that they needed help, she drove Allan to visit the care home, which was beautiful, with a nice backyard full of trees overlooking a park. Allan seemed to like it. As they were driving away from the home, Michaele said to him, “Do you think you’ll be OK there?” To her surprise, he answered, “I think it’s nice, it’ll be nice.”

He said it with such lucidity that Michaele was immediately guilt-stricken. “Oh, Allan, I feel terrible. I’m going to miss you so much. It’s so hard for me to do this. But I know I can’t keep going on,” she told him.

“That’s OK,” he said. “We will always be connected no matter what happens.”

“That blew me away,” Michaele told me. “His ability to communicate with me so clearly that day was phenomenal. He got very quiet again. But I just felt so close to him that day.”