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Emily Silverman

You're listening to The Nocturnists: Conversations. I'm Emily Silverman.
One of my favorite places at UCSF is the Memory and Aging Center. They do amazing internationally-renowned biomedical research, but they also have a thriving artistic community, including a Hellman Artist in Residence program, which I was lucky enough to participate in in 2020, and the Global Brain Health Institute Fellowship, which brings in people from all over the world to create art inspired by neuroscience. I have to admit I feel like I have found a bit of family at the MAC, which brings me to today's episode featuring the 2019 Hellman Artist in Residence, playwright, actor and producer Jake Broder.You may have seen Jake on TV shows like Silicon Valley, The Morning Show, The Patient, but he also has deep roots in the theater. He wrote a play, Our American Hamlet, which premiered at the Commonwealth Shakespeare Company and was nominated for Best New Play by the Independent Reviewers of Boston (IRNE). He wrote a musical, Miravel, which won the L.A. Drama Critics Circle Award for Best Score. He's written for TV. He's a musician who trained at the Guildhall School of Music and Drama in London. The list goes on and on.Jake came to UCSF to write a play about Anne Adams, a brilliant biologist who got sick with a type of dementia called primary progressive aphasia, or PPA, and after she got sick, started painting prolifically, even though she had virtually no artistic background. Anne's most famous painting is a visual representation of a musical piece, Boléro–that repetitive piece of music that was composed by late 19th and early 20th century composer Maurice Ravel. Interestingly, Ravel too was thought to have suffered from PPA. You may have heard the story of Anne and Maurice on the podcast RadioLab, and we'll put a link to that in the show notes. But Jake turned their story into a full length play, where Anne and Maurice commune with each other across time to explore not just what they've lost to dementia, but also what they've gained.Because Jake wrote the play during the pandemic, its first performance was staged virtually, and his wife, actor Lucy Davenport, delivered an amazing performance as Anne, and the rest of the cast was fantastic too, which is impressive considering that they were acting on Zoom. Although, I have learned that the play is going to be staged in person in San Francisco this summer with a full orchestra, which I can't wait to see.But for now, I want to set up this excerpt from the virtual version of the play. We have composer Maurice Ravel who is preparing for brain surgery because his doctors think there's a small chance his symptoms could be from a tumor, and he's arguing with Anne. After the clip, you'll hear a panel discussion that I moderated live at the UCSF Memory and Aging Center with Jake, the playwright, his wife, Lucy, the actor, and, of course, the Director of the Memory and Aging Center, neurologist Dr. Bruce Miller. Because the panel was recorded live, the audio is a little rougher around the edges than usual. But I hope you'll still enjoy the conversation as much as I did. Take a listen.

Narrator

Anne’s studio. Anne stands, painting arbutus.

Maurice Ravel (Conor Duffy)

So it's been decreed. I'm not mad–there's an actual medical problem. They think it might be Pick's disease, or perhaps a tumor. I'm told surgery is a great risk, but the only chance of returning to any semblance of normal. It might cure me, but will most likely not go well. If it's a tumor.

Anne Adams (Lucy Davenport)

It's not a tumor. There's no tumor.

Maurice Ravel (Conor Duffy)

You don't know that.

Anne Adams (Lucy Davenport)

I do. Don't have the surgery. Don't just give up.

Maurice Ravel (Conor Duffy)

Why not? What's better? If you can answer that.

Anne Adams (Lucy Davenport)

I don't know. I can't.

Maurice Ravel (Conor Duffy)

You can't. Pathetic. Shall I hang around until I forget how to breathe? That's what you do.

Anne Adams (Lucy Davenport)

That's just cruel.

Maurice Ravel (Conor Duffy)

No, no. What's cruel is you expecting me to wait and wait for something that will never come and have hope in something that is supremely hopeless. By definition, insanity. It's perverse in the extreme. I want to be able to write music. And although I am a composer decidedly of the second tier, without that, I don't know why I'm on this earth. It's not to love or to be a father. My children are my notes. And if I cannot tend to them, it is best that I am not.

Anne Adams (Lucy Davenport)

We can live with these conditions for longer now. You might be a little tough to understand.

Maurice Ravel (Conor Duffy)

Why would you want to live longer? If my diagnosis is wrong, that suits me just fine. Every single person in that group Robert went to–to a man–each one of them wishes their partner was dead. Robert wishes you were. And if you ask any of the people who have this, whether the pleasures they take are worth the pain, I'll wager all of them say, "No." I do. That the knowledge they're creating so much pain around them, as well as feeling incapable, that makes a pretty good case for letting the diagnosis be wrong. Letting them have a surgery that will quite possibly cure them, but will most likely kill them, but at least they die in their sleep with their last conscious thoughts, a shred of hope, and a formal goodbye to those who are left. There's dignity in that. And you with all your advanced medical science, you get to watch your mind decay to the point where you shit yourself daily before you choke to death. And everyone who loves you has to watch. Is that better? What is that but exquisite torture and arrogance on the part of those who think discovery is worth the human costs? Well, there is a cost and for what? For what? There's an elegance in nature, Anne, which has beginnings and endings. It's hubris to fight against that after a point. Have you ever thought that maybe I have it better? What are you doing? Why do you want to live longer? What are you painting? Why, Anne?

Emily Silverman

So Jake, beginning with you. You're a writer. You're an actor. You also have a musical background. Talk to us about how you came to the MAC. How did you find out about this program? How did you get interested in neuroscience? And how did you land here?

Jake Broder

I was listening to Radiolab and I heard this story and was blown away by it. It was one of those not-be-able-to-leave-your-car-until-it's-over kind of moments. And then I started just digging into it and all roads led to you, to Bruce. And after I got to a certain point in the research, I just wrote a fan letter saying, "I really liked your work. Could I ask you some questions, please?" And to my delight and surprise, he wrote me back saying, "Oh, are you Jake from Silicon Valley? I watch this show with my wife on Sundays." And I said, "Uh, yeah." And so we started talking, and I asked a bunch of questions. And I was sent a book–the neurocircuitry book. It took me about six months to work through it and figure out like...highlighted the chapters that seemed relevant, and then just plowed through the dictionary on one side and the book on the other. And then wrote follow-up questions and eventually was invited to come and be the Hellman Visiting Artist up here. And that sort of got me into all this.

Emily Silverman

And the story of Anne, she died in what year? 2000...

Jake Broder

I'm gonna say eight.

Emily Silverman

Eight. And Robert is still alive?

Jake Broder

He's alive.

Emily Silverman

So, for you, Jake, when you put this together, you had some primary sources already. You had Bruce. You had the Radiolab episode. But talk about where else did you look to for research? Were you able to meet with Robert? Or was it mostly the neurocircuitry textbook? Because so much in here is nonfiction adapted with strawberries and all the little details. Where did you get all of that information?

Jake Broder

The key to unlocking this as a piece of art, and scientifically, came from Bill Seeley. His paper in Brain and the chart that he made that had the disease...on the x-axis was "Time" and the y-axis was "Severity of Symptoms," and on the negative side, and possibly "Creativity" on the positive side. And it was a chart that went up and then went down. And from that chart, and the paintings that she made at certain times suggested certain symptoms, which suggested certain behaviors, which suggested kind of a dramatic character arc. And so that and those things start to interact. And then coming up here and seeing people with lived experience and how people dealt with it and how visiting the clinic and sitting in on a conference was the most extraordinary thing and seeing where the rubber meets the road in terms of how diagnoses are given, how they are received and hearing clinicians talk about that. Because this is about finding ways to look into what it feels like, not just what it is. So there was an incredible amount of data about that here. But I would say if there's one thing it was that paper.

Emily Silverman

And speaking of what it feels like, for you, Lucy, you had to really tap into that to play the role of Anne. And so it's sort of a two-part question. First, how did you prepare for this role just in terms of Anne's character? But then second, because this was happening during the pandemic, how did you prepare to play the role in this format? Which you've done film, TV, and stage, but I imagine this was a little different.

Lucy Davenport

I had this little video clip–which I think maybe we got through you, Bruce–which was the question that Anne's asked, when she's asked what her address is, or it might be her name. Anyway, I had that little clip of her actually being asked that question. And she's quite advanced in the disease there. And there is this enormous pause longer than you would ever, ever as an actor, ever leave a pause on stage. You can see she struggles. And that was my starting point to see her. And there's lots of photographs, and I looked at photographs. I looked at other videos, other people with FTD. But that was, to me, so magical, because it was actually her. But also it gave me the bravery to just see how long that struggle is. Just that moment.Sometimes as an actor, I think you just get that one little piece and you're like, "Okay, that's how brave I've got to be." And then also, we never were in the same room as actors. We were in our garages, or our studios, or in lovely Conor/Ravel's case, in his son's bedroom with a white curtain. We were all on our own. And for me as Anne, that really helped because I was in this increasingly small box as Anne and the box got smaller and smaller. And I literally was in a box in my garage and isolated. And everything about the pandemic just helped with that. So I was able to sort of allow that to happen. And that in some ways, just was super helpful.And I think this happened afterwards, Bruce, and now of course the timeline really gets a bit mushy, but I so wanted to connect with her joy, and not with her self-pity. And I think that's written into the script. And I think the experience of doing something that was trying to reach out during the pandemic and her trying to reach out in that situation she is in, was so parallel that hopefully, that sort of became part of the experience of doing it and trying reach out in that very dark time.

Bruce Miller

Well, it is, for me the most–and I'm tough about watching medical and neurologic things–it is the most authentic and moving characterization of the illnesses that we studied, that I think has ever been done. The progression of her being so lost at the end, but the joy was, I think, something that took us in a very different space.

Emily Silverman

Yeah, Robert says that Anne was vast, and that really came through. And I'm curious, just doing a pandemic play. So much of acting is feeding off the energy of the audience, especially when you're acting for the stage and on Zoom, there's always that moment of delay. And I have to say, I was so impressed with how the actors were able to cut each other off. And the dialogue, despite the Zoom delay...Was that difficult?

Jake Broder

This started with a script that was supposed to be a play that was going to be performed live. When I wrote it, I imagined it in The Littleton in the UK, which is sort of where I feel like I always internally write for in terms of size of space. That's just how I think. So this was adapted because the pandemic happened, and we had to adjust. So on a good front, the actors and the director took a very clean, strained tack with it and were doing performances that were essentially filmed close-ups for an hour and a half. Which meant that they had to really be restrained so that there was space for you to fill it up emotionally.

Lucy Davenport

We did rehearse on Zoom, and we sort of got used to it. But then we shot it on a different platform where we could interrupt each other. Also, I know all those actors, so that really, really helps. And also, it's almost like a sense memory. So to be honest, it sounds awful. But being in LA and doing a thousand of the shittiest commercial castings you've ever done, where you're like...and then this giant tomato whirls towards you, and you're the happiest you've ever been in your life. But also doing a lot of films where you're like, "Act to this tennis ball on a stick over here," because you're on a green screen and the real stuff isn't there. And it's pure imaginative process. And so you get to do that for like 20 years. And you're like, "Okay, I'm in a box." And if you actually have a face of an actor, like vaguely in proximity to you, and they're vaguely doing the right work in the right place you're like...real feedback. So we've actually done a reading of this place, but we couldn't look at each other because we have to face outwards. So one day, I'll actually do this play and be able to look at the actors, and I'll be like, "Oh my God, it's amazing." So yes, in some ways, training with a lot of technology, where in a lot of acting these days, you don't get the luxury of looking at your actors. So you sort of get used to it, which is the horrible truth, but it's true.

Emily Silverman

So this question is for the scientists. We learn in this play that language lives on the left side of the brain, and that when it goes away, these new areas of the brain turn on. So some of that is visual areas in the back. On the Radiolab episode, Bruce, you talk about possibly deeper structures, like the basal ganglia, that focus on repetitive motion being activated. And then we look at the quality of the arts. And some of the words that stood out to me are obsessiveness, the comfort of perseveration, patterns, lines, there's mathematical aspects of the work. Anne says, "It feels better when it's symmetrical. I really want it to be really, really." So the question, if you can answer it, and it's obviously very mysterious, but what is the brain doing here? And what is this art trying to communicate?

Bruce Miller

The idea that you could develop a skill on the setting of a degenerative disease was a little heretical when I first started observing it and it got a really rough ride in scientific journals. And I think that's because there wasn't a good theory to explain the phenomena. And also because it touched on something that I think neurologists and neuroscientists think is ephemeral and not interesting–you know, nothing more interesting than executive function or memory. And so, I think Anne's story is our story. It's a story of all of us, it's the way we shape our brains, a lot driven by some intense internal impulse that drives us. When I was a little boy, I was driven to read, I just had to read. And I think, Anne just had to paint. And I think this is not mystical or extraordinary in some ways. This is because the parts of her brain in the back were activated. The parts that see colors, that see symmetry, the rhythm I don't understand yet, but she was activated back there. Unlike a lot of our FTD patients who are activated, she did something with it. And she fiercely created. I think that's so beautiful the way Lucy and Jake characterize her courage and how difficult this was. She wasn't an artist. She started from scratch.Eventually, as you characterize so beautifully, Lucy showed that Anne is mute. At the end, she can hardly get anything out. And the correlate of this is the whole left hemisphere is masqueraded. But, when she showed him the artists, unlike the people who weren't artists, that this one little region in the left hemisphere that uses the right hand to paint, was actually bigger. So that's this fierce drive that Anne and others had, despite this attack on the entire left side of the brain, with the right side getting bigger because they're right-handed, they repetitively use that hand obsessively, driven in a repetitive way. So over a short period of time, it got bigger.

Emily Silverman

That moment in the play where you say that area in the back where it's working harder, you say "Anne that's you," and you say it's not mystical. Sounds pretty darn mystical. Here's a question. I know we don't have much time and we want to open it up to the audience, but just a couple more questions. First, I was really interested by Ravel's insistence that Boléro isn't music. So he says, "It is a fucking masterpiece. It's perfect. And, to tell you something else, I hate it. And there's absolutely no music in it whatsoever. None. A nautilus shell." This is for everyone. What do you make of this claim? Do you agree? Or do you disagree?

Jake Broder

That's what he felt, or there abouts. I mean, some of that is poetic license in terms of language. But he certainly expressed sentiments like that very strongly. It does have the elements of an etude. It's an interesting melody. It's repeated. The orchestration of it is the masterpiece. It's the slow accretion of things in this orderly way that starts small and becomes gigantic and uses everything. But it has a shape that conforms with nature in an extremely interesting way. People have had an emotional response to it that's outsize and gigantic for the best part of a century. So is it music, I don't know. But it works.

Lucy Davenport

If you listen to it being played in a symphony hall, which we did about six months ago, in the LA Phil…

Jake Broder

People freak out.

Lucy Davenport

You cannot hardly stop yourself standing up and clapping at the end. It's extraordinary. And yet playing it in an orchestra, which I did when I was 17 or something, it's excruciating. You play the same thing, you know, 137 times.

Jake Broder

More than that.

Lucy Davenport

It's so difficult to play. But from the outside, it's almost impossible not to stand up and clap at the end. It's It's an extraordinary piece.

Emily Silverman

In the play, Anne is really struggling with her identity and this question of "Which is the real?" And, "Before the illness or after the illness?" And, "What's the difference between conscious choice and pathological urge?" And Ravel answers her with that excerpt from the Tennyson poem. And so I'm just wondering, where did the Tennyson poem come from?

Jake Broder

In terms of working on the script, I think that's a bit that needs a bit of seating. That poem, to me, always feels like deep resilience. It's like, "Yes, it sucks. Yes, we're ruined. Yes, we're on our knees. We're fucked. And yet, you don't stop." And it always hit me in my deepest place of just looking at that. There's something so sort of rugged and beautiful about those words that make me not want to put my head down and cry. So, I just wanted her to have somebody because is Revel Revel or is it a reflection of her? She's reflecting back to herself something about resilience and staying with it. And come on, get up. It's okay that you're broken. We're all broken. Get up.

Emily Silverman

And I love the part that's, "That which we are. We are." Like it just felt like such a perfect answer to that question. Bruce, you're smiling and nodding.

Bruce Miller

Knowing what I know about Tennyson, he probably wouldn't have said, "We're fucked."

Jake Broder

He's more eloquent than me.

Emily Silverman

Bruce, your character in the play says, "You look at the art of patients like this, and you feel it has a profound connection to neurology and can be used to comprehend, diagnose, and possibly treat certain conditions." And then later, your character says, "But I was worried that proof of such plasticity of mine felt impossible. How do you feel today? Is proof impossible?"

Bruce Miller

We have Adam Staffaroni in the room here who is methodically looking at, not precise strikes, but constant recording of people who...various measures who are gene carriers. And I think that is a window into understanding this, because we're going to cure all of those genes. I mean, every one of them is curable. We believe that all these degenerative diseases begin with a prodrome of strength, where something is not working a little bit, which releases something that never really came out in its fullest. And in the case of these FTD, patients with left brain disease, they're almost all left brain. Almost all of them are left anterior temporal. They had dramatic changes in their strengths and their preoccupations, before there was any manifestation of disease. So that's, I think, when we begin to think about treatment. That's where the treatments have to begin. It's not when someone's sick. That's too late. So I think that that is really going to be the key–treating at the right stage of illness. And I think we're entering a different era now. The poor doctor has offered so little hope. We do a little better now than we did then. Because we think brain rehabilitation actually helps these people. Language therapy helps a little bit. We know it now. We didn't know it then. But we're going to have real medications to intervene. And then I think the question comes up: Well, when would it have been right to intervene in Anne? And what would we have lost?

Emily Silverman

To end, Bruce, you said something a minute ago about hope. And Jake, you said hope was a really important component of this project for you. So I was wondering, to end, if you could speak a little bit to that?

Jake Broder

As a non-clinician, non-scientist person who doesn't really know much about this, even I could see inside the art that was there–the art that is there–that there is something that was positive that was released. And if that was true in that case, then that speaks to a larger truth that is still being uncovered and still being understood. But the whole idea of disease that could start with a burst of creativity felt so profoundly hopeful to me, that I've devoted many years to try and uncover and tell the story as best I could. It'll take wiser minds than mine to be able to turn that into something that can help people, but I have a visceral instinct and always have since I encountered this, that there are healing properties waiting to be discovered inside this. I don't know why I know it, but I'm sure of it.

Bruce Miller

Not wiser, different. And I think the inner architecture of that relationship that you wrote, and Lucy captured in such an amazing way, is therapy. It is hope. I mean, it took me a long time to realize this that this was more important than my diagnoses for the couples. And our nurses get this. Jennifer Merrilees, Sarah Delaney...I mean, they know this right away, that we make a much bigger difference when we listen to these amazing stories. And they're so amazing. And the fact that we've neglected strength since the beginning of neurology is because people weren't curious about people's lives.

Jake Broder

We've got some catching up to do.

Lucy Davenport

We've had so many people who've come to us and been brave enough to say, "My dad, my brother, my uncle..." And if this play can help one person come forward, and we connect with them, then science and art, you know, hurray. Something about the fact that we are all here sitting together. And we can recognize the humanity of an experience that is going to be in all our lives, and that we can have that moment of connection, is possibly the most important thing we can do in our lives.

Emily Silverman

Yeah, there's healing properties in the science and the medicine, but there's tremendous healing properties in the art as well.

Jake Broder

This was always meant to be on stage. And as you felt at the end, hopefully, when you get to see the painting and hear the music together, having known the story of both where these things come from, and who these people are, having that experience, is the empathy bomb that is hopefully dropped on the audience where you go, "Oh, okay. So we've talked about understand what this feels like. But now I'm like seeing it and feeling it, in terms of here's this painting and here's this music, which is overwhelming, but it comes from the same place." And it hits you in your stomach, as opposed to just in your head. And the idea is that, and hopefully, it's just gonna be happening next year, is that we'll be able to do this live–with a symphony–and all the visuals would be projections and we're in the process of putting that together right now. So that's sort of where this always wanted to live and has always been the dream of this, but happening in a fairly large space with the drama happening and the visuals happening large-scale, and the symphony...So you have a finale, which is Boléro–60 pieces playing with that painting, which hopefully will blow your face off.

Bruce Miller

But the movie is coming too.

Lucy Davenport

Oh yeah.

Jake Broder

Oh yeah.

Emily Silverman

I know that the MAC has a partnership with The Conservatory.

Bruce Miller

Yes.

Emily Silverman

Is that partnership going to be leveraged to create this?

Bruce Miller

We think so, yeah.

Emily Silverman

We're not going to have to all fly to the UK to see this?

Bruce Miller

Well, we're hoping...

Emily Silverman

For both?

Bruce Miller

Everything. Anyone who deals with me gets like, you know, immersed and massively ambitious. Yeah, everything. All of the above. And Jake is the perfect person to carry out something ambitious.

Emily Silverman

What else?

Bruce Miller

Jennifer?

Jennifer Merrilee

We say, there's a lot to appreciate in this, and I think one of the really powerful narratives is the couple's trajectory through the disease. So I guess my question is, how did you come up with that? Or maybe that's to everybody here. Like, how did you know to include all of that in the story?

Lucy Davenport

I often function as the dramaturg on whatever script is going on. We are a small communist state. That's how we feel. So we talked about the stages of dying, bargaining, all that, because it is such a huge change for them as a couple. But also, what's really interesting is, what happens if it was an affair? What happens if it was a midlife crisis? How do you negotiate those changes? So think there was a lot of prism turning, but also what just happens in a relationship if your partner suddenly has a new hobby or buys a big new red sports car. So we tried to keep it very grounded in the reality because I think what was very tempting was to make the symptoms, symptoms. But of course, when you're living with someone who has an incremental disease and not symptoms, it's just that day.

Jake Broder

Well, what's the difference between behavior and pathology?

Lucy Davenport

Nothing.

Jake Broder

The point is, my sense of her was that she wasn't a super big jokester. But then, she started doing these paintings called...she adapted the Mozart Rondo Alla Turca, she did “Rondo Alla-Turquoise.” Ba dum tss. And she did another one. And it was just like, it was downright goofy. And I was just like, "Puns. What is this with the puns?" And then I looked at some of the behavioral charts of how sometimes symptoms go and at the very beginning phases of this. There can be word...there can be puns. There can be...it's like this kind of very particular kind of humor, just like, "Oh, that's behavior, that's not a symptom." And so it's about the misunderstandings about these symptoms sort of rising up. So a little bit of disinhibition might be exactly what you need sometimes. But when the dial is turned up to, you know, one, it's okay. But when it goes past four, there's a problem. These are all sliding scales, but just sort of having the sliders come up a little bit. And that actually helps the relationship. Oh that's fun. Oh, that's not fun anymore. Oh, now it's changed in something different. So it was more about having these sliders. And that comes from looking at the symptoms and the clinical stages of the disease and seeing if you miniaturize them small enough, they look like ordinary behaviors or personality changes, or this or that the other thing which yield...I mean, his track is a series of misunderstandings about what's really going on. And getting it wrong and getting it wrong and getting it wrong.

Bruce Miller

What Jake said was that what was all there, but none of it was there. But that whole story that was created between Jake and Lucy...and I figured when you...that there was an interaction between you two, it was just too real. The arguments, and the way the symptoms rolled out, it was so imaginative. And there wasn't a template for that at all. I mean, that was, that wasn't fiction. It was better than fiction. It was, well...

Emily Silverman

Creative-nonfiction.