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Emily Silverman

You're listening to The Nocturnists: Conversations. I'm Emily Silverman.Today I speak with Professor Cindy Weinstein and Dr. Bruce Miller. Cindy is currently the Ely and Edythe Broad, Professor of English at the California Institute of Technology, where she has worked since 1989. From 2018 to 2019 she was an Atlantic Fellow in the Global Brain Health Institute, based at UCSF and Trinity College in Dublin, where she studied neurology with an interdisciplinary group of scientists, artists, social scientists and physicians. Bruce holds the A. W. and Mary Margaret Clausen Distinguished Professorship in Neurology at the University of California, San Francisco, where he directs the Memory and Aging Center. As a behavioral neurologist whose work emphasizes brain-behavior relationships, he has reported on the emergence of artistic ability, personality, cognition, and emotion with the onset of neurodegenerative disease. He's been awarded the Potamkin Award from the American Academy of Neurology and elected to the National Academy of Medicine.Together, they have written a book called Finding The Right Words, a story of literature, grief, and the brain, about Cindy and her father, Jerry Weinstein, who lived and died with Alzheimer's disease. Before we dive in, I've asked Cindy to read an excerpt from the book. Here's Cindy.

Cindy Weinstein

Thank you, Emily."I am fifty-eight years old. The age my father was when my mother called to tell me he had Alzheimer's disease. I am also in Berkeley, the same city I was in when I was twenty-five and got that phone call. A part of me has been frozen in that moment, even though over thirty years have intervened, during which time I got married, had two children, worked at Caltech, wrote some books and went to my father's funeral.I have returned to Berkeley to mourn the loss of my father—in Judaism, this is called sitting shiva—more than twenty years after he died. To say goodbye to him in the way I know best, which is to study, think, and write a book. I have always known that, unlike many memoirs about Alzheimer's disease, the book I would write about my father was one I wouldn't write alone. Having spent thirty years studying literature, I know that only someone who knows a field inside-out can explain its complexities in a way that can be understood by all readers.Thus, I asked Dr. Bruce Miller, founder of the Memory and Aging Center, to write a book with me about dementia so I could tell the story of my father's Alzheimer's disease, and he could explain the science of dementia to people who may not have a degree in neurology.What Bruce probably didn't know when he agreed to write this book was that I was also asking him to sit shiva with me. How could he, when I didn't know I was sitting shiva? But his empathic embrace of my story and his willingness to use it as a departure point to help others dealing with dementia has allowed me to recover. To recover from some of the pain of watching my beloved father become unglued and to recover memories of him."

Emily Silverman

Cindy and Bruce, thanks so much for being here today.

Bruce Miller

It's great to be with you, Emily.

Cindy Weinstein

Thank you for having us.

Emily Silverman

So, the book you've written is so unique, because it's a dialogue. We have Cindy coming from the perspective of a literary critic and a lover of books. And we have Bruce coming from the perspective of a physician-scientist. So, to begin, I'd love to hear a bit from each of you about your passion for what you do. Starting with Cindy. I was really taken by this memory of the summer at Andover, where you read 12 books in six weeks, I think it was. Tell us about that time and this moment where you knew you wanted to spend your life with books.

Cindy Weinstein

My mother was very good at finding things for me and my siblings to do over the summer—whether it was sending me to Andover or sending my brother to study science in Wyoming. She found these programs. I don't know how she did it, but she did. And she figured out how to get me to Phillips Academy Andover during the summer, and I signed up for two English classes. And I, as you say, read twelve books in six weeks, and I knew this was what I wanted to do for the rest of my life. When I was 16 or so, and when I was in high school, I remember reading Ionesco's Rhinoceros, where a bunch of rhinoceri run around the town. And this was very different from my life in the suburbs of Verona, New Jersey. So I love literature, because it showed me lives that were really different from the one I was living. Most adolescents want to go elsewhere, and so literature allowed me to do that. It got more complicated when my father got sick. And I turned to literature, also as an escape, but also as a way to understand better the sufferings of some of my favorite characters. And in the book, I talk a lot about Moby Dick. And I talk a lot about Ahab and how I felt connected to Ahab, and that was not a good thing. But literature provided me a kind of window into my own experience of grief.

Emily Silverman

Bruce, your life's work has been neuroscience, neurology, especially behavioral neurology. You talk in the book about your mentor, a physician named Frank Benson. Tell us a bit more about your path to your profession.

Bruce Miller

Like Cindy, I was a voracious reader. I read from the time I was six, almost continuously. After avoiding a single science class or math class in college, I realized that I fallen in love with molecules and chemistry and biology and had to take a full two years after graduating to study organic chemistry, biochemistry. But I had a passion for this that I did not have for any of the other humanities that I had thought I might go into. And once I'd gone into medical school, it was clear that the precision, the intersection with people's lives and their stories, and diseases of the brain was a continuous fascination for me. And it has been a really rich life as I've seen people with diseases that cause changes in behavior and cognition. And for me, this is where I belonged.

Emily Silverman

And will you tell the audience briefly about Frank?

Bruce Miller

Neurology, when I went into it, was almost a cruel specialty. It was haughty and remote, and it was, "We are smart and we figure out this diagnosis and then we wash our hands of the problem." Frank was very different. He was very democratic, utterly scorned elitism, loved being with patients at the bedside, loved figuring things out. And for me, he was just a breath of fresh air. And not only was he the best clinician I ever met in my life, but he was also the kindest mentor I could have ever found. And his real love for people—he taught me so much in that way that I really needed to learn.

Emily Silverman

Cindy, one of my favorite parts of the book was the descriptions of your dad when he was healthy. It's almost like a character study. Tell the audience a little bit about your dad. I know we don't have enough time to cover everything from that chapter, but just paint a picture of him for the audience, if you don't mind.

Cindy Weinstein

Sure. That's a happy question. Thank you. He was full of life and full of love. He was very funny. He would have a lead role, oftentimes, in the temple musical—he was very proud of that. He would teach me how to dance, and teach me again how to dance, because I would always forget. So, every bar or bat mitzvah, we would go to together, I would learn how to dance again. He loved music. He loved Cat Stevens and Carole King. I remember playing Tea for the Tillerman on the record player over and over again. He loved to play golf, he liked to gamble. And when he started having difficulty with numbers, and with gambling, it still gave him pleasure to watch people gamble. He and I went out for dinner every Tuesday night, and talked about everything under the sun. He liked to listen to me practice piano. He was everything.

Emily Silverman

And he died of Alzheimer's many years ago. But you didn't embark on this book project until recently. So tell us about the timeline of this project.

Cindy Weinstein

I knew that I wanted to write a book about my father for quite a long time. And because I also needed to write more conventional academic work to succeed in my career, it took me a while to find the right time, professionally, to write the book. But I think more importantly, it took the right time emotionally. I had to be strong enough to be able to look at my father's Alzheimer's. So it wasn't until decades later, that I had the fortitude to be able to do that. And as great fortune would have it, I was able to meet Bruce and Bruce, talked to me about GBHI and coming to UCSF. And I had written a couple of drafts of chapters to share with Bruce, so he knew what he was getting into, kind of, when he invited me to apply to GBHI—not sure he knew everything. So, really, it wasn't until many decades later, after my father died, that I was, as I said, able to really remember both the very hard parts of his disease, and then the wonderful memories of him before the disease, which I had forgotten because it was too painful to remember my healthy father.

Emily Silverman

We get this scene of the two of you meeting at the UCSF Sandler Building. And Bruce asks Cindy, "Do you want to learn some science?" And then Cindy replies, "Yes. And what books do you enjoy?" Tell us about that meeting.

Cindy Weinstein

That's a really great memory. So, I adored Bruce, really from the moment I met him. He knows that. Our tastes in books was quite different. And I told him how much I loved Moby Dick. And he told me how much he loved Thomas Pynchon. And I didn't think that would be a problem. Pynchon is not my favorite author. And then, and then Bruce told me to read this Pynchon novel that was basically drugs and rock and roll. And because I'm a good student, I went home and dutifully read it. I thought to myself, "Why is he telling me to read this book?" But Bruce had just such good humor, and was game to take on this strange project. And once I was accepted into GBHI, there was nothing that was going to stop me from making this book happen.

Bruce Miller

I was really the lucky one here. I had no plans for writing a book and Cindy dropped down in my office, we had an immediate rapport, minus her lack of appreciation for Pynchon. And that's really been the only conflict we've ever had. I don't think we'll ever resolve it. But writing opened up so many doors in my own mind, and I learned so much about what I thought I knew about science, but didn't know at all. And also she pushed me to write more personally. And it helped me to think through some of the things that I had experienced through the course of my life—a little bit about my father's death. So, for me, it was an exploration of science, of humanity. It was just tremendous.

Emily Silverman

I want to get more into the process of writing the book together. But before we do, I don't want to leave Pynchon quite yet. What do you love about that book?

Bruce Miller

Well, I didn't want to make her read a 2,000 page book. So I took a short book that projected me back to the 60s. It happens in Hermosa Beach—I'd lived very close to that when I lived in LA. It's paranoid, like every book that Pynchon's ever written. It's about Nixon. It's about how the war against marijuana in Northern California decimated so many lives. And it's about betrayal. His girlfriend ends up falling in love with a member of the FBI. It's just this mag... well, sorry, Cindy. But it's this, this magnificent, very short clip of, as best as I've ever read, of what the 60s were like.

Emily Silverman

So, tell me about the process of writing the book together. As I said, it's a dialogue—we hear from Bruce and then Cindy, and then Bruce, and then Cindy. So were you swapping chapters? Or what were the logistics of how you created this?

Bruce Miller

There was really just like that—it was a back and forth. This sort of slowly evolved. Cindy and I realized we needed a memory chapter. So we kind of wrote that together—it was the last thing that we did—for me the hardest and maybe most interesting chapter that I had to write. We decided that we should write about behavior, because this is an area I think a lot about. And it's an area that is so devastating for patients and families. And so it was very much a back and forth. And I think mostly, we really liked what each other wrote. And there wasn't a lot of editing or change, at least that's my memory.

Cindy Weinstein

I had written a chapter on my father's spatial disorientation and another one on word-finding. And, for me, one of the most amazing things about writing the book with Bruce was, I didn't know what the other chapters would be. What was so interesting to me, is I would tell Bruce a story, a memory that I had, for example, I was telling him that years before my father was diagnosed, he started having hearing difficulties, and my mother brought him to a hearing doctor. And there were no problems with his hearing, according to the doctor, who then asked my mother, how long my parents had been married. My mother said, decades, and the doctor said, "Well, your husband just doesn't want to listen to you anymore."I remember telling Bruce that story, and he said, "That's a chapter, you need to write a chapter about diagnosis." I didn't know I was going to write a chapter about diagnosis—that became the first chapter. Then the behavior chapter came about, one, because it's really Bruce's area of expertise, and, two, I described a memory of my father pulling a sink out in the nursing home. And when I told Bruce the story about the sink in the nursing home, Bruce said, "Okay, that belongs in the behavior chapter." And then the memory chapter ended up being the last chapter—I thought it was going to be the first one—because when I started at GBHI, my understanding of dementia was very limited, and I only thought about it in terms of memory. So, I thought memory would be the first chapter.And in the course of writing the book, Bruce said to me, that the chapters were episodic. They were good, but there wasn't a narrative arc. And once he said that, what we both realized was that memory needed to be the last chapter. And once I realized it was the last chapter, it occurred to me that what I was doing in the first four chapters, was recovering my own memory of my healthy father. And so it was this amazing collaboration, where Bruce became the literary critic in certain ways. That's my recollection of how the book became the one that you have.

Emily Silverman

Cindy, in the book, as you just mentioned, you share several anecdotes about your dad. We have the scene where you're in the grocery store with him, and he can't think of the word "croutons." We have the scene where you're at the diner, and he's trying to pour syrup on his pancakes, but he hasn't opened the packet. We have the scene where he's swinging his golf club in the wrong direction, on the golf course. And we hear these stories from you, and then we turn to Bruce, and Bruce explains the scientific basis of these episodes, and of this disease, and how it works. And so I'm wondering for you, Cindy, what was it like to learn, after all these years, the science of what was happening to your dad through Bruce's expertise.

Cindy Weinstein

It was ultimately really liberating to learn the science, in that it gave me a vocabulary that was outside of the vocabulary of grief and sadness that had been keeping me company for so long. And maybe even more importantly, is that it turned the lens back to where it belonged, which was to my father. And so the science gave me a way of making my father's illness, my father's illness, and not only my own pain about my father's illness. And that was psychically really important for me. I should also say that, one other anecdote I tell was when Bruce gave me a precise diagnosis of what my father had, because in the 80s, everyone who had dementia had Alzheimer's. And of course, the science has progressed so much that there are many, many different diseases that fall under the category of dementia. And when Bruce told me that my father had early-onset Alzheimer's, which meant that he was younger than 65, with the logopenic variant, which meant that he had trouble with word-finding. That diagnosis was such a, it was a relief. It was, "Oh, that's, that's what it was!" And I'm forever grateful to Bruce for that.

Emily Silverman

One of the first symptoms is this word-finding difficulty that you describe, which I imagine must have been especially difficult for you, Cindy, as somebody who's such a lover of words, and a lover of language. And then we flip it over to Bruce, who explains how there are all these different types of aphasia. I want to show off your brain, Bruce, for the audience, can you just walk us through a little bit of these different types of language loss and the different categories and how you think about them?

Bruce Miller

Yeah, so there's a little clip of the chapter on diagnosis. It's called, "Where Dementia Decides to Dance." It's about where the disease begins in the brain. I think the more we think about that, the more we learn about who that person was before the illness started. So we've learned that almost 50% of the people who get Alzheimer's disease, where language is the first manifestation, were dyslexic, or didn't read. So this early-life pattern explains to some extent, the loss of function later in life, it's profoundly interesting. And I think it has potential for new therapies as well. So, a lot of my work has focused on the frontotemporal dementias and they hit the frontal lobe, and the anterior temporal lobe. And if it begins on the left side, if it begins in the frontal lobe, it begins with difficulty generating speech. And so the speech becomes much less likely to occur, people become quieter, there are shorter sentences, and eventually, even at a time when someone is fully functional, they may be mute. That we have since as we've described it, Marilu Gorno Tempini was the one who did this. We've learned that almost all those cases are caused not by Alzheimer's, but a type of Frontotemporal dementia, where tau protein is responsible. So for me, as a neurologist, this is so amazing. Why does a language circuit become vulnerable to a specific molecule? Ultimately, I think we're gonna be able to get rid of that bad molecule. So it's very, the diagnosis becomes an in-road into treatment.

Bruce Miller

And then maybe the most interesting of all these language deficits is the one that begins in the left anterior temporal lobe, which we knew almost nothing about until we started studying these diseases. And this is called the "semantic variant." And what happens is people lose words that they accumulated early in life, in particular, nouns. So, often it's birds, or animals, or types of food. And remarkably, they lose the entire concept of what that animal or that word consisted of. So, the knowledge that is so much part of growing up, as a child—we learn that there's a animal, and then a bird, and then a hawk, and then a red-tailed hawk—all of that gets stripped away as we lose the anterior temporal lobes. And these people are extremely interesting because sometimes that releases visual creativity. And we've written about people with this type of dementia, where artistry often heralds the onset of the illness. One of the things that I have learned as I've studied these different disorders is that we must focus on strengths and also vulnerabilities that were present early in life, if we're really going to understand the mechanisms of these illnesses.

Emily Silverman

Artistry often heralds the onset of this disorder. This is so interesting to me. So, for example, might somebody start painting and then that's the prodrome and then six or 12 months later, they start losing words. I mean, do we see that?

Bruce Miller

Yes, for us, the most salient example is the musician Ravel, who developed a progressive language disorder. And he wrote Boléro before he got sick. But we know he was soon to have a profound deficit in language. And this is a story that we see over and over again—a creative burst and music and art. This is really the beginning of a disease where the front part of the brain turns down, and the back part of the brain where we perceive and create art turns up.

Emily Silverman

Bruce, you encounter patients and families with dementia all the time, but what was it like for you to take this deep a dive into somebody else's story and the story of their family?

Bruce Miller

I'm profoundly grateful for the dive. I think it changed me as a person. It made me see the pain that people go through in a way I never had quite seen it before. And I think Cindy pushing me to think about my own experiences that affected my life, my brain, forced me to think about this from the point of view of patients. I've always cared about this, but I left, I think, a much better doctor.

Emily Silverman

You said something earlier, like, "I didn't understand the science as well as I thought," or maybe, "I didn't know how to explain it as well as I thought," How did explaining the science to Cindy, through this book, impact your understanding of your own knowledge?

Bruce Miller

When you have to explain something, whatever it is, you have to really understand it. And I think you think you understand something, until you start to put it on paper or explain it to someone, and the face of the person you're talking to turns blank. And in the case of memory, I realized that the confidence that scientists have about what they know about memory is so wrong. It's so deficient. And there were parts of memory that I couldn't even begin to explain to a reader. Not because it's incomprehensible, but because science has not grappled with it.

Emily Silverman

Cindy, you said earlier that books and literature served as a sort of escape-hatch or a coping mechanism for you to deal with your grief around your father's illness. And you've mentioned Moby Dick now a couple of times, and you actually dedicate a chunk of the book to your love of Moby Dick and how you've read it multiple times over your lifetime. So, for our audience, tell us a bit about Moby Dick. What is that story about? And why is that story so important to you?

Cindy Weinstein

There are two competing stories. There's the story of Ahab, having lost his leg to Moby Dick and his desire for vengeance. And that story is pretty linear. The Ishmael story is about this melancholy person named Ishmael, who, when he's feeling especially sad, goes to the water and finds solace in the water. And he decides to join the crew of the Pequod, and participate in getting oil and killing whales. But really, the power of the Ishmael narrative is in his quest for knowledge about the whale. And his chapters are not linear at all. Some of my favorite chapters in Moby Dick are, when Ishmael basically says, I want to tell you about this particular part of the whale. And he goes through it, and that at the end of the chapter, he said, "But you know what, I really have no idea what I'm talking about. And I thought that the whale part meant X, but it really means Y and wasn't it fun along the way to try and find out what it meant?" And the chapter that often comes to mind, and I talk about it in the book is when Ishmael's trying to figure out what the heck comes out of the whale spout. And he ends up saying, "If I really wanted to know, I would have to put my face in it and probably die as a result. So I'm just going to give you a whole bunch of possibilities about what may be coming out of that spout." Ishmael—it's all about process, and it's all about aesthetics. And it's all about the other.And what I love so much about the Ishmael chapters are sort of the embrace of language and metaphor and figuration and you just luxuriate in the connections, Ishmael is able to make linguistically, whereas for Ahab, Ahab looks at the world and sees himself and sees his pain. And he thinks that killing a whale will make him feel better. And I read the book for the first time when I was 16, and it blew my mind. And Lord knows how many times I've read it since then. And it's kind of a way for me to take my psychic temperature. So, when my father was really, really declining, I connected with Ahab, in a way that was not good. Thinking that there was something out in the world, if I could only destroy it, my pain would go away. And then when I'm feeling better, and emotionally healthier, it's Ishmael's love of language and aesthetics and his love of Queequeg, another person on the ship, that's who I connect with. It's also just a really funny book. And one of the things I try and do when I teach it to my students is to take the book off of its pedestal, so that students can really have fun with it, and enjoy the bounty, the plethora of Ishmael's linguistic play.

Emily Silverman

I love this account of how you interact with the story differently depending on your mood, or your psychic state or what's happening in your life. And it's been a while since I've sat in an English class or a literature class, but I'm curious, do you bring any of that to your students? When you're teaching, do you focus more on the text and the characters and the shape of the plot? Or do you ever talk about how the individual students are responding to the texts and mapping their own life experiences on to the text?

Cindy Weinstein

I don't talk that much about it. But I do encourage the students to talk about their own personal relation to the novel. And I taught it when the pandemic first happened and Caltech closed its doors. And we were reading Moby Dick and the students in the class were reading it at home in their beds. It was so moving when they were telling me this. They loved reading Melville at home, because that was the place where in high school, they loved reading literature, and they come to Caltech and spend a lot of their time on math proofs and physics and chemistry labs and things like that. So, it was a very interesting experience, I think for the students to read Moby Dick at home. And I also think, even if you haven't read Moby Dick, you have a relation to it. It's in the DNA of our culture. So, students come to the novel with all sorts of expectations. So, it's really important, I think, for students to be able to share what they think the book is about, and then their actual experience of reading the book. And did those intersect those diverge? Guess that's a long way of answering your question. The answer is yes!

Emily Silverman

Bruce, your mentor, Frank once said "I'm a searcher not a researcher." And I think the same could probably be said of you. And one thing that I've noticed about UCSF's Memory and Aging Center is how special it feels in the sense that there's this interdisciplinary spirit. There's this artist in residence program, you have the GBHI program, the Global Brain Health Institute program, where you bring in authors and musicians and anthropologists and just all sorts of different seekers to the table to look at the brain and examine it. So, how have you been able to make that succeed and thrive at UCSF?

Bruce Miller

We really care about the patients. The research, although critically important for the future, the patients are now and the people have come there. They come from all sorts of different places. One of our most brilliant scientists, Bill Seeley comes from rural Michigan, I always say their brains drove them to San Francisco and to our program. And we're more like a family than a competitive research group. We're, I think, almost utterly without any sense of competition. The diseases are what we care about. And the artists have enhanced so much the experiences we've had, whether it's Heidi Clare who started the Memory and Aging Center band—a bluegrass fiddler. Whether it was Jane Hirshfield, the incredible San Francisco poet who taught me about death and dying in a way I'd never learned in medical school. These artists have changed the way we look after people. And the latest. And this was what brought Cindy—enter the artists and the people from underserved communities, who are going to try to change the course of these degenerative diseases. And it's been a really rich and roller-coaster ride for me, it's changed every year. And, I realize, I've passed 70, my time is short. And I just have such a sense of urgency about finishing the things that we have started.

Emily Silverman

Turning back to you, Cindy, you talk a lot about why writing this book was important to you. You talk about facing down a part of your life that you had previously avoided. You talk about dealing with feelings of guilt and regret about living far away from your dad—something that I relate to personally, having lost my mom to dementia earlier this summer. And she lived in Florida and I lived here in San Francisco. So, a lot of different ways in which this book helped you address all of those things that you said, you know, over the last decades, that you hadn't necessarily had the time to address. So, I'm wondering, what does it feel like to have finished this book, to be on the other side of this project?

Cindy Weinstein

Well, first, I'm really sorry to hear about your mom. It feels good to be finished, to have written the book. I don't think that one ever finishes grieving. And the idea of, "I was lost and now I'm found"—I think that that narrative is untrue, for many, for many people. And it was important for me to both tell this story of recovering these memories, and how happy they made me while also keeping in mind the fact that when you lose someone, you've lost them and it'll come in waves and you don't just put grief to bed. It wakes up. And you don't know when it's gonna wake up. But what I think about finishing the book is how grateful I am to Bruce, for helping me tell the story in exactly the way I wanted to tell it. I wanted it to be personal—daughter grieving her father. I wanted it to be literary—an English professor reflecting on her love of books. I really wanted to try and make the book speak to as large an audience as we could. And so I'm really proud of this book. And I hope that it helps people, my father would have wanted that. And so it's a gift to my father, it's a gift to me, and hopefully, readers will receive it as a gift to them.

Emily Silverman

And Bruce, how does it feel to be on the other side of this project with Cindy?

Bruce Miller

Well, I was worried I'd let her down. That was my constant worry. Especially with the memory chapter, which was our last, and Cindy was waiting, and she had finished her part. And then, gratitude that I had learned so much in this process. That and the chance for us to talk about this book at events like this is very meaningful, I think, to me and to Cindy. So mostly, gratitude is the way I feel now.

Emily Silverman

I have been talking to Professor Cindy Weinstein and Dr. Bruce Miller about their book, Finding the Right Words: A Story of Literature, Grief, and the Brain. Cindy and Bruce, thank you so much for speaking with me today.

Cindy Weinstein

Thank you.

Bruce Miller

Thank you.

Cindy Weinstein

It's really...

Bruce Miller

It's wonderful.

Cindy Weinstein

Thank you.