Watching her mother's dementia motivated Noga Arikha to study when the "self" ceases to exist

"The Ceiling Outside" author talks about the relationship between selfhood and memory

By Mary Elizabeth Williams

Senior Writer

Published May 9, 2022 4:13PM (EDT)

Brain fractured into sections (Getty Images/Hiroshi Watanabe)
Brain fractured into sections (Getty Images/Hiroshi Watanabe)

We are who we tell ourselves we are. We are who we are at exactly this moment in time, and we are also every memory that has brought us to this point. And as philosopher and historian Noga Arikha explains in her new book "The Ceiling Outside: The Science and Experience of the Disrupted Mind," our very awareness — of ourselves and of the world — is fluctuating, even at the best of times. We feel as much as we think. It's a mutable thing, this sense of self, and we are not always our own best historians.

Arikha, who previously wrote "Passions and Tempers: A History of the Humors," picked a poignant time to investigate the complexities of experience, identity, and the concept of interoception — our physical and emotional senses of self-awareness. While Arikha was studying the mysterious conditions of a group of patients in a Paris hospital's neuropsychiatry unit, her mother, the poet Anne Atik, was meanwhile navigating through her own experience of dementia. What unfolded was a quest that became deeply personal, a firsthand account of how, as Arikha says, "we take our memory for granted, until an aspect of it breaks down."

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What could Arikha learn from a patient like Vanessa, who'd lost a decade of memories but "perhaps gained something else" in the process; or Claire, who "suffered from a real ailment… but had no identifiable pathology"? And what could she learn from her mother, even as the two of them slipped further and further away from each other?

Salon spoke to Arikha, who was getting over a breakthrough bout of COVID, via Zoom recently about dementia, memory, science, philosophy, and the tricky magic act of watching ourselves exist in the world. 

This conversation has been edited and condensed for clarity.

Here in the US, we think of diagnoses like they are with a COVID test, like a line is going to appear and it's a yes or no. It's given us this unrealistic sense of certainty. As you say, that is not the case at all.

We have been living with COVID for the past two and a half years, and having it inside you gives you a different perspective. This test, it becomes this aesthetic thing on Instagram or on Twitter, like, "Look at this." There's this beautiful double line of the certainty of diagnosis, but the uncertainty of prognosis. It just sums up the whole thing.

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This book wound up being so much about your mom. Tell me how she came into this story for you. You could have chosen not to include her.

It's true. I actually had real doubts, but friends who read what I'd been writing told me, "We want more about your mother." I had mentioned her discreetly in passing. It's not something you just do, especially when she's in such a state. I really wondered ethically, was it going to be okay to do this? I even asked this of a doctor friend, an ethicist who thought it was really difficult a decision to make. But then it became obvious, because it felt completely dishonest not to, given that this was such a deep, important experience that she was undergoing and that I was undergoing. There was no way I could just hide. I had to do it. Writing about this is a universalizing experience. It's not actually about pointing to one self, it's using the self to point outside to others.  

The book came in a few layers. The first layer was just telling the stories of the patients. Then I was getting into the research on interreception and the science of the embodied sense of self, which is developing so fast it's really hard to keep up. I used that science to try to understand what the patients were going through, to be that bridge between the experimental and clinical, between the theoretical model and the individual patient.

The third thing was, "Well, I have to talk about her." At that point I was reading Emmanuel Carrère's book "Yoga" and that book helped me. A friend of mine, a wonderful actress named Irene Jacob, wrote a beautiful memoir about being pregnant while her physicist father who worked on Big Bang theories was dying, and putting together pregnancy, past, and a future cosmography about herself. It was completely about transcending yourself. Those books helped me figure out how to do this and to go beyond my initial reluctance. Then lastly, very importantly, my mother couldn't write anymore. The mother-daughter thing, am I allowed to write her words for her? But then, what else can I do?

What dementia does that is so cruel, but also so illuminating, is it makes us question who the self is. When you went into this book, what was the question that you most wanted to answer?

It's about a book about how the self studies itself and how it loses itself. It is about asking this question, what is the self? That's number one. Number two, it's very much giving to the public access to some of amazing scientific research that is usually completely confined within these academic boundaries. Most people, and actually a lot of mainstream science, are still stuck with this cognitive model that the mind is the brain. 

There's a huge movement called the 4E Movement — the enacted, embedded, extended, embodied mind. We're all these things. We are all interconnected. These are big movements in philosophy and psychology, neuroscience, even in social science. But they're academic. So how do you actually bring this into the world? And there's a difference between the science, the generalizable theories, and the living individual and pathology. There are as many pathologies as there are people. No two people experience pathologies in the same way.

How do you do medicine, given that you need a general model to devise treatments of any kind? The question "What is the self?" is a universal question, but then you have to talk about what the individual self is. Going into the clinic was a way of really trying to do something a bit new in this realm. It was trying to get closer to what we all are, since we all potential patients, and just try to listen. Try to listen to what this very, very fragile, porous border between pathology and normalcy is, to try to see where pathology starts. It's difficult to figure that out.

Most of us have experiences of unease that can turn into disease in some cases. Who determines, what determines what the disease is? This 4E theory derives out of the tradition of phenomenology. It's this idea that when you're studying the mind, you're really missing out on the first person experience in everything.

So much of the idea of the self is tied to memory. Who am I without my memories? How do I change when my memories change? That not just applicable in the space of dementia, it's not just applicable in the space of people who have had traumatic brain injuries. We are all wrestling with this idea of identity and memory. What have you learned about memory?

The distinction between various kinds of self. There's a quite a bit of autobiographical memory, and the core self, which are separate things. In the case of my mum, the memory loss was mainly a fast destruction of her autographical memory, so she forgot about most of her life.

But discursively, conversationally, verbally, at some semantic level, she remained my mum. She remained who she was. She was coming up with these extraordinary sayings which I collected. Many of them are hilarious. Everybody remembers my mum as a woman with an extraordinary sense of humor. She was also a poet, and so she was able to come up with these amazing sayings, things that were very, very lucid. God knows where they come from, the whole thing is rather mysterious.

It was very extreme to have this experience of semantic clarity. She had no loss of words really, but they made no sense. The conversation was like Dadaism, it really was. It was like an experience of surrealism. In a sense, some of it was rather entertaining if you were able to just look at it that way. She was able still to recognize us, and she died before it got much worse. In a sense she didn't lose her connections with the people who mattered, and that's a kind of blessing.

Right now, at least in the US, there are so many television shows all coming out at the same time that are about "Who would I be if I went in a different timeline? Who would I be if my story started at a different point?" I think it's because we're so fascinated with exploring these ideas of "nature versus nurture."

Which is not a versus. This is the illusion that continues, which is terribly misleading. There is no versus. It's part of our nature to be cultural. We are determined by naturally given entities, such as genomes and such things which are completely, constantly interacting with the environment. This is what one of the elements of those 4E ideas. We're constantly interacting with the environment and each other, so there is no such thing as versus. That's a very, very dangerous position.

We like to think "nature versus nurture," which also means "free will versus destiny." Certainly here in the US, we like to feel like we are the masters of our destiny. We are very into the idea of self-creation.

This goes back to what we start off with the DSM. The nominalism and the need to name is another aspect of the need to control and to draw borders. Siri Hustvedt, who's a great interlocutor and great inspiration for me, is very good at understanding and showing where this idea of borders is very wrong and actually quite destructive in many ways.

I am partly American, but I'm a deeply European person as well. I look at each country from the outside, like I'm from everywhere. I'm living in Tuscany now, which is the epitome of the merging of a human culture and natural culture, of the both together. The landscape is the most harmonious outcome of humans acting upon wild nature, and that's something doesn't exist in America. In America, you have either the lawn or the total wilderness. There is not that mingling. That's a border that has been created by a certain culture of control. 

To go back to the sense of self, there's no reason to make a border, like nature, nurture. We need to first get rid of those a priori borders precisely in order then to be able to understand things better.

In the case of our mothers and their dementia, there are many kinds of dementias. Certain in all of them and in illnesses affecting the brain, some issues with memory are going to happen. This is because the sense of memory and the sense of self are very profoundly intertwined, but I'm not sure how. How you would account for this in terms other than there's certainly biological events happening? With my mother, there was something known as cognitive reserve. That high level of education, also on the fact that she was an intellectual all her life, meant that she was able to preserve that verbal fluency, probably. There's something like a cultural background of herself remained. 

You talk about the somatic interpretation of things. What we embody is not just the brain, but memory, understanding, history, learning, experiences, that affect the body. What has that changed in your understanding of identity after writing this?

The first word that I come up with, sadly, is loss. Learning how to live with loss. Dementias are a different kind of loss because the person that has a dementia doesn't know that they have it, so they don't know how much they are losing. Anosognosia is very, very much central to Alzheimer's. My mother had really no sense that she had lost all that, at least no conscious sense. I learned about loss before COVID hit, and then there was so much loss in the world.

It's a sad reckoning, but that is the only reckoning that allows us actually to live with a kind of serenity, and that some losses can address for good losses. In a sense, reckoning is learning about loss. It's a positive thing. Another positive thing is seeing how extraordinarily complex and unique every single person is and how very rich every single life is. How ultimately unknowable it is.

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By Mary Elizabeth Williams

Mary Elizabeth Williams is a senior writer for Salon and author of "A Series of Catastrophes & Miracles."

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Dementia Interoception Interview Neurology Noga Arikha Philosophy The Ceiling Outside