The Man Who Wasn't There: Investigations into the Strange New Science of the Self (5 page)

In the face of Alzheimer’s, Allan’s sharp intelligence and his cerebral personality became a double-edged sword. “The thought of him losing his brain was the most horrific thing because that’s the thing he valued the most: his brain, his intelligence,” Michaele said.

“
Alzheimer’s disease robs you of
who you are
. I don’t think there’s any greater fear for a person than to think I’ve lived my whole life
accumulating all these memories, all these value systems, all of this place and my family and a society and here’s a disease that’s just going to come in and every single day just rip out the connections, just tear out the seams that actually define
who I am as a person
[italics mine],” says Rudolph Tanzi, professor of neurology at Harvard University, eloquently articulating the scary eventual outcome of Alzheimer’s disease in the PBS documentary
The Forgetting: A Portrait of Alzheimer’s.

Talk at any length to caregivers like Michaele about their loved ones, and you cannot escape the conclusion that the disease destroys the very essence of one’s being. At least, that’s the perception from the outside.

“It’s very hard,” said
Clare, a sixty-year-old woman of Norwegian descent living in California. “Somebody that you grew up with disappears before your eyes.” Clare’s ninety-year-old father is in the late stages of Alzheimer’s and the family has moved him into an assisted-living center. Clare visits him often, as does her mother. “He physically looks the same but when you look in his eyes, there’s nothing there,” Clare told me, her voice dropping to a whisper. “There’s really nothing there.”

The vast medical literature will concur with Clare.
Consider the phrases used to describe Alzheimer’s impact: “a steady erosion of selfhood,” “unbecoming” a self, “drifting towards the threshold of unbeing,” and even “the complete loss of self.”

Still, there are scientists, particularly social scientists, who are challenging such notions. If Alzheimer’s erodes the self, does the erosion go all the way until, truly, nothing’s left? We know that Alzheimer’s disease destroys cognitive abilities, to the point where the person is unable to take care of himself or herself, where putting on one’s pants or brushing one’s teeth becomes impossible, to say nothing of
the ability to recall the date and time, or recognize family members. But given that the person’s sensory and motor functions are spared, does anything remain of one’s self when cognition and its attendant abilities are wiped out?

Answering such questions requires us to return to what philosophers, scientists, and social scientists think the self is. Some argue that the self is fundamentally a narrative construct. It’s true that one of the key aspects of the self is the narrative—the story or stories we tell others and indeed ourselves about who we are; these stories depend on remembering and imagining. “
Individuals construct private and personal stories linking diverse events of their lives into unified and understandable wholes. These are stories about the self. They are the basis of personal identity and self-understanding and they provide answers to the question ‘Who am I?’” wrote psychologist Donald Polkinghorne.

It’s not hard to accept that our various narratives are part of the self, but is the self constituted solely of narratives, or does it have other aspects that exist before narratives are formed? Some philosophers argue that narratives constitute the self in its entirety—nothing’s left once the narrative goes. To them, “
the self is ultimately nothing but a dense constellation of interwoven narratives, an emergent entity that gradually unfurls from (and is thus constituted by) the stories we tell and have told about us.”

This notion of narrative-as-selfhood even places the cognitive act of constructing narratives at the heart of being a self. But the experiences of people suffering from Alzheimer’s pose at least two challenges to this view of the self.

One is the idea that cognition—and its role in creating narratives—is central to the self. Pia Kontos, of the University of Toronto, has been
observing people with dementia for more than a decade and takes issue with such a notion of the self. “There is something of who we are that exists separate and independent from cognition,” she told me.

She realizes that this claim is controversial. “It’s a perspective that challenges the whole Western construction of selfhood, because central to [our understanding of selfhood] is rationality and independence and control. It sort of goes back to [Descartes], the split between mind and body. It’s not just a split between mind and body, but it’s a very particular notion of dualism, where the body is relegated to nothingness. It’s just an empty shell, and really everything, in terms of sense of self and agency and intentionality, is attributed to the mind.” Kontos wants to bring the body into the discourse on selfhood, agency, and even memory.

So, even if we were to view selfhood as a narrative, the narrative would not be solely the purview of cognition; the body has its say.

And Alzheimer’s disease defies the narrative-only view of the self in yet another way. It challenges those who argue that the self is best understood as constituted of
and by
narratives—and that there is nothing else besides these narratives. While the disease does destroy one’s ability to have and tell a coherent story, what remains once this narrative self disintegrates is less clear. “
It is by no means obvious that . . . any experience that remains is merely an anonymous and unowned experiential episode, so that the ‘subject’ no longer feels pain or discomfort as his or her own,” writes philosopher Dan Zahavi. Understanding what might be left behind once the narrative self is gone could point us to the brain processes that beget the self.

Zahavi, for example, argues that the self, before it becomes a full-fledged narrative, must be something minimal, something that is capable of being the subject of an experience in any given moment.

So, despite its relentless degradations, Alzheimer’s disease is allowing us to examine the self in ways that are more layered and more nuanced. This emerging picture of the self will tell us what it means to be a person with end-stage Alzheimer’s and influence how we take care of those people.

Around the time Clare’s father was diagnosed with Alzheimer’s disease, he walked over to the local police station—in a small town an hour’s drive north of Sacramento, California—and handed the police a gun that he owned. “I got rid of the pistol because I’m afraid I’m going to use it on myself,” he told Clare. Soon after, Clare’s parents sold their farm and moved to a much smaller house. The farm had become too much to manage.

Clare’s parents came to America from Europe when Clare was four years old. Her father was a scientist who worked for a major corporation, was extremely successful, retired early, bought his family a farm—something Clare’s mother had always wanted—and settled into an altogether different kind of life amid farmers, ranchers, and cattlemen’s associations. It was during one of her visits to the farm that Clare noticed something was amiss. They were having a barbecue. Her father, who always did the barbecuing, turned around to Clare and said, “I don’t know quite how to do this.” Clare thought he was kidding; surely he knew how to barbecue? “Oh, come on, you know what you are doing,” she said. “No, Clare, I’m not [kidding]. Something is wrong,” he said. It felt wrong to him in the same way that it felt wrong when he couldn’t think of certain words.

He had told Clare earlier that, at times, he had to search for the right words for something he had in mind (the way Allan had
struggled for the word “tornado”). Clare realized that this was a big deal for her father. “Perhaps everybody says this about their father, and especially their father with Alzheimer’s disease, but in my case, I really think it was true,” Clare told me. “He was an extraordinarily intelligent man. He spoke seven languages and he was quite good at them. And so words were kind of easy for him and when they started disappearing, he was concerned.”

Such concerns grew. Clare remembered one key moment with her father that made it clear he was getting worse. And it centered on something he used to love: sailing. He was an accomplished sailor, who could navigate the seas at night by the stars and often would charter a large sailboat, invite friends, and sail around the Great Lakes, even the Caribbean. Once, in the 1980s, they were sailing off St. Barths (with an “interesting” group of sailors that included two Argentinians, recalled Clare; she was the only woman on board), when a massive storm hit the region. Clare’s response was “Let’s get out of here,” but her dad (the captain) wasn’t bailing out just yet. The dinghy attached to their sailboat was being whipped around by the wind and the waves and taking on water, becoming a drag on their sailboat. Everyone wanted to cut the dinghy free, but Clare’s father refused to do so. Through it all he remained keenly aware of his boat; even while asleep in the middle of the night, having dropped anchor, many a time he’d know that the anchor hadn’t quite grabbed. He’d make Clare get up and together they would reset the anchor. He saw them through the storm.

More than a decade later, Clare and her cousin decided to take her dad on a sailing trip. By this point, they knew something wasn’t quite right with him. So this time, Clare’s cousin acted as captain and Clare the first mate. Her dad was just a fellow sailor. “He knew his way
around the boat, and he could sail, but he also was quite happy that he wasn’t in charge. He wasn’t offended or outraged by that,” recalled Clare. But there were indications of his difficulties. Sometimes, when Clare and her cousin were doing a tough maneuver, her dad would stand up and risk getting hit by the swinging boom. She would have to shout out, asking him to sit down. And yet when they set a course and put him behind the wheel, he could still maintain a compass bearing, trimming the sails as necessary.

Then suddenly, out of the blue, he’d say, “What day is it? What day is it? What day is it?”

A few years later (and after he had been diagnosed with Alzheimer’s), Clare and her dad were walking through the center of a small coastal town and saw a church sale. There was a model sailboat on display. Clare’s father picked it up. “He looked at it, and he looked at it. He knew that he was interested in it, but I also had the sense he wasn’t really sure why he was interested in it,” Clare told me. “None of it was verbalized. It was in the way he was holding his body. The look on his face, which was sort of looking, but yet there was no comprehension that I could see going on.” The once-accomplished sailor no longer remembered a sailboat.

She knew then that her dad’s Alzheimer’s had moved way beyond just short-term memory lapses.

Much of what we know about memory and the brain structures that support it comes from the study of one unusual man, who, for better or for worse, lived
in the moment
from the age of twenty-seven. Students of psychology and neuroscience know him as patient H. M.; he was Henry G. Molaison, born in 1926. Henry began having epileptic
seizures when he was ten years old, possibly because of a minor head injury a few years earlier (but
the causation was unclear; there might have been a genetic predisposition, given that Henry’s cousins on his father’s side also suffered from epilepsy). The seizures got progressively worse. Anticonvulsant drugs had no effect, so much so that Henry, a high-school graduate, barely managed to continue at his job on a typewriter assembly line. Eventually, in 1953, when Henry was twenty-seven years old, the neurosurgeon William Beecher Scoville of Hartford Hospital in Connecticut decided on a risky experimental surgery to treat Henry’s epilepsy.