A Descent Into Lewy Body Dementia in 'Counting Backwards'

Summary

Podcast Summary: All Of It with Alison Stewart

Episode Title: A Descent Into Lewy Body Dementia in 'Counting Backwards'
Release Date: April 7, 2025
Host: Alison Stewart
Guest: Binny Kirschenbaum, Author of Counting Backwards

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Introduction and Episode Overview

The episode begins with Alison Stewart welcoming listeners and outlining upcoming conversations, including discussions about the film Warfare, artist Amy Sherrid's new show at the Whitney, and a book club preview featuring The Dream Hotel by Leila Lalami.

Introducing Counting Backwards

At [01:31], Layla Lalami introduces Counting Backwards, a novel inspired by Binna Kirschenbaum's personal experience with her husband's battle against early-onset Lewy Body Dementia (LBD). The novel follows Addie, a New York City artist, and her husband Leo, a research scientist, as Leo grapples with hallucinations and cognitive decline.

Author’s Decision: Novel vs. Memoir

At [02:35], Kirschenbaum explains her preference for crafting a novel over a memoir. She states, “I'm never interested in writing memoir. My imagination just goes off in different directions” (02:40). This creative freedom allowed her to explore "what if" scenarios, adding depth and dramatic elements absent in her real-life experience.

Creative Process and Fictionalization

When discussing her writing process, Kirschenbaum reveals that while her husband's LBD inspired the novel, she fictionalized much of the narrative. At [05:53], she mentions, “I fictionalized a lot really, the vast majority of the book” to enhance plot progression and emotional impact. This approach enabled her to delve deeper into the characters' psychological landscapes.

Feelings of Betrayal and Honoring Her Husband

In an emotional moment at [06:37], Kirschenbaum shares her initial feeling of betrayal: “I felt like I was exposing him, and particularly because so much of it is made up, and in some ways the worst of it is made up” (06:50). Despite creating fictional elements, she believes her husband would have supported her creative expression.

Reading Excerpts and Character Development

Kirschenbaum reads an excerpt titled Tonight or Tomorrow at [07:47], illustrating the profound emotional struggles faced by Addie as she witnesses Leo’s decline. The passage captures the intimate and painful moments leading up to Leo's death, highlighting the novel's raw portrayal of caregiving and loss.

Characterization of Leo and Pre-Illness Life

At [11:07], Kirschenbaum describes Leo as a “very happy” individual with a “satisfied” marriage, emphasizing their strong mutual dependency and active social life (11:18). Leo's kindness, quirkiness, and supportive nature make his deterioration all the more heartbreaking.

Hallucinations and Artistic Influence

The discussion moves to Leo’s hallucinations, such as seeing “Gandhi stirring lentils” (11:50), which play a significant role in the narrative. Kirschenbaum explains that Addie utilizes these hallucinations to inspire her art, particularly when she faces artistic blocks, thereby intertwining Leo’s experiences with her creative process.

Exploring the Medical System’s Limitations

Kirschenbaum delves into the challenges of diagnosing LBD at [14:55], highlighting how the erratic and varied symptoms complicate accurate diagnosis. She states, “the doctors kept asking about that because that's symptom one, and because he wasn't having that, they were dismissing that possibility” (16:00), underscoring systemic issues within medical diagnostics.

The Role of New York City in the Novel

At [16:25], Kirschenbaum discusses how New York City serves as both a backdrop and a character in the novel. The city’s dual nature of fostering community while also facilitating isolation mirrors Addie and Leo’s personal struggles. The abundance of resources, from specialized clinics to vibrant social circles, provides both support and complexity to their lives.

Maintaining Personal Interests Amidst Decline

Leo's enduring love for books is explored at [17:57], symbolizing his deep connection to knowledge and learning. Kirschenbaum reflects, “when you're so connected to something... it almost becomes a part of you” (18:11), illustrating how losing his ability to read signifies a profound loss of identity.

Emotional Turmoil and Caregiver’s Struggles

Addie’s emotional journey, including moments of intense frustration and anger, is examined at [19:13]. Kirschenbaum explains that Addie’s rage is directed not at Leo but at the overwhelming circumstances: “fury at the world, fury at what's happening, that her life is falling apart” (19:37). This authenticity portrays the complex emotions faced by caregivers.

Social Isolation Post-Diagnosis

Post-diagnosis, Addie and Leo experience a withdrawal of friends, which Kirschenbaum attributes to societal discomfort and pity surrounding LBD. At [20:45], she notes, “I think when studies are done... they just don't know what it is,” highlighting the social stigmas and misunderstandings that lead to their isolation.

Reception of the Novel

Despite critical acclaim, Kirschenbaum mentions at [21:50] that she hasn’t received personal accounts from families dealing with LBD. However, she feels reassured by the positive responses from critics and acquaintances, suggesting the novel resonates on a universal emotional level.

Innovative Writing Style: Second Person Narrative

The unique second-person narrative choice is discussed at [22:23]. Kirschenbaum explains her instinctive move to "you" was a way to bridge emotional distance without becoming overly sentimental. She states, “the you created enough distance to keep it from being sentimental” (22:26), ultimately finding that this perspective allowed deeper connection with the character.

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Notable Quotes with Timestamps

• “I'm never interested in writing memoir. My imagination just goes off in different directions.” – Binny Kirschenbaum [02:40]
• “I felt like I was exposing him... I was lying about him in a way.” – Binny Kirschenbaum [06:50]
• “The you created enough distance to keep it from being sentimental.” – Binny Kirschenbaum [22:26]
• “Fury at the world, fury at what's happening, that her life is falling apart.” – Binny Kirschenbaum [19:37]

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Conclusion

The episode offers a profound exploration of Binny Kirschenbaum's Counting Backwards, intertwining personal narrative with broader themes of medical uncertainty, artistic expression, and the emotional complexities of caregiving. Through intimate storytelling and innovative narrative techniques, the novel presents a heartfelt portrayal of love, loss, and resilience within the bustling yet isolating environment of New York City.

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Additional Notes

• Podcast Structure: The episode effectively balances personal storytelling with thematic discussions, providing listeners with both emotional depth and intellectual insight.
• Relevance: The conversation sheds light on Lewy Body Dementia, a lesser-known neurological disorder, thereby raising awareness and fostering empathy.

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For More Information: Visit WNYC’s All Of It to listen to the full episode and explore more content about culture and its consumers.

Transcript

[Alison Stewart]

All of it is supported by Progressive Insurance. You chose to hit play on this podcast today. Smart Choice. Make another smart choice with Auto Quote Explorer to compare rates from multiple car insurance companies all at once. Try [e-mail] Progressive Casualty Insurance Company and affiliates not available in all states or situations. Prices vary based on how you buy.

[Binny Kirschenbaum]

Listener Supported WNYC Studios.

[Alison Stewart]

This is all of it on wnyc. I'm Alison Stewart. Happy Monday. Really glad you're here. I wanted to shout out some of the conversations we have planned over the next few days. Tomorrow we'll talk about the powerful new film Warfare. It's co directed by Alex Garland and Ray Mendoza, a former Navy seal. The two of them will join me in studio to discuss. On Wednesday we'll be speaking with artist Amy Sherrid about her new show at the Whitney. And on Thursday we'll preview our April get lit with all of it book club the Dream Hotel with author Leila lalami. Head to wnyc.org get lit to grab tickets. Did I say her last name right? Lalamy.

[Layla Lalami]

Lalamy. Layla Lalamy.

[Alison Stewart]

That's it. That's in the future. Well, let's get this hour started with a novel based on a real Life experience.

[Layla Lalami]

In 2020, author Benny Kirschenbaum lost her husband to early onset Lewy Body Dementia. It's an illness that causes hallucinations as well as issues with cognition and motor skills. It's the basis for Binny's new novel, Counting Backwards. The story follows a New York City artist named Addie and her husband, a research scientist named Leo. One day, Lee will start to see things that aren't there, like Gandhi or a pack of wolves or a mysterious little girl. Sometimes he thinks his wife is an imposter. He walks around the city for hours in a winter coat. In the middle of July, after two years of a slow descent, Addie finally gets a diagnosis for her husband. And while the diagnosis provides some relief, Addie still feels crushed under the wake of of her caretaking responsibilities and under her grief for someone who is still alive. The New York Times calls Counting Backwards a gutsy, funny, heart wrenching novel. Author Binny Kirshenbaum joins me in studio. It is really nice to meet you.

[Binny Kirschenbaum]

Nice to meet you.

[Layla Lalami]

When why did you want to write a novel rather than a memoir about your experience?

[Binny Kirschenbaum]

Well, I'm actually never interested in writing memoir. My imagination just goes off in different directions. And when I was first writing this and although my husband had Lewy Body dementia, it was very difficult to diagnose and Part of the reason for that is that there are myriad symptoms, and not everybody gets all the symptoms, and the symptoms fluctuate, and there's long stretches where they seem perfectly fine. So I was so caught up in that that I wasn't really looking at it. And then after he passed away and I started thinking about writing something like that, I knew I wouldn't write a memoir just because, as I said, I like to invent, and I like to ask, what if? And when I started to do the research, I found that there was so much more than I knew about. And those things triggered imagination and moved plot forward, and I created different. Although the character Leo, my husband, was a scientist, and I'm a writer, not an artist. But I also find as soon as I put people down on the page, they just take up a life of their own, and they're not really like us at all.

[Layla Lalami]

When did you decide that you could write a novel about this?

[Binny Kirschenbaum]

Well, in the latter part of his illness, I started writing things down to remember some of the early symptoms and just to keep track of it in my own head what was going on. And I was looking them over, and it was Covid was just starting things mess, and I just started writing them down, and I thought, well, let me see where this goes. And then again, a story just started to form that wasn't exactly the story as it happened.

[Alison Stewart]

As you looked back at those notes, what did it reveal to you about the experience and what your husband was going through?

[Binny Kirschenbaum]

Part of it was sort of the incredulity that nobody could diagnose this because the symptoms were so bizarre. And when it finally was diagnosed, I learned that that is really the main reason that they can't. And also, this might have changed, but at the time, there was no scan or anything like that that would pick that up the way it would with other brain disorders.

[Alison Stewart]

Before your husband was diagnosed, how much did you know about Lewy Body Disorder?

[Binny Kirschenbaum]

I'd never heard of it.

[Alison Stewart]

Did you go on a deep research mission?

[Binny Kirschenbaum]

Not then. I think then I was just trying to get through it. Psychiatrists had told me some things about it, what to expect. But at the time, I was just more caught up in. In trying to get help for him, trying to get help for me, what to do about all this, how to cope with it. So I wasn't really looking into it more, just a little bit.

[Alison Stewart]

As you were writing the book, how much did you stick with your own personal experience and how much did you fictionalize?

[Binny Kirschenbaum]

I would say I fictionalized a lot really, the vast majority of the book, particularly how Addie responds to things and the disease, too. I gave Leo lots of symptoms that my husband actually did not exhibit. And as I said, when I was doing the research after, when I was getting more heavily into research, and when I saw how many possibilities they were, it just sort of started igniting the imagination. And I realized, oh, plot could move forward if I have him, have this symptom. And that would take us from here to there in ways that it didn't in life. And in a more dramatic way.

[Layla Lalami]

You said in an interview in Publishers Weekly that, quote, I felt like I was betraying my husband by writing the book. Why, at the time, did it feel like it might be a betrayal?

[Binny Kirschenbaum]

Because he did have the disease. And there are, you know, a handful or maybe more handful of things that did really happen. And I felt that it wasn't like I didn't tell people that he had this. It wasn't a secret exactly, but I just don't know how he would have felt about my writing it. I think he probably actually would have been okay with it. And I've written other things, not Weary's character in them, but other things that might have caused people to wince a little bit or something. And he was very good about that and didn't. But I just felt like I was exposing him, and particularly because so much of it is made up, and in some ways the worst of it is made up. And so I felt like I was lying about him in a way.

[Layla Lalami]

You don't feel that way now, though. Not you finished?

[Binny Kirschenbaum]

I still feel that way.

[Layla Lalami]

Yeah. Yeah. My guest is Binny Kirschenbaum. The name of the new novel is Counting Backwards. It's about a New York City artist named Addie who is caring for her husband with Lewy Body dementia. Would you read the first section for us so that people can get a sense of what the book's about? This is called Tonight or Tomorrow.

[Binny Kirschenbaum]

Yes. And in this case, it really opens with the end, and then it starts at the beginning, goes all the way through, then chronologically, and then pretty much ends up more or less where we started off. You sit at the edge of the bed watching your husband, who looks as if he were sleeping, hooked up to a high flow oxygen tank. He might be sleeping, but mostly he is dying. A high flow oxygen tank is not a ventilator. When the subject of things such as ventilators would come up apropos of nothing other than stories on the news, stories of lawsuits and family battles, Leo invariably said no matter what. No artificial means of life support for me. You have the document do not resuscitate and no artificial means of life support. You, on the other hand, said, I want to be freeze dried. Or maybe one of those long term induced comas. The oxygen will not prolong his life, but it eases the pain of breathing. The pain of breathing. The oxygen eases the pain for him. The oxygen eases the pain. But to ease the pain does not mean there is no pain for you, there is pain. The hospice nurse says that if he shows indications of suffering, if he winces or groans or. Because not all suffering is externalized. Even if you just sense that he might be uncomfortable, you can give him morphine. Not all suffering is externalized. You eyeball the vial of morphine tablets. The hospice nurse tells you that he will most likely die tonight. Tonight or possibly tomorrow. The hospice nurse leaves. She has other dying people to visit. You take your husband's hand. You lean over, stroke his cheek, run your fingers through his hair. Such hair. Full, thick, Boyish, the way it flops over his forehead. But not boyish because it's white. Eighteen years ago, after his 40th birthday, his hair started going white. Within nine months it was all white. Prematurely white. It's you, he teased. Living with you turned my hair white. White hair, disease, death, death, all of it. Premature. Now you say, I'm sorry that I wasn't always good to you. But more than anyone, anything, ever, I loved you. Do you know that? I loved you? Loved. Past tense. He's not yet dead and already you are in the past tense. Tonight or possibly tomorrow. Hurry up. Not all suffering is externalized. Please hurry up. Because for you there is pain.

[Layla Lalami]

That was Binny Kirschenbaum reading from her book, counting backwards. How would you describe your character, Leo? What it was like before the illness?

[Binny Kirschenbaum]

I think they had a very happy marriage. I think they were very satisfied with each other. They had a lot of friends and active social life. But there was a real mutual dependency. I think he was kind, quirky, as I guess most of us are, but loving and caring and broad minded, supportive. A good guy.

[Alison Stewart]

He's a good guy. When he first starts having these symptoms and one of them is hallucinations, he sees, I believe he sees Gandhi stirring lentils.

[Binny Kirschenbaum]

That's the first one that he's had some previously, but that's the one that it opens with. It's the one that makes him really feel. He's maybe need to see somebody about this.

[Alison Stewart]

Well, all of these different hallucinations what was your creative process for coming up with what these hallucinations would be?

[Binny Kirschenbaum]

Well, a couple of them were real, but a lot of them. Again, some of them I actually went back to after the book was going forward because they seemed sort of thematically threaded through. Or I would pick up something that I thought, oh, this could connect to that. So, particularly when she's artistically blocked and she starts to use his hallucinations to create her art, at that point, I went back and started thinking, well, what kind of art might she create? And then invented hallucinations to match them.

[Alison Stewart]

Addie also uses the hallucinations sort of not against Leo, but to help him get to where he needs to be. Like, you made a doctor's appointment. She's like, you've already made that doctor's appointment. Why does she decide to. I guess deceive is not the right word, but why did she decide to do that?

[Binny Kirschenbaum]

In part because at a certain point, he gets very reluctant to see a doctor, and she's aware that things are getting worse, and she knows he has to see a doctor, and he's resisting it at that point. Although initially he was more agreeable, but when he was going to doctors initially and they couldn't find anything wrong, as that went on, he became more reluctant to go. And so she knew he had to. So she was. The only way she could figure out how to do that was to deceive him.

[Alison Stewart]

She also used his hallucinations in her art.

[Binny Kirschenbaum]

Yeah.

[Alison Stewart]

Why did she do that?

[Binny Kirschenbaum]

She really, I think, was. At that point, the art just wasn't coming. And she was desperate when this first started to keep working, and she just. Everything she was doing just wasn't coming together. And so she just took a look at the notebook. He kept a notebook of his hallucinations. He was writing them down. And so she went back and looked through those to inspire her, give her ideas.

[Alison Stewart]

You know, part of the story is they can't find out what's wrong with him. The doctors don't seem to know what's wrong with him, even though he's having these vivid hallucinations we've been talking about. What did you want to explore about the limits of the medical system?

[Binny Kirschenbaum]

Well, one thing is, and that I did learn after, is that. And I actually knew this from my husband, that when studies are done, if there are exceptions, and if the exceptions are very small, they tend to get pushed aside and not thought about. But because with this disease, there are so many exceptions, because the symptoms are erratic. And when I found the list of symptoms. It really went on for three, four pages of possibilities. And so they just don't know what it is. And because. Which I did use in the book, for the most part, about 98% of the people who do have Lewy Body, it does start out with Parkinson's like symptoms, but there are some people that that doesn't happen to. And in the case with him, it wasn't happening. And so the doctors kept asking about that because that's symptom one, and because he wasn't having that, they were dismissing that possibility.

[Layla Lalami]

My guest is Binny Kirschenbaum. The name of her new novel is Counting Backwards. It's about a New York City artist named Addie who's caring for her husband who has Lewy Body dementia. Addie and Leo, they live in New York. There's so much New York in the novel. How does living in this city inform their lives?

[Binny Kirschenbaum]

That's a good question. I think the people that they're friends with, that New York has this sense of community and yet at the same time, this sense of alienation. And so you can be with people so easily. You can also be alone so easily. And so I think those two things really came together here.

[Layla Lalami]

Was it. Is it harder for Leo to live in New York, or did it make things harder or easier for him?

[Binny Kirschenbaum]

Well, probably easier, I would think, just because there's more available to you. There's an infinite number of doctors and special clinics and things like that where in other places there wouldn't be. And just the sort of people they were that they were interested in, the arts and academia and things like that. So it was more conducive for them to have this group of friends to just pop out to the store. I think I did a lot about how they ordered dinner in because she doesn't cook and he doesn't cook. And so they either go out to dinner or they order dinner. I don't know if that happens elsewhere so readily.

[Layla Lalami]

No matter how confused Leo becomes, he does have a love of books. He always has a love of books. Why do you think this is something that is retained in Leo?

[Binny Kirschenbaum]

I think when you're so connected to something, as in his case, he's so connected to reading and learning and studying, that it almost becomes a part of you. And giving that up was maybe the most painful thing for him, but also for her, knowing that this is what he valued. This was. It's almost like, you know, an artist not being able to paint anymore, or when people lose their vision and their Passion or livelihood was contingent upon being able to see. And suddenly these things are gone. And so I think that that was emblematic of not just who he was as a person, but then when he loses his ability to read. It was sort of a breaking point, or it was a breaking point.

[Alison Stewart]

Addie gets frustrated and overwhelmed in caring for Leo, though she loves him. You write, you call the New York City Suicide hotline because there's no such thing as the homicide hotline. And you are desperate. At one point she thinks she might hurt him. One does she really think she's going to hurt him or is she just expressing herself?

[Binny Kirschenbaum]

I think she's just expressing herself. She's furious, but it's more fury at the world, fury at what's happening, that her life is falling apart. And so there is a rage. And also she's quite dependent upon him. And so she feels that his life is being taken away and her life is being taken away. And I think that rage might be a natural response to something like that. And frustration of just still not knowing what's wrong with him at that point and still, but encountering all these. And so the frustration of not being able to find out what's wrong and things are decidedly wrong by then and she doesn't know what to do and he's not rational anymore, so he can't really discuss it with her and so she's just losing it.

[Alison Stewart]

After his diagnosis, many of their friends seemed to disappear. Why do their friends disappear?

[Binny Kirschenbaum]

Well, I think there's several factors. One being that because it was early onset and so people might experience at that age their parents having dementia or if they're younger, their grandparents. But for one's partner to have it, when you're not elderly in that way, they're still middle aged and their lives are those of middle aged couple. And I think it made people very nervous and very uncomfortable. And there is also that factor, unlike other illnesses and disease, I think when it's a disease of the brain and somebody is regressing as he does, there is pity. And pity in that way of oh, I really just don't want to be around this.

[Alison Stewart]

Your book's been out for a few weeks now. What kind of responses have you gotten from people? What have you gotten from families dealing with Louisiana?

[Binny Kirschenbaum]

I actually haven't heard from anybody. I don't think the responses, both critics and people I know have been really positive. So that's always a relief. But I don't think that I've heard from anyone who did have Lewy Body but and in part maybe because I backed away from talking about it as memoir at all.

[Alison Stewart]

And finally, it's written in the second person.

[Binny Kirschenbaum]

Yeah.

[Alison Stewart]

Yeah. Addie's referred to as you.

[Binny Kirschenbaum]

Yeah.

[Alison Stewart]

Why did you decide to write about it in the second person?

[Binny Kirschenbaum]

It's funny, when I first started to write it, I just instinctively that came out, and it's not something I would usually do. And then I thought, oh, no, you can't write a novel in the second person. And so I tried it in first person, and that started to feel almost too cloying and sentimental and a little too goopy, you know? And so I then tried it in third person, and that felt like I just couldn't get inside of Addie well enough. And somehow the you created enough distance to keep it from being sentimental and creating the distance that I needed for her to say or think the things that she does. But yet, at the same time, it felt like I could connect as a writer with the you. So after, I think, maybe six or seven times, switching back and forth and back and forth, I finally settled on the you. And when I first told my editor, he balked. And. But he asked to read some, and I sent him, I think, the first 50 pages, and he said, oh. He actually forgot all about it as he was reading, so it was not a problem.

[Layla Lalami]

The name of the book is Counting Backwards. It's by Binny Kirschenbaum. Thank you so much for being with us.

[Binny Kirschenbaum]

Thank you for having me. It was a pleasure.

[Ira Flatow]

This is Ira Flato, host of Science Friday. For over 30 years, the science Friday team has been reporting high quality science and technology news, making science fun for curious people by covering everything from the outer reaches of space to the rapidly changing world of AI to the tiniest microbes in our bodies. Audiences trust our show because they know we're driven by a mission to inform and serve listeners first and foremost with important news they won't get anywhere else. And our sponsors benefit from that halo effect. For more information on becoming a sponsor, visit sponsorship.wnyc.org.