When Daniel Bergner’s brother received a bipolar disorder diagnosis, his family was told he needed to adhere to the doctor’s orders or death was a likely outcome. This set off a chain reaction of fear his life while Daniel’s brother was just trying to manage a difficult and persistent illness.
The common denominators? Fear and uncertainty.
Today’s guest is the author of “The Mind and the Moon: My Brother’s Story, the Science of Our Brains, and the Search for Our Psyches.” It’s the story of Daniel’s brother’s illness and his family’s quest to understand more about how modern psychiatry works. Join us as Gabe and Daniel discuss why the discussion surrounding medication is so polarized, how we can have a more balanced understanding of the limits of modern psychiatry, and how to move the discussion toward the middle ground.
Daniel Bergner is a contributing writer for the New York Times Magazine and the author of six books of nonfiction — The Mind and the Moon,Sing for Your Life, What Do Women Want?, The Other Side of Desire,In the Land of Magic Soldiers, andGod of the Rodeo — as well as a novel, Moments of Favor. Sing for Your Life was a New York Times bestseller and a New York Times and Washington Post Notable Book of the Year. In the Land of Magic Soldiers received an Overseas Press Club Award for international reporting and a Lettre-Ulysses Award for the Art of Reportage and was named a Los Angeles Times Best Book of the Year. God of the Rodeo was a New York Times Notable Book of the Year. In addition to the New York Times Magazine, Daniel’s writing has appeared in the Atlantic, Granta, Harper’s, Mother Jones, Talk, and the New York Times Book Review, and on the op-ed page of the New York Times. His writing is included in The Norton Reader: An Anthology of Nonfiction.
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.
Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without.
To book Gabe for your next event or learn more about him, please visit gabehoward.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Inside Mental Health: A Psych Central Podcast where experts share experiences and the latest thinking on mental health and psychology. Here’s your host, Gabe Howard.
Gabe Howard: Hi everyone. I’m your host Gabe Howard and calling into the show today we have Daniel Bergner. Daniel is a contributing writer for the New York Times Magazine and the author of six nonfiction books and one novel. After his brother was diagnosed with bipolar disorder, Daniel set out to better understand the thinking behind modern psychiatry. What he learned became the basis for his latest book, “The Mind and the Moon: My Brother’s Story, the Science of Our Brains, and the Search for Our Psyches.” Daniel, welcome to the show.
Daniel Bergner: Thanks so much for having me.
Gabe Howard: Now, longtime listeners of the podcast know that I live with bipolar disorder and I manage my symptoms with therapy and psychiatric medications. Now I’m only bringing this up because many people feel that because I use modern psychiatry to treat my illness, I must be biased. But here’s the thing. I believe we can do better. It’s galling to me that people think that just because medication has, you know, helped save lives or help me live a good life, that’s it. We should just be done investigating. It really seems like the two camps are Big Pharma is evil and forcing medication that we don’t need on us and all medication is bad or medications are sent from above, they’re miracle drugs. And we all should be taking them because they’re just incredible and without flaw. And yours is one of the first books that I read that really did move us towards the middle, you took a very nuanced approach. Why do you think that is? Why is this happening? Why are we at odds in this way? And what can we do to move towards the middle?
Daniel Bergner: Right. First of all, I’m really glad you led with that personal note, because I, too, want to say that even though my book questions some of the dogma, some of the assumptions around modern very much medicalized psychiatry, I still don’t want to be misinterpreted as preaching to people to abandon their medication. That would be so arrogant and misguided of me. So I really want to clarify that up front. Now, why have we kind of run into walls when it comes to treating the mind, treating our psychiatric conditions with medication? And I should say that I was told by neuroscientists after neuroscientists, people who’ve spent decades devoted their careers to finding that better medications, that we really haven’t progressed in that regard in at least half a century. So you are asking why? I would say there may be a kind of fundamental problem involved, and that is we’ve long been taught that our brains and our minds are the same thing. I’m not sure that’s true. I’m not sure neuroscientists are quite any longer clinging to that idea. It’s a complicated issue, but one really prominent neuroscientist talked to me this way. He said, look, any other organ in the body, I can take out a little piece of it. I can even take out a cell and show you that it’s doing what the organ does. So a heart cell, for instance, pumps. And you can Google this quickly and find it. That’s not true with the brain. Our neurons don’t think, they don’t create mood. There are 100 billion of them with 100 trillion approximately connections. And there just may be a huge, maybe almost infinite difference, between our brains and any other organ. And that may help to explain why we’ve run into these walls when it comes to improving on our psychiatric medications.
Gabe Howard: I read a lot of different things that you wrote in preparation for this interview, and I’m not 100% sure where this one comes from. But what you basically say is that neuroscientists and the medical community, they really need to start off every sentence with We don’t know. We’re not sure. We have a lot to learn. We suspect, and that’s not really happening. They say it very authoritatively, like we know this is fact. This is what we’re going to do. And that, of course, is problematic. Right? Because I believe that people believe that this is settled science and settled fact that if we would just do A, we would get B 100% of the time and that causes mass confusion in society. And ultimately, I believe that that contributes to the stigma against people living with mental illness.
Daniel Bergner: I agree with you. So I tried to do this in the book in two ways. One is by telling my brother’s complex story, by telling Caroline’s complex story, and she’s someone who has suffered the worst. What we all fear. Voices telling her to harm herself, to harm others, really, her life falling apart completely and medication in her case, and this is probably true in roughly 50% of cases where people really hear relentless voices. Medication in her case being both futile and really damaging. But finally, through this very dramatic journey, leading a movement to help us think in alternative ways. So her story, my brother’s story, the story of David, who in a much more common way is, well, first of all, he’s an amazing civil rights litigator at the top of this field. He’s argued in front of the Supreme Court, but suffers depression, suffers anxiety. Decides to take medication. And that leads to all sorts of difficulty, which he’s only now emerging from, but. So there are those personal stories and then there are the stories of the scientists. So I just want to give them their due. Talking to Donald Goff, who’s this amazing researcher into psychosis, was just revelatory to me because fascinating, fascinating work.
Daniel Bergner: But here’s what’s so interesting. While leading neuroscientists are saying, hey, actually, we don’t know. We profoundly don’t know. You know, somehow what’s being broadcast to the public is we do know and what we’re seeing, what we see are advertisements telling us, hey, here’s the pill, solve your psychiatric problem. Go on the National Institute of Mental Health’s website and you’ll see the old simplistic explanations with the medical solutions presented. It’s a strange split. When I first started out on this project, there was a lead opinion piece, The New England Journal of Medicine, that just said biological psychiatry has really run into dead ends. But despite that kind of insider knowledge, and I think this is both psychiatry that needs to be held accountable. And of course, the pharmaceutical industry needs to be held accountable for this. The public still clings to the simple solution. And maybe, maybe we’re all kind of at fault, because if you think back to how terrified our parents were. My brothers and my parents were, what they wanted was a quick fix. They wanted someone to say, Hey, we’ve got this under control, and maybe we all want that so badly that we’re willing to tell ourselves a story that’s just not quite accurate.
Gabe Howard: I’m really interested in what you said about people seeing the medical establishment as the ultimate authority, because on one hand, as we learned from COVID, I wish that more people looked at the medical establishment as the ultimate authority. Perhaps less people would have would have died, less people would have been sick, and we would have gotten out of the pandemic faster. On the other hand, I know as somebody living with bipolar disorder, it really is very paternalistic. Be med-compliant and you’ll do okay, Follow my orders and you’ll be okay. And I’m I’m really fond of saying that, you know, that whole phrase be med compliant and you will be well is is so missing the mark because of course med compliance isn’t what makes you well. Being med compliant on the correct medications that are doing what they need to do, alleviating the symptoms that they need to alleve, that that is what can possibly make you well. But the part about being med compliant puts the onus completely on the patient, the part about be med compliant on the correct medication. Well, that that shares some responsibility with with your prescriber, with your doctor. It really does seem like the discussions around this are always well, the medical establishment is doing the best that they can.
Daniel Bergner: Well, my mind’s going in two directions. One, that word compliant is really disturbing to me, having spent so much time now talking to my brother in order to be able to tell a story, talking to Caroline, talking to David, because not only does it put tremendous onus on the individual, but it also assumes a great deal of, in fact, a kind of absolute knowledge on the part of the practitioner. And we just don’t have that. And. That’s kind of a good segue to talking about the particular researchers that I spent so much time with. So I was fascinated by their work. I feel deeply indebted to them because although I had some background in this field, I really depended on their patience as teachers and on their reflectiveness, their willingness to acknowledge the lack of absolute authority, the deep lack of absolute knowledge that the profession actually possesses. So, you know, I would say to listeners, come with me and through me, through this book, to the lab to hear the voices of these neuroscientists. And you’ll hear sort of behind the screen what the reality is about our fragile and imperfect knowledge. As one of the leading US researchers put it. We need a epistemological humility. That was his term. We need to acknowledge our not knowing in order to be able to address the people, the individuals who come to us. So, I mean, it’s just so ironic, for you to be talking about compliance. It sounds like, at best, a kind of imposition from above. And it’s why should that be? Here you are having a more than cogent conversation. Do you not have some significant, I would say, role in thinking about and determining your own treatment? Of course, you do. And so that idea of compliance is just far to diminishing of the individual.
Gabe Howard: It’s really fascinating to me because there is no blood test, right? I can’t go in to my psychiatrist, have them draw blood or run a culture or, you know, send bodily fluids or skin samples or anything off into a lab and get something back that says Gabe Howard has bipolar disorder. And in fact, it’s type one. And in fact, he experiences psychosis. And none of that happens. All of the information that psychiatry uses is from observation. They gather data points. They put them up against, you know, in America, it’s the DSM-5, Diagnostic and Statistical Manual. And there is where they get the diagnosis and then they treat it with, you know, therapy, medication, and then they look to see if the symptoms alleviate. Right. That’s a big cumbersome way of saying they’re watching the patient, They’re seeing what happens. And they’re tailoring their approach based on that information. And then the very next sentence is well, and we tell them what to do. There’s no partnership there. I’m always curious about this because, again, medication very much works for me. I am living way better not believing that demons live under my bed and are chasing me and I and my life is just so improved with a diagnosis and with coping skills and with therapy and with medication. And yet I’m so annoyed, I’m going to go with annoyed at, Daniel, at this idea that it’s not seen as a partnership between Gabe and his doctor. It’s not seen as a partnership between patient and provider. It’s seen as the doctor made all the decisions, told me what to do, and because I listened, because the patient listened, they got well. In their own description of how this works, you would think that there would be a very important push and need to partner with the patient to make sure that we can move this forward. And yet that does seem to be lacking in modern psychiatry.
Daniel Bergner: I think it’s largely lacking. Of course, there are psychiatrists who do enter into that partnership. But I’ll talk a little bit about my brother. So he’s diagnosed. We have the hospital records. Some of the behaviors certainly fit conventional psychiatry’s criteria of severe bipolar. So, he takes this medication for several years. He’s an aspiring musician and dancer at the time, and he just can’t, it’s just untenable for him that medication causes tremors. He feels like it leaves him with the feeling of a blanket on his brain, as he puts it. And so he goes off and there are repercussions, there are setbacks. He spends another spent stint on a psychiatric ward. He’s arrested multiple times. He is homeless for a while, but flashing forward in decades now. And he lives a really deeply meaningful and flourishing life. That life is both spiritual and musical. I think it’s a very poignant and traumatic life. But I’ve asked him, what would you have wanted? In that first time. That first time on a locked ward, what would you have wanted from practitioners? And he will point to a rabbinic parable. And it involves a sage trying to help a prince who believes that he, the prince, is a turkey. And it’s the parable of the turkey prince and the sage gets under the royal dinner table, where the turkey prince is insisting on sitting naked and eating only crumbs that drop from the table. And by getting under the table, by listening there rather than from above, the sage is able to help the turkey prince rejoin the community. And my brother will just say I wanted someone to get under the table with me. And I think that is all too rarely done by conventional psychiatry.
Gabe Howard: What would you have liked to have seen done differently with your brother’s care? Because it sounds like in the beginning it was a very bad experience.
Daniel Bergner: Yeah, it was typical of what we’ve talked about, that experience of an authority sort of looking down, judging from outside and above. It’s worth saying that this was in the early eighties when the biomedical view of psychiatry was first taking full hold. So there was tremendous space within the profession and within the pharmaceutical industry that our psychiatric issues. Even our most problematic ones could be successfully, consistently addressed with medication. So talk about either-or. There was only one side of that in a sense available, and he was on the receiving end of that very authoritative vision. I would go with what he had said, which is he would have benefited by a much more nuanced approach or an approach that really listened. And that is direly rare, I’d say, still in the practice of psychiatry. We’re so sure again, returning to that either-or theme that sort of we on the supposedly sane side of things are seeing clearly. And those with psychiatric conditions are somehow unable to have insight into themselves. That having spent several years now working on this book and not only with my brother, but people with a range of conditions and a range of practitioners. That idea of a lack of insight is just not accurate. As you probably know, even people beset with the worst kind, the most difficult kind of suffering are still generally cycling in and out of that. So even if we want to accept conventional psychiatry terms and I do want to question them, but even if we fully accept them. We need to recognize there, there’s lucidity there. There’s what anyone would call rational thought there for periods and then periods where that falls away.
Gabe Howard: And we’re back with the author of “The Mind and the Moon: My Brother’s Story, the Science of Our Brains, and the Search for Our Psyches,” Daniel Bergner. I think of these stereotypical thoughts surrounding mental illness. It’s always that person rocking back and forth in a corner. They’re shaking. They look scary. Their tongue is darting in and out. And what many people don’t realize is that that’s not a symptom of any mental illness. That’s a symptom of a treatment for mental illness. It’s tardive dyskinesia. And it’s the side effect of some antipsychotic medications. And it’s become so wrapped up in. Well, that’s what mentally ill people look like. And I, I always use the example of cancer doesn’t make your hair fall out. The treatment for cancer makes your hair fall out. And I think society understands that. Society understands that treating cancer means that you could go bald. But society doesn’t understand that treating psychosis, treating schizophrenia, taking antipsychotic medications can make you do these things that we believe make you look crazy. And that really makes people stop and think, well, now wait a minute. That thing that I’m afraid of, that behavior that you’re doing that I don’t like is because you’re treating your illness? They believe that that scary motion, the rocking back and forth, the tongue darting. They believe that that’s proof that you’re not treating your mental illness.
Daniel Bergner: Exactly right. Misconceptions are vast, and that area is one of the most fraught areas of misconception. So yes, a lot of the side effects get misinterpreted as the disorder itself, when in fact it’s the antipsychotic medication causing that person on the subway to be moving in such a bizarre way, the tongue darting, the herky jerky ness and sometimes with akathisia, that, as it’s been described to me, it’s like the feeling that a puppeteer has control of your body and you’re trying to fight the force of those strings that are being pulled every which way. That’s the medication, not the disease. And you can imagine when you see that person, you’re frightened because that person is acting in a strange way that if they’re big and physically imposing, that’s going to start to feel scary to you. That’s often not the disorder, that’s often the medication. Now, this is a really of the moment because there’s a movement on to. Go back to that word you used earlier compliance to not just suggest compliance, but make compliance legally mandatory. Is you actually have to take your medication. The repercussion would be put someone in prison if they don’t. But this is before. This is a considered a preventative measure. I think that takes us into really difficult, possibly societally dangerous terrain where we’re deciding that we can legally mandate treatment of the mind. I’m just not sure that our much-valued traditions of protecting civil rights and abide by that, I think we would be stepping over a line, as much as it’s tempting. But I would beg people to think more complexly than either-ors that lead to that kind of thinking. Because to circle back, as you say, those antipsychotic medications can take a real toll.
Gabe Howard: It’s always fascinating to me that when it comes to taking somebody’s civil rights away, we’re like, well, they lack insight. They don’t understand what’s going on. We must step in. They cannot help themselves so we can order them to do the following things. And then in the same talking points, we say things like, Well, it doesn’t work if you don’t want it to work. Therapy only works if you participate. You know, there’s so many of them. I could just read them off a list. And finally, what really gets me as a person who lives with bipolar disorder is this lack of insight is always used to take away our rights, but it’s never used as a mitigating circumstance to divert us from prison, for example. We never lack insight to avoid going to prison. It’s you can probably hear it in my voice a little bit. It’s just so incredibly unfair. Gabe, You have no rights because you lack insight. Okay, well, I did something wrong. Right, you’re going to have to pay the consequences. You know, you’ve got to stand up and take responsibility for your actions. Well, but I thought I lacked insight. No, no, no. You only lack insights over here. All of that said, there are people who 100% cannot help themselves. And let’s move away from mental illness for a moment. In physical health, we understand that if you are unconscious, right? If you and I are doing this interview right now, if you lose consciousness, Daniel, you have passed out.
Gabe Howard: I know that I need to help you. I can’t ask for your consent. I can’t wait for you to participate. You are unconscious, and I know that I need to help you. Now, as soon as you regain consciousness, and I say, Daniel, do you see me? And you say, Yes, Gabe, I see you. What happened? I now know unequivocally that you have regained consciousness. You now again are able to participate in your own care. That’s very well understood on the physical health side. Over on the mental health side, we have all of these robust conversations to when somebody lacks insight and we need to step in and manage their care for them. But then I ask one follow up question: When do they regain that insight? And nobody seems to know. They’re like, well, you know, if they start doing better. Well, I mean, if they I mean, if they get a job, definitely. Well, if they’re compliant, if they do what we say. So if they follow your orders, they have insight. And if they don’t follow your orders, they lack insight.
Daniel Bergner: So a couple of things. One, I really hope listeners will read Caroline’s story in my book because it addresses so much of this. Speaks to this exactly because she is someone who’s been in that very, very, very dark place that psychiatry would label as lacking in insight. And yet here she is, I think, illuminating for all of us a new way of thinking about these questions. The other thing I want to say just goes back to our theme of either-or. What if we didn’t think about medication itself as an either-or proposition? What I mean by that is this. So, many, and I’d say safely, most psychiatrists are going to hear a person’s psychotic symptoms and think, I need to stamp that out and I need to stamp it out permanently. Here’s the best, the optimal dose of this powerful antipsychotic. Yes, it may cause side effects, but those are worth enduring. Of course, the psychiatrist doesn’t have to endure them.
Daniel Bergner: Those are worth enduring to stamp out or attempt to eliminate the symptoms of psychosis, the voices, the delusions, etc. What if we do something different? And I’ve talked with compelling people who’ve suffered and who’ve come to this kind of miraculously through very nuanced psychiatrists. What if we think about the medication as either temporary or as dialed down, as calibrated, such that the voices aren’t going to completely go away? But they’re going to be more manageable, thanks partly to the medication and then thanks to whatever form of therapy or in Caroline’s case, the movement she leads group support experiences that for short hand here are somewhat akin to Alcoholics Anonymous. You’re openly sharing experience rather than trying to avoid talking about it. So that the point is what if in those difficult cases we looked to more complex approaches, medication that weren’t again, that weren’t driven by fear, but were driven by an attempt to treat the individual in a nuanced way so that that individual could manage but wouldn’t suffer those really debilitating, isolating side effects.
Gabe Howard: We could do this all day, Daniel. And it’s a fascinating conversation and I just want people to better understand their treatment options, the limitations of treatment. What we do understand, what we don’t understand, and just have a more rounded view of what is happening. One that’s based on reality and one that is not based on fear. I want to end on this. How is your brother doing now and is he receiving any psychiatric treatment for his bipolar disorder?
Daniel Bergner: No treatment. He would question that very diagnosis. He’s wonderful. I mean, he’s a leader. He is pastor of a congregation, is a volunteer on psych wards. He helps the homeless. All the things that mark those terrifying years, the psych ward, arrests, homelessness. He has circled back now to address and I would say and this will take us in a whole new direction, I would say he would point to three things nothing to do with medication that have really helped him. So that would be music, that would be prayer and meditation or be exercise. And I guess I would add one more and that would be service, like being out there connecting with people has saved him. And I’d say they’ve done a little bit to save other people along the way.
Gabe Howard: And I want to just give a reminder to everybody, if you are living with bipolar disorder or any serious and persistent mental illness and you are taking psychiatric medications, please do not just go off cold turkey. This is a conversation that you need to have with your doctor to make sure that you are getting the best treatment that you can. We’re definitely trying to provide foundational knowledge, but we are not in any way suggesting that anybody take their medical care into their own hands. Please have that conversation with your psychiatrist, your provider, your general practitioner, and make the decisions that are best for you.
Gabe Howard: Daniel, thank you so much. Where can folks find you on the Web and where can folks get your book?
Daniel Bergner: People can get the book in the usual places online or at your local bookstore. I encourage people, I really mean this sincerely. So, my email address is on my website, DanielBergner.com. If you read the book, have reactions, thoughts, that you want to share, questions of any kind, I’d love to hear.
Gabe Howard: Thank you, everybody, for listening. My name is Gabe Howard and I am the author of “Mental Illness Is an Asshole and Other Observations.” I’m also a nationally recognized public speaker who could be available for your next event. You can learn more about me or get a signed copy of my book by heading over to gabehoward.com. Wherever you downloaded this episode, please follow or subscribe to the show. It is absolutely free. And hey, can you do me a favor? Tell your friends about this show. Sharing the show is how we grow. I will see everybody next Thursday on Inside Mental Health.
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