The Things Not Named

What's Named And What's Withheld

“That's what a storyteller's job is. What do you relay and what do you withhold? And frankly, that's the chronic illness storyteller's mode as well. What am I going to tell this doctor in front of me and what am I going to withhold?” Dr. Michael Stein, author of “A Living: Working-Class Americans Talk to Their Doctor” Michael Stein is a physician, a health policy researcher, and author of 15 books — six novels and nine books of nonfiction. He’s currently Chair and Professor of health law, policy, and management at the Boston University School of Public Health and has also taught at Brown University. Michael is a frequent contributor to The Washington Post, The Boston Globe, and the New York Times. He’s also been featured on NPR’s Fresh Air [https://www.npr.org/2007/02/06/7217658/examining-the-inner-life-of-the-lonely-patient] and in O Magazine [https://www.oprah.com/book/the-addict-by-michael-stein?editors_pick_id=35314]. In his spare time, he is Executive Editor of the Public Health Post [https://publichealthpost.org/]. Below is an edited transcript of our conversation on Substack Live. Transcript: Joshua Dolezal: Welcome back to The Things Not Named. I’m Joshua Dolezal, and my guest today is Dr. Michael Stein. Willa Cather famously said that it’s the presence of the thing not named that gives high quality to fiction, drama, and poetry. So this year I’m asking that question of medicine. How might we all be more attentive to what goes unsaid in the clinic, in popular culture, and in the experience of illness from the patient’s side? Michael’s recent book addresses that question because he’s giving voice to a lot of people who normally don’t get to tell their story in popular culture or in medicine, so that’ll be a treat today. Michael is a physician, a health policy researcher, and author of 15 books — six novels and nine books of nonfiction. He’s currently Chair and Professor of health law, policy, and management at the Boston University School of Public Health and has also taught at Brown University. Michael is a frequent contributor to The Washington Post, The Boston Globe, and the New York Times. And he’s also been featured on NPR’s Fresh Air [https://www.npr.org/2007/02/06/7217658/examining-the-inner-life-of-the-lonely-patient] and in O Magazine [https://www.oprah.com/book/the-addict-by-michael-stein?editors_pick_id=35314]. In his spare time, he’s also the executive editor of the Public Health Post [https://publichealthpost.org/]. Welcome, Michael. Thanks for joining me today. Michael Stein: Josh, thanks for having me. This is great. Joshua Dolezal: I want to get to your latest book, A Living [https://www.penguinrandomhouse.com/books/780358/a-living-by-michael-d-stein/], which you’ve modeled after Studs Terkel’s classic, Working. But first, I’ve talked with almost everyone on this series about craft and how they think of themselves as a writer. And I’d kind of like to start with when you first started thinking of yourself as a writer, what some of your formative influences were, any significant mentors you had that shaped you as a writer. What’s your origin story? Michael Stein: Right, great. Thanks again for having me. So my origin story is — I think the first book that influenced me as a quasi-adult was in my 20s when I read a biography of Robert Lowell. And I thought that was just a fascinating life. And he was obviously a poet primarily, and I was writing poems at that point. And I spent many years doing poetry, which I published all over the place, and came into contact with the famous editor Gordon Lish, who had reached out to me and asked me to send things to his magazine. So I started to send some things to a journal that he was running called The Quarterly. And so I wrote a lot of poems early on. At the same time, around then I had done some work as a journalist, which was not creative writing but an important kind of writing. I had done that in college and I thought of doing a career — I sort of reached the fork of do I do medicine or do I do journalism? And so, of course, being who I am, I chose both. I ended up going to medical school and was still sort of writing journalism pretty much through medical school. I paid for medical school working as a journalist for Nature magazine and went to occasional medical school classes. And I was writing a lot of poetry. Then years passed and I had children, and I started one night — when I was up feeding children in the middle of the night — to write fiction. I wrote six novels, published six novels over the next number of years. And then along the way, I just decided to come and try to start writing about medicine directly. So I went back to writing nonfiction about medicine. My writings have gone all over the place since then. As you said, I’ve written a lot of books — six novels, eight books of nonfiction — and they range from my recent book, A Living, to more straightforward essays, to public health arguments. I wrote a book called Me Versus Us, which explains to people the difference between public health and practicing medicine, because I now work in a public health school. So I’ve flittered. Joshua Dolezal: Well, so coming back to nonfiction is actually coming back to your roots. And I think I had it wrong — I thought you’d started as a fiction writer and then sort of came to nonfiction later. But it sounds like the essay form, personal form, and your journalistic training was really the foundation. Michael Stein: Yes, I think so. But very different, obviously, from journalism. I’ve always taken my nonfiction to be — having gotten to it really through fiction — a more creative form than I ever considered journalism, which I considered a public service as opposed to my personal writing. So a little different. Joshua Dolezal: Here’s an unfair question, and it probably differs because I know you’ve published 400 scholarly articles too, and all these modes are very different. But when you’re thinking more in the literary sense in nonfiction, or perhaps even in fiction, how do you know good writing when you see it? When you hear about craft, what does that mean to you when you’re making decisions in your writing process? Michael Stein: Well, I would have to say it’s a great question, and I probably see what you’re calling good writing differently at different times in my life. I think what I’ve considered good or enjoyable or meaningful to me — I’ve read different things at different times where, when I went back to reread, they didn’t appeal to me in the ways that they had the first time, which is telling me that I probably have a bit of a shifting view. Having written novels, I became much less interested, for instance, in writing — and therefore stopped writing — naturalistic literary fiction. It just wasn’t so interesting to me as a form anymore. It’s not to say that I don’t like stories, but for the moment, I’ve probably read over the past 10 years, when I pretty much stopped writing fiction, fewer novels than I read in the first 20 years when I was writing fiction. It would take a lot unless the fiction I was reading had something experimental or interesting to me. So technical format changes interest me. But I think what’s a satisfying read — which is sort of what you’re asking me at the moment — depends on my goal of what I’m reading it for. Is it just pleasure or is it something that I’m interested in because it’s a subject I’m thinking of writing about and I want to see the lay of the land? But in general, I think like everybody else, I’m interested in tension. I’m interested in pathos. I’m interested in some investment in a character or in solving a mystery. I’m interested in the theme, which is probably what’s going to draw me to something in the first place. And I’m interested in variation. And as I said, usually these days I’ve been interested in technical questions. So all of my books, as you’ve read, have slightly different forms. I try to ask myself different technical questions, which I think I did when I was writing fiction as well. Can I write a mystery and can I write it from backward to forward? I would ask myself these things and then try to set out to do them. So I think I’ve bounced around both in what I consider satisfying and therefore what I consider good. I don’t know that there is a single “good” for me. Joshua Dolezal: Well, I guess we’re all hopefully evolving — we’re not stuck in our sensibility. But so the book we’re talking about today, A Living: Working Class Americans Talk to Their Doctor, is really kind of unique stylistically for your books. I had my suspicions as I was reading it and then discovered in your closing that you did, in fact, intentionally style it after Studs Terkel’s classic oral history, Working, which I think was published in 1974 — people talk about what they do all day. And so in this kind of form, you’re not doing the typical thing that a nonfiction writer does, which is act as a friend to the reader, as Henry James said, as a guide that frames things, contextualizes things, analyzes things. You do that a little bit around the edges. But really, this is a book where your patients tell their own stories in their own voices, much more like a curated or edited oral history form. So I’m curious why you chose that style. What about Terkel’s project felt necessary for you now to revive? And why is your voice so absent from this book compared to all the others? Michael Stein: So let’s put the Terkel comparison and the absence aside for a second and just give you my context for this book. A Living came out in 2025. Four years ago, I wrote a related book with a related structure called Broke. And Broke was similarly about talking to patients about money. So I’m a primary care doctor. I work in an inner city and I see people who are broke. That’s the primary focus of my work. The patient group I’m best known for is taking care of people with HIV or people with addictions. So I’ve naturally grown to populations that are vulnerable and generally poor. And people were just talking to me all the time about money. It was just a constant part of our conversations. And I just thought, nobody writes about how money influences the lives of people. And so here enters two things with Broke. One is I’m in a public health school — poverty is the primary driver of public health in the United States, so there’s a political angle for me. Number two is to go back to your earlier question: I used to write poetry. So I’m drawn to short forms and pith and adjacency of people talking about things that are bouncing from here to there. And like poems, or poetry books in general, I sort of believe in accumulation — which is, while poets will tell you they write books and spend a lot of time organizing their individual poems into some order, the truth is you can dip in and out of a poetry book on any page. The order usually doesn’t matter to the reader. It matters much more to the writer. But what the writer wants, I think, at the end of any of these accumulated books — which I consider Broke and A Living to be its ancestor — is accumulation. They want a sort of overall powerful impact. Okay, so that’s the context. A Living came from Broke. The population of having no money turns out to be, in our world, a population that does manual labor. So a lot of my patients talked about their work, and they do physical work. And I thought, no one ever writes about physical work. And along came — interestingly — two things I wasn’t aware of when I started to write the book. One is that we would have a MAGA movement, which has strong feelings about physical work, and that was an important dimension I didn’t see coming. And the other part I didn’t see coming is what AI would mean, which I think is going to have a profound impact on what we mean by work. And then I happened to read that it was Studs Terkel’s Working 50th anniversary. So I thought, I can get my book out in time to mark his 50th anniversary. So that’s the context — it was sort of a follow-up to Broke, it was a topic that had both health and political interest to me, it was meant to be poetic in its accumulated format, and it happened to fall on the 50th anniversary. So those things are what led me to write A Living. So let me answer the final part of your question, unless you want to interrupt. The other part you asked is why I’m absent. Is there something else you want to ask first, or should I just keep talking? Joshua Dolezal: No, let’s finish that. I mean, I understand you want normal people to tell their own story. These are voices that fit my series — these are the things not named, the people not named. They get these perfunctory social histories. Since the 70s, there’s supposedly been a biopsychosocial method used, but a lot of times it feels perfunctory. You ask a few questions to fill in the section on the chart, but you’re taking a much deeper dive into personal lives that you see as really intellectually linked to health. And so I assume that’s one of the reasons why you pulled yourself back — just to let the reader connect more of those dots, listen to those stories without as much of a filter. But what are some other reasons? Michael Stein: I appreciate your reading of it, thank you. I think you’re right on with that. I guess I would say — and then we could talk about how it’s different from the Studs Terkel book — what I tried to do in A Living was what a primary care doctor does in their office, which is: the story when you come into my office is not my story. It’s your story. My job is to do observation and at some point make a judgment, and then share that judgment with you and then discuss what the options are based on my judgment. And so frankly, there’s very little room for me in the best medical encounters — the doctor’s not there talking about themselves. So it seemed to me, in the representation of people that reflected the actual setting, I should let them talk. And while I could guide them, I didn’t need to have much about me in the book. You’ll get little bits of me guiding the conversations and you’ll have a sense of me from that. But once I start inserting myself with large swaths of judgment, it becomes a very different book. It becomes a memoir, and it wasn’t meant to be a memoir. And so my job was really to take years and years of patients talking about their lives of physical labor, organize them, not really talk about their medical illness at all because it’s not so relevant to the story. And if you’re seeing people with physical labor who have, let’s say, arthritis — a common thing among physical laborers — how many times is it worth me saying this person is here with arthritis? So it seemed irrelevant. I really pretty much removed all medical diagnoses from that. It also helps de-identify the person. And then I just let them talk and guide them. And the job of the writer, therefore, is to create an organizational schema that allows the accumulation. So I divided the book into some themes that people talk about around physical labor — working with their family, what’s the structure of the day, how does physical labor give you identity, et cetera. The structuring was the structuring part. Now the risk — the risk of doing this — so Studs Terkel, first of all, didn’t only do physical labor. He did a lot of office work in that book, which was relatively new in the 1970s when it was coming along. And so mine is just physical labor. His sections are pages and pages long and have much more biographical detail. Mine are what I call scenelets — tiny little scenes. And they’re really just: can you capture the life of a person through their one little story? And so it asks, as you said, a lot of the reader. It says, you have to see why I’m putting these all in one place. And then you have to be interested in some of these people and think, that’s an interesting thing they said, I wonder what that means. The downside to this as a writer and as a reader is that it’s frustrating. You go, I want to know more about that person, and Michael just moved on to the next person. And so I get that frustration, and it asks a lot of the reader to put together a larger story. But to me, it was a form that could hold what I was trying to do. Joshua Dolezal: I appreciate your description of it as like a book of poetry. A favorite point that I used to make while teaching medical humanities is that people are more like poems than they are like puzzles, and getting comfortable with ambiguity is the secret to getting comfortable with people. So to not force homilies or neat takeaways from each of the stories fits with how we interact with people generally. And I like how each of them is self-contained, but then also part of a whole that accretes, that accumulates, that builds up to something bigger. There’s a sense in which this could be a stage performance. I don’t know if you’ve thought about adapting it. Michael Stein: Somebody said that to me afterward. I had never thought of that. But yes, people said, do this as a play, have people come in and speak. Joshua Dolezal: Yeah, or it could be in film, where the scene or the camera changes. I’m curious — and just so if you haven’t seen this book I’ll hold it up — there are these facts that are also in large type. So in this one it says, “In the United States, about half the labor force is employed in working class jobs, defined as manual labor, service industry, and clerical work, and fewer than two percent of members of Congress worked in such jobs before being elected.” So there’s a fact, there’s no real context for it, there’s no real conclusions drawn from it — that’s something the reader is invited to do with what they will more or less. But it does add a little bit of texture as we go. Michael Stein: Yeah, it gives you some sociology, but it doesn’t give you an argument. This is not an argument book where at the end of the day you go rah-rah, here’s what I believe. It’s not meant to do that. Now is there a hint of that through those bits? Yes, because I’m a political person and I do public health. So I took advantage of my platform and allowed myself those bits. I had little introductions to the sections and then I put in these factoids. They’re not meant as arguments. As you said, they’re not even causal. They’re not high science. They’re just notes about the world that you should know when thinking about a group that is pretty invisible to most people of a certain class. And I have the good fortune of working with them and hearing about their jobs. I mean, part of this really had to do with — it’s just interesting to hear people describe what they do. Like, to hear a person describe the making of a sailboat or a wind turbine, or how you actually cut veal from the bone or groom a dog. I’m a weirdo, but that sort of interests me. And it sometimes quite directly affects their health. And sometimes it doesn’t. Sometimes it comes up because as a respectful conversationalist who has the time in an office with people he knows well, it feels like a way of connecting to somebody. If you came in to me and said, I can’t breathe or I have a terrible sore throat, I’m not going to talk to you about your physical labor job — let’s deal with the immediate medical issues. And other times, people come in because they have vaguer complaints, at which point trying to understand who they are is a matter of doing good medicine. And if they spend 10 hours a day working, if you don’t know about their work in detail, I don’t think you can do my job particularly well, or at least part of the job. Joshua Dolezal: Excellent point. Michael, there’s a line in your intro — and I think this provides just that little hint of guidance that a reader needs to make sense of the excerpts to follow — but you’re trying to kind of interrogate what’s lost besides a paycheck when work disappears. And this was something that I hadn’t thought about directly. I knew it because I come from a working class family in Montana. My uncles were loggers. My father was a civil engineer. I’ve done firefighting with the Forest Service. One of my great-grandfathers is in the North Dakota Cowboy Hall of Fame. The typical narrative is that work is hard on your body — that breaks your body down, and that’s the source of all your ailments when you go to the doctor. But you really point out how the absence of work, because work is a source of identity, a source of structure, a source of connection — when you don’t have work, that actually creates pain. The people that are not employed are much more likely to be on pain medication. And it also contributes to illness in ways that are not typically observed. So what else can you say about how these stories taught you about what’s lost besides a paycheck when work is taken away? Michael Stein: I think work is fundamental for most people — some form of work. Obviously people who find work meaningful or have a purpose in their work, that’s very important. Some people don’t find their meaning in their work and do it because they need the money and they’re just getting through the day and doing a paycheck. And I think writing about how people find their work respectable — or not — is a way of respecting them. And I do think that the loss of work for people who have worked their whole lives — because of a change in their industry or an injury to themselves — is devastating. And I try to tell those stories among people who lose jobs. We know from a public health point of view that mental health symptoms are related to not only the stress of work, of which there are many other stresses in life, but that’s certainly one of them. Certainly the loss of work is something that affects people’s mental health dramatically. And that’s often where things land in my office. There are direct injuries from work that one has to deal with. And there are very indirect pieces of life that have to be evoked or brought up in conversations. We talk about medicine as a history and a physical, and the providing of that history is a form of storytelling. And the storytelling of medicine is really about the question of why. So if you come in to me and you have broken your hip — you fell and you broke your hip, maybe at work, maybe at home — the immediate question for most doctors, rightly, is: you broke your hip, now what do we do? Does it need a pin? Does it need a hip replacement? What does it need? That’s so uninteresting — well, it’s important to the patient and it’s the doctor’s livelihood and the outcome is obviously super important. But for the storyteller, the question is, why did you fall down? That’s where the story actually starts. And so until you get into, well, what was the job that you were doing? And, oh, wait, you fainted on the job? Why did you faint? Or, oh, you were drinking before work? At that point, the story is — as in all good stories — what’s relayed and what’s withheld. That’s what a storyteller’s job is. What do you relay and what do you withhold? And frankly, that’s the psychology of chronic illness. That’s the chronic illness storyteller’s mode as well. What am I going to tell this doctor in front of me and what am I going to withhold? I could break my hip and never tell you that I was drunk at the time, but there are going to be consequences to not telling, and you’re not going to be taken care of. But the way we tell a story to a doctor is a way of telling about yourself — how you want to be seen and understood, and what you believe are the laws of cause and effect. And those are important things to know as a doctor and as a human. They are the essential elements of all storytelling in fiction and nonfiction: how do you want to be seen and understood, and what do you believe the laws of cause, effect, and motivation are? To me those are the elements of storytelling. I’m lucky enough to see that with patients, and if you’re open to it and have the time to do it — which we don’t all do. And let me just say, there are plenty of patients who don’t want to tell you these things. And you’re missing their story, and that’s okay. And there are plenty of doctors who don’t have time to take the story. And that’s usually not okay in chronic care. It’s okay mostly in orthopedics, but it’s not great in primary care. Joshua Dolezal: Let’s take one of your characters. Most of them are one-offs — we hear from them once and then they’re gone. Some of them reappear. But one runs from beginning to end and you call him Dennis. Presumably not his real name. And he had this job for many years — I’m not going to be able to pronounce the quahog term or whatever it is, but he was a clammer. He had a boat. And he would bring you clams when he came to see you. And then he loses that — he can’t fix his boat or he hits a series of problems — and so that work is taken away from him. And you seem to be invested in getting him back on the boat, which seems challenging to do. So why did you emphasize Dennis’s story so much in the book? And what do we learn from Dennis that’s representative of the cohort of working class patients the book covers? Michael Stein: Thank you so much for asking that. So there are a couple of things. Let’s talk about the technical part first, then we can talk about Dennis. The technical part is: one of the risks of having 150 people telling 150 stories is, because I’m a reader too, well, what’s the connection across all of this? Give me something I can carry through from beginning to end. People read novels — having written novels, I know — because they want to see a character move from beginning to end. They want what’s called a story arc. And so to me, putting one character in over time gives you a story arc. If you’re interested enough in that character, you’re going to get a little ping every time Dennis comes back. And you’re going to realize that he’s the only one really who’s coming back. The original version of the book, frankly, had nobody’s name in it. And I gave one person a name — Dennis — and then I decided, let’s give everybody a name. It makes it more human. But the truth is that Dennis was a technical, crafty device: give the good reader a narrative arc. So things happen to Dennis. We have a longitudinal timeline. We have things happen within the stories he tells about himself. And one could imagine this book being written as: I choose six Dennises and tell six stories over time. And many books do that. Most classic nonfiction books by journalists always start with a character or a family and carry them over time. Even though you’re interested in eviction as a subject, you better give me four characters who’ve been evicted so that I can humanize it. That’s the classic approach. It’s never been a great appeal to me. So I sort of strip it down to: I give you one character over time. We call him Dennis. So why Dennis? Dennis had a lot of qualities that I personally admired that came out through his work, and as you noted, through periods when he didn’t work and what that did to him. So Dennis was a guy who did quahogging, clamming, and also drove a tractor, and was very dependent on motors and money to actually get into his job. If your snowplow doesn’t attach, you’re not going to make money that snow, and if your motor’s out, you’re not going to get paid. So part of it was that things actually happened in his life over real time. And he had these qualities — he was extremely prideful about his work. He loved his work. He had no sense of that work being problematic at all. It connected him to people in his family. He had no regrets about the work. He was essentially an optimist — as anybody who does fishing, you know, if you throw a line into the water, you’re essentially an optimist. He was a total optimist. I liked that. He was a little confused about himself. He was a bit of an unreliable narrator. He had some self-knowledge. He drank too much at times in his life. So he had obstacles. Between his obstacles, his personal vulnerability, his pride, his ability to do things I didn’t know anything about — and learning about bay water, where you find clams and how one does that and how cold the weather is and how you use a very long rake to get to the bottom — I think there were personal things about him and then also the aspects of change in his life that I could portray in a number of episodes over time. So that’s why I chose Dennis. There were a few others that I could have chosen, but he was the one that appealed to me. Joshua Dolezal: And to link Dennis to some of those factoids that you give — a couple of them that are interesting: 20 million jobs in 1979 in manufacturing versus 12 million jobs now, but 50% more population. So more people, but roughly half the same number of jobs. And then also, in 1950 a third of Americans belonged to a labor union. That became one in five by 1983, and then one in ten by 2019. So these are kind of standalone things. You do teach at a health policy institution, so I’m assuming that you do have arguments to make about these things, but you don’t make an argument in this book, as you’ve said. Would there be changes in health policy that could benefit someone like Dennis? Are you talking about more holistic reforms in labor law? Are you talking about things that average citizens could do? Maybe there’s no cure exactly, but is there any kind of legal or policy change that you think this book could help encourage or inspire? Michael Stein: Well, there are many, and I don’t know that we want to go deep into it, but the simplest one is — unlike every other industrialized, high-income country — we should have paid sick leave. I mean, that’s a simple — well, not simple, because we can’t seem to do it — but paid sick leave would be very good for people. They would not come to work and make us sick because they didn’t want to miss their paycheck, and it would be humane. That’s the simplest health policy piece that’s important. But there are obviously broader issues. The Broke book that I wrote is a bigger issue — I think it’s very clear that poverty is the primary driver of health in the United States. One of the very fascinating and underappreciated things about COVID — which was obviously disastrous in many ways, and which we’ve almost completely forgotten at this point — was that due to federal government policy, we had the lowest poverty rate in 50 years in America. So in the middle of the biggest health disaster on earth, the United States had its lowest poverty rate. There’s this weird silver lining in the middle of COVID. And it was dramatic — childhood poverty went down by something like 80%, which tells you that we have soluble problems in the United States that are very large problems and that drive health — and much else — and that are soluble should you decide to act on them. So these public health problems are problems of public will or political will. Be politically involved. I’m not sure you want this to be a political broadcast, but that’s my feeling about some of these things. And the physical labor book really speaks to — sick leave is the most obvious one. But what’s interesting is I started writing this and watching AI come along. Because what we worry about with AI — or what the AI boosters are telling us — is that the jobs that are going to disappear are white-collar jobs. So it’s interesting that these jobs that we considered most fragile, most difficult, most demeaning are probably going to be the last jobs to be hit by AI. It’s hard to have an AI robot plumber. And that’s interesting to me — that these people will be more secure than my lawyer friends five years from now. Joshua Dolezal: Yeah, well, the jury’s out on that. But a lot of the AI stories also warn of this so-called permanent underclass — if you don’t adopt AI, you’ll be left behind. Michael Stein: Or that there will be no jobs left in America and we’re all going to be unemployed. And what’s the health going to be like then? Joshua Dolezal: Right. Related question, also possibly too big to really tackle. I just wrote last week about the fantastic show The Pitt, which really exposes the burnout problems in American ERs. And also the same thing that pushed me out of higher ed — the corporatization of the university — is plaguing hospitals. So you have an attending physician, the director of the ER, saying, hire more nurses. And then you have an admin, the chief officer, saying the budget comes first. And there seems to be a bottom-line mentality that’s strangling the hospital in the same way that it’s strangling the universities. I don’t know if there’s anything from a policy standpoint that can change there. I don’t understand why it’s so inevitable that we have to be limited by budgets and by this idea of scarcity when the public good is a clear necessity and when the cost of sacrificing the public good is so great. Michael Stein: Yeah, so those are big questions. So let me put on my public health hat. When you’re a doctor like I am who’s worked in the academic medical world for years and then jumps into a public health school — which I did, and eventually became dean of the public health school — it’s a very different world from medicine. So let me take you into the world of public health, because we get very stuck with medicine. We get stuck with it because we have shows like The Pit that tell stories that take place in the world of medicine. It’s very hard to tell public health stories. In fact, I wrote a book about this called Me Versus Us, which explains why we talk about medicine and not public health — why medicine has so dominated the public conversation — whereas, in fact, the only thing that will improve our life expectancy will be public health. So public health is a completely underfunded, underrated, under-discussed ethos, essentially very different from medicine. And the book Me Versus Us explains about nine reasons why medicine has beaten up public health. They’re good reasons and they’re bad reasons. It’s a complicated story. But the notion is this — my analogy is soccer, for those of you who love soccer like I do. Medicine is essentially the goalkeeper. You want a really good goalkeeper, but the game is played on the field by the other ten people. And in fact, if you never have to use the goalkeeper, you’re probably going to win the game. So public health are the other ten players, and medicine is the goalie. Great to have a good goalie, better never to use them. And so if we actually had a public health system, we wouldn’t have these ongoing conversations about medicine. So I always start by taking people away from medicine, because their eyes immediately go to the shiny object of medicine because it’s so much of our economy. And because it’s so much of our economy, the things that you’re talking about — the corporatization of medicine — are really money questions. So if you want to talk about money questions, it gets complicated. In some ways, the answer to medicine and its expense in the United States — which is really driving in part the main issue of medicine in the United States, which is access to care and why 10% of our population doesn’t have access to care — is important. Okay, so it’s a long way around to say: here are the issues. There’s the access issue. There’s public health that prevents you ever from going to a doctor. Okay, now you’re 80 years old and you have to go to the doctor. You want the best doctor at 80 years old. In fact, in America, the best part of our health care is for people who are over 80. If you get to be 80, you want to live in the United States rather than any other country in the world — that’s completely clear to me. Until 80, I’m not sure that you want to live in the United States if you’re the average person in poverty. It’s not so great for you. You’d rather live in 25 other countries than here. And so the issues around the United States really come down to price and economics. If we lowered the price of things in medicine — which is really a price problem, from drugs to ERs — you wipe out the jobs of a lot of people in their communities. So if we take medicine and bring it down to a lower share of our GNP, you’re going to have a lot of unemployed people who now work in medicine, which is the major employer of most cities in the United States. So it’s a complicated question, the interaction. All of that is to say: at the personal level, the doctors who are taking care of you have to make some personal decisions about how they want to interact with you and how they want to deal with being told they have to see people every 15 minutes and rush. That’s a separate question. I’ve always considered it a very personal question — how you deal with the corporatization around you and whether you want to comply with it or not. Joshua Dolezal: That’s good. I love the soccer analogy, and the separation of public health and medicine makes perfect sense. I love your metaphor for that. To wrap up, maybe two questions here. And I want to tie this back to your other recent book, Accidental Kindness [https://www.michaelsteinbooks.org/copy-of-me-vs-us], which we’ve almost entirely run out of time to talk about. But no matter what the limitations are in terms of price or time — when you’re talking about limits and how many patients you can see in a day and so on — the argument that you make in that book is that kindness doesn’t cost more. Kindness doesn’t require more time necessarily. It can be a default setting that is simple and that, for reasons that seem elusive, is not obvious to all doctors. When I was reading Accidental Kindness, which is an argument book very different from A Living, you open with your experience as a medical student and a kind of stoicism that you were taught — this kind of machismo or indifference to cadavers and an almost unfeeling approach that your professor was trying to teach you. And it reminded me of a scene in Patch Adams where the dean of the medical school gives the first-year students a speech about how human beings are not worthy of your trust because they make mistakes and get tired — so our job is to ruthlessly train the humanity out of you and make you into a doctor. And it seems almost identical to your experience, that the humanity was being trained out of you, and along with that was kindness being trained out of you. I don’t know if you would agree with that, but why does that keep happening when kindness remains so essential to effective care? Michael Stein: Oh, we have how many minutes? That’s its own talk, Josh. That’s its own conversation. So let me just say, first of all, Accidental Kindness is a series of essays. It’s much more memoir-y — it’s really about me and some experiences I had where I said things or did things that I didn’t know at the time were either kind or unkind. That’s why it’s accidental, because I didn’t know until after the fact that I had done something that was quite unkind or not. So that’s the framing of the book. I always start by saying I’m a lover of kindness — it’s a spiritual act. But I also want a doctor who’s decisive, efficient, and competent. So I’m not interested in a completely kind person who doesn’t have those other things. Let’s always separate what we call empathy from actual competence, because you can be deceived as a patient where a person’s really nice but just really not a good doctor. So let’s start with that. Does it have to keep happening that kindness is trained out of people? I’m mixed about that. I do think that there is a selection bias — you take certain people into medical school, and most medical schools look for an array of people who are going to do different things in medicine, which require different attributes. So not everybody’s going to be what I would maybe call naturally kind. And then something happens to them in the training, which we know happens to people under great pressure, duress, and sleep deprivation. It changes people. For doctors or clinicians of any kind — social workers, physical therapists, nurses, not just doctors — how much are you able to be vulnerable to others and what they’re saying to you and asking of you? And I think that’s a hard task day in and day out for anybody, even with the best intentions. And I think awareness — am I seeing this clearly? Am I feeling this directly? — is a very important part of the self-awareness game, and we’re good at it sometimes and not good at it others. If you’ve been up all night with your screaming child or you have a child sick at home, you’re going to treat others differently when you have to go to work the next day. I also think that notion of paying attention — that largeness of spirit — is an important and a spiritual act, and we’re all imperfect. And I think patients have to accept this. And I also think they really do want kindness. They remember unkindness, but they really want kindness. And unkindness is never acceptable. But we’re lucky when we get real kindness. And I think that’s true everywhere in life, and unfortunately sometimes true in the office. One of the essays I wrote about is this notion of: can you be overly kind in the office? Part of what I think when you talk about burnout in medicine — I want to put a nice spin on it — is that people who are very compassionate, who are very kind, get fatigued. And that burnout, which we think of as negative, really came from a place of people being involved. You wouldn’t have burned out if you weren’t burning in the first place — I always say that. And that burning is what kindness and compassion is. It’s that tolerance and indulging of other people where you can say to them, and feel it yourself to a degree: a sad thing has happened to you, and I’m here in that sadness with you, and now let’s do some things about it. So that’s what I would say — a complicated, not sentimental, view of these things. One of the essays in Accidental Kindness is: is there any evidence that actual kindness matters to patient outcomes? And it’s very hard to find, frankly, because it’s a hard thing to test as a scientist. But spiritually, it’s the right thing. And as patients, we all love that feeling and that covenant we have with these providers who save our lives. Joshua Dolezal: We don’t have time to dig deeper into Accidental Kindness, but I’ll be sure to include that in the show notes. Final question, if we have time for one more. My series for the podcast is called The Things Not Named. It fits your latest A Living, which is an act of kindness in its own way, listening to these untold stories. So I’m curious — I’m sure you have other book ideas and maybe you’re superstitious like other writers and don’t want to talk about them — but what are some other things not named in medicine that you might explore in future books or that would be worthy of exploration? Michael Stein: Well, I have a book that will be out next year that is tentatively called Will Science Survive?, which is about that question and what we mean by science and what are the attacks on it and what are the unexpected pieces of it. So that’s something I’m writing about in sort of a larger philosophical vein. I’m also interested in this idea of: is health a human right? Which is sort of out there in the world. I don’t quite know what that means, and so I want to try to explore that a little bit. And I have a variety of other projects that I’m in the middle of that I won’t tell you about. But yes, there are lots of things to write about. Joshua Dolezal: We will stay tuned. Michael, thanks so much for joining me. Michael Stein: Josh, thank you. A great pleasure. Joshua Doležal: Michael Stein’s latest books, A Living [https://www.penguinrandomhouse.com/books/780358/a-living-by-michael-d-stein/], and Accidental Kindness [https://www.michaelsteinbooks.org/copy-of-me-vs-us] are available wherever books are sold. You can learn more about his writing at michaelsteinbooks.org [http://michaelsteinbooks.org], and I’ll put links in the show notes. The Recovering Academic is made possible by the support of readers and listeners like you. Thank you. Save the date for my next Substack Live. On Tuesday, May 19, at 1pm Eastern, I’ll speak with Dr. Lakshmi Krishnan [https://substack.com/profile/23703884-dr-lakshmi-krishnan], Assistant Professor of Medicine and Director of Medical Humanities at Georgetown University. That’s the thing not named for today. Until next time. The Recovering Academic [null] explores the messy intersections of medicine, culture, and storytelling. I write three new essays a month, hold live interviews, and produce a podcast about the things medicine leaves unnamed. This is all made possible by paid support from readers like you. More episodes of The Things Not Named ⬇️ This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit joshuadolezal.substack.com/subscribe [https://joshuadolezal.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]

The Things Not Named — With Kimberly Warner

“Some things can’t be healed. They just need to be held. Narrative medicine does a great job with this — sometimes the healing is in the holding.” Kimberly Warner, author of “Unfixed” Thank you to Mr. Troy Ford [https://substack.com/profile/114523160-mr-troy-ford], Annette Laing [https://substack.com/profile/32865756-annette-laing], https://substack.com/profile/36583519-mary-l-tabor, Jill Swenson [https://substack.com/profile/17281869-jill-swenson], and many others who tuned into my live interview with Kimberly Warner [https://substack.com/profile/6047953-kimberly-warner] last week. Kimberly Warner Bio: Kimberly Warner is a filmmaker, author, and patient advocate whose work explores what it means to live fully in a body that doesn’t always cooperate. After studying pre-med and biology at Colorado College and pursuing graduate training in naturopathic and classical Chinese medicine, she left a clinical path for a creative one. In 2015, a rare neurological condition upended her sense of balance. That experience became the seed of Unfixed Media [https://unfixedmedia.com/], a multimedia platform for chronic illness storytelling that has been recognized by PBS, Harvard Medical School, and the Invisible Disabilities Association. Her debut memoir, Unfixed [https://bookshop.org/p/books/unfixed-a-memoir-of-family-mystery-and-the-currents-that-carry-you-home-kimberly-warner/160300efbfb5c315?utm_source=google&utm_medium=cpc&utm_campaign=dsa_nonbrand&utm_content={adgroupname}&utm_term=aud-1885352274224:dsa-19959388920&gad_source=1&gad_campaignid=12440232635&gbraid=0AAAAACfld43LRlWFsC0Cbfw4WQ2MUKjWP&gclid=Cj0KCQjw1ZjOBhCmARIsADDuFTDTOd4RpFRfszCBBYQdq9BfkKybH4Pz9PFo7zucDLtNv0wp0NjTz6saAocXEALw_wcB], was serialized on Substack, picked up by Empress Editions [https://empresseditions.io/], and earned a Publishers Weekly Editor’s Pick and a Kirkus review calling it “genre-defying.” Kimerly is a member of the Global Advocacy Alliance, the PPAA (Patient and Physician Advocacy Alliance,) and a visiting faculty member with Global Genes. She also serves on the editorial board of the Journal of Health Design and is an ambassador for the Vestibular Disorders Association). The full transcript of our conversation is available below. Transcript: Joshua Doležal: Welcome back to The Things Not Named. I’m Joshua Doležal, and my series this year is titled for a phrase from Willa Cather. Cather famously said that it’s the presence of the thing not named that gives high quality to fiction, drama, and poetry. So this year I’m asking that question of medicine: How might we all be more attentive to what goes unsaid in the clinic, in popular culture, and in the experience of illness from the patient’s side? My guest today is Kimberly Warner. Welcome, Kimberly! Kimberly Warner: So great to be here. I love that you are exploring the white space, the unnamed, and that you’re putting that into the realm of clinical care this year. That’s fascinating to me. Joshua Doležal: It seems appropriate for illness and especially for your story. So, lots of mouthfuls there in your bio. You’ve been really active, it seems, in medical communities as a patient advocate and also as a storyteller. Kimberly Warner: Yeah, it was not intended. I certainly didn’t set out to go that direction. Although I do remember even in high school when I told my parents I’m going to medical school. And my parents said — well, my father was a physician and they said, do you really want to work with patients all day? And what’s the reality of that? And I said, no, I want to be a high school health teacher. And they’re like, how are you going to pay off your school loans? And I’m like, I don’t know, I’ll figure that out. But it’s interesting to look, you know, 35 or 40 years later and see how education has become a really big part of the way that I work with healing. And a lot of that has come through my own personal struggles and personal insights through living with a body that doesn’t always feel great. Joshua Doležal: I mean, it’s great that you’re using storytelling as a form of advocacy because I think it’s underutilized. And we were talking before we went live about narrative medicine and how it began at Columbia University. But there’s a long tradition of doctors writing about medical practice and really giving voice to things that can’t be said in the examining room or in the operating room. And I first came to this in graduate school. I was learning about deconstruction theory and this idea that all reality is constructed by language. And I kept wondering, well, what about the body? You know, the body has a kind of grammar. The body has a way of making sense of things and finding balance. So it’s not all relative, as Derrida and others would say. So I got into medical history and wrote a dissertation on the medical humanities and taught for many years courses like illness and health and literature, where I would have loved to have featured your book. It’s nice to be sharing that with folks on Substack this year. But I want to get back to your memoir, which is the first in this year’s series of illness narratives. I’ve been mostly interviewing doctors who are either in the process of writing a memoir or have written memoirs. My conversation last week with Damon Tweedy centered on his second book about mental illness and integrating mental health care into general medicine. So you’re the first author of an illness narrative. And before we dive into that, could you just give us a brief synopsis of your book for anyone who hasn’t heard of Unfixed or doesn’t know anything about it? Kimberly Warner: Yeah, I’d be happy to. I’ve got the little dust jacket summary here, and I can read that to you. But I’ll preface it with — it’s not your classic illness narrative in the sense that it’s a weaving of two different types of narratives, though they are both about identity, because anybody that’s lived with chronic illness knows that that really can crush our identities. There is — it’s not — true in the sense that I have a stack of favorite illness narratives here, and a lot of them are just like, this was the diagnosis, and this is the journey with that, and this is the resolution. And mine is much more complicated, let’s say. But here’s the dust jacket summary for those that don’t know. Unfixed: A Memoir of Family Mystery and the Currents That Carry You Home, is a haunting exploration of identity, loss, and the unsteady ground of becoming. When a midlife DNA test reveals that the man who raised her isn’t her biological father, Kimberly Warner is drawn into two parallel mysteries — one excavating the silence surrounding her beloved father’s death, the other tracing the absence of a stranger whose blood shapes her very being. As she unravels the secrets hidden beneath her family’s story, another rupture emerges, this time in her body. A mysterious illness takes hold, leaving her adrift in dizziness and a growing awareness that her body knows truths language cannot hold. Joshua Doležal: Nice. And I’ve got my copy here, so I’ll put a link in the show notes for anyone who wants to order it. So you are braiding two stories. Why did you not tell them separately? Kimberly Warner: Because they were completely linked, to the point where I think that the DNA revelation when I turned 40 was very much a catalyst for the disassembly that was happening in my neurology at the same time. And I think many — anyone listening that knows about vestibular disorders, especially ones that are neurologically related instead of within the ears, can often be heightened or triggered by extreme states of panic. And I was definitely going through a protracted panic attack and a real disorientation to who I was and who I had known myself to be for 40 years. So while I don’t think it was a direct link, I think there are a lot of factors that were happening. It was definitely a piece that pulled the rug out from underneath me and quite literally created the sensation of living on water, which is what this Mal de Débarquement that I have — that is the actual symptom. The experience of it is living on water. So you can’t really disentangle the illness from your life circumstances and it’s all part of the same fabric. Absolutely. And I don’t know if that’s always the case. I’m not going to say that everyone gets an illness because something psychological shifts in their life story. But for me, it did play a huge role. And I think, unfortunately, because of that, I also wasn’t diagnosed for five, five and a half years. And a lot of that was because of the multifactorial events that were happening. Based on which doctor I saw to try to figure out why I was so dizzy, they were either looking at the psychological issues and doing trauma work and brain spotting and everything under the sun, or concussions on the other end of the spectrum. So it made it very difficult to diagnose what was going on. Joshua Doležal: All of the people I’ve interviewed so far are doctors, and in a doctor memoir, doctors write about patients. The patients don’t always have the chance to write back. Your book is coming from the other side of that. When you’re going through your diagnostic journey — years of dizziness with no explanation and so on — I’m wondering if you really struggled with other people’s stories being projected onto you. I know with neurological conditions, it kind of literally is in your head, right? And there’s a kind of condescending form that that takes. So did writing Unfixed feel like you were reclaiming the narrative for yourself instead of being a character in someone else’s story? Kimberly Warner: Yes. And I’ll say that when I started writing this, it was 2018. So this was still pre-diagnosis, but it was also right on this precipice of me being so tired of pursuing cures. So I was resting in this place of trying to, like you said, reclaim all of what had just happened to me — including the DNA discovery and the dizziness and all the subsequent things that happened because of that. The loss of job, the loss of friends, nearly the loss of my relationship. And I was trying to just piece it all back together for myself. This was not intended to be something to be read by the world. It was very much just, let’s get this down on paper as much as I possibly can so I can remember the details. So as you know, when you read this, there’s certainly trauma in this, but there was also so much magic and love that was happening throughout this. And that was a really important part that I didn’t want to forget. And so in the writing, I think I was trying to weave those two together and maybe find a way for them to coexist, because I knew that what I had been doing — which was just chasing cures and living as if I couldn’t be happy unless I was fixed — was not working anymore. Joshua Doležal: One of the frustrating parts of your condition is that it’s invisible. I think you’ve even used that word in some of your advocacy. So what you experience is constant dizziness, this sensation of, like you said, being on water. But you don’t look sick. And I don’t know if this is true — correct me if I’m wrong — but when you’re in an examining room, everything has to be kind of reduced to puzzle pieces. So it’s the tests, the clinical signs, lab results, imaging, and so on. So I’m wondering, in your case, what’s lost when a doctor can’t see what’s happening? They can only see what’s measurable. And what did your doctors miss because they were looking for the wrong things or just not able to see? Kimberly Warner: Oh, gosh. Well, I actually just finished another illness narrative, and it’s called Dizzy. And of course, I picked it right up because this woman is my age. And I had to email her and say, we have siblings because our stories are so similar. She was dizzy for 18 years. And the parallels between her story and all the other vestibular patients that I’ve talked to around the moment — because there is lab work. There are classic vestibular tests. And you will, first you’ll get the Epley maneuver for the crystals in your ears. Then you’ll go for extensive two-day lab testing in the vestibular lab that’s designed to stress your vestibular system. But so many of us, especially with the central nervous system disorders, will go back to get the results after this hopeful duration after the test and — oh my God, they’re finally going to figure out what’s wrong with me. And the doctor hands you the paperwork and says, congratulations, there’s nothing wrong with you. And that is the most disheartening experience. And I remember that moment. I had already been living with it at that point — I think it was eight months. And I thought, I mean, I was going day by day thinking, I can’t live another day with this. Counting the days to his answer for me. And then for him to pat me on the back and high-five and, you know, you’re great. What they’re missing is that we’re not. And this was a dizzy specialist — a dizzy neurologist. And unfortunately, a lot of the central disorders are the last to get diagnosed. So when they’re checking the boxes, they’re going for — he eventually diagnosed me with cervicogenic vertigo, which is structural. He was saying it was in my neck. They want the quick fixes and they want to be able to medicate. And so I know there are so many vestibular patients out there that have to go through 20, 40 doctors before they end up getting to the one that’s going to address the central issues. And those are a little bit more complicated. And it’s tricky because it is in your head. And often they are treated with SNRIs and SSRIs. But the patient has to be coached enough to know that the doctor’s not saying you’re crazy because he’s giving you an SSRI or an SNRI. He’s not saying, oh, you’re making this up. He’s saying that the world is too much for your brain. Your brain is acting like a scared cat right now. And we need to dim the lights and we need to turn the volume down. If someone had told me that when they handed me the prescription for diazepam, I would have said, yes, that makes sense. But if they hand the diazepam to me and they say, you know, I think you have too much anxiety — well, of course I do right now because I can’t even walk across the street. So I think a lot of it just comes down to how it’s communicated. Joshua Doležal: I wonder if you might reframe that phrase. You know, it’s not in your head — it’s in your head and your heart and your nerves. I mean, it’s in your life, basically. And I want to ask you about your training because it’s a little bit non-traditional. You trained in both Western pre-med but then also in classical Chinese medicine before you turned to the arts. So that’s kind of an unusual combo. And in the book you write about the body knowing truths that language can’t hold — which is ironically how I got into medical humanities, right. The body knows things. It’s not all language. So I’m curious how that dual medical training shaped how you think about illness, but then also how you told this particular story. Kimberly Warner: Oh, well, instantly — thank you. Classical Chinese medicine is fascinating because so much of it lives in metaphor and symbolism, even down to the elements — categories of illness and any sort of medicine or herb is either earth, fire, metal, water, air. And it makes me think of — so the way that I experience the dizziness, like I said, is as if I’m on water. In Chinese medicine, there are lots of different ways that they might look at this, but let’s look at water simply as a kidney and bladder function — not in the classic organs, as in kidney and bladder, but what those organs represent in the universe. And there’s a lot there to do with death and grief. And what was happening for me when this experience of being at sea started, I was reliving another big seismic shift in my life around the loss of a father. I had lost my adopted father — the one that raised me, who I thought was my real father — when I was 18. But then here’s this other father that appears through a DNA test and, through some discoveries, he’s no longer available either. So there was something on a cellular level for me that was happening in the realm of grief. And I can’t separate the physiology with the metaphor. And I feel like that is a perfect place where Western and Eastern medicine can come together and can actually be really informative. And the physicians that are able to bridge that, I think, can penetrate a lot deeper into the true experience of what the patient is going through. Because we can’t separate mind and body. The body certainly does lead the way with symptoms. And I know for myself, my body was leading the way with symptoms. Heightened anxiety — I had never experienced anything like panic attacks before all of this was happening. What my mind was trying to do was to bring certainty into the experience. And the way I was doing that was by manically asking everyone how I should be experiencing this story. I would just tell strangers about what was happening to me in my life. And what my body was telling me was, this is too much and you need to slow down and process this information. I have said I even would have done really well had I been sedated, because I was becoming manic with the information and some gentle sedation so that my nervous system could catch up — this influx of information that was coming into my life that was changing the bedrock of my being — that would have been really, really helpful. So yes, I think there’s a real sweet spot between Western medicine and Eastern medicine that bridges metaphor with physiology. Joshua Doležal: And part of the Eastern tradition, as I understand it, is ceremony. So there’s nothing ceremonious about going to the hospital. It’s almost as disembodied, ironically, as it could be. I was speaking last week with Damon Tweedy about what happens when someone who is uninsured or underinsured goes to the ER looking for help. If they took some pills, you know — a cry for help, I need help, I’m a danger to myself. Well, if you don’t have the resources and you’re not in the bourgeois club, then you get escorted in handcuffs to the state hospital. How does that help your mental, spiritual condition? It’s like the worst possible ceremony, the worst ritual that you could undergo. You’re reminding me of one of my favorite novels, Leslie Marmon Silko’s Ceremony, which is about a war veteran. It’s a classic. I love teaching it. But this half-Laguna, half-white man comes back from the war — World War II — and he’s trying to tell his doctors that he feels like white smoke, and he’s narrating his own story in the third person. So he’s that detached from himself that he’s narrating as if he’s outside of his own body, but he sees his body as white smoke. Which is a perfect way of capturing that kind of shell shock — though it’s not shell shock. It’s not PTSD. It’s a spiritual illness that he’s carrying. It’s the image of himself and the Japanese soldiers, the kind of kinship between indigenous people and other Asians that he’s seeing and wrestling with. And a pill isn’t going to solve that. Four white walls in a hospital are not going to be the right environment for that. So it’s through traditional ceremonies that he finds his way back, and he has to kind of sing his way back. He has to find the story. He has to go to the place where uranium is mined to actually complete the ceremony for himself. And that’s just not how Western medicine thinks at all. So when you’re dealing with grief and you go to the hospital, there’s no ceremony for grief. It’s just sort of like, well, get over yourself — or here’s a pill to sedate you or something. But ceremony activates the body and the spirit traditionally. And I just don’t know that Western medicine has any idea what to do with that. Kimberly Warner: No, but it’s interesting. I’m sure you’re familiar with Dr. Rachel Naomi Remen. And she thought when she went into medical school and became a clinician that she could cure everything. And what she realized after years and years of practice is that some things can’t be healed. They just need to be held. And I love that so much. And that’s, to me, connected to what you’re saying around ceremony, because ceremony is a place to hold. And sometimes — and I think narrative medicine does a great job with this too — sometimes the healing is in the holding. It truly is. And I will say that for myself — I’m still dizzy sometimes. But I have been tremendously healed on this journey because I feel that while I didn’t have physicians that were holding me, I feel like I learned to hold myself in the dizziness. And that is a kind of healing that is lasting. It’s a deeper healing. It’s a spiritual healing. It’s something that allows me to be able to live with this experience of dizziness and still feel quite peaceful and joyful. Is that the role of the doctor? I don’t know. But I think that there are physicians out there that are able to recognize that maybe their greatest power isn’t in finding the physiological cure, but to still be able to hold the patient. Joshua Doležal: A commenter noted: healing is not always a lack of symptoms. I mean, really, you have to hurt to heal. That’s true of grief. If you don’t hurt, your love wasn’t real. The more deeply you love, the more deeply you hurt. And that’s something you have to feel, and there’s no way to release it except to feel it. And that’s not something that there’s a lot of patience for in traditional medical contexts either. Kimberly Warner: Yeah. And unfortunately not. My father — the one that I write about in the book — he was a heart surgeon. And I think he really was an unusual heart surgeon in the eighties because he wanted to access that deeper energetic healing with his patients. His favorite time wasn’t when he was cutting them open. It was when he was doing rounds. And he was a big, six-foot-six physician, but he would kneel down at the patient’s bedside and just rest his hands on them. And that was his favorite, favorite work. And I remember even as a daughter going around the hospital with him doing his rounds. And I could tell that there was healing happening in just that touch and in just that contact — the wordless contact even. I think some of this healing really happens beyond words. For me, writing the book was — even though it’s a book of words — I think largely the healing is what was happening in between the words. So much so that the last poem in the book talks mostly about how I am less the words and more the page. And to me, that is often where the real healing comes from. Kind of like what you were saying at the very beginning about the white space and the unnamed. Maybe the unnamed is really where the healing is coming from. Joshua Doležal: The thing not named, yeah. Part of what’s complicated about your condition is that it’s not fixable, really. Unfixed is the title of your book. And it’s a little bit unusual in that regard from a typical illness narrative. Because an illness narrative usually has — like the inciting incident, it’s like an episode of House M.D. I know that’s an obsolete show now. I’m dating myself by mentioning it. But in a House M.D. episode, there’s somebody in their normal life, and then they have a seizure, and that’s the beginning of the illness, and then you have to figure out what the diagnosis is. So there’s an onset, there’s a kind of crisis that leads to some kind of diagnosis, whether it’s satisfactory or not. And then it ends kind of one of two ways — either you recover or you don’t. Maybe you learn to accept that you’ll never recover. In some cases, you die, like Christopher Hitchens in Mortality. That’s the end of that illness narrative — death from cancer. But your book kind of resists that arc. And I hear the title, Unfixed, as a kind of defiant — I don’t know if it’s a thesis exactly, but it’s a kind of defiant message. Kimberly Warner: Philosophy, yeah. Joshua Doležal: Yeah. So I’m wondering if refusing resolution in the book is a craft choice, a philosophical stance as you’re saying, or something your illness forced on you. If you had been cured, would you have written a different book, do you think? Kimberly Warner: Yeah, this is a life lesson for me. And I can honestly say I’m glad that I hadn’t been cured because — well, first of all, I love one of my favorite bits of feedback that I get from people that read this book: they sleep really, really well when they finish. And at first I was like, what? Like, is it boring? Joshua Doležal: Yeah. Kimberly Warner: And there’s a nervous system reset is the way it’s been communicated. And I think our culture, our collective, is needing more of this nervous system reset. I couldn’t have written that nervous system reset had I been cured because then it’s just following that nice linear arc of, you know, the hero needs to get to the resolution. And I finished the one I just mentioned, Dizzy, the memoir. And I was a little bit re-traumatized reading it. And it was fun and it was gripping and when’s she going to get the answer and all of that. But it engaged me physiologically in a way that felt so much more stressful. And the way I had to — and where I was even when I wrote this book was a deeper settling with, and a deeper allowing with, the experiences that I was having. And I did not know that when people read that, that’s what they would be picking up. But it’s really cool to hear that there is kind of like a nervous system reset in people. Finally, they get to let it all go. They get to let down that struggle, that achievement, that self-actualization — all of those things that we are trying to achieve — and they get to just be. So it wasn’t a choice. I didn’t think that that was going to be an experience that my readers would have. I wasn’t even writing it for readers. But it has been my experience, and that’s lasting no matter what now happens — even this last month, since I’ve had some higher dizzy symptoms. I feel just kind of peaceful in the midst of all of it. So I feel like those are some good lessons for all of us right now in our overstimulated population. Joshua Doležal: That’s an interesting effect of the book. And I wonder if you could give us a taste of it. We were talking about — there’s a chapter that we flagged that we could possibly read a bit of. I think this is the diagnosis, or it’s kind of where you understand that there’s no cure. Kimberly Warner: Yeah. How much would you like me to read? Joshua Doležal: Chapter 29 is the one that you mentioned. Why don’t we start on page 184, beginning of late summer, and kind of on to the middle of 186, so a couple pages. Kimberly Warner: Okay. My beginning on Chapter 29 is “Reality Strikes: Damning Red Inks.” Do we have different page numbers? Joshua Doležal: Well, on 184, the last full paragraph here begins — Kimberly Warner: Oh, late summer. Got it. Yeah, yeah, yeah. Thank you. Joshua Doležal: So give us kind of the lead up to this. Kimberly Warner: Yeah, so this was the dizzy doc that I was mentioning earlier that eventually diagnosed me with cervicogenic vertigo. So at this point, the early dizziness had started in February just erratically, and then it was consistently dizzy by May. So May, June, July, August, September. And those months were just — hell on earth. I did not know up from down, constantly being pulled in these sensations of being pulled in different directions, like walking in a bouncy castle, the sidewalk dropping out, to the point where I just couldn’t — I didn’t leave the house. So I was desperate. [Reading from Unfixed, Chapter 29:] Late summer, I finally meet with a neurologist, Portland’s leading dizzy doc. I enter his office, certain he has an answer. Hope is hard. I’ve been carrying it in my pocket for months. The possibility of this doctor not having answers is inconceivable and crushing. After listening to me convey, for what feels like the hundredth time, all my bizarre experiences and sensations, he orders two days of extensive testing at Legacy Hospital’s vestibular lab. “It’s not going to be fun, I’ll tell you this right now, but we may get some answers.” I nod obligingly. I’m quick to tell a doctor he’s right or she’s helping me even when I feel like I’m dying inside. I project all my absent father issues on male physicians. Maybe he’ll think I’m so smart and so sweet that he’ll go the extra mile to make sure I get better. He’ll look forward to the day when he sees me out in the world succeeding and think, I helped her. He’ll be proud of me. But he was right. Two days of vestibular tests designed to put maximum stress on all the visual and auditory connections to one’s inner balance are not fun. He was also right to use the conditional verb may, leaving room for no answers at all. “Kim, you passed your tests with flying colors. Your vestibular system is working great.” Ordinarily, this kind of daddy high-five would projectile shoot glitter from my eyes. But instead, I am deflated and in disbelief. So, that’s it? But what do I have? Are you saying nothing is wrong with me? Maybe I haven’t conveyed how dire this is. Maybe I tried too hard to look okay, to be pleasing. I can’t go on like this. Does he think I’m making it all up? “You may have cervicogenic vertigo.” Cervic — what? It takes me a moment to realize he’s not talking about my vagina. “I’ll prescribe you 12 sessions with a great vestibular PT. She’ll work on your neck. And you may feel some improvement. And if that doesn’t work, we can start drug trials. Benzos, anti-seizure drugs, anti-anxiety drugs. They all have side effects that you’re not going to like, though.” Contempt smolders inside me. You may feel some improvement. You don’t even have a definitive diagnosis. I can barely hear him anymore as he rattles off drug names, possible complications, dependencies. He starts to read my face. I am no longer speaking, only shuddering. With an attempt to comfort me, he says, a tincture of time. I stand up, the floor trampolines. He reaches out his hand, and my misinterpreting heart leaps towards it — a gesture of warmth and support delivered on a scribbled prescription pad for diazepam. “The body heals itself, and doctors take the credit,” he chuckles as I walk out the door. I hate his flippant remark and the kernel of truth that suggests. Time can be the ultimate healer, at least in the most broad sense of healing — the kind of healing, or post-traumatic growth, that may not cure bodies but can sometimes heal spirits. A person becoming more virtuous, more brave, more connected because of illness or tragedy. But I don’t want my spirit to grow. I want to be fixed. I wobbled home thinking about his parting words. If this is true, are all treatments, protocols, and dollars spent along the way just buying time? Time is also the ultimate killer. What if time makes this worse? Not everyone has access to resources and support. Sometimes time destroys us. Joshua Doležal: Thank you so much. So it’s indeterminate. And instead of trying to resolve that or tie it up in a bow, you just kind of leave us in that predicament — which I think is a powerful place. We have to finish that story within ourselves. Kimberly Warner: It’s a very true place, too. I’ve been working with Unfixed Media now since 2019, and I’m constantly working with patients and their stories. And most of us don’t have cures. It’s interesting how the medical system is designed to — you know, fix things — it’s emergency care. We’re really, really good at emergencies. And largely, a lot of people are walking around with things that can’t be fixed. And there’s not a lot of narrative around that in media. And so what it does, I think, for patients is it leaves us feeling isolated. And then when we read stories or we watch films that talk about that isolation and that unfixedness, the uncertainty, there’s a settling that happens that’s like — oh, my God. Like I said earlier, maybe I won’t be healed, but there’s a new emergent self that can still live her life within this. One of my favorite people I’ve worked with over the years — we started in 2019 doing a documentary — and his name is Dylan Shanahan. He wrote Liberation of Being. Lives with ALS, very, very late stage. But even when I met him in 2019, he wasn’t able to communicate with his mouth, only with his eyes. A young person. A beautiful gentleman. And I helped him write his memoir a couple of years ago. And he is quite a shining example of how that life force can continue to thrive and exist within an extremely compromised state. Joshua Doležal: You mentioned your films. Maybe we could end there since we’re getting close to our time. So you’ve made films that you screened at Harvard Medical School. You’re doing films as part of your advocacy work, and you’re on advisory boards that really are contributing to that advocacy. Do you think illness narratives like yours actually change how medicine is practiced, or is the power of it mainly for patients to feel solidarity and that nervous system reset that someone gets from reading your book? Is that for other people in your shoes, or is that actually something that you think doctors and other caregivers will absorb and then change? Kimberly Warner: Yeah, the goal would be to get these in medical schools. I think patients seek this stuff out. Even with social media, they can find it now. So that’s great. But to me, the real work is getting the films into medical schools, getting them into curriculums, getting them in front of physicians that are already practicing. My episodes are all eight to ten minutes long. It doesn’t take long for a physician to really just grasp a sense of humanity within the voices that I feature in these stories. And I really stay away from, let’s talk about what your treatments are and all of that. It’s more the deeper themes around hope and purpose and meaning. One of the episodes towards the end of the first docuseries asked the question: would you give up everything you’ve learned since your diagnosis in order to be healed? And there was no right or wrong. I wasn’t looking for some sort of glitter rainbow from people. And it was a wonderful mixed bag. But a resounding no came from a lot of people, including Dylan — this gentleman with ALS — because he had gotten to the point where he felt like ALS had become his ultimate teacher. And he wouldn’t want to take away those lessons. So I think that kind of level of humanity — when a physician can, in 10 minutes, they’re just looking for bullets and ways to attack what is coming in at them. But if they can hold a little bit more of their patient’s story, I think it just opens the potential for an additional kind of healing if they are unable to heal them with the magic bullet. Joshua Doležal: I know from speaking with physicians that some of them are fighting the common enemy of the patient, which is the corporate bureaucracy. So it’s not that they’re unconvinced of the need for more healing. It’s just that they’re not given opportunities to spend that quality time or show anything that’s not a billable hour — or they just can’t, within the system that they operate, perform that way. And that seems especially harmful in the case of chronic illness because it’s the contextual things that make it worse or even spark the onset of it. And so it’s more of the contextual human story that a doctor would need to be able to respond to. And yet the constraints of the 15-minute visit, or if they are running behind all day and they can’t get their 40 patients in because some admin is telling them they have to do that — I think sometimes the culture and the corporate environments that are created within hospitals work against that too. Kimberly Warner: Yeah, and I think, to me, there’s a solution to that. If 10 minutes is all they’ve got, have resources for your patients. Give them your time for those 10 minutes and then hand them a resource — with a link to one of the Unfixed docu-series videos or for, you know, my dizzy doc — hand them the pamphlet to the Vestibular Disorders Association that’s literally in the same town so I can connect with support groups and additional physicians that are working within — I mean, have resources. We live in a world where there are so many resources. And I think maybe that’s a lot of extra work for the doctor, but maybe there needs to be an additional staff member that just gathers resources for those patients, because a lot of that time is just going to be taken up by gathering data and writing a prescription. But if the patient’s sick, they’re going to go home and they have got lots of time. I guarantee you they’ve got lots of time. So give them something to do with that time. Joshua Doležal: Tell me a little bit about Unfixed Media. So you’re telling other people’s stories — are these oral histories? Are they interviews? What would someone see in your films? Can they go somewhere to watch some of these? Kimberly Warner: So there’s a great channel called the Disorder Channel, and that was started actually during the pandemic by two gentlemen that were running a rare disease film festival on the East Coast. And then because the festivals had to be shut down, they started a channel, and it’s accessible through Amazon Fire and Roku. But I also have everything for free on YouTube and on the Unfixed Media website. It originally began just as a documentary, a feature documentary. But like I said, we started filming in 2019 and the pandemic happened. So I was three subjects down and then we had to shut everything down. So I had 20 individuals that were already signed on and I thought, let’s just use smartphones — I’ll send them equipment and see what we can get done in their living rooms and bedrooms. And it ended up being such a successful model for patient narratives because I found that they were actually even more comfortable than the ones that had the film crew in their living rooms. And very vulnerable. And so we filmed for two years where they, every month, would answer a question I had. And then they were edited into a docuseries, a two-year-long docuseries. And then that snowballed into another vestibular series through the Vestibular Disorders Association. And then another one through Solve M.E., which was all about myalgic encephalomyelitis and long COVID-19. And then I did one through Harvard Medical School and Dr. Annie Brewster that was on all mental health. So it keeps going — every year I sort of respond to what organizations might feel like there’s a need for this type of education. There are always willing ambassadors and patients to participate and support. And it’s really easy. It’s been an easy way to gather these stories. And I’ve always — I’m very picky about how they’re edited. So they’re beautifully done and staged as well as they possibly can. And ultimately someday — I’ve actually applied for a Guggenheim grant and I’ll find out next month if I got it — but I would like to go back to those original 20 subjects, or at least a smaller pool of those subjects, and finish the feature documentary. A little bit like the 7 Up stories, the films that were done over a period of, God, I don’t even know, 49 years. And see how these subjects are doing seven years later, because chronic illness is chronic. So how are they doing seven years after our first interviews? So I’ll be doing this for the rest of my life. It feels really satisfying to bring these stories into a little bit more of the general audience. But I’ll tell you, it’s an uphill battle to get people to watch it. I think we have to find our niche populations, and medical schools would be a great place for that. But a lot of the time, as soon as somebody says, here’s chronic illness, they’re like, no, I don’t want to hear it. Sounds sad. And the irony is that so many people, when they watch these, they feel uplifted. They are stories of human resilience, mostly. Joshua Doležal: Absolutely. Best of luck with your grant. And we’ll end with a plug for your memoir, Unfixed, which is available from Empress Editions. And I’ll point everyone to your Substack, unfixed.substack.com. I’ll put the links in the show notes. So that’s the thing not named for today. Thank you, Kimberly, for sharing your time and your book with us. Kimberly Warner: Thank you so much, Joshua. Take care, everyone. Bye. My 2026 series explores medicine and storytelling. Come think with me about how narrative bridges gaps between doctors and patients and the public, and why we need writers like Kimberly now more than ever. Paid members get two in-depth essays each month, on-demand interviews, and full archive access. More episodes of The Things Not Named ⬇️ This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit joshuadolezal.substack.com/subscribe [https://joshuadolezal.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]

The Things Not Named — with Damon Tweedy

Thank you Kae [https://substack.com/profile/22585173-kae], Lori [https://substack.com/profile/5669451-lori], Michelle Ray [https://substack.com/profile/329206267-michelle-ray], and many others for tuning into my live video with Damon Tweedy [https://substack.com/profile/182153959-damon-tweedy]! Damon Tweedy Bio: Dr. Damon Tweedy, is a psychiatrist, author, and leading voice on race, medicine, and mental health. He’s a professor of psychiatry at Duke University School of Medicine and a staff psychiatrist with the Durham Veterans Affairs Health System, where he co-leads an integrated primary care mental health team. A graduate of Duke School of Medicine, he also earned a law degree from Yale Law School, focusing on health policy and medical ethics before returning to Duke to complete his psychiatric training. Dr. Tweedy is the bestselling author of Black Man in a White Coat [https://bookshop.org/p/books/black-man-in-a-white-coat-a-doctor-s-reflections-on-race-and-medicine-damon-tweedy/8395478], which takes a hard look at racism and American medicine. The book was a New York Times bestseller and was named a top nonfiction book of the year by Time Magazine. His latest book, Facing the Unseen [https://bookshop.org/p/books/facing-the-unseen-the-struggle-to-center-mental-health-in-medicine-damon-tweedy-m-d/ca86d29cc0c00b35?ean=9781250284891&next=t], explores the struggle to center mental health within medicine and was recognized by Nature as one of the best science books of 2024. The full transcript is available below. Transcript: Joshua Dolezal: Welcome back to The Things Not Named [https://podcasts.apple.com/ca/podcast/the-things-not-named/id1795513589]. I’m Joshua Dolezal, and my series this year is based on one of Willa Cather’s famous passages. She said that it’s the presence of the thing not named that gives high quality to fiction, drama, and poetry. And so for my series this year on the medical humanities, I’m applying that principle to how we might all be more attentive to what goes unsaid in the clinic, in popular culture, and in the experience of illness from the patient’s side. My guest today is Dr. Damon Tweedy, psychiatrist, author, and leading voice on race, medicine, and mental health. He’s a professor of psychiatry at Duke University School of Medicine and a staff psychiatrist with the Durham Veterans Affairs Health System, where he co-leads an integrated primary care mental health team. A graduate of Duke School of Medicine, he also earned a law degree from Yale Law School, focusing on health policy and medical ethics before returning to Duke to complete his psychiatric training. Dr. Tweedy is the bestselling author of Black Man in a White Coat, which takes a hard look at racism and American medicine. The book was a New York Times bestseller and was named a top nonfiction book of the year by Time Magazine. His latest book, Facing the Unseen, explores the struggle to center mental health within medicine and was recognized by Nature as one of the best science books of 2024. So thanks for joining me, Dr. Tweedy. Damon Tweedy: Yeah, it’s a pleasure. Joshua Dolezal: So Damon, maybe we can start with your family origins. If I’m not mistaken, you and I are both first-gen college students. So it was kind of a long road that you took from where you were born and raised to Duke and then also to Yale. Damon Tweedy: Yeah, so, you know, growing up, it didn’t feel that way. But now, looking back — I’m 51, almost 52 — it does feel like, yeah, you know, it was quite a journey. So I grew up in a two-parent home, mom and dad, both of whom traced their families back to America’s origins, right? Back through segregation, even back to slavery — because I have an 1860 census my dad showed me of some of his relatives. And so they grew up from Southern Virginia, grew up during the time of segregation. My parents are still living, they’re elderly now, and literally, you know, the things that we read about in textbooks were their lived experience. The Civil Rights Movement came to them when they were in their early 20s. So their whole first 20 years were in that space. And so that undoubtedly impacted how they experienced the world, see the world. And so for me, I grew up — so my dad worked in a grocery store, a food store. Mom worked in a sort of government, kind of administrative secretarial type work. And I had an older brother and we were in a community that was all Black, literally 100% Black, a very working-class sort of Black community outside of Washington, D.C. Back in those days, busing was still around. And so we were bused to a neighboring district that was all white. And so those are probably my first earliest kind of signs of, okay, you’re different. And what do people make of you by being different? And so for me, that difference was that, you know, I was kind of really into math and numbers — I was sort of an odd kid in that way, really into that. So I excelled in math, but I was also one of the Black kids bused to a school that was all white. And there were a lot of perceptions among teachers there about the Black students not being capable or being somehow, you know, a problem — things that we sort of all hear about. And so for me, I was finding myself in a space where, at the same time, I was a top student. And so people didn’t know what to make of me — the teachers and sometimes my classmates — because there were all these perceptions about what it meant to be a Black person, you know, largely negative, right? And so I experienced that sort of duality at a very early age. When I got to high school, my middle school was a local Black neighborhood school, but then I tested into a magnet program in high school. Little did I know at the time how powerful a school it was in terms of some of the people who went there and what they achieved. But it was a magnet school that was pretty much all white and Asian within a school that was otherwise Black. And so I was in these magnet classes with white and Asian students, but the rest of the school was mostly Black. And there was always this sort of tension between — where do I fit in in these two worlds? And so that was sort of a common theme, and it played out in a lot of really kind of crazy ways. One story I can tell real quick that will encapsulate this. In high school, in 10th grade, I was in a chemistry class — literally the only Black student in a class of 30 students. And one day, our school was a school of excellence, and so they brought in several leading politicians to sort of talk about our tech program and how great it was. And so at that time — given my age — this was Governor Bill Clinton before he was president, and several people across both parties. And they sort of took them around our school to the tech programs. So here I am, the only Black student in that class. And before they get to our particular classroom, there’s suddenly four or five other Black kids in the class who are just sort of there, positioned. And then you see where I’m going with this? And then suddenly, as soon as these political people leave, those kids are just kind of told to leave. And so I’m back here as the only Black student in the class. And I’m looking around like, what the hell just happened? And no one had any reaction. It was like no one else seemed to get what had just taken place. And that sort of in some ways encapsulated my perspective of being different, you know, and having to navigate two worlds. So my first book sort of starts with me being a medical student, but that’s sort of the backdrop to that. And so when you get to medical school at a place like Duke, that’s just accentuated — that whole idea of two worlds. The world of the doctors, you know, mostly white and Asian. Then there’s the world of patients and the community that you’re around, which is largely Black. And how do you navigate those two worlds? And so that was sort of the tension that I experienced at a young age, but it just really was accelerated in a medical setting. Because for me, you know, part of what attracted me to medicine was the idea that it was objective, that it was concrete. It was data-driven. You know, it doesn’t matter what you look like on the outside. A bone is a bone. A blood vessel is a blood vessel. And so that’s part of what appealed to me. It’s like I could contribute to society, but in a very concrete way. And so it was really kind of a shock to the system to get into medicine and realize that it was sort of in some ways the same old thing in terms of those problems that I’d experienced as a young person. Joshua Dolezal: Yeah. One of the philosophers that I used in my dissertation was Helen Longino, whose iconic book is called Science as Social Knowledge, kind of questioning this idea that science is just objective because it always takes place in a context that is social, and that certain questions get privileged and certain research gets funded and all of that. We’re the same age. So I remember Clinton when I was in high school and all of that. Two questions came up as you were telling a little bit of that story. One — you said that you tested into this program. I know that recently there’s been some debate about whether standardized tests are actually exclusionary, whether they set arbitrary barriers for diversity in college. And I know during COVID, a lot of those standards were just taken away. And yet I’ve heard other writers talk about this — Thomas Chatterton Williams is another one who felt like standardized testing was the only way that he got noticed at all, that he would have been lost in the cracks if it hadn’t been for some kind of merit-based way of breaking through. So I’m curious what your thoughts are on that, whether standardized testing is actually a way of bringing more diverse voices into medicine or whether it’s been kind of exclusionary. Damon Tweedy: I think it’s a mixed picture. I think it depends on how you use it. I think that if it’s used — like, a number in and of itself — it has to be — it’s going to sound crazy to some people, but a number has to almost be contextualized. Like, if you take, let’s say, an SAT score — let’s just say 1,200, right? Now, 1,200, depending on what your background is leading up to that place, that could be a not-so-good score, that could be an exceptional score, depending on what your background is and what you sort of had to overcome and deal with. So you think about my situation. First, you know, parents did not go to college. Despite my mom’s best efforts, I was sort of like anti — you couldn’t get me to read a book. I was kind of anti-intellectual, because that was sort of what was cool, and that was sort of the internalized message as a Black person — that these books you’re learning about in school, about 18th century England, that’s not for you, so why even bother? And so in some ways you’re kind of — it’s easy to sort of go down that path. And so you think about me getting a score like that. You know, given my background, that score may show a lot of potential. But if you compare it to someone who has had all the tutoring and — I was even told when I was in middle school and early high school that you couldn’t even study for the SAT. Like, I was like, really? I mean, looking back now, I think, really? People told me that? But that’s what I was actually told. Obviously there’s a whole testing industry that would prove otherwise. And so if you compare people — again, the score in isolation — if you’re comparing someone like me with that score to someone who has had a much more privileged background, and putting us on the same footing, then I would say no, that’s not great. But if you sort of contextualize that person — what is that person’s distance traveled to get to this place? Then I think the scores could be potentially very useful. So again, it’s all about how you choose to use it. But if you just use it as a blanket number and say this is your value, then no, I think it could be more harmful than good. Joshua Dolezal: I heard Scott Galloway talking about that — you know, that it used to be that you could be kind of average and then get into an environment where you could become exceptional over time. But a lot of elite universities now seem to screen for these superhumans that are already superhuman at age 17. And yeah, it’s a problem. The second question from your background — you’d mentioned feeling kind of caught between two worlds. You didn’t know quite where you fit. And there’s a saying about comedians, right? That they’re all damaged people. And I think there’s a similar saying about memoirists, which is that we felt dislocated or marginalized somehow, and that we try to write our way back into normalcy. I don’t know if that is true for you — that the impetus to write your first book came from that sense of wanting to bridge the two worlds. Is that accurate? Damon Tweedy: I never heard that exact saying. I heard about comedians, but not about memoirs. But I will say, it was an effort to make sense of what I’d experienced. Like, I would have an experience — it all started — writing not even with the intent that I would one day be writing a book for a public audience. It was more about writing for my own sense of like, how do I make sense of this experience internally. You know, I spent eight weeks in a hospital setting — again, patients often all Black, staff the opposite. I’m the only Black person in it. I would always find myself caught in these two different kinds of spaces and not having — as I put in the book — one foot in both worlds but not two feet in either. A sort of dislocation. And so it was kind of just a way to make sense of what I was experiencing initially. That’s how it all kind of really got started. And then as I began to write a little bit more, I began to realize that there were aspects of what I was writing about that other people could connect with. And then it just sort of built upon — often Black people, but even beyond that, because in so many ways, as you learn, there are so many ways in which someone can be othered, right? And I was able to feel like I could connect with people in other ways as well. So that’s sort of how it kind of all sort of evolved. But it started as something to make sense for myself. Joshua Dolezal: I had the pleasure of teaching Black Man in a White Coat. I used to be an English professor in Iowa before I pivoted to independent writing and podcasting, but I loved teaching it, and students resonated with a lot of your stories and learned a lot. They appreciated the research that you brought to it and the historical perspective. What really struck a lot of them was the opening, so I wanted to talk about that first scene that really hooks the premise. And I’d like to also maybe get into some of your influences — people that shaped you as you were writing this or models that you had for the book — because the book doesn’t come out of nowhere. You join a conversation about what it’s like to be a doctor and there’s a great body of literature on that already. Damon Tweedy: Yeah, so, you know, just to quickly start that last point. As I got into medical school and once I was there, I started getting interested in stories. Like, it was fascinating to me that, you know, in some ways a story — like a doctor could write a 750-word essay about an experience in a clinic with a patient, and you could learn so much from that. And it was a sort of way you could connect to that. And I found it ultimately became more interesting in some ways than, say, the latest New England Journal study comparing this drug to this placebo. And it was like, wow, these stories are fascinating. But what I noticed — and there were many books, many writers who were really successful, and I drew on many of them, I have a whole library of books over here that’s nothing but medical memoirs in one row — what I thought I brought to the table, looking back, is that those stories were set in big cities often, but there wasn’t that dynamic of what is it like to be a Black person, given our country’s history, to be in these same rooms? And what were the tensions between patient and doctor that maybe someone who is not Black and didn’t have my experience growing up could sort of understand? So that’s sort of how the book situates within that literature of medical memoirs. But as for that opening story — so I’ve already kind of laid out for you some of the dislocation I felt and how medical school would start to be this space in which I could kind of escape that. I initially started medical school thinking I’d become a cardiologist or an orthopedic surgeon — very, from my mind, very concrete, objective enterprises, you know, a blood vessel is a blood vessel, a bone is a bone, right? And that was sort of how I was thinking about medical school when I started. So in the background, of course, in the mid-90s, Affirmative Action was — there was an earlier attack. There’s always been attacks on it, right? There’s always, you know, history repeats itself. So there was always a sense of, you know, you’re in this place like Duke — man, do I really belong here? You know, my parents didn’t go to college. I’m a Black guy here. This guy next to me, his dad’s the dean of this law school. This guy’s mom owns a company. They’re driving Mercedes to school and like, man, you know, I don’t belong here. Right? And they’ve all gone to Ivy League schools, Princeton and whatnot. And so what am I doing here? So there was always that there. And then there was this early day, first few weeks of med school, where basically I leave the classroom for a break, come back between lectures, and the professor confronts me in the room and says, “Sir, are you here to fix the lights in the room?” And I’m looking around like, who’s he looking at? He’s looking at me. And I’m like, well, no. And he’s like, “Yeah, but I mean, I called about this last week. Why haven’t you done it?” He sort of got irritable about it. And he really kind of doubled down. I’m like, whoa, what’s happening here? Why is it me? And I’m not someone who wants to just jump to the idea that race is always the reason why someone treats you a certain way. But I couldn’t come to anything else. It’s like, wait, why else — I’m dressed the same, everything’s the same as everyone else except the obvious, right? And so I was like, man. It always comes back to this. And so how do you deal with that? I’m a really big, tall guy. Am I going to come back with anger? Is that going to — how is it going to be received? Am I going to be some, you know, angry Black guy who’s looking to make everything a problem? And this guy was small — so I could visualize how that could have gone south so quickly. And so what do you do? I mean, just based on life experience, that could have gone south really quickly. And so you kind of retreat and you’re like, man, this guy thinks I don’t belong here, right? So I had to — it was like a test for me. Do I belong here? And so I really kind of internally just — maybe he’s right. Maybe all these things are true. And so I just really kind of tapped into something I didn’t know I necessarily had at that point in my life, where I doubled down and I studied like hours around the clock, basically, almost literally. Ended up at the very end getting one of the highest grades in the class. And the way it worked back then is that you would meet with the professor at the end of the course. And then it was a weird thing because, you know, I knew that at this point I’d done well. But then the professor — when he saw my score and he saw me — he did this double take and started getting nervous and stumbling. And it was weird because it was like in some ways I vindicated myself. I’d shown him — I stuck it to him, if you will. But at the same time, it was like, you know, I’m different, right? And people are going to see me differently. And no matter how much I just want to be like everyone else, I just want to be a medical student — I have to navigate this reality that people will see me differently. And I have to figure out how to make that work. And so that was sort of the opening salvo to that journey. Joshua Dolezal: And he, as I recall from the book, offered you a chance to join his research team, and he wanted to be part of that. Damon Tweedy: It was like a patronizing kind of thing, right? Because I think he remembered the first encounter in retrospect, and I think it was just so awkward. And it was like, no, we just need to move forward. Joshua Dolezal: What you’re describing — being seen a certain way by professors — it didn’t stop once you started practicing. And one thing I love about memoir writing and your book in particular is that our lives happen to us in chronological order, but we don’t have to tell everything that way in a memoir. We can choose how we’re going to order things. And so sometimes the way you place two stories side by side is enlightening. And in this case, you had a self-admitted white supremacist named Chester, and then in the same chapter you had a Black man named Robert. And neither one of them wanted you as their doctor. That was a really interesting contrast — for both of them, coming from very different backgrounds, to draw the same conclusion. So why did you juxtapose them like that in the same chapter? And what did you learn from that? Damon Tweedy: At that point in the book, I’m an intern, a medical intern, which is the — people have probably seen TV shows — busiest year in a doctor’s life, you know, all those stories about interns. And so, yeah, you just want to be dealing with all these other challenges: the 3 a.m. call, you know, the heart attack in the room, whatever. And so you’re dealing with — can you cut it, right? And so that’s the context of every intern. And so in some ways, it’s extremely stressful. And you want to feel like you’re just like every other doctor, but then these things happen and you’re reminded you’re different. So one is that you have a white supremacist patient and his family who sort of embodied all that. And I saw all these Confederate flag tattoos and outfits and inward slurs and all that. And you’re like, whoa, obviously they didn’t want me to be a doctor, right? And then — but the irony was that I was the only Black doctor of that whole sort of medical team, like 20, 30 doctors, only Black person there. And so I’m the one who gets assigned to this white supremacist. And then in that same year, I had another patient — the Black patient you talked about — who had internalized that Black people were less, you know, successful, right? Less, were inferior in some way. So he’s like, I didn’t come to Duke to see a Black doctor. I came to see, you know, this Jewish doctor, this Asian doctor — all the stereotypes that sort of kind of come in there. I didn’t come to see a Black doctor. Why are you trying to give me inferior care? And so it’s like, wow. And so it just shows how deep that cuts, right? It shows how deeply the racism cuts into how people perceive a Black person in a white coat, in so many ways. And so what I had to do — you know, I always kind of circle back to the idea of what do you do with that? Anger is always what you feel first. Defensiveness — that’s the natural reaction. But is that going to get me anywhere, or is that going to just make things worse? And that’s always the thing that I’ve had to kind of navigate, right? There’s a downside to that — we’ll maybe get to that later. But I’ve sort of been able to navigate that anger by not expressing it and trying — I’m going to prove someone wrong, right? I’m going to just show them how competent I am. And that’s sort of been my approach to things. And in both cases — I mean, I guess I don’t want to give it all away — but in both cases, I was able to sort of overcome tremendous obstacles, and to have both people agree to have me successfully treat them as their doctor. But it did come at a cost, right? I mean, so on one hand, that’s a great story. I was able to overcome racism and do the good, right? But I think the downside is that, you know, for me to internalize all that — I think it actually impacted my health, right? Physically. And now I’m a psychiatrist and I think about the mind and the body and how much they are intertwined. And so when I was in my twenties, in that era, during that period of life, I had significantly elevated blood pressure that I only kind of later unpacked. And I had high blood pressure, and I also went to a doctor and they told me I had some early signs of kidney-related problems, which were related to high blood pressure. So you think about those things that I was experiencing — and now I’m much older and those problems have gone away. But I think what was happening was that I was internalizing that stress, and it was showing up in that way. So I think there’s a cost to what I did. But looking back, I think I also still did the best thing that I could in those situations. Joshua Dolezal: Yeah. You’re making me wonder — and I’ve talked about this with other guests too — whether writing is an underreported way of releasing some of your experiences as a doctor. And this is my pet peeve: that always gets framed as a kind of catharsis — you know, you just sort of let it all out. But I think the real healing that writing offers is that you get to reframe things, you get to make sense of things, you get to shape them meaningfully. So what I love about Black Man in a White Coat is you’re not just telling these stories — you’re capturing a moment when you’re immersed in the confusion and the anger, and that’s your voice of innocence sort of in the moment. But then you come back with the voice of experience and layer over some insight. And in that case, you said you had sort of pegged this guy Chester, the white supremacist, as less than you. You know, you’d sort of absorbed all these attitudes about “white trash,” you know, Confederate flag. Trailer parks, you know. Damon Tweedy: Yeah, exactly. Yeah, yeah. Joshua Dolezal: So when you’re writing about something and you’re releasing the stressful part of it, but also layering over a kind of insight about yourself that you’ve gleaned — to me, that’s where the real power of writing comes out. Damon Tweedy: No, I agree. And I think also in both those stories, it also shows, you know, because not only did I make change, but they were able to make change, these patients, right? So I think it also makes us think about — it can also address a sense of hopelessness that people can’t ever, you know, change or improve or be better than where they are. And I think those stories also can shed light on that, right, as well. You know, so much of our world is framed by — someone always says, you don’t know what you don’t know. And you think about this — this may be a broader topic — but you think about how Black people have often been framed, right? And you think about the ways by media, by different stories and things of that sort, and how we all kind of ingest that, Black or white, or otherwise. And there’s a certain poison to that. So what my book hoped to do is — how do we continue to challenge that? How do we continue to help people get to, you know, see the better side of themselves? Because so much of this, the default can be the negative. And so that was one of the other things that I thought these stories also helped with. Not only for me, but also showing how other people beyond me can grow. So it wasn’t just about my own growth. It was about how others can grow as well. Joshua Dolezal: Absolutely. I want to shift to Facing the Unseen, your second book, which begins with a surprising premise — that you had all these other options open to you, had this prestigious law degree, you could have made a bunch of money as a surgeon, but you instead chose psychiatry. And you seem to have this kind of thesis in the book that mental health care gets kind of shunted off to the side, it’s marginalized from general medicine, and that really what should happen for everyone’s sake is a kind of integration of the two. So tell us a little more about how you came to write that book and what was different about it from Black Man in a White Coat. Damon Tweedy: Let me start with what’s similar. So the title of the book is inspired to some degree by a quote from James Baldwin from back in the ‘60s — an essay in the New York Times where he says something to the effect of — I always kind of butcher it — but basically he’s talking about the state of the civil rights movement and how we can move forward. And he says something to the effect of, you know, not everything that is faced can be changed, but nothing can be changed until it is faced. You know, the idea that we can’t change the fact that there was segregation, there was slavery, but how do we move forward? We have to take an honest reckoning, an honest look at how they impact us today. And so I think there are a lot of parallels — now he’s talking about race and civil rights, but I think if people look back 40, 50 years from now, they’ll wonder about some of our treatment of mental illness and mental health, and they will see real parallels. Because some of the things that happened then — for instance, you know, back in the ‘40s, ‘50s, there were separate hospitals, right? And Black people were literally denied care. Honestly, one thing I didn’t tell you is that I actually did — there’s a podcast called Unhealed [https://trentcenter.duke.edu/unhealed-podcast] that my colleagues and I did at Duke where we talk about a story from Duke during that time. I should have sent it to you ahead of time. It’s a really interesting story. But it talks about — so that was the past, right? They literally had segregated hospitals, people being denied care. Nowadays, that happens in mental health, where people will come to a hospital, to an emergency department, and if the issue is identified as a mental health problem, they have to be sent somewhere else, right? And often hours and hours away to inferior settings. I think there are real parallels. And so that’s sort of what I say is the similarity. And that’s sort of how it kind of came to me to think about — because the first book is exploring how race puts people as an other. But I think the second book is more about how mental illness and mental health is an othering factor. I started my medical school clinical year. I started in surgery, which was at the main hospital. And you think about surgery, medicine, ER. My second rotation was in family medicine, primary care in a regular setting. My third rotation was in psychiatry. And so for the psych rotation, they put us into a state hospital 30 minutes away from everything else, which is already separate. And when you drive to that hospital, you would pass signs for a federal prison, a juvenile detention facility. And you think about this — think about how you’ve already sort of separated out mental illness as something completely different, even in that geographic and sort of symbolic, metaphorical way. And so that’s sort of your introduction to psychiatry for many people. And I think it already sets it off as a very different sort of thing that you’re engaging with. So that was sort of the frame. And that’s sort of how it all started. And I think that persists through training. But then as you get further through training, you realize how much the two overlap — mental health and physical health are intertwined. But that’s not how you’re taught. You’re taught that they’re totally two different things. And that comes out as harm to patients and doctors, as I talk about in the book. Joshua Dolezal: And there is an aspect to mental illness that’s just scarier than other kinds of disease. You know, if somebody comes in with a broken leg, you’re not dealing with the same kind of behaviors that are — “abnormal” is a kind of loaded term, right? But, you know, it can be frightening. And you kind of face that with one of your friends or acquaintances, the guy you played basketball with. So tell us about Scott and why that was so unnerving for you early in that rotation. Damon Tweedy: So once again, people should know — I went to med school to become a surgeon or a cardiologist. I am very much in that medical model. I actually looked down on psychiatrists, like, why would anyone do that? And so that was my sort of — and a lot of people, that’s how a lot of people sort of came to it. And it got reinforced with the way we were taught in med school. So in my intern year, I’m on the path in general medicine to become a cardiologist. That’s the path I’m on. And so one day we get a call to come to the ER, and there’s a young man who’s acting strange. And they said acting crazy. And so the way that works in medical settings is you have to make sure that you’re not missing something else. So if you’re on a medical team and someone’s acting strange behaviorally, you want to make sure there’s nothing underlying that’s causing it. Like, do they have some kind of infection or some kind of, you know, cancer, something that can explain this behavior? You want to make sure that you’re not missing something medically. And so my goal was to come down there and do that medical evaluation and then send them to psychiatry if everything turned out normal. So I’d done that before. But on this particular day, I go down to the emergency department, and I see the person I’m supposed to evaluate, and I just stop in my tracks because it’s like somebody that I recognize — someone I’d known years earlier. He was an undergraduate student. We’d played pickup basketball and done a lot of, you know, bonding over that. He was a really smart guy. He wanted to become a lawyer, politician, etc. Really bright guy. And so, you know, I’d seen him one way, and now he’s in a state where he’s like basically manic and disheveled, and like — who is this person? And so I think that really speaks to the idea — when we think about mental illness, as you just said earlier, it can be an us-versus-them aspect to it. The “us” is the land of normal people, as we might want to think of ourselves — people who sort of can conduct ourselves in a normal way. The “them” are people at those facilities, like at a state hospital, or homeless people. That’s the “them.” And so we have this sort of separation. And so for me to see someone that I know in one way, as an “us,” now as a “them” — it was like, whoa, what is happening? How can this be? Because when you see someone at a state hospital, by the time you’ve seen them, they’ve already been in that “them” state for so long, you can divorce the idea that that person may not have always been that way, right? Or that there are people in their world that care about them. In that way, it’s easy to sort of separate yourself from all of that. And I think that’s part of what happens in our society to a large degree. And so when I called Scott’s mom, that was really jarring. I didn’t know her before, but just to call her — because what you find is that when people have those issues, a mental health issue, people want it to be anything else because that’s so frightening. It’s so scary. Like, could it be anything else? Could it be cancer? But you want to hold onto something that’s tangible. And that’s what you see. And so that’s what I saw in that experience with Scott. It was really just a totally mind-bending experience for me. Coming from a world where I didn’t think about mental illness as a real thing. It was a mind-bending experience to sort of see that up close. And then having a personal connection made it more complicated because then he’s paranoid that you’re kind of manipulating your connection with him to sort of sell him out to somebody else. Joshua Dolezal: Yes. So that dynamic — can you be a patient’s friend, or does that actually harm the care you give them? — kind of comes up there. Damon Tweedy: Yeah, it was very complicated. Yeah, for sure. Because he’s like, man, you’re part of it. Because, you know, he was paranoid — they brought me in as part of the conspiracy to prove that he was crazy. Yeah, that was sort of his thing. And it was really difficult. And it was a very emotional experience to sort of see that. But it made me think about it in a different way. And as I began to go back onto the medical units, I began to see how pervasive it was. You know, there were people I was seeing all the time who had, quote, medical issues, right? But there was a mental health issue that was either the cause of it or was making it a lot worse. And that’s how I began to really kind of get more interested in this idea of how do the mind and body sort of really connect and interface? Because we had been taught they were two different things. But I was just seeing in practice that it really wasn’t. And so that was sort of really kind of gradually steering me more away from this sort of cardiology world and over time into this other world. Joshua Dolezal: I have an ethics question for you because all doctors who write about their patients have a kind of liability. You know, you have to protect privacy, HIPAA is a concern and so on. So how do you take — so this guy that we’re talking about, his real name must not be Scott, right? And there must have been some other identifying details that you concealed. And we’re seeing how memoirs can lead to lawsuits by people who feel like they’ve had their story co-opted. How do you protect yourself and how do you do right by the patient so that you’re not sort of cashing in on their suffering, as some critics might say? Damon Tweedy: Yeah, no, I mean — several things. One is that, you know, in these stories, I never present myself as — well, at least I don’t think I do — as some sort of heroic person. I really talk about my faults and all my shortcomings. It’s not exhibiting narcissism and like, oh, I’m great and I’m saving it. I’m not immune to screwing things up. So that’s one, you know, and learning along the way. I think the other thing — so I think there’s a sense of humility there that I think is important. I think it’s also important to, you know — these stories aren’t told just to be salacious. These stories are told because it’s really to put a human face on these issues. Because I think a lot of times it’s too abstract. People can’t understand what mental illness is, they can’t understand what racism is. But putting a story — this is what it looks like, and this is how people are affected, and this is what we can do to make this better. Because there’s always the other piece: what’s changed? What’s gotten better? How can we make this story turn into something that’s helpful, that’s actually going to help people? So those are the things that I think are really important for me as I think about story. But in terms of details — no, I’ve never had any situation where someone said, oh, you wrote about me and why did you do that? There’s definitely ways to sort of protect yourself from that, whether it’s, you know, changing names or where somebody’s from or some aspect of their physical appearance — maybe they’re 6’3”, maybe they’re 5’10”. There are all sorts of ways to sort of change that to make it so it’s not like, oh, you’re talking about this particular person, and that kind of thing for sure. Joshua Dolezal: Is that a case-by-case basis with your editors, or do you have a method that you use when you’re protecting someone? Damon Tweedy: I have a method I use, but then there’s also sometimes editors will have additional input. But it’s never been presented as an issue. I mean, and again, I think a lot of times — what is your intent? Are you just trying to tell a salacious story just for shock value? But me, no, I mean, some of these stories are difficult, but the intent is — how do we learn from these things? How do we make things better? And where do we go wrong? I think one of the things in medicine — like you go back to the race topic — you know, I think if we just look at history and say, oh, well, people in the past were bad and we’re better now, I think that’s really dangerous to do. It’s easy to do that, right? Because, you know, we don’t have segregated hospitals and all that. It’s easy to do that, but it’s also very dangerous. I think there were people in that time who thought they were doing the right thing but we underestimate how much the surrounding world influences us. I think there’s things that people are doing now we know that people will look back on and think wow how do we allow these things to happen and how can you be someone who sort of helps speak out against that. Because even in the ‘50s, there were doctors who wanted change, but maybe they didn’t have the place to do it, but they were speaking out. And how can you be the voice that helps that conversation? And so I think it’s a certain humility — recognizing your own shortcomings and your own potential to do bad. Me, all of us — to me, that’s a starting point. Joshua Dolezal: Yeah. And a really good example of that in the book is you experience kind of your own burnout, breakdown. You have to take a break, sort of get some counseling. And that’s kind of a staple in doctor memoirs — to flip the script and become a patient and then see things from the other side. So in this book about the importance of integrating mental health care and general medicine, your own story seems really key. So walk us through that. What led up to this — I think you snapped, you were trying to drain off some fluid and you couldn’t get the procedure right and it kind of blew up, but there had been a lot building up to that. So tell us about that scene, if you would, and then the process that you went through and what it taught you about the importance of everyone seeking care. Damon Tweedy: Yeah, I would say the brief part is this. So doctors are kind of indoctrinated — at least they were when I was in training. You got to be tough, right? You know, especially intern year, there’s no time to be — you know, you got to just do everything. It’s all about the patient. No time for whining. The worst thing you could do is be seen as soft, you know — that sort of mentality. And, you know, I was on board and I was doing well and I was good with my hands. And then there was one night where things just — stress built up and I couldn’t do this one thing. And, you know, rather than think of that as just a difficult moment, I got really upset, in front of a student and then my colleague. And then the next day, I wouldn’t talk to the chief resident because I was worried that, you know, they might have heard about me losing my cool. And the chief resident was like, “No, I think — man, you seem really stressed and I’m concerned about you.” And my defense, my wall went up: no, I’m good. I’m good. I’m good. And he’s like, “No, I’m really, you know, I’m really kind of worried about you.” And I kind of got a little bit defensive. But then I don’t know what happened — something clicked inside of me and I just started crying. And for me, I grew up as a Black guy in a lower-class, middle-class world. That’s not what you do. You got to be tough. Life’s tough. My parents would tell me life’s tough. You got to be tougher. There’s no time for whining. That’s sort of the world I kind of experienced. And so I probably cried like two or three times in my adult life — once in a high school basketball game when I missed a shot at the buzzer, and once when my grandmother died. Other than that, you know, crying was not — that’s not for little kids. And so for me to cry was just a jarring experience. And then I went to an employee health person a few days later before I could go back to work. And walking into that employee health space to see a mental health person, which I’d never done before, was mind-boggling. I realized how vulnerable people could be in a way that I never appreciated. Because here I am going to see this guy who doesn’t know me. He’s going to do some sort of evaluation. He’s going to be able to determine whether I can go back to work or not. And I recognized — you know, because when you’re an intern, life is built, piling on you. You get so many patients, so many calls. You can begin to think that you’re the victim, that you’re the one being punished. And you can lose sight of — man, there’s a patient who is so vulnerable. You know, this may be the worst moment they’ve ever experienced. This may be the scariest thing that ever happens in their entire life. You may have seen this medical condition a hundred times, but this is the first time this person’s ever experienced it. And so I never really fully appreciated that until I was on that other end, in that room with that guy. And things went well. I talked to him for 45 minutes. It was great. And I felt better. And I said, wow, maybe this counseling actually does help people. That was my first thought, because I was still in the medical model at that point. The vulnerability. So now when I talk to — I teach students and residents — I say, when you go into that room to the ER, take a deep breath. You may be so tired, you may be so irritated, whatever may be the case. But this patient — this may be the most vulnerable moment in their life that they will always remember. And so you have to honor that. And so I’ve carried that forward. And I would probably never appreciate it the way that I do if I hadn’t been on the other end as the patient. Joshua Dolezal: Yeah. So a lot of this book is making an argument for change. And some of that, I think you make through these really painful stories. So you had a patient that you call Stephanie, who comes in because she needs help — I think she tried to commit suicide, or it’s a cry for help. But she’s deemed a danger to herself. And she’s not aware that because of her income level or lack of insurance, that means that she’s been escorted by police in handcuffs to the state hospital. And no matter what level of compassionate care you bring, you can’t change that. That’s just the law. So I’m curious — and you’re raising awareness of this in your book, but you have a law degree yourself — if you could rewrite the laws about mental health care in situations like that, what would be some changes you would make? Damon Tweedy: Part of it is that it already has started to be rewritten. And so I think what my story is trying to show is that sometimes you have to kind of bear witness to suffering. There’s a certain moral injury to it. I feel like the natural order of things is that I think sometimes people conflate advances in technology — because we undoubtedly continue to advance with that, and we always will — with a sense of moral advancement. Which I think is just — I think some people think that we’re supposed to just become more morally attuned and better over time because it’s just the natural order of things. But that’s not true. I think it has to be made. You have to make that happen. And a lot of times people have to, unfortunately, suffer, or bad things have to happen, for that change to happen. I think that’s a terrible truth, unfortunately, based on my own experiences in life and others. And so this particular story — so basically the upshot is that you have two different women who both had a similar problem. One has health insurance. She’s white. She gets the kind of care that you’d want to get in that situation. The other woman is a Black woman without health insurance. And what happens to her is — even though she came to the hospital, called 911, was ambulanced to the hospital — the laws at the time were such that any mental health patient who was going from one hospital to another had to be involuntarily hospitalized, no matter whether the patient wanted that or not. And so that meant police. That meant — man, think about this — this is your first time ever crying for help, getting care. And what happens to you is you’re treated like a criminal. Again, it goes back to the idea — how do we see mental health? Do we see it as like a criminal thing, a sin thing, or is it something that’s medical, right? It goes back to that whole central question. If you think about it as a crime, then yeah, handcuffs, police is the way to go. But she had taken a handful of pills because she was dealing with a lot of grief and she had no sort of way to process it. A lot of us might be in that same situation, but why is that a crime? But that’s how the system sort of treated it. And so she was taken in handcuffs to a state hospital. It was a dreadful thing. And so enough of us had seen that happen that we began to say, we got to do better. We got to change this. And so some of that change happened at the hospital level, but some happened at the state level. And so we began to advocate for the change. And so now that wouldn’t necessarily happen today. So nowadays, that same woman would come to the ER, and the laws have changed such that now there’s discretion. You know, I could have evaluated her and said, no, she’s fine, and the ambulance can take her to the next hospital because this is a medical condition. And so that has changed. And so part of my — again, are you telling these stories just to sort of be gratuitously depicting suffering, or are you trying to tell these stories because you’re showing this is what happened and this is what it takes to make change? And so that was the goal of that story. A terrible story, but one that would not happen today, thankfully. Joshua Dolezal: Yeah, and the reader takes the lesson to heart for sure. So a lot of Facing the Unseen is stating the problem, as in Stephanie’s case. But you do talk a little bit about integrated care and you work presently on an integrated team at the Durham VA. So I thought maybe we could end with that, because that’s maybe the kind of change you’re living — being the change that you want to see, to some extent. What does that integrated team look like? And what are some of the barriers to making that more widespread and reducing this binary between mental health care and general medicine? Damon Tweedy: Right. So the traditional model is it’s all separate, right? You go to a medical doctor and they make a referral. You go across town, you go to the basement, you know, somewhere different. And that’s where you get your mental health care. And so the whole premise of integrated care is that, you know, medical is all the same in some ways, right? And so the model is that the mental health providers are situated within the same medical clinic — whether it’s primary care, whether it’s oncology, you name a medical specialty — the mental health doctors are in the same space. So a person comes in for their medical condition, there’s a significant mental health issue connected to it — which we shouldn’t be surprised about. Think about how stressful physical illness is. I mean, it’s like — why are we surprised that they’re connected, that one relates to the other? It’s all connected, right? Why is that such a shocking revelation? It’s not, but in practice it is. And so we’re there physically. And so that reduces wait times, because it increases the likelihood of the person being seen in the first place. Because if you take someone — I’ve had to take off work to get to a medical appointment. And now you’re telling me I got to take off work again to go across town to see someone else. And you’re also saying that I’m just crazy, that this medical problem is all in my head. It just sets up barriers. And so the whole point is that we sort of break down those barriers and meet people where they are. So, yeah, I supervise a team of several social workers, psychologists, other psychiatrists, and some nurses — a multidisciplinary team. And we need to meet people where they are. And there are a lot of great stories I talk about in the book — I don’t have enough time to go into them — but how this integrated care model can help save lives. And it helps the doctors on both ends as well. The other thing I think is really important for me moving forward is also how do you train the next generation to have a better perspective on these issues? I told you my training was very separate. So I teach a course at Duke where the whole purpose is to teach doctors who are not going to be psychiatrists to really appreciate mental health illness in a different way. Maybe this one story will really illustrate it. So several years ago, I had a student who was in this class. I took these students to something called a clubhouse. And clubhouses are places where people with severe mental illness are treated in a non-medical way. It’s about how do you build community? How do you learn to eat better? How do you get job skills training? It’s very non-medical, but it’s very important. And so in this space, he saw a young woman who he had seen months earlier in an acute hospital setting, where she was acutely ill, paranoid, getting injections and medicines and that sort of thing. He saw her in this space several months later, and she was like a different person. She was doing well. She was going back to work. She was going to school. And he told me — as others have told me — he said, “I didn’t know that people with schizophrenia could actually ever get better. I thought they were always that way.” And I think that’s how a lot of people feel. And so for him to be able to see — so now he can see a label in a chart and not only have that image of the hospital person, but he can also have the image of this person who is doing well. And I think that does so much, because a lot of times in the medical system, you get a label on a chart and you base it on what you’ve experienced. And if all you ever see is the worst of a particular thing versus the whole spectrum, it conditions you to sort of take shortcuts and maybe not give the patient the care they deserve. And so he wrote me years later — he’s an oncologist now — saying how important that experience was for him to be able to see both sides of a particular illness. And so that’s what the course really seeks to do. Joshua Dolezal: Thanks so much. That’s, I think, a great note to end on. And I can’t wait to hear more in your next book. I know writers are superstitious, and maybe you don’t want to talk about what you’re working on, so I won’t push you on that. But I so appreciate your insights and your time today. Thanks for joining me. Damon Tweedy: Yeah, and I thank everyone who joined and listened for all this. I know I can ramble at times, but, you know, if you haven’t checked out my books, there’s certainly more in them. And also that podcast I told you about — that’s something we didn’t discuss at all. I think there’s a lot of storytelling in that. That’s a whole different form of writing. Maybe that’s something we can talk about another time. But I think that’s really a story worth being told as well. How does the past connect to where we are today and how do we learn from that to move forward to make things better? Joshua Dolezal: Thanks so much, Dr. Tweedy. That’s the thing not named for today. Next time, I’ll speak with Kimberly Warner about her book, Unfixed, from the patient’s side. And we’ll dig into what illness narratives are all about. So until then, take care. Damon Tweedy: Thanks so much. Thanks for supporting The Recovering Academic [https://joshuadolezal.substack.com/]. Your paid membership makes this podcast possible. If you’re working on a memoir or trade book, my personalized coaching and editing can help you craft your story. More episodes of The Things Not Named ⬇️ This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit joshuadolezal.substack.com/subscribe [https://joshuadolezal.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]

The Things Not Named — With Istiaq Mian

Thank you Natalie Lago [https://substack.com/profile/38303643-natalie-lago], Michelle Ray [https://substack.com/profile/329206267-michelle-ray], and many others for tuning into my live video with Istiaq Mian, MD [https://substack.com/profile/142424816-istiaq-mian-md] yesterday. Istiaq Mian Bio: Dr. Istiaq Mian is a hospitalist (an internal medicine physician who works exclusively in the hospital) in Madison, Wisconsin. His Substack, The Substaq of Istiaq, explores narrative medicine through memoir and essays about what it means to care for people at the most vulnerable moments of their lives. His essays have also appeared in the New York Times. Before medical school, Istiaq spent a year as an AmeriCorps volunteer at Joseph’s House, a hospice in Washington D.C. for homeless men and women dying of HIV/AIDS. That experience shaped everything that came after, and it’s the subject of a memoir he’s been writing for years. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit joshuadolezal.substack.com/subscribe [https://joshuadolezal.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]

The Things Not Named — With Holly Starley

Welcome back to The Things Not Named. I’m Joshua Doležal. This year I’ve been asking writers how they know high-quality writing when they see it and how their own sensibilities have been forged. My guest today is Holly Starley. Holly is the author of “Holly Starley’s Rolling Desk [https://hollystarley.substack.com/],” which she writes from her DIY van, AKA Vivian. She’s got solar panels on the roof, steadily changing views out the window, and community wherever she lands.  But before Holly was roaming the countryside she was an award-winning journalist in West Virginia and the managing editor of a cycling magazine. She’s founded a radio station, taught courses in person and online, and rebuilt a van with her own two hands.  Holly has also been a freelance editor for twenty years. When she’s not chronicling her van life, Holly works one-on-one with authors as a “self-editing coach.” She is a co-founder of the Caravan Writers Collective [https://caravanwriterscollective.substack.com/about], where you can find on-demand courses, write-ins, and many other resources for your writing practice.   This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit joshuadolezal.substack.com/subscribe [https://joshuadolezal.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_2]