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Speaker: Bullseye with Jesse Thorn is a production of MaximumFun.org and is distributed by NPR. [Music fades out.]
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jesse thorn
It’s Bullseye. I’m Jesse Thorn. Oliver Sacks was maybe one of the most fascinating people of the 20th century. And that’s not something that I say lightly. He was an accomplished neurologist. He was a champion bodybuilder, a bestselling author who wrote books like Awakenings and The Man Who Mistook His Wife for a Hat. His writing, beautiful, elegant prose, focused mostly on the human brain and how it responds to the outside world. He covered migraine, Tourette’s, deafness, and more. In 2015, he was diagnosed with cancer. It had metastasized and he didn’t have long to live. Before he died in August of that year, he approached the documentarian Ric Burns. Burns had previously made the films New York: A Documentary Film and The Chinese Exclusion Act. He’d also collaborated with his brother, Ken Burns, on the landmark docuseries The Civil War. In Oliver Sack: His Own Life, Burns spent hour after hour with Sacks, interviewing him, his friends and family, his partner—Bill Hayes—and just, you know, rolling tape as friends and acquaintances came and went. It’s an arresting and unforgettable documentary and a coda to the life of one of the most compelling figures of the 20th century. I was lucky enough to get to talk with Burns about the documentary. You’re about to hear that. A heads up that his recording will sound a little bit like he recorded it himself in his apartment, because—well, because he recorded it himself in his apartment. We’re grateful he took the time out of his day to do it. Anyway. Here’s a little bit from Oliver Sacks: His Own Life. In this clip, Sacks talks about his work with neurological patients who’d been written off by most other doctors and his efforts to document their conditions.
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Music: Quiet, thoughtful piano music. Oliver Sacks (Oliver Sacks: His Own Life): What was going on was so complex, in both neurological and human terms, that I felt a need to keep detailed notes and journals—as did some of the patients, themselves. I started carrying a tape recorder and a camera and later a little Super 8 movie camera, because I knew that what I was seeing might never be seen again. I had to have full, biographic detail along with full sort of biological insight. And this was a point where biology and biography intersected.
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jesse
Well, Ric Burns, I’m so happy to have you on Bullseye. Welcome to the show.
ric burns
Thanks so much, Jesse. I’m so thrilled to be with you today.
jesse
I was surprised to learn that it wasn’t you who reached out to Oliver Sacks, but the other way around. Or almost the other way around. How did you end up making a film about him?
ric
It was really so unlike anything I have been involved with. In early January 2015, Kate Edgar—Oliver’s longtime collaborator, editor, and kind of chief of staff to Oliver—called up and said that Oliver, whom I had never met before, had a mortal diagnosis and metastasized cancer which had gone to his liver and that he had months, maybe six months left. And would we come in and start filming him? And so, you know, it had never crossed my mind before that phone call to do a film about Oliver Sacks, but before the phone call was over, I knew that we would do one. That was the beginning of what was really a remarkable—and for me, very unusual, unique experience as a filmmaker.
jesse
Were you scared?
ric
Um, you know I wasn’t. I think there’s some kind of foolish bravery that goes along with being a filmmaker. And you’re basically kind of tense the whole time anyway. You know, whether you’re making the film or not. And I think there was a sense of a sort of a door suddenly opening on a person who I had read a lot of his work, you know, published books and things in The New Yorker and The New York Review of Books and The London Review of Books. Never met him. I think that what was—what I was worried about initially, and it went away very rapidly, was I was worried that he might be like a narcissist. [Chuckles.] Because he had some of those qualities of like kind of getting lost in himself during a conversation—either being nonresponsive or overly responsive. And I wondered was that the case? And what was really incredible and very, very fortunate was we started filming at—you know, around nine o’clock on Monday, February 9th, in 2015. And that first interview lasted five days. 12 hours a day, Monday, Tuesday, Wednesday, Thursday, through Friday the 13th. And so, it was great to be—to dive in the deep end of somebody’s personality like that.
jesse
There’s a wonderful sequence in the film where you’re talking to a guy who was a Touretter, who has Tourette’s syndrome. And he’s like—he is like an immediately fascinating guy, because his brain and body are going off in all different kinds of directions every moment that he’s onscreen—whether it’s with Oliver Sacks or by himself as I presume you talked to him. And there’s this moment where he acknowledges what I think is one of the most significant things about Sacks—for me at least—which is that in being treated by Oliver Sacks, he didn’t find a—you know—quote/unquote “cure” to his Tourette’s. What he found was that he didn’t have a disability, though the Tourette’s I’m sure makes his life difficult and complicated. He had a difference. And his difference was—you know—a reflection of who he was as a human being. And that insight is such a remarkable and incredible one. And it’s one that Sacks could extend to someone who was unable to move or speak, essentially, for 40 years in Awakenings or someone who was unable to recognize that water hydrants weren’t children. That we all have different brains; and it feels like part of what informed that was that he so clearly had a way of seeing the world that was not like anyone else. And at some point, he must have realized, “Gosh, we all—[chuckling] we all have a very subjective experience.”
ric
That’s right. I mean, I think that—that’s so beautiful, Jesse. I mean, he knew that are all irreducibly different. You know? In a beautiful piece he wrote for The New York Times, announcing his impending mortality came out in February 2015, after—the week after we first started interviewing him, in which he said, “You know, when we die, we all leave holes. And those holes cannot be filled. We are all irreducible. There’s no one like any of us, ever.” That sense that it is our condition to be irreducibly different and yet akin in that circumstance to everybody else—and maybe not just everybody else, to all sentient beings—made him, you know, on the one hand I think he felt anxious. “Am I too different? Am I—will my difference be punished?” You know. As a gay man growing up in Alan Turing’s England? Where sexual activity was punishable by chemical castration? That was a plausible fear to him. But also, you know, “Could I be like my schizophrenic brother, Michael? Something’s different about me.” And that ability which is so—I find—I think all of us take such courage in it, because I think he showed us how we’re all different. And that’s not just inevitable, it’s also okay and it’s a source of enormous richness.
jesse
I have to say that as a [chuckles]—you know, I actually personally have a neurological condition. I’m a migraine sufferer, which was the subject of Sack’s first book. [Ric affirms several times.] And you know, this is like a defining thing about my life. And there is a question in the film and a question in Sack’s life and career, which is: by narrativizing the stories of his patients, was he taking advantage of them or was he exploiting them? I have to say, like, as a migraine sufferer myself, one of the great frustrations I have always felt in medical care for this condition—you know, which I’ve been in since I was ten—is what a struggle it is to get a care provider to understand my condition holistically in the way that I experience it. And it was immensely powerful to hear stories about someone whose first instinct was not to separate the condition from the human being, but to empathize with the human being and see the world through their eyes. And, you know, I know that’s immensely important—I hear about it a lot in the—in the autism community, for example. Like, people who are autistic are constantly asking the world to like see them not as a disabled person who has a condition like one point of difference that makes their life worse, but rather to see them as a human being with a full experience that is somewhat different from other people’s human experiences! Right? [Laughs.] And what an extraordinary gift to be compelled, as it seems like he was, to see the world the way other people did—to try and understand the, you know, the subjective, human consciousness of other people.
ric
That’s right. And I—you know, I think he… it may have seemed, from the outside, to other people, that it might be trickier with someone who is autistic or, you know, encephalitis lethargica but I think Oliver felt it was a tricky business no matter who you were trying to understand from the inside out. But what he felt, I think really strongly, was that—was that—exactly what you said: that the sheer richness of every individual performance or experience of selfhood—it’s just amazing! And that you need to dive into it. You know. You can’t take 15 minutes. MRI isn’t going to show you. It may show you if you have a tumor or a lesion, but it’s not gonna show you what it feels like to be Jesse. And that work is really—it is so—it is so empowering, without in any way being soft. You know? It’s enlightened and it’s scientifically ahead of its time. There’s a kind of a democratic approach to experience and existence that comes from this quality that you’ve described so beautifully, which is an awareness that we’re all different and all alike in our difference. And that therefore it’s about acceptance and exploration and sharing and connection. And that’s what he was. He was like a connector. And when he had very little time left, he became even more so and decided he wanted to connect at an even deeper level, which is one of the reasons why he wanted to talk on film. The story, therefore, of Oliver’s life, I think is—it has this shape of a narrative which is not imposed on it, I don’t think. I think it comes out of a person who is both running from and towards himself, you know, for 82 years. You know? He was a—he was 50 when he began to make it as a writer/doctor. You know. And he was 70 when he began to—when he really had scientific acceptance. And having been celibate for 35 years, you know—he finally finds someone who he loves and who loves him, Bill Hayes. And even then, he can’t walk down the street in Greenwich Village in New York City arm-in-arm with his partner, Bill, until the last six months of his life. Because that—you know, that deep wound was so deep.
jesse
He doesn’t even—I mean, Ric, he doesn’t even introduce his partner to you on film as his partner. [They chuckle. Ric affirms.] He reintroduces him as a guy who lives in his building.
ric
[Laughs.] It’s so incredible. And here’s the thing: he knows we know! We know Bill—he knows we know Bill is his boyfriend! What was so great about that moment was there was no—you know, people have asked me, “Was Bill Hayes—was Billy hurt by that?” No. That was just Oliver all over. You know? He—so, he would go, “Billy! Yes, here’s Billy Hayes, the fellow writer. He lives in the building. And to whom I dedicate this book.” Which is when I go, “Wow, Oliver! Can we slow this one down?” But—and yet, then at the end—as Bill alludes to in the film—you know, they went to one of the oldest gay bars in New York City, Julius’, in April of 2015. Four months before Oliver died. And that’s because his book, On the Move, this deeply revelatory autobiography, came out in which he now talked about his sexuality openly—as he was with us, on film. And so, Julius’ wanted to have an Oliver Sacks themed party! ‘Cause he had come out to them and they were delighted. And so, they invited him to the party. And so, now there’s Oliver and Bill, arm-in-arm, going into Julius’ and having a beer! And talking! And the wonderful quality of—lovely quality of both tremendous shyness and just impulsive sharing.
jesse
We have even more with Ric Burns coming up. After the break, we’ll talk about how covering a subject at the end of his life changed Burns as a person. It’s Bullseye, from MaximumFun.org and NPR.
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Music: Uplifting orchestral music plays. AJ: Mr. Robotman, what are you doing? C-53: [Electronically distorted.] I’m just taking one last look at my coworkers. Narrator: Every journey comes to an end. Kiarondo: [Echoing.] Remember, Pleck, the space will be with you, always. Pleck Decksetter: Sorry, who are you again? Kiarondo: Master Kiarondo? Pleck: [Chuckling.] Oh, right, right, sorry. Kiarondo: Just calling in. Narrator: Friendships will be tested. Bargie: Dar, you have to do it. You have to shoot Pleck. [Phasers reloading and charging up.] Dar: Okay. Bargie: It’s the only way to save us. [A laser noise and a scream.] C-53: Wow, you shot him so fast. Narrator: Destinies will be fulfilled. [Wing flapping sounds.] Nermut Bendaloy: I’ve become a complete bird! [Screams.] I’m flying! I’m flyinggg! Narrator: On April 28th, the saga starts concluding. Pleck: Guys, we don’t have a choice. We have to put on a show! AJ: We can do it in the old barn! We’ve got the costumes. We’ve got a stage! We can do it, you guys! Narrator: Mission to Zyxx! The final season, on Maximum Fun!
jesse
Welcome back to Bullseye. I’m Jesse Thorn. My guest is the filmmaker Ric Burns. He created the beloved docuseries New York: A Documentary Film. He also helped produce the series The Civil War with his brother Ken Burns. His newest work is different though. He’s called Oliver Sacks: His Own Life. It tells the story of the influential writer and neurologist with special attention to the last few months of his life. Sacks died of cancer in August of 2015. Let’s get back into my conversation with Burns. Did you, in spending all of this time with Oliver Sacks in the—you know, the last months of his life, find that your own relationship to your own experience of the world changed or, for that matter, that your own relationship to your own death changed?
ric
You know, it was absolutely transforming in that both the process—the experience of being with Oliver and talking with people after he died—we interviewed 25 people who’ve known him well—and then wrestling with making a film out of this material, 90 hours of footage. We had a huge amount of stuff that had been filmed with Oliver before that—you know, from the BBC or Dutch TV, etc., and then these extraordinary interviews with Shane Fistell, who is a Touretter. Or Temple Grandin, who’s autistic. Or Kate or Billy. And trying to get that right. That process was really—it was funny. It was like we got to know Oliver both while he was alive and then posthumously by working with his interviews and people who knew him and loved him. And it was so—as filmmaking always is—recursive and reiterative and humbling. But the transformation—you couldn’t follow Oliver Sacks down into Oliver Sacks without in some sense acquiring at least a fraction of the—of the—of the kind of insight he had into the complexities of being a human being, including yourself. The relationship between your own striving for specialness and normalcy, the degree to which all of us go—you know—“Are we—am I okay?” And the ways in which we seek out reassurance on fundamental questions like that, the fact that we’re all alike in that—‘cause Oliver made it so compellingly clear. We’re all different. You might think every leaf is alike, but each isn’t and you’re not either. So, that beautiful life lesson in habituating yourself to your own—not special difference, just routine, ordinary difference. You’re just different! You’ve had your own experience. No one’s quite lived your version of a life ‘cause no one’s been you. That was transforming, Jesse. And then… you know, Oliver was—did not believe in an afterlife or a supreme being. Orthodox Jewish family. He left that behind, except for culturally. Culturally, it was very important to him. But you know, he knew as far as he was concerned, this was it. And you know, as his friend Lawrence Weschler said in the film, describing his—Ren Weschler’s—response to getting the news that Oliver died: a feeling of gladness, not sadness, came up in him, Ren Weschler. Not because he was happy Oliver was—had died. Of course not. But as Ren put it, he nailed the landing. He’d given a masterclass in how to die. And I think what that meant was a full and proactive acceptance that the very things that are allowing you to be aware, the things that give you this thing that make it most precious to be alive—our feelings, our perceptions, our consciousness, our awareness that we’re alive—are the consequences of processes which are intrinsically and inevitably finite. We come from something that means we’re going to end. And Oliver really believed that. He also understood the fear of death tremendously. But he knew in his scientific heart that everything that was most precious was a contingent byproduct of processes that had a beginning and a middle and an end. And so, his observational, infinitely scientifically curious mind could speak to Oliver, to the frightened part of Oliver, and go, “But Oliver, this is the way it is. You couldn’t have it any other way or you wouldn’t be at all.” That was a gift. And everyone who knew him personally felt that gift in their interactions with him. And everybody who read him, who—for example—read this New York Times piece which came out mid-February 2015, called “My Own Life”—was so struck by the, as he said, “Most of all, facing the end, I am grateful to have been a sentient being, a thinking animal, on this beautiful planet.”
ric
And so, you—if you had the good fortune of having somebody compellingly and persuasively whispering that in your ear as you read it—or film it, in this case—that can’t help but be changing. And so, I feel as I think everybody who knew Oliver and everybody who read Oliver felt: a version of the gratitude that Oliver felt to have been granted this experience called living, towards Oliver for helping to kind of essentialize and make sense of what in the end is [chuckles] the hardest. And if there was a—if I have a regret about something that’s not in the film, we couldn’t have put it in—Oliver told a story that neuroscientist Christof Koch told him about his protégé, the remarkable, Nobel Prize winning Francis Crick. And as Christof told Oliver, who told it to us, Francis—he, Christof, was in the room when Francis Crick, in the early 2000s, got a mortal diagnosis from his doctor by phone. And Christof described—in Oliver’s retelling it—got off the phone, explained what had been told to him, looked up for a moment, then said, “Well. Everything that has a beginning has an end.” And picked up his conversation with Christof about what they were working on in their intense work together on what’s the origins of consciousness. That shared moment, I think in a certain way was—it would have been very like Oliver to go, “I’m gonna do for as many people as I possibly can what Francis did for himself and for Christof and for his wife and for me. Is to, in extremity, use this incredible—you know—the trillions of connections in our brains, use this amazing thing we have and look at reality and find acceptance and joy and not pain.” So—
jesse
Ric Burns, I’m so grateful for all of this time and for your wonderful work, especially this amazing movie. Thank you for coming on Bullseye.
ric
Boy, Jesse, thank you so much. I know I’ve talked a huge amount and I hope there’s something in there worth [chuckling]—worth sharing.
jesse
Ric Burns, folks. You can watch Oliver Sacks: His Own Life on your local PBS station or you can stream it now at PBS.org. It is absolutely breathtaking. We’ll have a link to it on the Bullseye page at MaximumFun.org. And if I can just—I mean, look. We did not have time to talk about Ric Burns other movies because we were so busy talking about the amazing life of Oliver Sacks, but I just wanna say I’m such a fan of Ric Burns’ films and two of my all-time favorites--besides his famous series about the history of New York—are Coney Island, which as an episode of The American Experience that is funny and fascinating and I watched it in American Studies class in a bit about conmen and carnies and stuff and, man, it is great. And maybe my favorite television documentary I’ve ever seen, which is called Into the Deep—which is about Moby Dick and Herman Melville and the real-life events that inspired the story of Moby Dick, which are significantly crazier than the actual book. It’s called Into the Deep. Both of those you can find on DVD or wherever you watch your public television.
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jesse
That’s the end of another episode of Bullseye. Bullseye is created out of the homes of me and the staff of Maximum Fun, in and around greater Los Angeles, California—although, big news, friends! This little bit of narration is the first Bullseye that I have recorded in our actual recording studio in whatever it’s been. A year? Year and a half? My stomach is full of cabeza tacos, con aguacate, no cebollas. I can’t eat onions, because it gives me a headaaaache. The show is produced by speaking into microphones. Our producer is Kevin Ferguson. Jesus Ambrosio and Jordan Kauwling are our associate producers. We get help from Casey O’Brien. Production fellows at Maximum Fun are Richard Robey and Valerie Moffat. Our interstitial music is by Dan Wally, also known as DJW. Our theme song is by The Go! Team. Thanks to them and their label, Memphis Industries, for sharing it with us. You can also keep up with the show on Twitter, Facebook, and YouTube. We post all of our interviews there. And I think that’s about it. Just remember: all great radio hosts have a signature signoff.
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Speaker: Bullseye with Jesse Thorn is a production of MaximumFun.org and is distributed by NPR. [Music fades out.]
About the show
Bullseye is a celebration of the best of arts and culture in public radio form. Host Jesse Thorn sifts the wheat from the chaff to bring you in-depth interviews with the most revered and revolutionary minds in our culture.
Bullseye has been featured in Time, The New York Times, GQ and McSweeney’s, which called it “the kind of show people listen to in a more perfect world.” Since April 2013, the show has been distributed by NPR.
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