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Melissa Harris-Perry: This is The Takeaway. I'm Melissa Harris-Perry. I'll admit it, I'm an unrepentant fan of NBC's hit drama This Is Us. Now, back in January, the show entered its 6th and final season. Much of the season centers on how the family is managing the early onset dementia affecting the family's matriarch, Rebecca Pearson.
Rebecca Pearson: I'm afraid it's going to be a lot harder on all of you than it will be on me, and I hate knowing that. I hate it.
Melissa Harris-Perry: Many of us are watching and weeping with recognition. The CDC estimates that more than 5.8 million people in the US are living with Alzheimer's and related dementias. Yet even with so many millions affected, there are times when navigating the swift and baffling changes created by these conditions can seem like an entirely solitary journey.
Philosopher and historian of ideas, Noga Arikha's new book, The Ceiling Outside: The Science and Experience of the Disrupted Mind, serves as a philosophical and scholarly guidebook through the existential questions raised by the experience of dementia and certain other brain conditions.
Noga Arikha: I am a humanist in the sense that I've trained as a philosopher and historian, but I read a lot of science. I've realized that just as we need science to understand ourselves in a general way, so do scientists need humanists to actually get a perspective on what they're doing on the questions they're asking. I try to put the two together.
Melissa Harris-Perry: Noga told me a bit about how she came to this project.
Noga Arikha: This book, actually, was based on my witnessing. Over 18 months, I was able to sit in on the weekly sessions of a neuropsychiatry unit in a hospital in Paris. I saw patients whose diagnosis was unclear, who needed help from both neurologists and psychiatrists.
A lot of these patients had difficulties with memory of all kinds. How does memory indeed inform selfhood? It turned out that when I was writing the book after I'd stopped going to the sessions and I was writing it, after I finished the draft, I realized my own mother could have been one of those patients because she was developing dementia. She was losing a large part of her autobiographical memory, episodic memory. Meaning, long-term memories. A lot of her past life was just disintegrating, and yet herself remained in some way.
A lot of the book is also-- I ended up writing about her a great deal. The book combines the stories of the patients, my mother's difficulties, and what it meant for me and my sister as daughters to relate to her, to care for her, to continue being daughters, even though she still recognized us, but she was no longer the same, at least conversationally, the same person that she had been for us.
Melissa Harris-Perry: With her mother's diagnosis, Noga's professional work became quite personal. Of course, as a philosopher, even the personal experience opened up a series of larger questions about the mind, the self, the normal, and the pathological.
Noga Arikha: The border between the normal and the pathological is very porous. It's difficult to understand really when pathology starts. Dementia is also a case like this. Her memory was already quite fragile, but we didn't think of her as having dementia, my mother. Then, suddenly, we realized, "Oh, something is wrong." There was a cutting point beyond which we realized, "This is not the normal way to be. Why is she forgetting this?" The question of how-- Memory is not the same thing as self, but without memory, of course, our self is no longer what we think of it as. It is a complex question.
Melissa Harris-Perry: Losing memory disrupts not only the mind of the patient, it also disrupts the relationships, which in so many ways, are built on and sustained by shared memories.
Noga Arikha: The disappearance of the shared memories is a major, major thing. I think that a lot of identity does rely on these shared memories and assumptions. It was also good to remember that there is something that does remain that is shared before that is beyond explicit memory.
Melissa Harris-Perry: Which brings us back to TV mom, Rebecca Pearson, in the final season of This Is Us.
Rebecca Pearson: I'm afraid it's going to be a lot harder on all of you than it will be on me, and I hate knowing that. I hate it.
Melissa Harris-Perry: Rebecca's on to something important here, that the loss of shared memories and stable identity caused by the psychological disruptions of dementia are at least as painful, and perhaps even more so for the families of the patient as they are for the patient themselves.
Noga Arikha: There's an important word called anosognosia, which is the unaware of one's illness. Anosognosia is present in many dementias, particularly in Alzheimer's dementia, which is probably the one my mother had. It's a kind of blessing because it really is. The person is not aware that something has gone wrong. That's another aspect, however, that is very difficult to learn how to live with, in a sense. One has to accept there's an asymmetry of knowledge. I know something's wrong with you, but you don't. That changes the relationship.
The other thing one can do is learn how to be grateful for the lack of awareness that this person seems to have and does have usually.
My mother was really-- Yes, she was blessed and she was actually very happy during that time. She was very creative, in a way, in a sense in her, this kind of absented world, which was still full of emotion, full of affect, full of humor, and full of joy. There was something there. I think it's very important to learn how to see what's in loss can still be a consolation.
Melissa Harris-Perry: The language of the disrupted mind feels somewhat different to me than an attempt to pathologize or to normalize some particular functionings of the mind or of the brain. Can you just walk us through the notion of disruption as perhaps distinct from making a claim towards either normal or pathological.
Noga Arikha: Disrupted is really a perfect word to describe the experiences that they witnessed. The patients who walked into that clinic didn't look at all like anything was wrong with them. They looked like perfectly normal people like all of us. It was only by poking, the clinical poking that actually enabled to actually extract what the difficulties of these people were, often really very painful stories and very complex difficulties. That is where you realize there was a pathology in that ordinary life was partly disrupted.
A lot of us, and most of us have something. We all have neurosis. We all have difficulties, anxiety, all these things are very widespread. We don't call them really pathologies. What makes something pathological is when it really does disrupt your ability to carry on normally in your daily life. I think it really can only be defined, not in terms of etiology, of course, but rather in terms of consequence. What are the consequences of these difficulties on your life? That's when really you can call it maybe a pathology. I'm just suggesting this. It's debatable, actually.
Melissa Harris-Perry: Noga Arikha, author of The Ceiling Outside: The Science and Experience of the Disrupted Mind.
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