The Things Not Named

“The fact that we don't trust the word of a physician with mental illness the same way we do one with a chronic physical health condition speaks volumes about embedded stigma.”

— Dr. Devika Bhushan

Today, on “The Things Not Named,” I speak with Dr. Devika Bhushan, former Acting Surgeon General of California, pediatrician, and author on a mission to drive greater health innovation and equity. You can subscribe to her Substack at Spread the Light with Dr. Devika B.

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. Willa Cather said that the presence of the thing not named gives high quality to literature. This year, I’m applying that idea to medicine, asking how we might be more attentive to what goes unsaid in the clinic and popular culture and in the experience of illness from the patient’s side.

My guest today is Dr. Devika Bhushan. Dr. Bhushan is a pediatrician, public health leader, and author who served as California’s acting surgeon general in 2022 after three years as the office’s inaugural chief health officer. In that role, she advised the governor on public health and helped build the ACEs Aware initiative, which focuses on healing from childhood trauma.

She now teaches as adjunct faculty at Stanford, serves on the national board of the National Alliance on Mental Illness (NAMI), and advises organizations working at the intersection of mental health and innovation. She’s also writing a children’s book series on stress and resilience with Dr. Bruce Perry. Dr. Bhushan trained at Harvard Medical School and Johns Hopkins and has spoken publicly about her own experience of bipolar disorder, work that has made her an award-winning mental health advocate. She lives in the Bay Area with her husband and child.

Welcome, Dr. Bhushan. So nice to talk to you today.

Devika Bhushan:

Thanks so much for having me, Josh. It’s really good to be here.

Joshua Dolezal:

So you’re in the Bay Area, and you were telling me it’s foggy there. What do you like about San Francisco? Because I know you’re from the East Coast originally.

Devika Bhushan:

Yeah. I spent a lot of years on the East Coast and actually grew up all over the world, so India and the Philippines mostly.

What drew us here to the Bay Area is that both my husband and I have had really good fortune, in a way, because a lot of our friends from different parts of our lives have ended up in and around the Bay for different reasons. So from a community perspective, it felt like the best place for us to land, and we came here almost a decade ago now.

It’s also just very rich with cultural experiences, nature, a lot of incredible communities and neighborhoods. So it’s been a really nice place for us to land.

Joshua Dolezal:

I was an academic for 16 years, 20 years counting grad school, and one of the things professors say is they can’t pick where they live. So it seems like that’s one of the benefits of medicine, that you can make that choice to move closer to your friends, your people. Is that fairly consistent, or do doctors also get boxed into certain places?

Devika Bhushan:

I would say that in the early phases of training, where you go to medical school, where you go to graduate school, and where you go to residency are largely outside your own control. You can apply to the places that you’d be willing to go, but especially for residency, you are given one option through this arcane system known as the Match, where each applicant and each program are optimally matched by an algorithm, and you end up with a letter that says where you’re going to be living for three, six, seven, eight years.

So in the early phases of my career, no, there wasn’t very much choice. But once there was, this is where we came to be. And you’re in Pennsylvania, right?

Joshua Dolezal:

Yeah, Central PA. I’m from Montana originally and did my grad work at Nebraska, and I think my whole adult life I’ve been trying to get back out West. Academic life is just different in that regard.

Devika Bhushan:

And you bill yourself as a recovering academic, right?

Joshua Dolezal:

I do. I left higher ed in 2021, so I built a coaching practice and started this Substack in 2022. So four years strong, I guess, fifth year total on Substack, but it’s definitely a second chapter for me.

Devika Bhushan:

Nice.

Joshua Dolezal:

Thanks for asking. I want to get into your mental health work shortly, but first, can we go back to your desire to become a doctor? Because for some people, that’s a childhood dream. I’m wondering when that started for you. Did you always know you wanted to go into medicine, or is that something that happened later for you?

Devika Bhushan:

I think through grade school, middle school, and high school, I always really enjoyed learning about how things work, so all of the sciences really called to me. Once I started to take biology and psychology, I was really hooked, because how we do what we do in the world, how we think about ourselves and about the people around us, and how the cellular and molecular processes in our bodies and brains work to either set us up for risk or resilience were really fascinating topics for me.

In undergrad I was a neuroscience major, and my undergrad thesis was about how women who were majoring in the STEM fields were either differentially susceptible to or resilient to something called stereotype threat.

You may know what that is, and many of our viewers and listeners may too, but for those who haven’t heard the term before, it’s essentially the concept that when you belong to a group about which there’s some kind of negative stereotype in a specific domain, that identity can be activated for you as you’re doing something within that domain.

For example, you’re a woman taking a standardized math test, and you’re asked to check off your sex at the beginning of the experience. That will actually activate implicitly all of the negative stereotypes that abound about women’s abilities in math, and women will underperform relative to men when their sex or gender identity has been activated before the task.

However, if you don’t ask that question, women persist as individuals rather than as members of their group, and you don’t see a difference in scores. I was really interested in this concept because we know that there is a leaky pipeline effect, right? At every stage, whether undergrad, graduate school, medical school, or different levels of professorship, women are falling out of the pipeline at disproportionate rates, and this is true across all kinds of underrepresented groups.

But I was really interested in which women are specifically susceptible to stereotype threat, so we designed a paradigm to study that. That’s a long way of saying that what called me to medicine was a deep interest in understanding how the brain works and how our social context influences our health and health outcomes, as well as our achievement and opportunities.

Joshua Dolezal:

So you were a researcher first and then a doctor after that?

Devika Bhushan:

I would say so, yeah. I’ve always had a research bent to my career.

Joshua Dolezal:

Part of your journey has included public advocacy for mental health, and this came after or alongside your diagnosis with bipolar disorder. Now, diagnosis is tricky, because sometimes it can be a label or a box, and it can be wrong. A lot of friends of mine, people I’ve had on the show even, have talked about how they were misdiagnosed for years before they got the autism diagnosis or the one that fits, and then that’s a game changer. So what was that like for you when you were first diagnosed with bipolar disorder? Was it liberating? Was it limiting? How did you respond to it?

Devika Bhushan:

You’re absolutely right. In the mental health field, going from having symptoms of any kind to getting the right diagnosis and then the right treatment plan often spans decades. In my case, I was relatively lucky: my diagnosis and the start of the right kind of treatment for bipolar disorder took only about three and a half years.

I was a medical student at the time. My experience of mental illness only started in my 22nd or 23rd year, and before that I’d had a relatively unblemished early life, at least from a mental health perspective. But the summer after my first year of medical school, going into my second year, I had a very difficult experience. I was living in a remote village, setting up a program from scratch with very little outside contact or support from anybody on the ground or outside of it.

It was a remote village, no running water, very little electricity and connectivity, so even being able to send a quick email to somebody back home was a challenge. That, coupled with all of the pressure I was putting on myself to make this program run a very certain way, and working in Spanish, which is my third language, meant there were a lot of contextual factors that made that summer a breaking point.

Through the eight or nine weeks I was there, I found it increasingly difficult to fall asleep and stay asleep, just very creeping mental health symptoms, if you will. By the end of that summer, I was not feeling like myself at all. I had started having symptoms of my first episode of depression, where I could not come up with the right words to say in response when somebody asked me things like “How was your summer? How are you doing?” when I got back to school. It was the first time my now husband, then boyfriend, and I had moved in together, and it was supposed to be this very warm, cozy homecoming. But I didn’t feel like myself. I felt completely out of sorts and emotionally numb, and I couldn’t feel the things I knew I was supposed to be feeling in various aspects of my life.

But the hardest part came when I was not able to process information cognitively in school for the very first time in my life, and that really scared me. I would be sitting up trying to make sense of the words on the page, the facts, the mechanisms we were learning. I remember we were learning about the autonomic nervous system, the parasympathetic and sympathetic nervous systems, which govern so much of our physiology moment to moment, and I knew it was really important. I just could not get it into my brain, and it was my turn to present that information to the class the next day. I remember the sheer panic of “What is happening? Why can’t I make heads or tails of this?” I’d never struggled in school before that point.

Joshua Dolezal:

Can I ask? For some people, when they get a diagnosis like this, it’s like, “Oh, now everything makes sense.” They look back to childhood memories where they felt out of place, or didn’t know how to respond, or always knew that something was not quite right, but they were told it was up to them to adapt, that they were the problem, or that they needed to fix something or try harder. So a diagnosis can be liberating in that way. But it sounds like you had never carried that with you. It was this particular breaking point, as you described it, when a bunch of things happened at once. A new thing for you at that point. That’s fair to say?

Devika Bhushan:

Yeah, it was a new thing for me. Looking back at my childhood, I was always a very shy kid, which was exacerbated a lot by the fact that I moved around three different countries by the time I was 10. I was in my seventh school by fifth grade, so there was a lot of change. Outside of being really shy and unsure of who I was at my core because of all these contextual factors shifting around me so quickly and so frequently, I really don’t think, as I look back, that there were frank mental illness episodes or even early symptoms.

But coming back to that episode of depression, what ended up happening was that within a couple of weeks of being back at school at Harvard, I went to seek help. I was supported in that by my family, who said, “This is not you. What you’re experiencing sounds like something really serious, and we should sort it out.”

I was diagnosed with fairly severe depression and started on an antidepressant, an SSRI. For folks who know about the bipolar spectrum, you may know that SSRIs are fairly activating medications, and in people who have underlying bipolar disorder they can actually unmask experiences of hypomania; a mixed episode, where you have agitation, irritability, and anxiety, i.e. hypomania, overlaid with depression; or frank mania.

So in my case, I was on a cocktail with an SSRI backbone for about three years, and the whole time I was a little bit revved up. I was having what we would call in retrospect mixed symptoms, where I was hypomanic on top of depression.

When that happens, it can be really hard to understand that what you’re dealing with is a hypomanic picture. Often it just looks like anxiety and irritability, right? In my case, I didn’t have a family history of bipolar illness at the time, and they looked at me and said, “This is depression and anxiety,” two fairly common, straightforward experiences that people manage fairly well, right? But for me, the medications, the treatment plan, and all of the demands of medical school together meant I just wasn’t in a well place for at least those three years. My meds kept changing throughout that whole time, and I was finally on three different activating medications and had a frank manic episode, where both I and my treatment team finally understood that this was bipolar illness. That really saved me. I was only manic for about 36 hours, and unlike some people who experience mania, mine was, I don’t want to say mild, but it was something where I was still in touch with some rational part of myself that recognized that what was going on was mania.

When I got the diagnosis of bipolar disorder, I felt a lot of conflicting emotions, to answer your question. One part of me was deeply relieved and vindicated, because I finally had a name for this really terrible set of experiences I had been walking through. Frankly, it felt to me at times that my treatment team may have been frustrated by my lack of progress, right? If it was anxiety and depression, we’d been treating it as such for almost three years, and I’d failed to get better. At least that was my internal voice about it. And finally it was like, okay, there’s something different going on with my brain that we hadn’t been understanding or addressing, and now we can finally have a way forward.

Simultaneously, there was self-stigma, internalized shame, and self-doubt about who I would be with this disorder, whether I would be able to be successful as a person, as a family member, as a long-term partner, as a professional. The reason for those fears is that we have so few examples of people with serious mental illness who are openly in recovery.

We see many more ready examples, both in culture and in real life, of people who are at their most ill with bipolar illness or schizophrenia or schizoaffective disorder. There are a lot of negative stereotypes that we as a society heap onto people who have these illnesses. When you grow up in this society, you already have those immediate associations at the ready, and then you apply them to yourself when you get a diagnosis like this, and you think, “I don’t know what’s going to happen in my life. I don’t know what’s going to be possible for me.” So there was a lot.

Joshua Dolezal:

Did you worry, if I can ask, about your existing relationship, that it would change your partner’s view of you? Some people, if they weren’t in a relationship, would think this would be something they would have to carry forward, and it would bring uncertainty. Was it something he was able to absorb, or did you feel like that was another one of these “what’s the future look like” kind of things?

Devika Bhushan:

It’s a really good question, and I think that would’ve been a concern of mine had I not been in a relationship at the time, or been in a new relationship. At the point of my diagnosis, my partner and I had been together almost four and a half or five years, and we’d really grown up together in a lot of ways. We met when we were 18. We started dating when we were 20. Now we’re 40. We’ve lived more than half of our lives in communion with each other. So for me, he and my parents were actually a really large source of support as I was coming to terms with the diagnosis. They knew who I really was, both before I was symptomatic and through that early part of the diagnosis and the restabilization on mood stabilizers, which are the standard of care for bipolar illness.

My husband did something really powerful at that phase of our journey. You mentioned I’m on the national board for NAMI, the National Alliance on Mental Illness. NAMI offers support through mental illness journeys, both to the people who are walking through them and, crucially, to their family members.

So my husband took a local class with our local NAMI group, and he heard from other family members: How do you support a loved one through an experience like this? What do you say and do that’s really helpful? And what do you not say and not do that can be harmful or unhelpful in ways you might not know?

I think that was a really powerful experience for him and for me, to have a playbook and a way to access the recovery journey not on our own.

Joshua Dolezal:

That’s great. So that’s something you’re trying to contribute more through your advocacy and make available to others.

I think you’ve answered one of the questions I wanted to ask you. As an advocate, you celebrate what we call mental illness Coming Out Days. Recently we’ve been restacking and sharing the anniversary of Simone Biles’s Coming Out Day. It’s not really a question. It’s clearly a way of breaking stigma, right? You’d be showing solidarity with others who are telling their stories without shame, without stigma, and normalizing that for other people.

So I’m curious. When you’re doing that, and when you learn how to live with your own mental health, there is a kind of Western medical training that teaches you to be superhuman. You have to be capable of these completely unreasonable work shifts. You go through a kind of hazing that’s like a boot camp. It’s the opposite of a shamanic tradition, where a shaman is broken and brought near the threshold of death, and that’s the qualification or credential for being a healer. In the Western tradition, you try to make yourself unbreakable. In the Patch Adams film, the dean of medical education says, basically, “We’re here to train the humanity out of you.” So was there a conflict for you between learning how to live with bipolar disorder and learning how to think like the doctor you’ve been trained to be? Do you have to unlearn any of that?

Devika Bhushan:

It’s a really good question, and there are many layers to this. First, I will say that there is a deeply held stigma and culture of perfectionism in medicine that makes it difficult for anybody to own any kind of imperfect experience. I say that because in the first few years of my career, especially when I was in training, I kept this part of myself tightly hidden.

The facts support the experiences I had in training. There is this fear of breaking rank and crossing over from that us-versus-them relationship with patients. There are ways in which people are punished and penalized for doing that, or for having a mental health condition.

We have to be licensed state by state in the health workforce, and most states used to ask very intrusive and stigmatizing questions about mental illness, as opposed to physical health. That’s starting to improve through the work of an organization called the Dr. Lorna Breen Heroes’ Foundation. But they would require doctors with mental illness to jump through exceedingly difficult hoops to get our licenses. For example, when I applied for my California state license, I was asked to submit a list of every single provider I had seen to date.

Joshua Dolezal:

Wow.

Devika Bhushan:

On the therapy side, on the psychiatry side, and so on. And then I had to submit letters from every single provider I had ever seen in my adult life.

Joshua Dolezal:

So this wasn’t just a mindset thing. It was an actual credentialing obstacle.

Devika Bhushan:

It was to get my medical license in the state of California. The state has since revamped its question structure to have parity between mental health and physical health. Uncontrolled diabetes or uncontrolled arthritis also lead to cognitive and other changes that influence how you can perform your job. But the fact that we don’t trust the word of a physician with mental illness the same way we do one with a chronic physical health condition speaks volumes about that embedded stigma.

But to come back to your question of what it actually looks like to break that stigma and break that fourth wall: I didn’t know anybody in my personal life who was living in recovery with bipolar disorder. I knew of two people. One was Kurt Vonnegut’s son, Mark Vonnegut, who is a pediatrician in the greater Massachusetts area and has written a memoir about his experiences. The other was Kay Jamison, a therapist with a great research base who has also been public about her own experiences.

I knew of them. They were my glimmers of hope as I was walking through this. But in medicine, up to one in three students has depressive symptoms. Of everybody who is symptomatic, only one in six seeks formal help, because they’re afraid of what’s going to happen at subsequent junctures of their career ladder and what’s going to be allowed to happen.

So there’s a great need for physicians, especially in early to mid-career phases, to build networks of peer support and to feel comfortable, to the extent that we have that privilege, sharing our experiences, not necessarily publicly, but in our communities and circles of influence. We know that peer support is the one piece that starts to unravel self-stigma, public stigma, and also the institutionalized or embedded stigma that we see a lot of in medicine. So that was part of my impetus to share my story.

Joshua Dolezal:

Well, it’s all fascinating. So you’re not advocating now as much for adults living with mental illness or adults seeking these resources. Your work as acting surgeon general was focused on kids, and you’re a pediatrician, so you’re thinking more about kids.

Devika Bhushan:

Actually, I would amend that. I’m thinking about mental health, health, and resilience through the life course. Our work at the state level setting up ACEs Aware applied to everyone from prenatal through adults up to the age of 64.

Joshua Dolezal:

Okay. Can we pivot to your work with kids? Because that’s been a really important part of your career. With your work in California as acting surgeon general, two of the phrases you used to describe that work were adverse childhood experiences and toxic stress. These are two things that typically wouldn’t be named with those phrases in clinical settings.

So I’m curious how you distinguish between what previous generations might have just called hardship and adverse childhood experiences. And do you have a position in the debate between owning and processing feelings, what some might see as gentle parenting and safetyism, and the Jonathan Haidt idea that it’s good for kids to experience hardship, and that overcoming obstacles is one of the sources of building resilience? Do you have a position on that spectrum or in that conversation?

Devika Bhushan:

Yes, 1,000 percent. I’ll start by grounding us in a couple of the terms we just used. Adverse childhood experiences, often referred to as ACEs, is a term first used in the 1990s in a very famous study, since replicated a number of times with different populations, which showed that ten specific childhood experiences before the age of 18 were associated in a dose-response way, meaning the more you have, the greater the impact, with what is now 60-plus different health conditions in childhood as well as adulthood.

So what are these experiences? ACEs refers to experiences that really destabilize your sense of security and attachment: child abuse, neglect, growing up in a household where somebody was truly struggling, for example with untreated mental illness or substance use disorder, a key family member being in jail or prison for a number of years, or a separation or divorce that was traumatic.

Obviously, there’s a whole spectrum in terms of the impact and severity of experiences like these. But in general, at the population level, folks were finding this dose-response relationship between the number of ACEs and the number of health outcomes that came on earlier than typical, more severely than typical, or both.

And those health impacts were all kinds of things: behavioral and mental health concerns, of course, but also early-onset cancer, diabetes, heart disease, and so on. The key understanding over the subsequent 20 years was that adverse childhood experiences reset our stress biology. That influences all kinds of biological cascades: our hormonal systems, our immune system, our inflammatory cascade, our epigenetics, and even genetics. Adverse childhood experiences have been known to affect telomeres, which are the caps on the ends of chromosomes that protect them.

Joshua Dolezal:

So this is part of what becomes inherited trauma later, right?

Devika Bhushan:

Correct. Yes, absolutely. ACEs are associated not just with health conditions that are harder to treat than typical, but also with early mortality. I say all that to say that this is all very real and very serious, and we know that ACEs are not destiny.

The key motivation for the ACEs Aware initiative, which we put into place in California in 2020, just before the pandemic hit, was that you can re-regulate somebody’s stress biology in key ways that help protect them against the risk they have for these health conditions. Or, once those health conditions are in place, you can re-regulate stress biology to decrease their severity.

These are somewhat simple things, but the work was really systematizing the way healthcare providers were both assessing for the risk of what we call toxic stress, which is this dysregulated stress biology, and then also addressing it. So things like anti-inflammatory nutrition, exercise, boosting your relational health, meaning the important relationships in your life or establishing new ones, spending time in nature, and mindfulness practices. And making a program where each person or each family can choose for themselves the stress-buffering experiences that build on strengths they already have, or things they’re already doing that they could increase the dose of.

So we made stress reduction and regulation a scientifically backed, new, and crucial aspect of treatment planning with patients.

Joshua Dolezal:

Well, I asked the question in a misleading way, then, because what you’re describing are very extreme circumstances.

Devika Bhushan:

Oh, yeah.

Joshua Dolezal:

So it’s quite removed from the garden-variety hardship that your kids might experience.

Devika Bhushan:

Yes. And to come back to your question, I do believe that resilience is built through walking through challenges in a supported way. What’s different about ACEs is that your core sense of self, your attachment, and your sense of safety and security, that if I fall, somebody’s going to be here to help me move forward, is totally disrupted. So it’s a very different scenario.

Say you have a three-year-old, and you let them struggle for a little while putting on a shirt or putting on pants and figuring it out, while a parent is potentially available if they literally get stuck and can’t get their head through. That’s a very different situation, right? And that is what I advocate for. You should let your kids struggle through the things that are developmentally hard for them at that phase, because getting to the other side with your support builds the sense of “I can do hard things. I can rise to the challenge. I have it within me to do things I didn’t even know I could do.” Those kinds of experiences build confidence and a lasting sense of resilience to subsequent stressors. But that’s a very different bucket of things.

Joshua Dolezal:

Well, partly why I was asking is that our culture is so saturated with the word trauma, and some of the language you’re using can be a bigger umbrella that’s not describing extreme situations like the ones the research is actually designed to address.

So in your practice, there are two parts to this question. When you’re listening to a child’s story about their health or their illness, they’re not always well equipped to tell the story with familiar terminology, or they don’t know the right words for diseases or categories of things. So I assume as a pediatrician it requires a different listening skill set. But also with families, as you’re listening to their children narrate their own illness narrative or health narrative, how do you distinguish between trauma that’s on that scale and trauma that’s a misuse of the term?

Devika Bhushan:

In general, when people are telling their stories, whether in a health context or outside of it, it’s important to take their lead in the ways they’re using words, as long as the diagnostic process isn’t thereby obscured. So if somebody says, “I’m feeling the symptoms of appendicitis coming on,” you might investigate with them exactly what kind of nausea and stomachache and other symptoms they mean. In the end, it may or may not be due to appendicitis. But at the outset, you have to take somebody’s word for their experience.

I think it’s really important for patients to be able to tell stories in their own words, and for physicians and other clinicians to seek to understand that first-person narrative in a way that doesn’t diminish or gaslight that experience.

Joshua Dolezal:

So you start with belief, even as a scientist knowing that there’s some usefulness to doubt or questioning. What I hear you saying is that a first step in listening carefully to a child’s story, or anyone’s story of health or illness, is just believing the story you hear.

Devika Bhushan:

That’s right. And sometimes we don’t have data to understand certain kinds of clinical narratives. Some of that has to do with who’s been studied, and therefore which diagnostic entities we have clearly defined understandings and protocols for, and which ones we don’t.

For example, women were not included in clinical trials until the ‘90s, right? So many of the conditions that uniquely affect women, like heart disease, or that largely or only affect women, we don’t understand well because they haven’t been studied. What happens as a result is that people come in with symptoms of, say, endometriosis, which takes years to correctly diagnose even though it is so common.

And that’s only because of the incompleteness of the medical knowledge base around conditions like this. It’s not just women’s health, but the health of many people with stigmatized identities within medicine that is overlooked and often gaslit.

Joshua Dolezal:

So I’m curious about this children’s book series you’re working on. I’ve got three kids, and I don’t know how many hundreds of hours I’ve spent reading to them over the years, which I love to do. We all went through a divorce about three years ago, and I remember it being useful to have books that were explicitly about that.

Devika Bhushan:

Right.

Joshua Dolezal:

Two homes, and a character who’s navigating the same transition. I know this isn’t out yet, and you’re still working on it with Bruce Perry. Can you tell us a little about him, and then how you’re translating abstract themes like stress and resilience into stories that kids would not just want to read but learn something from?

Devika Bhushan:

Absolutely. The concept for this series came out of the idea that in our era of parenting, Josh, there are so many incredible resources out there: books, courses, coaches. But frankly, they are extremely difficult for the average parent to access, largely because of time, but also because of expense.

If we don’t have, let’s say, the ten hours it would require to walk through a course, or the twenty hours it would require to read one of these amazing parenting books cover to cover, then you end up feeling like you are in this flood. We’re in a very difficult era in which to parent, where we have way less time than in previous eras, and we’ve taken on much more of the work of intensive parenting. But many of us, as you said, have the time and the capacity to spend ten minutes a day reading to a kid.

So the idea was: wouldn’t it be amazing if we could make this experience really fun and interesting, in a fiction world that is engaging first and foremost, but then secondarily embed ideas for parents, caregivers, and educators about how to respond to a tantrum in a way that promotes resilience in the long run and doesn’t make things worse in the short run? And how do you do that in a way that’s fun?

So we have this magical world of dragons. There are six books. The first three are for a preschool audience, and the subsequent three are for about six- to nine-year-olds, so it grows with the family. Each one helps unlock a set of stress and resilience tools for parents and caregivers. I won’t say more than that.

But a word on my co-author. Bruce Perry is an MD-PhD, a neuroscientist and child psychiatrist who has become one of the world’s leading experts on trauma, and specifically childhood trauma. His expertise has been accessed for international relief work and a number of high-profile trauma cases. He’s written a lot of books in this field. A few years ago he wrote a book with Oprah called What Happened to You?, which I think is one of the best lay explanations of what trauma actually looks like in the brain, and what healthy development or resilience looks like at a brain level. I very highly recommend that book for anyone who’s interested. He has never written any children’s books, although he has a number of courses for educators, caregivers, and therapists about how you approach a kid who has been through something really challenging, and how you optimally engage with children of all stripes. That’s some of the work we’ve started to embed into the takeaways of this series.

Joshua Dolezal:

Well, it’s a tricky thing to balance. The Roman poet Horace said that literature should both delight and instruct, and I think the best children’s books do that. The Berenstain Bears teach all kinds of life lessons about money or about bad habits. It’s a character-driven story, it’s enjoyable, it’s funny, but there’s a takeaway that’s valuable, an insight as well. But some of those books can be a little too didactic, in my opinion.

There’s one, What Would Danny Do?, I don’t know if you’ve seen it, that’s like a choose-your-own-adventure. Danny goes through a series of things where his little brother steals his plate at breakfast, and then he’s got a choice: is he going to kick him under the table, or is he going to do the right thing? But I sympathize with Danny, because sometimes you just want to kick your little brother under the table, right? Why does that always have to be the bad choice that leads to this horrible outcome?

That kind of book feels a little heavy-handed at times. Kids obviously know what the correct answer is, but they know life is messier than that. It’s not as tidy as it’s made out to be.

Devika Bhushan:

And there’s a reason why the messaging or lessons mostly sit in a little note at the end of the story, a note to readers and caregivers. We try for the story proper to be really fun and engaging and not feel pedantic or heavy-handed for the folks walking through it, but to give people who are looking for the tools enough of them in a separate place.

Joshua Dolezal:

I’m not judging it, because I haven’t seen it, and it sounds like some of it’s proprietary and you can’t share too much now. But as a parent, what are some of your favorite books? Do you have any models, where if this series hits its target, it’s going to be like this book or that series?

Devika Bhushan:

There are a number of really amazing children’s books in this universe. Some of our favorites are classics like Dr. Seuss. Right now we’re really into The Sleep Book. I have a five-year-old, and every night we have to go through The Sleep Book. If anyone has read that book, you know it’s got a lot of pages, like 75 or 80. At least that’s how it feels going through it. But we love the lyrical, very rich language of the Dr. Seuss universe.

I know there are lots of books with messaging around mental health and health, and I’ve seen a few that are really good. For example, Megan Madison wrote a series of six books that walk kids through different concepts. The one I really like is probably right behind me. Hang on one sec.

Joshua Dolezal:

Our Skin?

Devika Bhushan:

It’s called Yes! No!, and it’s all about consent and boundaries. It’s not a fiction book. It’s a nonfiction book that talks about why consent matters, what it means in different contexts, and how it can be removed even if it’s already been given. So it’s more instructive, at least directly, than our stories aim to be. But I love the way she writes, and I love the way she brings these concepts to a very young audience in ways that are readily understandable. She’s definitely one of my heroes and mentors in the child communication space.

Joshua Dolezal:

This might be a can of worms to open, but are you taking a stance on being totally AI-free? Are you using AI in writing this series? Is that something you’d even want to talk about publicly? I know there’s a stigma with that as well.

Devika Bhushan:

Totally. I don’t judge any authors who use AI in drafting or researching. When I write nonfiction, I do use AI support to identify primary literature, and then I read that primary literature myself and make sure I know what it says and how I would interpret its findings. As someone who’s done research in my career, I find it very important to read that directly and synthesize it myself. But in this series I’m not using AI, because first of all, the writing of it is the part that’s fun. If I were to take that out of the equation, then what am I doing? Why am I doing it?

Joshua Dolezal:

Exactly.

Devika Bhushan:

I adore finding the ideal word in a specific phrase, or figuring out exactly which words will resonate with younger audiences. And I’ve been doing a lot of pilot testing with my son and his friends, so that part is just fun for me. I don’t knock anyone who uses AI for drafting, but I haven’t been using it.

Joshua Dolezal:

Well, you mentioned Dr. Seuss, and I think all of these beloved books are beloved, like most literature, for their distinctive voice. I was celebrating Annie Dillard recently, who passed this last week, and her Pilgrim at Tinker Creek was so influential for me because it was this explosive demonstration of how free voice could be. You could have this fearless lyricism and just lean into that. And Dr. Seuss, of course, does that for kids, with rhymes that are just off-the-charts crazy but still make sense somehow.

AI is a tool that hedges its bets, that aims for the mean, and kids, I think, respond better to things that are novel. That’s how their brains are wired to work. I’m sure we could spend a whole other hour on that. But I’m glad you’re having fun with the writing, because that, to me, is one of the core whys of the practice. If you can’t have fun, then why write to begin with?

Devika Bhushan:

You get into that flow state, and it’s unlike anything else. So if you can’t get to that, then why write, exactly.

Joshua Dolezal:

Well, I can’t wait to see your series when it comes out, so I’ll stay tuned. To learn more about Dr. Bhushan’s writing and speaking, check out devikabhushan.com and Spread the Light with Dr. Devika B.

That’s the thing not named for today. Thanks so much for being with me today, Devika, and see you around Substack.

Devika Bhushan:

Sounds good. Thanks so much for having me here, Josh. I really appreciated our conversation. Thanks for the good questions.

The Recovering Academic 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. It’s free to read, and the members who support it help it stay that way. I also give 5% of what I earn here to local charities.

More episodes of The Things Not Named ⬇️

“Where do you go with the unspeakable? From time immemorial, in moments of communal grief we turn to music, to art.”

Dr. Danielle Ofri, author and founder of Bellevue Literary Review

Today, on "The Things Not Named," I speak with Dr. Danielle Ofri, a primary care internist at Bellevue Hospital, founder of the Bellevue Literary Review, and the author of seven books, including Singular Intimacies, What Patients Say, What Doctors Hear, and When We Do Harm.

Below is an edited transcript of our conversation on Substack Live.

Transcript:

Joshua Doležal:

Welcome back to “The Things Not Named.” I’m Joshua Doležal.

Willa Cather said that the presence of the thing not named gives high quality to literature, and this year I’m applying that idea to medicine, asking how we might be more attentive to what goes unsaid in the clinic, in popular culture, and in the experience of illness from the patient side.

My guest today is Dr. Danielle Ofri. Dr. Ofri is the founder and editor-in-chief of Bellevue Literary Review, the first literary journal to arise from a medical setting, now an award-winning independent nonprofit literary arts organization that’s celebrating its twenty-fifth anniversary this year. So we’ll get into that in a bit.

She’s also a primary care internist at Bellevue Hospital and a clinical professor of medicine at New York University. She’s the author of seven books, all nonfiction. My favorites are Singular Intimacies, about her medical residency, Incidental Findings, which frames patient stories with her own experience as a maternity patient, and Medicine in Translation, about her work with immigrants and their complicated personal and medical histories.

Her essays have been selected for Best American Essays twice and also for Best American Science Writing. Dr. Ofri has won many awards, including a 2023 Guggenheim, the 2022 National Humanism in Medicine Medal from the Gold Foundation, and an Honorary Doctorate of Humane Letters.

As an ever-struggling student of the cello, she’s also hoping to someday complete the ever-uphill slog through all thirty-six movements of the Bach Cello Suites.

So Danielle, welcome, and nice to see you again.

Danielle Ofri:

Thank you. It’s great to be here.

Joshua Doležal:

So did I get that right, all seven of your books are nonfiction?

Danielle Ofri:

That is correct. In fact, I just got in the mail this week the simplified Chinese version of What Patients Say, What Doctors Hear. So it’s always fun to see the new translations. Yes, all nonfiction.

Joshua Doležal:

Very nice. And you just told me that you have a new book coming out, so can you tell us just briefly about that and when to watch for it?

Danielle Ofri:

Yeah. It’s due out in April. It’s called The Body Knows How to Die, and it is about facing our fears of death. And it’s been really an exciting book to write, both talking to my patients, but talking to other people in healthcare and hospice, people who are facing death themselves or have accompanied someone, a child, a parent. And it feels like it’s one of the things that nobody wants to talk about, but of course, we all have to talk about it and how to get past those fears so the body knows how to die.

Joshua Doležal:

So that’s taken mostly from your patients’ stories.

Danielle Ofri:

It’s actually somewhat, but it’s more reported, so following someone through their illness, talking to caregivers. So it’s been writing. It’s a little bit if you think of, you mentioned Singular Intimacies, when I have little narrative, separate stories. It’s been that thing, but going out into the community and talking to someone in India and talking to someone in California, and it’s been really interesting to see what people are struggling with and what prevents them from being able to think about how they might plan their death and help themselves through the death and grief of others.

Joshua Doležal:

Well, I can’t wait to read it. I was struck, getting ready for our call, that it’s been... So Bellevue Literary Review is 25 years old, and I think you and I connected shortly after that had started. I was first aware of your work, I think because of your essay, “Merced,” which was chosen for the 2002 volume edited by Stephen J. Gould. And it seemed like that launched your career. Is that fair to say, that essay?

Danielle Ofri:

It’s hard to say what is a launch, but that certainly was one of the first early recognitions. Yeah, it was quite exciting.

Joshua Doležal:

What was it like to be chosen for the Best American for the first time?

Danielle Ofri:

I guess you don’t expect it. Mostly I was sending out my pieces to literary magazines who have circulations that were smaller than my medical school class. So you don’t think anyone actually reads any of them. So it was quite a surprise. And it also restores the faith. You’re slogging your way home. You’re trying to put these stories together, and then, wow, someone not only read it, but thought it was worthy to be included in an anthology that I’ve always admired. So it was just really both inspiring and encouraging and helped me move on and pull those essays together to a book.

Joshua Doležal:

Well, I’m asking about this partly because we’ll talk about the journal you started, but literary journals have really become increasingly embattled, and that whole scene has changed a lot. So around the time that we met, I was also launching my own writing life and publishing in places like Gettysburg Review and Kenyon Review. I think Merced appeared in the Missouri Review. Is that right?

Danielle Ofri:

Correct. Missouri Review.

Joshua Doležal:

Yeah. So the model was that there’s somebody who’s a curator who edits that, who has this sophisticated taste, and that you satisfy that gatekeeper, and that’s how you prove your legitimacy as a writer. And so you get accepted, and it’s a big accomplishment, and then an agent discovers you, and you’re off and running. I’m wondering how you make sense of that now because that’s not at all how publication works now. Everyone, like, I started the Substack. Everybody’s doing their own thing online. It’s much more like self-publishing has been normalized.

Danielle Ofri:

Right. It’s funny because when you describe that paradigm, I don’t quite think of it as a gatekeeper because as editor of BLR, we now get five thousand submissions a year, more than that. And so we’re reading through them. So I don’t see ourselves as gatekeepers at all. I see ourselves as reaching into this pile and community of writers and trying to find new voices to bring through. I don’t feel like we’re closing the gate to others, but trying to bring new people in, and it’s such an exciting thing to do and to watch writers launch.

We published an early story of Celeste Ng, Abraham Verghese. And in fact, Celeste Ng, when she was interviewed in The New York Times, apparently, and I had not realized this, but had gone into a postpartum depression, and she said, “I didn’t think I could write again.” And then her story in BLR won a Pushcart, and that sort of parted the clouds and helped her keep going. And as a journal that we write about health, illness, and healing, it’s nice to be involved in a writer’s healing process as well.

But I do think of it as an opening of the gate, not a closing of the gate at all. And you’re right. We have our tastes, but that’s why there’s so many literary journals out there of many different tastes. So if it doesn’t fit for our piece, it will find a home elsewhere. So I look at it as a way of widening the lanes. Obviously anyone can self-publish, and many people self-publish wonderful things. I will say that at BLR, one thing we do do is we work very closely with authors on revising pieces. We almost never take something and just plop it in the journal. We work 20, 30 hours, multiple revisions, and many writers have said it was the most intense editing experience they ever had. And so when it finally gets on the page, it’s really hopefully at its best, but we are excited to help people bring a piece even further than it may have gone.

So I do think that certainly many literary magazines will put in that effort, and so what comes out is well-polished. And I certainly have seen self-published things that have typos. You could put anything out there. So it can be a little harder as a reader when you have this tsunami of self-published things, and some things are great, and there’s a lot of things that are medium. But hopefully editors and publishers do do a lot of the work of sifting through things and helping things get really polished, so when you finally read them, they are quite good.

Joshua Doležal:

Well, I maybe misspoke with the term gatekeeper, but what you’re describing is curation at least. So there is a taste that is your filter, how you select things, and then you’re nurturing. And what I’m pushing against is this idea now that if you’re just authentic to yourself, that’s the most important thing, and craft doesn’t matter as much anymore. That’s what I’m seeing in a lot of circles, the conversation has shifted.

Danielle Ofri:

So I disagree entirely. I think craft. I remember when I discovered craft. So I was walking on 2nd Avenue. I took a year and a half off after residency trainings. I did this long MD PhD program, took forever and a day. I took off a year and a half, did locum tenens, traveled around the country, and started writing down the stories of that intense experience.

And then when I came back to get a job at Bellevue, which I knew I wanted to come back, there was an economic crisis, a hiring freeze, and they only could take me on for a sixty percent FTE position. I’d never thought about working anything less than full-time, but I needed a job, so I took it. So on one of my afternoons off, I’m walking on 2nd Avenue. There’s a little yellow plastic box, Gotham Writers Workshop, and I take a pamphlet out, and I check into my first writing class, and that was my first introduction to craft.

I’ve always been a reader, and I think as a reader, you appreciate craft even without the vocabulary to articulate what it is you’re appreciating. But you know that that’s a great sentence or what a great scene, or I can’t wait to turn the page. You’re responding to craft and, of course, talent. But coming from the writer side, for the first time, to see the power of craft, to take a story and make it so much more powerful, which is what we do at BLR. We’re just strong believers in craft, and you can be true to yourself and write a great story.

And so many of the pieces that we turn away at BLR, especially the nonfiction, these are often very moving experiences. But a moving experience is not the same thing as a moving piece of writing, and that is where craft comes in. Now, if you don’t want to do craft and you just want to write for your own personal satisfaction, that’s fine. But if you’d like to get someone to read that page and feel what you’re feeling, craft can really help. So it’s not something that one must do, but you really can take something so much further and get the person on the other end.

A typical thing when someone writes about my experience with illness, they start with day one and work their way through the end of the illness, because that’s how you experience it. But that’s not what’s emotionally powerful, and when you read a great piece of an illness narrative, it’s often not linear at all. And if you take the time to analyze the craft, you can see how the author has shifted things around, all truthful, nothing’s made up in this nonfiction, hopefully. But with that power of craft then gets you as the reader, you are gripped, and then you’re sobbing by the end, and that isn’t accidental. It is a lot of craft and work. So if you’re a writer out there and you’ve never focused on craft, I encourage you to try. It’s like getting extra horsepower in your car, and it can drive your prose and poetry that much further.

Joshua Doležal:

Well, I’m thinking of one of your early essays, and then I want to get to a recent piece in The Lancet here shortly. But this is called M&M, which is short for morbidity and mortality, and it’s a braided narrative, which is another one of these craft techniques, right? Where there are two storylines that are woven throughout, and one of them is the clinical version that you have to report at this conference where medical errors are reported, and there’s an effort to learn from them, but often some shaming involved. So the voice is very constrained. But then there are these long, italicized sections in between that, which is the unspoken story, which is the emotional truth of that experience. So you go back and forth, and you see the tension between them, and that opens up a different meaning than just a chronological report that’s faithful to the literal facts.

Danielle Ofri:

Well, actually, if I can tell you, that actually has three voices, and when I first wrote it, I wrote about what happened, and then I wrote about the conference. But then I also happened to have had my printed copy of what I actually read, so I had my quotes, and I had them in order. And someone said, “Why don’t you tear them up?” And so then I could take one scene, describe what happened, show what’s talking about, and then read the words.

I’ll just give one example. There’s a scene in that piece that we have to intubate a patient. We have to put a breathing tube down his throat, and this guy is fighting. It was a horrific scene. I’m with the surgical consult, and we’re holding this guy down, and pink sputum is flying everywhere. We’re sweating. You feel like you’re attacking him. It was horrific. But then in the presentation, and I have my paper, it says, “The patient was intubated with difficulty,” period. And that’s how we encapsulate that scene.

So you could, in a piece, write about, oh, how we speak about patients, how we talk, but you don’t have to. If you use the craft to just put those two things adjacent, you don’t have to say anything. And if you let the reader pull it out from the way you’ve done it, it’s so much more powerful, but more gratifying for the reader to get it as opposed to be told it.

Joshua Doležal:

Yeah, I love that example. Well, it’s a nice shift into your most recent essay in The Lancet, Why Medicine Needs Literary Magazines. So could you tell us a little about why you needed to write that essay and what you argue there?

Danielle Ofri:

Well, it is BLR’s twenty-fifth anniversary, and this is BLR issue number fifty. Fifty issues coming out, just shocking to believe. And so just sort of thinking back, how did we come to be doing a literary magazine in a medical setting? And so that’s what was the drive to write it.

And so I started the journal with Marty Blaser and a few other people right when I came back after those 18 months traveling. I came back to Bellevue, and I remember I would ask my students, my students were handing in their H&Ps, history and physicals, which are pretty dull to read, and I said, “Just tell me the patient’s story. Ask them what it’s like to have diabetes.” And those essays became the impetus, maybe we should make some journal. And we came up with the idea of making it a public journal, not just an in-house journal. And just creative writing, poetry, fiction, nonfiction about health, illness, and healing, and we got a thousand submissions, like, overnight.

So it was clear that we had touched a nerve, and the idea that there’s so much writing out there about medicine and health, but a lot of it is like the top ten tips for asthma or get your calcium, doesn’t really get to what it feels like to be ill. And because we all have been touched by that, either ourselves or we’ve taken care of an ill child or an aging parent, we’ve all been there. And that vulnerability that illness engenders, it’s like an earthquake for every single person. And we discovered that people need some creative way, some way to grapple with that, not just what the illness is about or the five-year survival rate of your cancer.

And so I wanted to sort of think back of that experience of how and why we got to where we are, because I don’t think that medicine can tell us about the disease, but not much about the experience of being ill. And if you’re the patient, you are ill. You’re not having a disease. You’re sick. You’re feeling sick, and those are such different things, and knowing what the disease is only addresses an important part, no doubt, but only one part of what it feels like as a human being.

Joshua Doležal:

So I think you said something about how pneumonia or fill in the blank, Lyme disease or anything that someone would be diagnosed with, plays out in dozens of different ways across even one city because it intersects with personal life, with the social coordinate system, would say, of disease. So that’s what you get from a story is the context, the human context of not just the symptoms, but all the things that might either impact getting the disease or impact the complications in getting treatment or surviving the psychological—

Danielle Ofri:

And what it means to the person. For some people, getting ill can feel like a complete loss of self. They just, everything, their power is all gone. For some people, they walk away, “Okay, no big deal.” It’s so intriguing why the same pneumonia can be so different for different people. And where do you go with that fear? What do you do when you think about can you still have sex with your partner after they’ve had cancer? We were just looking at a story that dealt exactly with that, and we send out a weekly read from BLR, and that was one of our recent ones.

And as I was reading the story again, I thought it was just brilliant because nobody ever talks about that, but that is what people think when they get home in bed with their partner. “Can I touch them?” And it’s really amazing. You can delve into all of these things that come in, and particularly with poetry, which will tease out just one little strand of the emotional experience and just pull that one out and hold it up to the light to just look at that one thing, that one little bit that we, in a chaos of being sick. There’s so many things. There’s thousands of things going on that we often run roughshod over many of them. But a poem gives you a chance to take a breath and look at one little piece of it and just think about that and let that settle, and sometimes that can give you a little bit of peace in that spot. And it’s hard to get peace when you’re sick.

Joshua Doležal:

Well, and that human dignity and the selfhood part of it is so important to a patient and also to families. How does it improve or does it improve the quality of medical diagnosis or treatment to have a story-based approach to documenting history and physicals? Does that have measurable impacts on medical care itself?

Danielle Ofri:

Abraham Verghese once wrote a piece years ago called What Doctors Can Learn From Novelists, and I loved it because what it did, if you think about the master diagnosticians of yore, the white-coated, bow-tied gentlemen who are the giants that we trained under, but they were fabulous diagnosticians, and part of it is they were so keenly observant, right? Back when you didn’t have a CT at the drop of the hat or an MRI or an echo, you had to be very observant in the way that a good novelist is.

When you read an Ian McEwan description of a scene or a person, you are just getting such a rich, multi-layered... It’s not just, oh, that person was tall and blonde, right? You get such depth, and you get that with those clinicians, and it’s a bit of a skill that we’ve lost. But writing and creativity trains us in the skill of acute observation, and there’s just so many times where that makes a difference. A person walks in, you can’t just check the box, “Oh, I have a cough and a fever.” But there’s so much more, and because many of our patients will have things they don’t necessarily tell you on the first go around.

They may come and say, “I feel lousy,” right? They’re really speaking in metaphor, and it’s your job as a clinician to interpret that metaphor. And feeling lousy, they could have pneumonia, they could have vasculitis, they could be experiencing abuse at home, there could be an eating disorder or a sexual disorder, they could be being trafficked, there could be depression. Many, many different things, and they could have cancer, and all of the treatments of which are so vastly different. If you’re not observant on what is going on, you will miss the diagnosis.

And when I think about medical error, I think a lot about the powers of observation. I wrote a book called When We Do Harm about medical error, and the error that’s a procedure, a surgical procedure or a central line, you can put a checklist in place, and that can pretty much reduce medical error. But diagnostic error, making the wrong diagnosis, you can’t checklist that because it’s how we think. It’s very hard to improve diagnostic error. But one of the ways that we can is listening really attentively, being so observant, trying to put together the story of the many layers underneath, which is what novelists do, and I think we can become better clinicians.

I’m convinced. Are the data there? No. But I’m quite fine, and I think the difference between a good doctor and a great doctor, if you find them, it wasn’t what school they went to or how many antibiotics they can reel off without looking in the book. It’s their ability to really talk with you, to listen to you, and make you feel heard, and to figure out what’s really going on. That’s quite a skill.

Joshua Doležal:

Well, making someone feel heard is different from observing because someone could be very stiff and clinical, be a scrupulous observer, but also be unapproachable or not make someone feel heard or make them feel like it’s a safe place to be honest. And I think I learned from you the phrase “hand on the doorknob moment.” So that’s a moment, as I think you described it once, where you’ve had the medical interview, it’s almost over, the patient’s leaving the room, and their hand’s on the doorknob, and they say something that changes the whole picture. Can you recall a few of those examples?

Danielle Ofri:

That happens all the time. Yeah. A patient, I remember because she had this baseball cap on, and we were talking about hair loss. A young woman, too young for aging hair loss, and all kinds of aches and pains that didn’t connect together. And I examined her, all these spots, and there was nothing really amiss. And so we finished the visit, and she walks out the door, and she’s on the door, and she said, “Doctor, do you think those aches and pains have anything to do with, because those were the spots where my boyfriend shot me with a dart gun?”

I was just stopped dead in my tracks and pulled her back, and I had not thought about domestic violence at all, and that was my big mistake, and my radar was not up. But when someone comes in with all kinds of things that don’t fit together organically, you need to think about these other things, and so maybe I hadn’t made it as safe a place for her to speak about that, but thankfully she did at the very end.

You’re right, they’re not the same skill. We need them all. Listening hard, observing carefully, letting the patient speak, not interrupting a patient, to hear the whole story, because if you interrupt a story, the story doesn’t hold together, and there’s so many parts, I think, to making a good clinician. But I do firmly feel that the creative side can help.

In fact, we’re doing a creativity in medicine workshop with BLR on September twenty-fourth, which will be online, to do just that, and to use poetry, fiction, but also fine art. Here’s another cover of BLR, another artist. And so we’re also using the covers as ways to think about powers of observation. What can we learn? How can we become better clinicians? Or if you’re a patient, how do I navigate a difficult patient session with my doctor or nurse, and are there things from the world of creativity that can help?

Joshua Doležal:

I’m curious if there ever... Sometimes I feel like doctors could benefit from a journalism workshop in interviewing because that is what they’re doing with patients a lot of times, and there are some learnable skills about just letting the silence hang, because someone will fill it if you don’t fill it yourself, so that’s where not interrupting someone comes in. And a higher level skill which I got, I think from This American Life and Radiolab and some of those, is a skilled interviewer will sometimes repeat back an imperfect version of what they’ve heard, playing dumb a little bit, but it’s a nudge to do better, and so someone will usually improve on it, and that’s where you get really good material. So that thing is more about audience awareness, I suppose. I don’t know, are med students trained in that at all?

Danielle Ofri:

We do have some curriculum on medical interviewing. I don’t think we give it as much attention as it needs because in the end, that is the thing that you do the most of is the interview, right? Most everything else is confirmatory, secondary. And so I often think about, when I talk to my students, imagine interviewing a patient who can’t speak, can’t communicate at all. It’s very hard to figure out what’s going on. You can examine, you can do a CT scan, but without the ability to communicate and hear the story, it’s very challenging.

So of course, when you examine a baby, or examine someone who’s comatose, it’s very hard without that, and it makes you realize how much the interview, part of it, the communication, the story, is so critical for making the diagnosis. Whereas if you were to practice medicine, you travel to an under-resourced location or there’s a blackout or the system is down, it’s hard when the system’s down, but you can still talk to the patient. Sorry for the sirens. You can do a lot, but it’s much harder. Practicing medicine in a blackout is much easier than practicing medicine with a comatose patient. You can do much more in a blackout with a patient you can communicate with than a patient you can’t communicate with.

Joshua Doležal:

Well, I might be stating the obvious, but this is why chatbots and algorithms are not good for things like medical interviews, or even the more automated things become in medicine, the less room there is for this.

Danielle Ofri:

Sure. And I did do a piece for the Times about AI, and partly it was I had a patient who’d been a patient of mine for a long time, he was in Singular Intimacies. And maybe half a year ago, I went out to the waiting room. I saw him across the waiting room, and I looked at him, I said, “I’ve got to admit this guy to the hospital.” I knew it, and I couldn’t even figure out why. He wasn’t visibly out of breath, but I just knew something about the way he was looking at me. I knew that he was really sick. And partly it’s from knowing him for this 20 some odd years at this point. I know him so well that when something’s off, I can tell it, even if I can’t even tell you what it is that’s off.

And so I could put in 86-year-old man with diabetes and gout and CHF into the chatbot, and it can give me the amalgam of 86-year-old guys with CHF and gout, but not this one particular 86-year-old guy with CHF and gout who I know, who the granddaughter who he raised was now not talking to him and shutting him out of her life, and that trauma for him that he stopped taking his medications in the end, and that threw him. But there was a whole thing of where the beginning of all of this was, and you can’t do that.

Now, the chatbots are great for other things. Like, here’s a 50,000 lab test results. Am I missing some diagnosis? And that is great because you cannot know it all. And, oh, yeah, did you think about type four RTA? Oh, no, I didn’t. Thank you. Or here’s the 67 medications the patient’s on. Any interactions? Oh, yeah, these two interact. How would I possibly know that? So it’s very handy for that, and I think we shouldn’t throw the baby out with the bathwater. But I don’t think you can substitute entirely. I guess you could, but I don’t think it would be great medicine. I think we’d get many things right. Here’s the blood pressure. We can check those boxes. But why was this man in congestive heart failure? You wouldn’t figure that out with a chatbot, and you wouldn’t be able to fix it because you’d just be like, “Oh, let’s just tweak his medications.” But that’s not the reason that he went to heart failure. So we have chatbots, but I hope there’s always room for human clinicians.

Joshua Doležal:

Well, hopefully. I want to go to Bellevue Literary Review now and its anniversary. So quarter century, big milestone. Can you take us back to the beginning of that? I know that you founded the journal right around the time that 9/11 happened, and you thought it was going to interfere with some of the events that you planned. So you had 9/11, and then the war in Afghanistan, and you were questioning, “Is anybody going to come to our poetry readings? Does this matter? Is this making any difference?” So how did you deal with that, and what was it like?

Danielle Ofri:

Let’s see. So our first issue was September 2001, and we’d been gearing up for a year for this, and we were so excited to go out, and we had planned our first reading. It was going to be the 7th of October of that year. And then, of course, 9/11 happened, and at Bellevue, we went into trauma mode and discharged everyone from the hospital expecting thousands of casualties, which sadly did not transpire.

And it was just, if those of you who are listening who may remember that time, it was an incredible time in the city. I have never experienced anything like that. Just the communal grief, it was just so powerful, and especially at the hospital, because people started quickly putting up posters of the missing all over all the hospitals, and we have three hospitals in a row. And at that time, Bellevue’s under construction for our new building, so we had a block-long, city block-long construction wall, so people just, it was just plastered with pictures, which stayed up for months.

And of course, at that point, after things happened, everyone on those pictures were dead. But all those pictures were people from graduation pictures and weddings. Everyone in the pictures is smiling, and everyone looking at the pictures is weeping. It was so devastating. They had to open a back entrance to the hospital because it was just too traumatic.

And so we had planned this reading. “Is anyone going to come? Who wants to come hear poetry in the middle of this thing?” But we thought, “All right. We’ve already booked the room. We’ve booked the poets to come.” And so we planned it. And then that morning was the invasion of Afghanistan. And so now we’re at war. Nobody’s going to come. And you know what? It was standing room only. It was packed. We had more than a hundred people come to a public hospital, walking past all this sea of faces of people who have died just recently and still came.

And it really just pointed out to us, I think, that that is where people turn in moments of communal grief or any grief. We turn to art, and I think we always have from time immemorial, to music, to art, to all of these things. Where do you go with the unspeakable? Because just like when we talk about the top ten tips for asthma, here’s top ten tips for grief. That’s not going to help you. But being together and being with art in a way that can speak to you is a way to give you that little drip of solace that maybe you can hold onto that strand as you do the hard work of grieving.

And so that’s how things started. And we just kept getting more and more submissions, and it was clear that people want to use the creative arts to grapple with these things. And so for 19 years, we continued doing that. We had two readings, a fall reading, a spring reading, and then COVID hit. And once again, the hospital’s turned upside down. At that point, everything that’s not clinical has got to go. Got to go. And so Bellevue, we had to leave. We were part of NYU. We had to leave NYU.

And I remember thinking, “God, can this not...” I was working in the COVID tent during the crisis, so we’re doing testing, we’re PPE’d up, it’s raining, it’s freezing, it’s quite a time. And meanwhile, I’m trying to, at night, trying to find a place for BLR to live. But nobody wants to take you in in the middle of a global pandemic, so we decided to become our own 501(c)(3) nonprofit in the midst of this crisis. Turned out to be the best thing we ever did.

And in the years since then, which is about five, six years now, we’ve almost quintupled in size. We’ve now expanded because the pandemic, as with everyone, had us try out online events, and now we have many more events, like this Creativity in Medicine workshop. We do writing workshops now. We have a book club. We have a Conversations on Creative Writing in Healthcare series. We’ve done in-person events, live storytelling. We’ve done a dance poetry series, film series, where we give dancers, four dancers take four poems and interpret them, and we create a film and then submit to film festivals. We’ve done studio visits with the artists and the covers. So it’s been just this complete flowering of creativity that being your own organization allows you to do.

And so when we first started, I have an image of sitting in my clinic office with my co-editor trying to weigh different sheets of paper that all feel like they weigh the same in 16 shades of ecru, cream, and linen. Like, what are we doing? We’re a nephrologist and internist trying to pick paper. But we could not have imagined that 25 years later we’d still be here and thriving, and I think it’s because it’s not just a literary magazine. It is a community of people who want to think about how we grapple with illness and use the creative arts to do so, and that is people who read, people who write, people who want to shape their own writing. They want to listen to others. They want to watch things that make sense with that. And it’s such a really inspiring community of people that this feels like why we’re still going strong and so planning for the next 25 years.

Joshua Doležal:

Well, congrats on all that. So many achievements, and definitely surviving the institutional cut, finding your own funding is a huge win and something I think the humanities needs to learn more of, is just a self-preservation technique going forward in the future.

When you were talking about 9/11 as this communal time, I remember I was teaching around that time, and it was that way for some people in America. But also for Muslim Americans, it was not. It was an estranging time. But I don’t know that that was really covered as much then. Now, I’m just thinking about, this is the 2025 Best American Essays, edited by Jia Tolentino, and so many of these are explicitly political and about international events, about Palestine and things. I wonder if it’s possible for a journal to have a truly inclusive space, or if there’s political lanes that we have to occupy. I don’t know how you navigate that. I’m just thinking that 2001 is a very different moment in time from 2026. Is that something that you talk about as an organization?

Danielle Ofri:

One of the things is there are lots of lanes out there, and no journal has to occupy every lane. And I think there are journals for political discourse. We’re not a political journal, and it’s not that I don’t ever want to publish anything that hits current events. But there are places for explicit political conversation that should be rigorous and debated, and that’s why there are many journals.

So we try to focus on things that are universal. But we did an issue called The Body Politic on how the society around us impacts our bodies, and there’s much. And the truth is, all the issues have stories like that because you can’t avoid the outside world. But I lean away from these, not these purity tests, but thou shalt must have this opinion or that opinion. There’s just lots of room for places to debate, and that’s why we have so many, many journals. And thankfully, and I think that people should support those journals. And if you want places to be reading things, places to submit your writing, go subscribe to a few of them, be they literary, political, mainstream media. I think we do need that, and I’m so glad that we have so many different things out there. So that’s my feeling.

Joshua Doležal:

Yeah. Well, I’m struggling with this myself as a writer and thinking about where my voice fits best. But you said something about the universal, and that’s how you and I both came of age as writers, was in a time when a big part of creative nonfiction was you try to tap into this larger human narrative, and ideally it’s bigger than you, and it teaches the reader about their own life as much as about yours. And I don’t know how you feel about this, but it seems to me that we’re in such a fragmented time that the idea of the universal is becoming less tenable. The idea that there’s something that truly cuts across all these differences, whether it’s gender identity or international events. Do you think the universal is possible?

Danielle Ofri:

I do. I really do. Any parent who’s taking care of a sick child, that is universal. And of course there are many variations on that. But rich, poor, war, not war, when your child is sick or on the verge, that is something primal. And I do think that there’s something to be learned, and I believe there’s things to be learned from other experiences.

I mean, in writing, we want the initial, but we want the particular. That’s what makes great writing great is when we have the specific and the particular, and there’s so much to learn from other experiences, and we’re of course always actively seeking out other experiences. I was looking back at one issue. I think we had stories taking place in like eight different countries in one issue, and just by random chance, not by planning that, but that’s where things are coming from, and that’s really exciting.

And I do want to read things that are from different experiences. I do think there is things to learn, but I really do think, in particular, in our little arena of health, illness, and healing, there is a lot that is universal, even as the particulars vary, and those are important and should be respected and honored, and not everything is an equivalent, but it doesn’t have to be equivalent to be important. They’re just realities.

And so often we, the individual people, we can’t change so much of reality, even though we’re born where we’re born, right? We can’t change our genetics or where we got plopped in the Earth, and we can try and do our best with where we are. But I think many people do feel powerless, that there are things that you wish you could change that feel like forces greater than you. And we can’t condemn people for not successfully changing and solving everything in the world. But I do think we can find some aspects are universal, and I think it’s worth going for, even as you respect and appreciate the particular.

Joshua Doležal:

Well, that’s a good segue to your essay, I think this was a year ago now in The Lancet, also an essay called “Defiant Acts of Joy.” And maybe we’ll end with this. This is about your love of the cello, and even though you still struggle with mastery and have had a hard time fitting it in between kids and work and everything else.

Danielle Ofri:

It’s forever. It’s forever.

Joshua Doležal:

I want to get to the defiant part of it, but why does the cello bring you joy, and why is that necessarily a defiant act?

Danielle Ofri:

Well, I got into cello when my daughter was starting violin, and I had asked the teacher, “How do you get a stubborn kid to practice?” Thinking, sticker charts and ice cream. She’s like, “No, seeing a parent practice.” I was like, “Oh, all right. Well, maybe I’ll take a cello lesson. I’ll do the one thing next door.” Anyway, I fell in love. My daughter later quit violin, but I fell in love.

So I ended up writing a lot about it, and there’s many, many reasons why I find it so intoxicating. Part of it is, in medicine, there’s not a lot about beauty in medicine. We don’t think about the aesthetics very much. But in music, you are just always trying for something to sound beautiful. That is the goal. And beauty is so impractical, right? It doesn’t earn a grant. It doesn’t save a patient. It doesn’t earn you money. And that’s part of what makes it so amazing, and the same for literature. The fact that it is just moving and beautiful in and of itself, I find that astounding and pretty radical.

So I’ve been taking lessons, but basically I just play in my living room and that’s it. But a colleague of mine was trying to get me to join this orchestra up at the United Nations where he’s been playing, and I am just too busy. I got three kids, I got a book, I got a journal, I got a clinic. And every few months he tries again. And then so this time he’s like, “But you have to come because they’re doing Beethoven’s Ninth.” I thought, God, talk about a great, great piece, but I’ve never played an orchestra.

And if you know anything about Beethoven’s Ninth, it’s big in every way you define that word. It’s long. There’s a lot of it. Apparently, by that point, Beethoven gave up caring whether or not his musicians could play it or not. He just wrote what he wanted to write. And I just said, “All right, I’m going to try this.” And so he emails me. It’s like 33 pages, like 3,000 measures of music and hard music. And the one thing I learned, when I take lessons on my own, I work on three measures, and the next week we work on four measures. Here you got to learn it all at once, and you do it all on the surface and you keep building it.

I have never worked as hard in my life, Josh. Cramming for the medical boards? Piece of cake compared to cramming Beethoven’s Ninth. I have never worked so hard in my life. But the music was so amazing. I’d play it like, how did I end up in this miracle of being in the middle of this unbelievable thing?

And then we finally did our concert, and it’s a marathon. It’s like 90 minutes of music. It’s truly, you’re exhausted by the end. And we didn’t even know, but as we’re taking our bows, the first bombs are dropping in Iraq, the first US attack in Iraq, which we had no idea. And here this is the United Nations Orchestra. There’s probably 50 countries represented in the musicians and the singers. You have like 150 people on stage. Such this thing of unity, and of course, the message of Ode to Joy is all about the universal, that we can, the universal brotherhood as Beethoven would’ve said, and then we were suddenly at war again, was this shocking thing.

And it made me think there’s something defiant about joy, right? And if you think about autocracies throughout the world, throughout history, one of the things they try to quash is joy. Keeping people scared, fragmented, that is the way, think about Stalin, think about Hitler, think about Mao. These are, the populations were not joyful. They were taking away all the abilities to be together, the abilities to communicate, the abilities to write, and that is a way of controlling the people.

And if you look at some of the rebellions against autocracy, it’s in the sense of trying to show, “No, you can’t take away my joy. I am going to enjoy something here.” And certainly Beethoven was at a miserable point of his life. He was sick, he was close to death. He was heartsick. He was intoxicated, he was deaf. And yet, and yet he wrote the most joyful piece of music he probably ever wrote and maybe has ever been known.

So it felt like at this moment, because I remember thinking while I’m practicing, “Why am I spending all this time learning this piece of music? It doesn’t get me anywhere. Our society’s falling apart. In our current government, I should be fighting at the barricades,” yet I’m doing this. But it also felt defiant that, no, we’re going to get together, all these people, and do something joyful together. So it was a great experience.

Joshua Doležal:

Well, you’ve anticipated one of my questions, which is, as you say, the doom scrolling makes you feel like you ought to be doing more. I think you compare ICE detention now to people being disappeared in Argentina, or Romania. So things that we’ve in America seen play out elsewhere are happening here, and it’s terrifying. It’s abhorrent. And so when you fixate on that and you think, “Well, I have to be out in the trenches fighting, not escaping through art,” some do see it as an escape and as an abnegation of more responsibility.

Danielle Ofri:

Right. But I think there’s a difference. You can put your head in the sand and just put your headphones on and just listen to Bach twenty-four/seven, which I’ve thought about that. When I read the newspaper, I’m like, “Oh my God.” But no. You can do both. You can do both. You go to the rallies and you write your congresspeople and you try to vote out the people who are harming our society, that you have to stay engaged.

And you can stay engaged without doom scrolling. I think doom scrolling is just this ability to sort of assault yourself as opposed to, I will educate myself with a reliable source that has an end, right? Not a forever thing. So try an actual, if I can recommend, newspaper where you can read the news and then you finish and you put it down and you go do something else.

But I think also bringing people together for a sense of community and joy is really important. Again, not like the Titanic, that you’re just playing the music while we’re going down, but you can do both. You can do both. And I think bringing people together and not succumbing to fear, because otherwise you just sit under your covers and shiver all in 24/7 because the world does seem like a miserable place. But I think we can do both. It’s not an abnegation. It’s an abnegation if you do nothing else.

But am I doing one thing this week? Am I writing one letter? Am I making a donation to some organization that I can help with my resources? Am I supporting one person who is struggling with our current situation? And not all at once, but a few small things. Am I not letting myself say, “All right, I can’t read anything. I’m not looking at the news ever again”? Because that’s tempting too, but then that’s abnegating, I think. I think we have to stay engaged, but we could also be joyful and bring art and not let art get co-opted.

Again, if you think about Hitler and Stalin, co-opting art was a big part of the playbook. Very much so. And look at the National Endowment of the Arts, co-opting the arts is part of this pulling back these grants. And I think fighting that and not letting all these arts institutions close down. So if your local arts institution has lost its funding, go out and support it. Go to their concert. Buy their journal.

Joshua Doležal:

Yeah, I’m sorry to interrupt. There was a tradition of samizdat in Czechoslovakia under communist rule, which is a similar defiance.

Danielle Ofri:

And Russia.

Joshua Doležal:

I might read this, if you don’t mind, because it’s right from the essay and I think addresses this. So you write, “Joy can also be defiance. Autocratic regimes strive to make you feel alone, hopeless, and powerless. It’s a time-tested strategy to break the spirit of the public, so it’s no accident that joy has been a subversive element in fighting autocracies during the 20th century in Chile, Czechoslovakia, Estonia, as well as in the American Civil Rights Movement. Joy bolsters hope, a confidence that despite current ambiguities and anguish, possibilities yet remain. It is a willingness to grapple with both what is and what could be, a rebuff to the easy cynicism of those who retire to the sidelines and,” fill in the blank, doom scroll, whatever is paralyzing but not renewing. And so for you, music is defiant because it’s renewing in the face of a time when the impetus is to enervate or terrify or intimidate. Is that accurate?

Danielle Ofri:

Right. Right. Or just close yourself off and bury yourself and say, “This world, I just want to get through my little day.” Which it’s an understandable instinct. It’s exhausting to live in our society, no matter where you are. It’s very tiring to, tiring maybe is the wrong word, but just to hear about things going on, and it’s so many things. Where do I go? Do I try to rescue Head Start? Do I try to donate to the food bank? Where do I go? There’s so many things that you feel powerless.

But if you can pick three things that you could help out, and that’s all you have to do, and then you have done something. Because if every single person picks two or three things, that’s a lot of things. And I hope for your own sake that one of those things does bring joy. Because otherwise, how do you sustain yourself? If you spend all your time doing all the hard work of organizing and then you yourself are so depleted that then you can’t function at some point, that’s not helping the cause.

And I think about the civil rights movement, how often were people singing? And if you think back of it, those were joyful songs. They were defiant songs, but there was joy and beauty. And it’s really hard to come up against that if you are the police and the people are just singing at you. And you think about the creativity, or in China when people are in Tiananmen Square, Hong Kong protests with the blank white signs. There were something that was creative and thoughtful, or the umbrellas, ways of bringing people together that’s a little bit slightly joyful.

And you mentioned samizdat. I remember being in the stacks of my library in college, and I think one of the things we don’t get by doom scrolling is the ability to randomly find something that’s not connected by an algorithm. And so I was looking for some journal, and I stumbled upon a journal samizdat from Russia. And the whole idea of samizdat, of passing things hand to hand, of keeping art alive, that was so critical because art was the lifeblood of people, and it still is. It still is. People are smuggling out things that people write and people do. And it was during the Nazi regime too, smuggling that art, taking care of it.

In fact, I just went to an exhibit at the Jewish Museum where someone was renovating a house, I think in Belgium, and uncovered in the wall all this artwork that someone hid while they were racing out the door and being rounded up. And someone hid that artwork, and it stayed there for some eighty years, and it was so essential to preserve that artwork, and that was someone’s humanity was there.

Joshua Doležal:

It’s so powerful. Keeping art secret and keeping it alive undercover has many forms that we could trace throughout history. So to think of that as something we can do now, even through the act of writing an essay. The writing life often is not online. It is the long incubation period of being alone at your desk and learning to be comfortable with silence and fill that with meaning. That’s the perennial challenge of art.

So while we’re waiting, Danielle, you’ve navigated some of these challenges that are bureaucratic with art funding and things to keep BLR alive. What’s your advice to the next generation? Medical students who think that medical humanities is important, but they’re coming into these institutions where it’s never been a priority. You always have to fight for funding. It’s always vulnerable to being cut as a low priority. How do you keep it going in an increasingly corporate medical environment?

Danielle Ofri:

A, to stay optimistic and have hope. There’s always wherever you go, there’s 100 people, there’s going to be five or 10 people who are interested in that, or feel the need for something more, and you will find those people. And one thing interestingly I found now is that medical school institutions pay a lot of attention because students are now like customers and they have to please the customer to get their business. And so there’s a little more attention. If the students are interested in that, forget the faculty, I don’t care what we want. But if the students want something and push for that, there’s a little more listening to that.

So find your peeps, and peep up and raise your voice, and let people know that this is what you’re interested in and find those sources and support them. Subscribe to those journals, read them, tell people about them, go to their events. It makes such a difference, and there is enough out there.

And of course, keeping these things funded, I spend my day and night doing, and that’s the least creative of it. But someone once said that fundraising is friendraising. And it’s true. If you think of it that way, I’m not trying to raise money. I’m trying to network people who are interested in this, and then hopefully they’ll support us financially. But that’s really what it’s turned out to be, so it’s actually not quite as bureaucratic as one might think from the outside. It’s just keep finding the people, because if you ask around enough, and especially with something as universal as illness, most people, they’ve been there. They’ve been terrified in that room.

And so when you talk about that as the impetus, there’s a flash of recognition. Even the biggest CEO boss has been sitting there in a paper gown once, nervous to know what the results will be. Even that person, and even the billionaires. Despite what the tech bros say, it is not buying you eternal life. You will still be out there at one moment being terrified. If not for you, then your child or your parent, and you will know that feeling. And that’s what we try to bring out, that this is universal and this is worthwhile. And there are hopefully enough people who agree with you, and I think there are.

Joshua Doležal:

Well, that’s lovely. Thanks. Let us know again when to watch for your next book, the title, and when that’s coming out.

Danielle Ofri:

Sure. So the new book is called The Body Knows How to Die, and it is coming out in April of 2027, and it’ll be about how we face our fears of death. And I am very excited. The cover reveal is going to come soon. We’re working on that. I send out a monthly newsletter from danielleofri.com. If you’re on that list, you will see the new cover. I think it’s going to be beautiful. And I’m very excited about that.

And then, I’m on the sixth suite of Bach, finally made it that far, on the first movement, and it’s taken me a year, but I have turned the page. So I’m now officially on page three after one year of being on page one and two. That’s how slow it is. But yes, I have turned the page, so I’m feeling very, very excited about that.

Joshua Doležal:

Well, life with the cello will go on, it sounds like.

Danielle Ofri:

Yes, and the orchestra’s still going. Beethoven’s Third Piano Concerto is coming up in the spring. So that’s our next tackle.

Joshua Doležal:

My ten-year-old’s a cellist as well, so it’s lovely. Beautiful.

Danielle Ofri:

Bravo.

Joshua Doležal:

To learn more about Danielle’s writing and buy her books, check out danielleofri.com.

Next time, I’ll speak with Dr. Devika Bhushan, pediatrician, former surgeon general of California, and the author of a children’s book series focused on stress and resilience. Dr. Bhushan also writes a Substack newsletter, Spread the Light with Dr. Devika B.

That’s the thing not named for today. Until next time.

The Recovering Academic 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. It’s free to read, and the members who support it help it stay that way. I also give 5% of what I earn here to local charities.

More episodes of The Things Not Named ⬇️

You’re two people in a situation, and you don’t know each other, so you don’t know the best way to communicate yet. You always hear those blanket statements like, “If you see a bear, do this,” but every bear interaction is different. The bear is different. It’s not a blanket thing. We don’t have that doctor that we have this lifelong relationship with, and so we don’t know them as people, and how to communicate with them is so hard.”

—Rachel Weaver, author of Dizzy

Today, on “The Things Not Named,” I speak with Rachel Weaver, author of two novels and a memoir, Dizzy, about living with undiagnosed vertigo for nearly two decades.

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.

Willa Cather said that the presence of the thing not named gives high quality to literature, and this year I’m applying that idea to medicine, asking how we might be more attentive to what goes unsaid in the clinic and popular culture, and in the experience of illness from the patient’s side.

My guest today is Rachel Weaver.

Rachel is the author of three books, a novel, Point of Direction, which Oprah Magazine named as a Top Ten Book to Pick Up Now. Another novel, The Last Run, about a struggling single mother who risks everything to save her father’s fishing boat. And the memoir, Dizzy, which is our main topic today, about a debilitating illness that went undiagnosed for 18 years, even after seeing 40 different specialists.

So that book is part medical mystery, part cautionary tale about American healthcare, and it’s an inspiring story about perseverance and learning to live with life’s uncertainty.

A fun side note. Rachel and I both worked for the Forest Service. I was a firefighter and wilderness ranger, and she was a field tech in Alaska studying bears, raptors, and songbirds.

She now teaches at Wilkes University’s low-residency MFA program and at Lighthouse Writers Workshop. I became aware of Rachel’s work because of her connection to Columbia University’s Narrative Medicine program, and if you caught my conversation with Kimberly Warner, Rachel also came highly recommended from Kim.

So Rachel, thanks for joining me today, and welcome.

Rachel Weaver:

Thank you. Thanks for having me.

Joshua Dolezal:

So you’ve done a lot of interviews about this book. Is it your most recent project then?

Rachel Weaver:

Yes. I wrote Dizzy as I was also sporadically working on the novel, and happened to finish them each within the same year, and then they sold to two different publishers within the same month. So last fall, I was working on the final revisions for both. So in my mind, they’re sort of both equally my most recent project, but Dizzy is the book that I started most recently.

Joshua Dolezal:

I didn’t mean it to be a trick question, but I know most writers are working on multiple things at once.

Rachel Weaver:

Yeah. I do have another book outlined over here on my wall, my next novel. I’m about 100 pages into that one, but it’s pretty messed up currently.

Joshua Dolezal:

Are you superstitious about that? You don’t want to talk about it till it’s done, or can you share anything about it?

Rachel Weaver:

Yeah, it’s something I’ve never done before. It’s not placed in Alaska, first of all. And it’s just about a group of women that are doing all sorts of fun things. I don’t really know what it’s about yet. I’m in that phase of writing where I just am sort of seeing where it goes and what catches my attention and what’s viable for a full-length novel and what’s just, like, me having fun and maybe won’t turn into a novel. So it’s super early stages with that one.

Joshua Dolezal:

Sounds fun. I can’t help asking about this because I think we both do a little bit of book coaching or teaching. I know you teach in a couple of these programs. And so I’m always curious how people design books, because people hire me to help them do it. I’m of the school that if you’re just a pantser, unless you’re a special kind of person, you’re gonna get stuck or get lost at some point. And I have really no appetite for the plotters, like the James Patterson types who outline everything down to the... You know, I sometimes wonder what he is discovering when he actually writes the thing, because it’s so minutely outlined. So I prefer a middle space where there are some broad strokes, or there’s some big turning points that are outlined. I know I gotta get to here and there and finally to this big all-hands-on-deck moment, and there are some problems to wrestle with along the way.

But how do you do that? It sounds like you’re more of a pantser. Is that fair?

Rachel Weaver:

I talk about this a lot in my teaching because I feel like there’s actually a lot of animosity between people that identify as pantsers and people that identify as plotters, and I think that all of us have... instead of fighting about which one’s better or worse, I think it’s actually important to develop both those muscles, or both those parts of our writing brain, right? The process of discovering what our own individual process is, is figuring out when to invite one of those, either the pantser or the plotter part of yourself, to the party, and when to kick that one out and invite the other one back, right? So I think it’s really a matter of embracing that just sit down and write to discover part of our writing brains for a period of time.

But now 100 pages in, I’m like, “Oh, what is this?” Right? What am I doing? So now it’s time for me to embrace that plotter part of my mind, not necessarily to plot out the whole thing, but to consider some of those big picture questions like, what am I really writing about? What are all these people trying to do? What are their obstacles? What’s at stake? How can I shift things around to amplify those core storytelling elements? And then make some of those decisions, take those decisions back over to the pantser part of me, and then have fun from there, right?

But then come back, and I have found that balance for myself. But I think some people like to spend more time in one versus the other. But whichever one you kinda want to avoid, I feel like that’s probably the one to embrace a little bit more.

Joshua Dolezal:

That’s fair. Yeah, I tend to find a middle path that works for me that has both a plan but also room for discovery, but I like your idea. Maybe I’m too hostile to the extremes.

Rachel Weaver:

Yeah. The most important thing always is just to figure out what works for you. How does your brain want to work, and then how do you corral it into being the most productive? So I think it looks a little different for everybody, but I do think that everybody has both those parts. I think both those parts are important in writing a book. So it doesn’t get prescriptive, but it also doesn’t get super unwieldy and overwhelming, and then you just don’t work on it because it’s too overwhelming.

Joshua Dolezal:

For sure. Well, I gave everybody just the briefest synopsis of your book, so I’m curious if you would just fill in some of those gaps. If someone hasn’t read Dizzy, what’s it about? Why should they read your memoir?

Rachel Weaver:

Yeah, it’s a braided memoir of my time working for the Forest Service before I was sick, working in the backcountry. I was mostly working on a big statewide project, or I should say a Tongass-wide project, in Southeast Alaska to determine appropriate bear tag limits. So the first step in that process was figuring out what is the bear population size on all of these remote islands. So I was working on that study along with lots of other random studies that the Forest Service had going on in the time that I was there. And so there was a lot of interactions between me and the natural world, me and bears, all that stuff.

So that’s one thread of the story. And then the other thread is my time as a pretty average person trying to navigate the medical system. One thing that I’ve noticed over my time reading a lot of illness memoirs is that they’re often written by people who have a lot of things that I didn’t have, right? Like either they are doctors or they have a huge financial net security. I was a pretty normal 30-year-old, I would say. I had jobs that gave me insurance, but I also was moving jobs sometimes and I was caught in that web of preexisting conditions back when that was a thing.

So it’s really the story of me trying to navigate everything that is thrown in front of a pretty average person who suddenly finds themselves with a chronic illness and on top of that, something that was very hard to diagnose. I just woke up dizzy one day, debilitatingly so, and it didn’t go away for 10 years, and then it got a little better, and I was given a diagnosis of vestibular migraine at that year 10 mark, and things started to improve from there, but it never fully went away, and it was never something that was not very present every day for me, until the 18-year mark.

So the book is a thread of those two parts of my life. And at first I was like, “How do these things relate? I have no idea.” But over time, I realized that they relate because the book is really about power dynamics and how that plays out in the natural world and how that plays out in a clinical setting and this life full of uncertainty and really a lack of agency in both those settings.

Joshua Dolezal:

Well, it’s interesting you said you woke up just suddenly ill, and then it was years of just not being able to find your way back. And it’s striking to me, both doctors and patients write about this kind of threshold moment where you enter the world of the ill. Christopher Hitchens called it Wellville and Tumortown. It’s like you belong to two different countries almost. And he uses a deportation metaphor. You’re involuntarily deported to the land of Tumortown if you have cancer. Another writer was talking about this moment with a patient where she knew she had to share this diagnosis that would be terminal, and she described it as the yellow brick road of illness, where there’s just a departure from what we think of as normal life. That’s a bad word for it, but the healthy and the sick, and you kind of enter this alternate reality. So what was that like? You built a family, you had kids, you were doing all these things that are part of what everyone who’s healthy was doing, but you were doing it from this other country in a way. Is that accurately captured?

Rachel Weaver:

Yeah, I think so. I’ve been trying to figure this out in the time that I have felt better. So in the last three years, my brain has started working much more effectively. One of the big symptoms I had was this so thick, such a thick fog brain. It was very hard to think through stuff. So in the last three years, I’ve been thinking about this a lot because I don’t really know why I kept doing all the things. There were very clear things that I wanted to do in my life and the dizziness was not getting better, my health was not improving, but I never really thought that I wouldn’t get better.

Even though everything was pointing in that direction, and many clinicians were saying that, you know, this is something we don’t know what it is, this is just something you’re gonna have to live with. But I never accepted that for some reason. I just always kept thinking there’s gotta be someone that has an idea of what this might be. And so I kept making these decisions that if I had fully accepted that I would be debilitatingly dizzy for the rest of my life, I probably wouldn’t have done. But I just kept doing them thinking, “Well, I’ll get through it, and then eventually I’ll find someone out there in the world who is thinking about migraine in a different way, and can help me improve my situation.”

And I don’t really know why I never fully accepted that I was a member of that other foreign country, right? I just kept being like, “No, I am over here. I’m gonna get back there.” And I don’t really know what that is. I don’t know that that is all that common. And it created a lot more hardship, for sure, for myself, because I kept getting myself in these situations where I had these jobs and then I had these kids, and it was very difficult to do all of that from a place of chronic illness. But at the same time, I showed myself that I could do it. So there’s that.

Joshua Dolezal:

Well, one common theme in illness narratives is the impact that illness has on identity. So you think of yourself a certain way, and I’m not the kind of person who ever gets sick, or whatever myths you tell yourself, and then you take a real blow to your sense of self when there’s a mysterious condition. You kind of doubt yourself sometimes. How much of this is in my head versus something that’s physiologically real. Sometimes caregivers will doubt you, and that feeds some of these questions. So one way that I was reading the two braided storylines is there’s this self that comes before the illness that’s pretty clear and pretty solid, and there aren’t a lot of questions or ambiguities. You know who you are, and you’re courageous, and you’re a risk-taker, and you have a stiff upper lip about things. And then there’s the self that’s bewildered and suffering and trying to figure out what the hell’s going on with this condition and wrestling with, you’re not sure of yourself as much. All these things that you would think would not be part of a woman who works in Alaska are suddenly part of your identity. So as I see the braided strategy, it’s partly to resolve that tension between who you were before and who you were in the middle, and then maybe hoping to bring those back together and who you are, who you come out the other end as.

Rachel Weaver:

Right. Yes, absolutely. In fiction, when I teach fiction, I always talk about how you want to create a situation that is particularly hard, a journey that’s particularly hard for this particular person. And I feel like that’s exactly what happened to me. I had this sense of myself that I can handle a lot, right? I’m resourceful. And that resourcefulness became a huge part of my identity, I would say, in Alaska, just because you need that in the backcountry of Alaska often. And then I land in this clinical setting, and it doesn’t really help me for years and years. It takes me forever to figure out how to use that resourceful part of myself to help myself, because I was so diminished and vulnerable in a way that was really hard for me in particular. I mean, it’s hard for everyone, obviously. But it was especially mind-boggling, I think, to go from one extreme to the other so quickly, just overnight.

Joshua Dolezal:

Well, I don’t know if you’d agree with this, but it seems to me like the things that were your strengths in the backcountry are actually your weaknesses in the examining room. So if you’re somebody who doesn’t complain because you’re in a traditionally masculine space, you don’t want to be seen as somebody who can’t hack it or something, then you kind of suffer in silence. That’s also how young men learn how to come of age in places like that. You don’t complain. You just put up with whatever you’re dealing with. But that doesn’t work in the doctor’s office because you need to be able to advocate for yourself. You need to be able to admit when something’s wrong. If you pretend that things are okay, or if you don’t push back when the diagnosis is wrong, then you just don’t get help. So did you feel like that part of yourself was really working against you when you were trying to get a diagnosis?

Rachel Weaver:

Yeah, for sure. I was going to so many different doctors. I was getting referred to lots of different specialists, as people were trying to figure out and basically just rule out a brain tumor and something wrong with my spine and all the things. Dizziness can be caused by so many different things. So I was just cycling through doctor after doctor and I would get one opinion, one neurologist would be like, “Oh, no, there’s nothing wrong with your brain. You’re fine.” And then I would be like, “Well, I better get a second opinion from another neurologist.” So I was going to multiple people within each discipline. And then I also was trying chiropractors and acupuncturists and all things. So I had lots of opportunity to just practice.

And yes, I felt very much like the me who was showing up in these clinical interactions was not getting anywhere. And so I would try different things and I would try pushing back more and see what happened. And then I would try... Like, I never cry. I just couldn’t make my... I was like, “Oh, I should just be able to cry right now and make someone understand how bad this is.” Because you walk in and you say, “I’m dizzy,” and people are like, “Okay.” I mean, that could be a little or that could be like, “Whoa, I gotta hold onto walls.” So I would try describing it according to metaphors, and then that wouldn’t work. And then I would try describing it like, “I cannot walk down more than two aisles at the grocery store before I start to be so dizzy I have to go back outside and sit in the car.” And so I would try to make it as concrete as possible. And I just was trying all these different ways of communicating to try to figure out, “What works?” I couldn’t figure it out.

But eventually, I don’t know that there is any one way. In the end, I think what it came down to is that you’re just two people. You’re two people in a situation, and you don’t know each other, so you don’t know the best way to communicate yet. It’s the same, you always hear those blanket statements like, “If you see a bear, do this,” but every bear interaction is different, right? The bear is different. Whatever the situation is is different. How hungry everybody is is different, right? It’s not a blanket thing. And I came to that eventually. In our current medical system, we don’t have that doctor that we have this lifelong relationship with, and so we don’t know them as people, and how to communicate with them is so hard.

And I think they struggle in the same... it goes both ways. They struggle just as much to be like, “Is this person overreacting? Is this person telling me the whole story, or is this a stiff upper lip kinda person?” It’s almost like we need these dating forms before we step into that interaction and be like, “I like it when people do this. Red flags for me are...” Something like that would be so useful to be like, “Okay, I see how it might be more useful for me to come at this conversation from this angle or whatever.” Because people are so complicated, and then you throw in the high stakes of, “I’ve been living with this for six years, and I can barely function, and I don’t really want to live with this anymore.” You throw in all the high stakes, and you’ve waited for months for this 10-minute appointment with a specialist, and they’re in a hurry. They’ve got 17 other patients waiting for them, and there’s so many ways that communication can go sideways and not be fruitful in some way or another.

Not that every doctor needs to be like, “Here’s the problem, here’s the solution,” or whatever, but just something about it that helps you move a couple steps forward in your health journey. Whether that’s just feeling like somebody finally believed you that you’re dizzy and it’s really bad, or whatever it is.

Joshua Dolezal:

Well, there’s so much trust that’s involved in these interactions, and I never heard anyone suggest that the intake form could be like speed dating or something where you input your preferences and cut through the inefficiency or something. So that’s a new one to me. But this idea that you’re putting your life in someone’s hands essentially, because you’re desperate, you’re suffering. And there’s one scene that really struck me where, I think it’s a physical therapist maybe. You’ve got some kind of therapy that is trying to shake... They think that there’s some crystal that’s dislodged. And so it’s like moving your head back and forth really fast. It’s supposed to get this crystal. And inside you’re just thinking, “No, this is the last thing I want to do. I do not want to have my head in this person’s hand whipping back and forth. That’s gonna make me feel terrible. It’s not gonna make me feel better.” But you’re counseling yourself to just get through it. Maybe it’ll work. And that’s the position we find ourselves in when we’re in the examining room. In some ways, I think it’s unfair to think that it’s the patient’s job to somehow take responsibility for that interaction, because we really are at a disadvantage. We need the professional to be more sensitive, to be shouldering more of the communication load at times because we’re just not capable of doing it. So what was that like in that therapy? Your whole body is kinda saying, “No, this is not gonna help me,” but you do it anyway.

Rachel Weaver:

Yeah. That was early on. That was one of the things that could possibly have been causing the dizziness is called positional vertigo. A lot of people experience it, where your inner ear is like a basket, and one of the little crystals in there kind of falls out or gets angled weird. And so there’s this maneuver. It’s called the Epley maneuver, where you whip your head around and basically you throw that crystal back into the basket that it’s supposed to be in in your inner ear. And so there’s this moment where I lay down and I’m just like, “Why am I letting this person hold my head? I don’t know this person at all, and her grip is real tight on my head, and she’s about to do all these things that I know are not gonna make me better.” But I think that moment sort of encapsulates that feeling of, “Who’s in charge here? Whose knowledge counts for more?” Is it my innate knowledge that I just know this is gonna make me worse? Or is it the knowledge of the medical provider who is like, “Well, this is a diagnosis. We’re about to find out. If doing this maneuver fixes you, then you have this problem, and that’ll be great, and you’ll walk out of here not dizzy,” right? That’s a huge pull. That’s a, “All right, I’m doing it. I don’t really care. It’s probably gonna make me worse, but it’s worth...” It’s so high stakes, right? What if I could just walk out of here no longer dizzy? What if I could just go about my life from here on out? Am I gonna say no? Because I have this feeling in my body that this isn’t gonna help me.

So who do you trust, right? And I think that was happening to me a lot in a lot of these clinical interactions. Do I trust myself more or do I trust this person more? And I think society tells us to trust them more. And then there’s a lot of clinicians that are like, “Whatever you’re saying is like whatever, and what I know is solid.” Right? So there’s a lot of pressures, I think, on patients to not inherently trust what they think. But in a lot of medical interactions, that’s fine because it’s just more clear-cut. But I think once you get into this realm of a mysterious illness, or some symptom that just doesn’t show up on any test, then you’re in a situation where the clinician has all this medical knowledge, and the patient has all of this lived experience, like living in this body knowledge, and both have to work their way towards the middle where they each trust each other.

And I think if you don’t meet in that middle spot, if one person overrides that middle place, or the patient overrides the middle place to the clinician is like, “Don’t touch my head,” then sometimes the true communication and the possible solution I think lies in that middle ground, but it’s very hard for both people, right? Because you have to, as a patient, you have to submit yourself to who knows, an extra month of elevated dizziness just because somebody’s like, “Well, I’m gonna try whipping your head around,” or, “I’m gonna try this drug on you.” It says on here that you might pass out every day, but you know, that never happens. And then it happens to you, right? And there’s all sorts of things that can happen. So the patient has to trust a lot, and that’s very hard, I think.

Joshua Dolezal:

I remember having an appendectomy in the middle of the night. I admitted myself to the ER because my family was sleeping and I was up, and I just felt like something was terribly wrong and self-diagnosed with Google and drove myself to the ER. And it wasn’t too long, I was being wheeled in this operating room and having to sign all these things, and there’s like a laundry list of everything that could go wrong. And I’m looking at the ceiling thinking, “This is a routine procedure on the one hand, but this could be the last thing I see on the other hand.” How should I be responding emotionally? It’s kind of hard to know in some of those situations. But back to your initial stages when you’re trying to figure out a diagnosis. It seems to me because you were diagnosed with a kind of migraine later on, that some of these things might have actually worsened your condition. Do you look at any of the treatments that were prescribed early on and think that maybe it made the symptoms worse, or actually led to harm that set back your recovery later on?

Rachel Weaver:

I don’t know. I mean, honestly, there was a draft of this book where I was really angry. And I got that out of myself. And then really the process of redrafting and thinking very deeply about, what am I trying to say here? What am I trying to do with this book? It came sort of full circle, I think, in that I saw how frustrated both sides were, right? The medical side. So many clinicians that I saw were just trying to help. They were honestly stumped and frustrated in a similar way as I was. And they were sort of grabbing at straws, which I kinda needed people to be doing. I needed people to be like, “I don’t know, but maybe this.” And sometimes that was communicated clearly to me, and sometimes it wasn’t. Sometimes it was presented like, “I think this. You should try this.” But I think in reality, a lot of people were just like, “Let’s just do this and see if it helps.”

So I have come to have a lot of empathy for everybody involved in this whole journey, because with the time constraint of medical appointments and the ambiguity of a symptom like dizziness, I think everybody was just trying their best. But yes, I would say the whole process, I get every side effect of every drug. And no matter how many, even today still, no matter how many times I say I want to start at a low dose of whatever that thing is you think is gonna address my whatever, because I get all the side effects today, doctors are always like, “No, no, no. Nobody gets these.” And I’m like, “I do. I promise you I do.” So again, it just comes down to that communication, like who trusts who, right? But yeah, I think the accumulated trauma of so many procedures done to my body and so many people’s hands all over me to do whatever thing they were trying to do to help me just accumulated into a lot of stress and anxiety and hopelessness and a lot of things that I probably need more therapy to talk through.

But I don’t think anything was... Everything was in good faith. Everybody was trying to help. I honestly think that. I think my case frustrated a lot of people, and it really frustrated me. But I think now in the end, now that I know that this is a very central nervous system kind of problem, all those things I was doing was causing more stress. Even though I think I had to try them all to know that it wasn’t a brain tumor or a chiropractic issue or a whatever.

Joshua Dolezal:

Yeah. Well, so tell us about the diagnosis. Vestibular migraine, I think is the term that you finally get, which makes a difference, but then even takes a few more years to finally go away. So what is a vestibular migraine and how does that come about?

Rachel Weaver:

Yeah, so it turns out that while I was having these symptoms sort of parallel to when this diagnosis was first appearing in the literature, so in 2006 was the first study that came out that said, “Hey, vestibular migraine is a thing. You can have a migraine that doesn’t involve the typical migraine headache.” And that’s the year that I woke up dizzy. So I think a big part of my problem was that I was sort of progressing along with the general knowledge about this idea of vestibular migraine. I actually was at a migraine clinic for a number of years, earlier, somewhere, I don’t know what year it was, like year seven or eight or something, and finally this migraine doctor was like, “No, vestibular migraine isn’t a thing.” Because not enough people had thought it was a thing for long enough for everyone to accept that it’s a thing. So one percent of migrainers present with vestibular symptoms. So once I found a clinician who treated vestibular migraine, believed in it, I started getting better. But it was so chronic by then, I mean, it had been 10 years of every day that once you go from an episodic migrainer to a chronic migrainer, your options for treatment are limited.

Many people with migraine are able to control it with various migraine drugs. Everybody responds to different drugs, different treatments, which is part of the reason why migraine is so hard to manage and treat. So it took a number of years of going through all the standard migraine treatments, most of which helped some, not most. I should say some helped, to a degree, but I still was dizzy every day and I was dealing with a lot of side effects from all of these drugs and the procedures are Botox and nerve blocks, so I just was constantly getting shots in my face, including one right here and some over here. Anyway, lots of shots all the time.

So I was better, but I still, after years of, all right, maybe this is as good as it gets. I can manage this. I can manage my life with this. Then I got COVID, and I didn’t even get a bad case of COVID, but everything stopped working. All the pharmaceuticals that had been working, all the procedures stopped working, and my dizziness was back to the place it was before we even started down this migraine road. So I spoke with my migraine doctor at the time, and we both agreed, okay, it’s probably time to get some more... Who are the people in the country who are doing really great work with migrainers? Who are people that have some sort of reputation? So I just started getting myself on wait lists in clinics in Chicago and San Francisco, and I saw this doctor in Texas who has a good reputation for helping people that were really struggling like me with a long-term situation. And I just randomly stumbled over this researcher in Utah on the internet, and he was looking at migraine from a totally different standpoint, which is a metabolic standpoint.

He was running a clinical study in which he was looking at the relationship between glucose dysregulation and migraine. And I thought, well, no one’s really talked about that before. Maybe I should see. And so I filled out his little form on his website, and then ended up in this clinical study. And there were 250 of us chronic migrainers. Most of them had the more typical migraine presentation. But all of us experienced symptoms 15 days or more per month. And he had us all wear continuous glucose monitors, and then he looked at the data and he found there were three specific phenotypes of glucose dysregulation. All 250 of us had one of these three types of glucose dysregulation. And it’s not anything that anyone looks for in blood work. My fasting glucose is totally fine, and my A1c is fine. There’s nothing that any sort of typical glucose evaluation would pick up on. But what he found was that for chronic migrainers there’s a couple different ways that glucose is not being processed appropriately in our bodies, and that activity of the signal to send out insulin or stop sending insulin is in your hypothalamus, which is also in the same general area.

This is very layman’s terms of some very specific research, which I can send you the link to the paper if anyone is interested in the science explanation of it. But anyway, all of this dysregulation of the way glucose is processed can trigger some more stress and activity in your central nervous system. And if you are someone who has a proclivity for migraine, it can dump you into migraine. So anyway, this is all to say that the solution, which was not part of the study, he just was like, “All right, I think we should follow this epilepsy diet,” which is a very strict ketogenic diet, for three months. Calm down everybody’s glucose levels and activity, and then see if you can build back up without symptoms. And that is what the vast majority of us chose to do. And ever since I did the three-month protocol of very strict ketogenic diet and then increased to get out of ketosis back into a low-carb diet, I went from 24/7 migraine symptoms for 18 years to one to three vaguely dizzy days a month, and I just take a couple Advil and I’m fine. I’ve gotten off all the pharmaceuticals except for one, which I am gonna do next, but I haven’t gotten around to that one. It takes forever to wean yourself off drugs. Anyways, yeah.

Joshua Dolezal:

Can I ask, so “migrainer” is a term that you used kind of alongside researcher. So has this become... And that’s not part of your bio or anything, but you think of yourself as a migrainer.

Rachel Weaver:

Yeah, when I first heard it, I was like, “Oh, huh, am I a part of a group?” Do I have people? And it also sounds kind of fancy, like French or something.

Joshua Dolezal:

Marathoner, weightlifter, migrainer.

Rachel Weaver:

Yeah. Migrainer. But, you know, I think, so to answer your question, the previous one and this one together, I do definitely think of myself as a migrainer because I get all the things, right? Loud noise bothers me. Not as much anymore, but still, I’m sorta like, I like quiet, calm things, right? Lights will bother me, weather rolling in, stress. All of those things always made the dizziness worse, which is a migraine pattern. So yes, I do think of myself as a migraine person. And also the thing about getting a diagnosis is it gives you a group. It gives you people, right? I was so alone in this weird, mysterious dizziness, and suddenly I was like, “Oh, there are people that I can talk to about similar life happening in a similar way,” and that was very relieving in a lot of ways. It gave me not so much an identity but friends. I used to always ask my migraine doctor, “Can you find me some dizzy friends?” I’ve got these migraine friends now, but I need some dizzy friends, which he did, which was really good. But I do think it’s important in a medical journey to have people you can talk to about how life is unfolding for you to make it a little less lonely.

So yeah. And so now, after that clinical study, I came to realize that the secondary thing that is happening for me, so one of those three phenotypes, is something called reactive hypoglycemia, where carbs actually drive my blood sugar low, like way low, too low. And so those two things as identities actually feel good in a way that “I just am a person with this chronic illness” didn’t help me because it didn’t help me find friends, I guess. Or people I could talk to about a similar life.

Joshua Dolezal:

Well, I think of narrative. I’m not minimizing the importance of communities and having someone who understands your story because they’ve lived it is important for sure. But I wonder if writing is perhaps a way of expanding that circle, because what you do in writing is you try to take something that’s mystifying to someone else and make it feel familiar. So even if I didn’t have migraine, or I’m not a person who thinks of dizziness as part of my day-to-day, I can understand at least some of your experience through narrative, and it’s one of the reasons why storytelling builds trust. As C.S. Lewis said, “We read to know that we’re not alone.” I write for the same reason. I want to write out of my experience, out of my isolation, build a bridge, connect with someone, even if it seems like they have nothing in common with me. And so one of those moments for me, and this is crucial, I think, in every illness narrative. We get lost sometimes in the abstractions of diagnosis and treatment, and those things are disembodied. They’re not personal. And so when you’re writing a memoir, you need scenes, and you need the emotional truth of those scenes to come alive for someone to really feel that they understand illness from a human perspective.

So as a parent myself, I was just kind of blown away by this idea that you’re carrying this thing, and then you get a diagnosis and you think, “Oh, finally.” So I think you got a shot that... this guy diagnosed you with vestibular migraine and gave you a shot that almost immediately had an effect. And this is what you wrote after that first treatment. “Terrified suddenly that it wouldn’t last, I rushed back to my car. I needed to get home to hug my children, be present with them for the first time ever.” And I was just like, damn, to be present to your kids for the first time ever. That really puts it into perspective how illness estranges you from yourself and from other people around you. So it’s more than having a community that’s just people that you can commiserate with, I think we need to expand our community through narrative as well. That was a scene that did that for me.

Rachel Weaver:

Yeah, that’s the greatest thing about writing, I think, and reading. You can experience something through a narrator, either fiction or nonfiction, that you never would have thought of yourself or you didn’t understand prior to reading it, right? And I really set out to write this book using all those tools of fiction, not the part where you make stuff up, but the scene work and writing from deep inside the experience of the character, in this case, the younger me, so that... Because I really wanted people to understand what it is to live with some really tough chronic illness, because so many people in the world are living that way, and we don’t know it. You don’t know it. In all those years, I think people would interact with me, and they would just think, “Oh, she’s probably really tired,” or, “She’s just thinking about other things or whatever.” Everybody around us, I think, is living with something hard, but I think chronic illness is a pretty common thing that people we interact with really are dealing with in a big way.

And I wanted this book to name it as specifically as possible, for those people that have a hard time communicating that they are living with something like this to the people that love them, but then also for those people that care about them to understand their experience better, at a deeper level, at a more visceral level. Because I think you can explain that, yes, I live with this, here’s my symptoms, whatever, and you can explain it in a way that helps the person you’re talking to understand it cognitively, but it’s narrative that makes it land in the body, right?

Joshua Dolezal:

Well, neuroscientists actually say that when you describe something, use sensory detail to paint that scene, you activate the same part of the brain that would be activated if you were literally doing it. So one neuroscientist has this beautiful metaphor for it, that when you evoke your experience well through art, through prose or poetry, that your imagination becomes the floor of its happening. It’s real. Even if you’re imagining it, it still becomes physically real to you, in the way that it would if you were living through it.

[inserted audio]

If you were listening to our conversation live, you know we had some technical difficulties, so I’ll need to wrap up the episode here.

To learn more about Rachel’s writing and to buy her books, check out rachelweaver.net.

Just a reminder that a few months ago I decided not to paywall this show, and some of you choose to support it anyway, which keeps it free for everyone. So thank you to everyone who’s a supporter.

Next time I’ll speak with Danielle Ofri, author of Singular Intimacies, the first medical memoir I ever read and still one of my favorites. She’s also the author of six other books. Dr. Ofri spoke with one of my first medical humanities courses by conference call nearly 30 years ago, and we’ve kept in touch over the years as she’s become one of the leading doctor writers of our time. Among her many accomplishments, Danielle is the founder and editor-in-chief of the Bellevue Literary Review, which is celebrating its 25th anniversary this year.

So that’s the thing not named for today. Until next time.

The Recovering Academic 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. It’s all free to read, and it stays free because readers choose to support it. I also give 5% of what I earn here to local charities.

More episodes of The Things Not Named ⬇️

"A lot of what makes [memoir] good is what you leave out. You can’t interpret things for the reader."

Dr. Sandeep Jauhar, author of “My Father’s Brain”

Today, on “The Things Not Named,” I speak with Dr. Sandeep Jauhar, a cardiologist and the author of several books, including Intern, Doctored, Heart: A History, and My Father’s Brain: Life in the Shadow of Alzheimer’s.

Below is an edited transcript of our conversation on Substack Live.

Transcript:

Joshua Doležal:

Welcome back to The Things Not Named. I’m Joshua Doležal.

Willa Cather said that the presence of the thing not named gives high quality to literature, and this year I’m applying that idea to medicine, asking how we might be more attentive to what goes unsaid in the clinic, in popular culture, and in the experience of illness on the patient’s side.

I’m excited to have Dr. Sandeep Jauhar here today as my guest. Dr. Jauhar is a cardiologist and the author of four books: Intern, Doctored, and Heart: A History, as well as My Father’s Brain: Life in the Shadow of Alzheimer’s, which we’ll focus on today. My Father’s Brain takes an unflinching look at the toll that caregiving takes on families. It also delves into what happens in the brain as we age, how memory gives meaning to our lives and even changes with time, and how dementia complicates our understanding of what it means to have a self. In addition to his clinical work, Dr. Jauhar is a contributing opinion editor for The New York Times. He’s also appeared frequently on NPR, CNN, and MSNBC to discuss medical issues. And his essays have been published in The Wall Street Journal, Time, and Slate. You can follow him on X at @sjauhar and learn more at his website, sandeepjauhar.com.

Dr. Jauhar, welcome and thanks for joining me today.

Sandeep Jauhar:

Yeah, thanks for having me.

Joshua Doležal:

So this is your latest book. Have you done a book tour? Are you currently making the rounds with it?

Sandeep Jauhar:

Yeah, well, the book came out in twenty twenty-three, so I’m sort of done with that part of it. But yeah, I mean, I sort of miss it. But yeah, no, it was a nice tour. I went to, you know, I don’t know, maybe seven cities and, yeah, it was fun.

Joshua Doležal:

So what’s that like? Do you have to take time off work to make the book launch happen? Is it kind of all-consuming for a bit?

Sandeep Jauhar:

Yeah, I think, you know, the first couple of months tend to be a lot of interviews, and, you know, talks, book talks. It takes some time out of my schedule, but, you know, it can be scheduled. So like I know when the book’s coming out, and I know how much vacation I have, and so it all tends to work out.

Joshua Doležal:

Why do you do it? I’ve asked this question of a lot of people. You know, doctors are busy people, and, you know, I assume there aren’t financial demands that require you to write books, and it’s hard to do with a family, as I know. I have three kids.

Sandeep Jauhar:

Yeah.

Joshua Doležal:

So when you work a job that typically has a high burnout rate already and then you’re writing on top of it, it seems like kind of a lot. So why do you stick with it?

Sandeep Jauhar:

Yeah. That’s a good question. It’s really a miserable hobby. No, writing, you know, as I’m sure you know, is really hard. It’s probably the hardest thing I do day to day. You know, harder than my medical practice really, which can get a little bit algorithmic, whereas writing demands a sort of creative impulse, and that’s why I do it, because I always wanted to make art, you know, in whatever way I could. I had that creative impulse, and I didn’t find really an adequate outlet for it within clinical medicine. And so I found a lot of aspects of medicine were fascinating, troubling, you know, sparked a lot of thought and created a lot of dilemmas in my mind. And I found writing was the way to try to help resolve some of those dilemmas. I mean, I do some writing as just pure advocacy. You know, I’ve written many, many op-eds in The New York Times about aging, ethics in medicine, and, you know, other aspects of public health and clinical medicine that, you know, I just want to bring out some point of view that I would like to be debated or I want to advocate for. But that’s really not my main impulse, especially when it comes to books. With books, you know, it’s just I really focus on creating the best art that I’m able to.

Joshua Doležal:

Well, it’s nicely said. I have kind of made a name for myself for being grumpy about the quality of new releases. You know, most of the craft touchstones that I look to for my own memoir writing and for fiction are ten years old now. Tobias Wolff, Mary Karr, some of the authors in your genre, Atul Gawande, Danielle Ofri, they were writing earlier, right? So the latest wave seems to be much more grievance-driven. The craft emphasis seems to be lightened. And so I was so refreshed by your book because I was drawn into it with the questions it raised and, you know, the story it was telling. But there are these touches that really showed a high level of nuance and art, as you’re saying. So how did you learn the craft? Is that something you credit your editors with, or did you study it? How did you become an artist?

Sandeep Jauhar:

Well, I mean, I studied it in the sense that I read a lot of really good memoirs, you know. And, you know, I think to be a good writer, you have to be a good reader. And some of the names that you mentioned, you know, I’ve read their whole oeuvre. Tobias Wolff, you know, This Boy’s Life, one of my favorites. And there’s another book called Stop-Time, which is really one of the great memoirs, I think, in American literature. And I think it was an inspiration for This Boy’s Life. Great book. So I spent a lot of time, you know, before I started writing books. My first book was called Intern. I got the contract for Intern without a proposal, which tells you how much things have changed. But it was just an offer from my publisher, my still publisher, Farrar, Straus and Giroux. And I remember I was a cardiology fellow, and I just threw myself into... I didn’t know I was going to be able to do it, to write a book. I had never even thought of writing a book. And so I just kind of dived into reading great books for several months, you know. And you sort of know what resonates with you and the kind of style that resonates with you. And yeah, that’s how I studied it. I didn’t take a creative writing workshop and I didn’t get an MFA. But it was, I was sort of largely self-taught, I guess.

Joshua Doležal:

Yeah. Well, I think we learn language by imitation when we’re young. We mimic sounds. You know, the term for that is canonical babble. And, you know, it doesn’t mean anything, but it sounds like the things that mean something, and then eventually it becomes coherent. So I feel like with writing, imitation is kind of where we start, and then slowly we find our own voice and it becomes more coherent and meaningful. So we all have to be self-taught in that way, I think. One example real quick, and then I want to shift to some of the bigger claims and troubling questions that the book raises. Just as a kind of example, at the end of chapter three, you’re at a luncheon, or it’s an award banquet for your father. He’s featured and he gets the award, but then he gets anxious and wants to leave. And so in this book about his slow decline and progression through dementia, this is one of those painful examples of how far he’s come from the researcher that he was. But his inability to even, you know, really care about social cues anymore, he just, he got his award, so he wants to leave. And you have this kind of exchange where you’re irritated, you’re kind of embarrassed because it would look bad to everyone else if you left. You’re even a little bit cruel because he wants to take a taxi, and you remind him he doesn’t even know where he is. But then it ends with a kind of exchange that’s more affirming. I’m curious if you could kind of talk us through how you designed the end of that chapter, because it seems like you made some real choices there to put yourself in a certain light to show the reality of that exchange kind of painfully. But then you didn’t want to leave it with the cruelty. You wanted to soften that. So could you talk through some of the choices you made as you were writing chapter three?

Sandeep Jauhar:

Yeah, I mean, it was, I haven’t read the chapter in a long time but it was an awards banquet that my father was invited to, and I knew he wasn’t going to be able to go by himself. It actually happened to be at the university at which I am a professor of cardiology. So, you know, I was a little wary of the whole situation and how things were going to play out. And they played out sort of the way I expected, maybe a little bit worse. You know, at first it was okay, but then my father started making comments to people around the table. It was making them feel a little bit uncomfortable.

And in the chapter, I think I reflected on why I was feeling the way I was, and I think it was because my father and I were very similar in so many ways. I mean, physically, we looked very much the same. The same sort of skin tone, facial features. And then he was also a writer of books. He wrote several. He used to... I don’t know if it was him or someone joked, “How many books have you sold?” And he’d say, “Dozens.” He’s written three books over about twenty years. You know, but they were scientific books, you know, more like textbooks.

But, you know, he was always a person who was striving to make a name for himself. And in that sense, I understand where he was coming from. We were very similar, I guess, in that way. And so I was watching him decline, I was very afraid that this is going to happen to me one day. And of course, we know that Alzheimer’s is not classically inherited, but there are forms of it that have a genetic predisposition. So that was sort of the context. And then of course, you know, there were people there who were basically like colleagues. And, you know, so he got his award. It was really more of a recognition for the fact that, you know, my father grew up very poor, and he created these scholarships for underprivileged students back in North Dakota, where he was living before he moved to New York. He was a professor there. And so when he came to New York, one of his real goals was to create another set of scholarships. He really wanted to spend his money doing that. And we were very supportive. So we created this endowed scholarship for underprivileged students. And so they wanted to recognize him. And so he went and got his award.

And then, of course, immediately he wanted to leave. And yeah, I mean, I felt angry, I felt embarrassed. And ultimately, I acceded to his demand to leave. We got up sort of as the whole thing was going on. I took him, drove him home. I was very upset and didn’t really say anything to him, other than, like, I think I lost my temper a little bit at the luncheon. You know, it’s just really easy to do that. And, you know, it sounds like as I talk about it now, it just sounds horrifying that a caregiver would, you know, would not have empathy, you know, and especially for your own dad. But when you’re in the moment, it’s just hard. It’s hard because you’re seeing a person who’s clearly declining, and your expectations are colored by the person that they were, not the person that they are. And so when your expectations collide with reality, that’s when there’s this cognitive dissonance, and you just... I just reacted with anger. And yes, I said something like, “How are you going to take a taxi? You don’t even know where you are.” And he kind of looked at me and didn’t really respond, but it dawned on him that I was probably right.

Anyway, we got back to his house in the driveway. And then, you know, like a lot of people with dementia, my dad just quickly forgot. Or maybe he knew and maybe he was trying to make up for it. I don’t know. My sense is he probably just forgot that we had had an argument, and that’s one of the sort of silver linings, if you will, of dementia, is that as your brain, let’s say, shrinks, I mean, physically does shrink, so do your expectations, your resentments, your ambitions. You know, a lot of the things that made my father unhappy, this ambition to be recognized. He didn’t really care anymore, you know? And so in some sense, he was happier when he had dementia than when he was sort of a normal, striving, highly striving individual who wasn’t getting the recognition that he wanted.

Anyway, he sort of forgot about it, and I said, “I’ll come tomorrow to see you.” And he said, “Great.” I said, “Maybe we can go get a coffee.” And he said something like, “I don’t really care to have coffee, but I do care to see you.” And, you know, then my heart kind of melted, you know? Because even as a 50-year-old, or when I was probably in my late 40s, you know, a kind word from your dad still means a lot, you know.

Especially my dad, who was a bit sparing with kind words, you know, when I was growing up. So it was a nice moment, and that’s how I ended it, because I think the chapter sort of encapsulated my experience, which was some bad, but a lot of it was redemptive and good, you know?

Joshua Doležal:

Well, I think what you said earlier about the dissonance that caregiving creates and that these end of life stages bring out in us is really the key. When I’m thinking about this from a craft perspective, what I love about it is that on the page, it’s fairly spare. You let the reader connect the dots. You can just let the words kind of stand there on their own, and it makes you uncomfortable in the best possible way, in ways that I think memoirs have started to shy away from. And there’s a lot packed into just a few paragraphs where one minute you’re kind of hissing at your father in this cruel way in the scene because you’re embarrassed and conflicted. And then in the next moment, you know, it’s not about the coffee, it’s just about seeing you. And all of those things are kind of wrapped up in the scene, but not in a way that’s hectoring or that you interpret or that is sermon-like. It just kind of sits there, and then the reader has to finish it within themselves and complete it emotionally. I think that’s where resonance comes from.

Sandeep Jauhar:

I appreciate that. I think with writing that you’re proud of, a lot of what makes it good is what you leave out. You know, you can’t put too much in there. You can’t interpret things for the reader. You just have to, you know, respect the reader, respect their intelligence, respect their ability to draw interpretations from what you’re putting out there.

Joshua Doležal:

Well, I’m nerding out about craft here, and one of the more, I think, universal facts and themes that you get out in the book is how pervasive dementia’s becoming. This really was chilling, I thought. Right now, currently, one in 10 Americans over 65 already have some form of dementia, and then in 30 years when I’m 80, that number will be one in five, so it’s going to double. And at that point, dementia will be the second leading cause of death behind heart disease, even greater than cancer. And polls, I think you say, show that people fear dementia even more than they fear death. So, ugh, that’s a lot. What do we do with all that?

Sandeep Jauhar:

Well, one of the reasons why dementia prevalence is increasing is that we have more vascular disease. And one of the things I point out in the book is that some of the ways to prevent dementia, some of those risk factors are the same as for cardiovascular disease. So move more, exercise, eat right, get enough sleep, all things that we know about heart disease we can apply to dementia.

The difference between heart disease and dementia is that heart disease has a lot of good treatments, and dementia does not. And dementia is unique in the sense that you’re still the same person when you have coronary blockages. But when you have a deteriorating brain, your self can get effaced in various ways. I do make the point that self never goes away, that there are certain habits and predispositions that are, let’s call them subcortical, that are not affected by Alzheimer’s. So my father, for example, may have forgotten a lot about who he was, but he still knew what music he liked. He still knew what foods he liked to eat. He was still the same man. It’s just that he was a different man.

So people often say that dementia can change the self. And in that sense, it’s very, very scary to have a disease where you find yourself changing, but you find your memories getting erased. And also you find yourself socially isolated, especially in America, where people just don’t really have the patience for people who have a deteriorating brain.

There are other parts of the world that probably have a little more patience, a little more reverence for the elderly, than we do in America. But even those parts of the world are changing. I think in China, the term for dementia is something like elderly retardation disease. And in Colombia, people who have dementia are thought to have had hexes placed on them. In America, it’s just very striking because in America and especially overall in the West, the things that we prioritize tend to get compromised in dementia, economic productivity, the ability to process information. We are in an age where we are constantly being inundated with information and putting our own information out there, and the information traffic is just so incredibly dense, and people with dementia cannot participate, and so they end up getting isolated, and that isolation feeds the disease. And so the disease is no longer just one of plaques and tangles in the brain, but it’s also one of social isolation.

I think that’s why people are more afraid of dementia than they are of death. Because my mother was so afraid of the word Alzheimer’s that we never mentioned it, even when we knew in our hearts that my dad had it. But she finally was the one who advocated to take him to a neurologist. But we never mentioned the word because in her mind, Alzheimer’s meant institutionalization and isolation and physical dependency. And all those things are true, in many ways. So it’s tough. We as a society are completely unprepared for the tidal wave of dementia cases that are going to be hitting us in the next couple of decades. And we have some medications, but they don’t really work very well. And so we spend a fraction of research dollars on dementia as we do, a fraction of the dollars we spend on heart disease and cancer.

Joshua Doležal:

Yeah. Well, it is a wake-up call. I was reading some of this as a kind of indictment of American culture, which isolates people even without dementia. Bowling alone has been the case for a while. But your parents left India, left an India that seemed at that time to represent these traditional values of community. And so I think America is often seen as the soulless place where people don’t have that, or they lose the sense of belonging to a neighborhood, or they just spend their whole lives moving around. But I think you said somewhere in the book that’s also true in India more. There are no stay-at-home parents necessarily or fewer than there used to be.

Sandeep Jauhar:

Mm-hmm.

Joshua Doležal:

And so I wonder, do you think there would have been a better life for your father back in India, or is his story playing out more or less the same way for aging people in India today?

Sandeep Jauhar:

No, I think it’s different still. I think Indian culture is still... There are a couple factors, and there are cultural factors. The Indian culture still preaches reverence for your elders. And, of course, things are changing as the world generally is getting more, let’s say, Westernized and developed. But I think that in India still, multi-generational families are the norm. And the problem in America is that, well, so 100 years ago, America, maybe a little bit more, maybe 150 years ago, most Americans did live in multigenerational family units, often on farms. And there was always someone around to help when someone got sick, especially an elder. And then because of different factors, industrialization, and other cultural and social changes, the American family unit became more nuclear and smaller and more urbanized.

That was a wonderful thing, because a lot of good things came out of that. Kids were able to leave the homestead, go out and blaze their own paths. Women were able to leave home and go work and achieve their own goals. Those are great things. The problem is that when someone gets sick you see the deficiencies of that model. And today, when families, there are 15 to 20 million unpaid family caregivers, most of them are women. Most of them are daughters or daughters-in-law. And so the brunt of the work still falls on the family, but it’s not as diffused as it once was, and it falls on one or two people and can make them very miserable and sick physically and emotionally.

I would say that India has changed. There are nursing homes that are cropping up wherever, but there’s still the multi-generational family unit is still generally the norm. So I think from the perspective of social acceptance and integration into society and the family unit, I think my parents probably would’ve been better off in India. I think they certainly would’ve been less lonely. But of course, India doesn’t have some of the amenities that one has in America. So it’s hard to say.

I know if I had asked my parents, they would’ve said, “We’re way better off here than being at home.” But in India, in a lot of communities, a lot of cities, there’s a cousin down the street. A brother living next door. There are people around who can help out. Everyone is so spread out in America. My brother and I live in New York. My sister lives in Minneapolis. And my parents were living in Fargo, North Dakota, where my father was a professor. And we would see them once or twice a year. We didn’t even know until later when they moved to—we brought them to New York to help take care of them. We didn’t even know until their friend came to move them, she told us that my parents were eating cereal for dinner.

Joshua Doležal:

Yeah.

Sandeep Jauhar:

We didn’t know that. So you see the deficiencies of the model when people get sick. Until that point, it’s all hunky dory. But it allows you to chase your ambitions.

Joshua Doležal:

Well, it’s the paradox of the American dream, and your father chased that dream, right? To opportunity that he wouldn’t have had elsewhere. But it left him isolated, so it seems like that’s the trade-off. Be all you can be. The American dream is, the price that you pay is isolation and this kind of sobering experience that your father had and others like him. So I don’t know if it’s a fair question or even possible to answer, but do you think that trade-off is worth it? Because you and your siblings have done the same thing, chased careers. Is it worth it then to have all of that and a lonely final chapter? Is that what you think will be your story too?

Sandeep Jauhar:

I hope it’s not my story, but it likely will be, right? Look, life is a guaranteed tragedy in the end. We all die. And for most of us, the final chapter is a difficult one. It can be lonely. It can be physically uncomfortable. You’re faced with pain. So does that make the rest of it not worthwhile? No. But how you end an experience always sort of has an outsized importance. So how we end our lives is very important. That’s one of the lessons I took from Gawande’s Being Mortal. And it’s super important. But you can never know.

Joshua Doležal:

So it’s an illusion to think that we have choices about those things.

Sandeep Jauhar:

Well, we have choices about chasing our ambitions and living a fulfilling life. If you have resources, yeah. We have choices, but how we end our lives, some of it depends on the choices we make. If you buy long-term care insurance, then you’re likely to have a way of living in a decent place near the end of your life, if you can’t live at home. If you maintain good close relations with your children, then chances are that they’ll be around to help you, as they should. As my brother and I and my sister helped our parents. They were good parents, and we tried to be good kids, up till the very end. But some of it is out of our control. How we get sick, how our bodies, our families respond to that sickness, some of it is beyond our control. And so look, that’s just the nature of life.

Joshua Doležal:

Well, tell us a little bit about Harvinder, who was a family friend who did the bulk of caring for your father. So you and your siblings were doing your best but you’re also working full time. You can’t provide twenty-four/seven care. So she lived with him. How did she meet the family? And tell us a little bit about her story.

Sandeep Jauhar:

Yeah. No, we found her services in... I think it was an ad in an Indian grocery store maybe. Or she might have been recommended by someone. I don’t remember all the details, but she was a godsend. She was just a wonderful caretaker. She came from South Asian culture where respect for the elderly is very important. And so she approached the caregiving with that mindset. She was very patient with my dad, even when he would lose his temper. She knew his likes and dislikes, some of which were culturally based, so she just had an intuition for it. She made him Indian food. She was wonderful. And even with her helping us, I would still say the care for my father in that last couple of years was one of the most difficult experiences I’ve ever been through. So one can only imagine, one hates to imagine what families go through who don’t have resources to hire help.

Joshua Doležal:

Well, it was kind of abusive for her, wasn’t it? He kicked her out of the house multiple times.

Sandeep Jauhar:

Yeah, yeah. No, she was incredibly patient. And, yeah, he, as people with deteriorating brain cortex and deteriorating amygdala do, he became emotionally violent and sometimes physically violent. And didn’t believe that she needed to be there to take... He didn’t think he needed her. One of the problems with dementia, as is with, let’s say, schizophrenia and maybe some anxiety disorders like OCD, is you develop something called anosognosia, which is that inability to recognize your own deficits. And with dementia, it’s an inability to know that you have a disease because of the disease, and that’s what my father had. He was unable to recognize that he couldn’t take care of himself. And so you’d point out, “Well, you don’t know how to use the microwave. How are you going to make tea in the morning?” Or, “You left the stove on. I came into your house, and the stove was on.” Do you realize that... But he couldn’t process it. So yeah, he would kick her out constantly and, God bless her, she would sneak back into the house through the garage and call us, and she didn’t want to leave him alone. And she stuck by him till the end.

Joshua Doležal:

But as I was reading that, I was struck by... I mean, she is a wonderful character and speaks truth to all of you as well about the limited role that you’re able to play at certain times. But it was heartbreaking to read that her own husband died while she was caring for your father. And that’s one of these... Why did she stay? Her own family back home was in need of her. So what kept her with your family?

Sandeep Jauhar:

A lot of, some of her children had already left India. And, yeah, no, she just was very loyal to my father and really to my sister, who had a very close relationship with her and they became really, really good friends. And so we needed her and she stuck by us, till the end. So yeah, it was tragic that she stayed. She couldn’t go back and be with her own family. But that was a decision that she made. But we couldn’t have done what we did, and my father would have had a much worse ending to his life without her. Absolutely.

Joshua Doležal:

Well, I thought she was an important character and added some nuance definitely to the story of caregiving.

Sandeep Jauhar:

Yeah.

Joshua Doležal:

So one of the tough questions I want to ask you is about writing about others, and it’s a kind of perennial question for memoirs. How much of stories that involve other people are ours to tell? And in a certain way, our reputation or our legacy is how people remember us. And your father was like you, or you’re like him in that regard, that you care a lot about how people think of you. So this wasn’t a choice that he got to make. If he’d had editorial sway, he probably would have not wanted certain scenes to be told publicly. So I’m curious how you wrestled with that. I know that you’re hard on yourself too. You have a scene where you briefly imagine, you don’t actually imagine suffocating him, but you imagine that it could be quick, right? So the finger is kind of pointing both ways in that regard. But how did you work through that ethical question of how much of your father’s story of illness was yours to tell publicly and how it helped serve a larger need?

Sandeep Jauhar:

Well, my father was a very giving man. And I had written about him in many of my books. Intern especially, he was a major character, and not always in a flattering way, but in a realistic way. He read Intern and he didn’t object. My brother also was a major character in Intern, didn’t object to the way that I interpreted my experience with them. You’re right. When there are problems and mistakes that are made in my memoirs, most often they’re made by me, and so I don’t flinch in pointing the finger at myself. But knowing what I knew about my father, I don’t think that he would have strongly objected to my writing a book that would help hopefully thousands if not millions of people cope with this most difficult journey. So yes, I did see that whole story as being part of my own story. And I didn’t... I mean, I didn’t deliberately try to make it as garish and baroque as possible. I presented the way things unfolded. I don’t know if he would have had major objections. If he had, yes, that would have affected how I viewed things. But given our history together and what I knew about him and what I knew about his social consciousness, I thought it was fine to write.

Joshua Doležal:

Mm-hmm. Well, one of the ways that you try to serve that larger need is in talking about memory. And so you have some portions that are more scientific about just what happens to the brain when it ages and how erosion of memory affects self and some of those things. But I saw it as a subtle thread throughout the book where it was your father’s memory that was slipping, and often you were either correcting him or you just silently knew that whatever he was remembering was not true. He was making things up. As Mark Twain says, “Sometimes you reach the age where the things you remember best never happened at all.” It’s an exaggerated version of that in places. But then I saw toward the end of the book, you start doing the same thing yourself, or you’re at least more aware of how the way you see things is more of an interpretation than just the reality.

Sandeep Jauhar:

Hmm.

Joshua Doležal:

And I thought that was a really nice touch in the final scene. So I wonder maybe as we wrap up, if you’d be willing to read that final scene, and we can talk about why you ended it that way.

Sandeep Jauhar:

Sure. So memory and deconstructing memory, examining what it means, it was a big part of the book. And one thing that we know about memory is that it’s active and vital. It’s not just simply a reproduction of what happened in the past. That concept where memory is a reproduction of some event is known as correspondence. And that’s how we think of memory. But there’s another competing concept in memory called coherence, which is that memories change as one changes, and memories can be constructed to conform with the values and person that you are today. And so there’s a tension, right, between correspondence and coherence, and that really exists throughout the book and in many different scenes. But the final scene, and I guess this is the last two paragraphs of the book, after my father died, he had stopped eating and it was a Friday morning, and I hadn’t made it home to his home. And my siblings called me frantically. I was on my way, and they said, “You need to come now.” And I got there and my brother said, “Dad, Sandeep is here.” And not long after that, probably a matter of a few minutes, he took a long breath, and then he went silent.

So I wrote,

As he drifted away and people began to wail, I experienced a strange remembrance. It was from our second year in America. I was nine years old and learning to ride a bike on the sloping dirt hill behind our house in Kentucky. It was a cheap girl’s bike that my father had bought on sale from Kmart. Built for a paved street, it made creaky metallic sounds as I coasted precariously down the furrowed trail. As I used to remember it, when my father quickly realized that I could make it down the hill on my own, he lost interest and went inside. But that sunny March morning, as I gripped his lifeless body, for some reason I saw him running beside me. I was pedaling furiously down the rutted path, flying over sticks and weeds as my father kept pace to make sure I did not fall. I know it didn’t happen this way. I can’t imagine that it did. But it is my memory now. I’ll keep it.

Joshua Doležal:

It’s a lovely scene, and it’s a shift because earlier your siblings were willing to lie to your father to keep the peace. Validation therapy, I think, is a term for that, that advocates for that. Don’t contradict or cause conflict, but just agree. Go along.

Sandeep Jauhar:

Yeah.

Joshua Doležal:

And you had held the line that you wouldn’t lie to your father. You’d always tell the truth. But here it seems like you’re almost lying to yourself and accepting it.

Sandeep Jauhar:

Yeah.

Joshua Doležal:

Why did you want to end on that note?

Sandeep Jauhar:

I think it’s just a recognition that we do what we can to cope with our lives and difficult experiences. And it also points to the fact that memory is such a big theme in the book, and I wanted to end it on that note. That all the false memories that my father had or his inability to maintain memories of reality. For example, that my mother had died, he kept forgetting. That in some sense, we all do that. It’s just that in his case, it was just more obvious. But in some sense, we all sort of lie to ourselves. And that was the reason.

Joshua Doležal:

Well, thanks for sharing your father’s story with us. It made me think about my own life and my relationship with my kids and lots of important things. So it’s definitely provided a service for me, and I know for anyone who reads it.

Sandeep Jauhar:

Thank you.

Joshua Doležal:

And I appreciate you being here. So that’s all the time we have for today.

The Recovering Academic is made possible by the support of readers and listeners like you. So as always, thank you.

Next time I’ll speak with Rachel Weaver, author of Dizzy, which is part memoir and part medical mystery. Weaver recounts waking up dizzy one morning, unable to function, and how it took ten years and more than thirty doctors to diagnose her and eight more years to find some relief. So after hearing from doctors and other healthcare practitioners for the last few episodes, we’ll go back to look at illness from the patient’s side.

That’s the thing not named for today. Thanks again to Dr. Jauhar for joining me, and see you next week. Take care.

The Recovering Academic 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. It's all free to read, and it stays free because readers choose to support it. I also give 5% of what I earn here to local charities.

More episodes of The Things Not Named ⬇️

"I can’t tell you the number of times I’ve walked into a patient’s room and their chart tells me they should be dead and they’re not, and I don’t know why. And I can’t tell you the number of times I’ve walked into a patient’s room where the chart says they should be fine, and they are very, very much not fine, and you have to figure out why. And I don’t know that I would have ever really been able to figure any of that out without humanities education."

— Shelley DeWeerdt Hintz, RN, BSN

Today, on “The Things Not Named,” I speak with Shelley DeWeerdt Hintz, a critical care nurse, English major, and one of the best writers I ever taught, on what a nurse sees that doctors don't, why the humanities prepared her for the clinic, and what living with autism taught her about high-stakes care.

Below is an edited transcript of our conversation on Substack Live.

Transcript:

Joshua Doležal:

Welcome back to “The Things Not Named.” I’m Joshua Doležal.

Willa Cather famously said it’s the presence of the thing not named that gives high quality to literature. 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 Shelley DeWeerdt Hintz. Shelley’s a former student, one of the best writers I had the honor of teaching, so this is going to be a special episode for me. Shelley’s both an RN and a BSN, both nursing degrees, and also holds a master’s in public administration from Drake University in Des Moines. She’s had to recreate herself multiple times since graduating with a BA in English and writing from Central College in 2007. She graduated just a couple years after I started teaching there. And her path really goes to show how much you can do with an English major. Today, Shelley’s an adult critical care float RN, and a day that begins as a cardiology nurse may switch to ED trauma and then to surgical charge nurse all in a 12-hour shift. It sounds to me like she’s living a real-life episode of The Pitt.

Shelley lives in Iowa with her spouse, Damon, two stepsons, and several spoiled animals, including her horse, Vinny, who’s taught her everything she knows about being a human.

So welcome, Shelley.

Shelley DeWeerdt Hintz:

Hi. Long time no see.

Joshua Doležal:

Yep, yep. So The Pitt, that rings true? Or is it not like it seems?

Shelley DeWeerdt Hintz:

I haven’t actually watched it yet. I need to, but I don’t get an awful lot of downtime. I’m a very outdoors person when I’m not at work. So downtime, I’m usually trying to power down, so I usually read. I know people have talked to me about it, but I’ve seen clips, enough to know that it’s more familiar to what my day looks like than maybe other medical shows. Definitely, we’re not Grey’s Anatomy, but The Pitt is more familiar from what I’ve seen.

Joshua Doležal:

So you work three 12-hour shifts or four 12-hour shifts?

Shelley DeWeerdt Hintz:

I am weekend package, so I work every Friday, Saturday, Sunday, 12 hours. Our shifts usually start 7:00 AM and they end at 7:00 PM, but then we have a half hour we stay for a report to the ongoing team, and then the team that comes on for overnight is from 7:00 to 7:00 AM, so we basically split the day right in the middle.

Joshua Doležal:

Wow. That’s a long workday.

Shelley DeWeerdt Hintz:

It’s like three days, but then you get four days off, and there’s trade-offs. You get used to it. It’s definitely a culture shock when you first start it when you’re in nursing school, but you get used to it.

Joshua Doležal:

I have to tease you a little because the reason we’re speaking is a text I got from you after, I think, another one of these interviews where you were saying, oh, you’re talking to doctors and we nurses are the ones who really see what’s happening in the trenches. So I was paying attention, so hopefully we can hear a few of those war stories today.

Shelley DeWeerdt Hintz:

Yeah. I mean, we wouldn’t function without the doctors and they are the marching orders. They give us the list of things to do. Obviously, they’ve spent a great deal of time in practice learning, and when all else fails, we have to defer to them. But generally with rounds, especially in med-surg, they will come around, and they’ll hang out with the patient for maybe 10 minutes. They’ll give me the list of instructions for the day, and then we won’t see them again until that time tomorrow. And then everything else that happens to the patient is up to me. And so it’s up to me to notice, to change things, come up with ideas. I can message them when things are not looking okay, when I have concerns. But basically, the rest of the day is, I have to figure it out and then include them if I need help. So as much as patients believe their doctor is just, like, right there, they’re not.

Joshua Doležal:

Do you think the average person just doesn’t understand how much of the actual care is done by people like you?

Shelley DeWeerdt Hintz:

Yeah. I have most... Probably every week, I’ll have at least one patient who has a lot of anxiety, and so, you know, will question everything that we’re doing. Like, did the doctor want this? Did the doctor want that? Who are you? Why am I not... Or they’ll sleep through their doctor rounding, and the doctor won’t want to wake them up, and they’re going entirely off what I’ve told them and charted. And then they’ll be mad because they haven’t seen their doctor, but their doctor has gone through the chart. So there’s, every week you’ll have somebody just not quite understanding how the system operates in a hospital. It’s a little bit different in critical care. Doctors are more accessible, and they’re more frequent. But once you go to, like, a step-down unit or a med-surg unit, you won’t see them nearly as much, and they’re much less involved.

Joshua Doležal:

I want to get back to that, but maybe we can kind of double back to the beginning. So you got a degree in English, and I have actually forgotten what you were planning on doing with that initially. You were thinking about a career in writing, I believe, at the time. So help us understand how you went from the English degree to nursing.

Shelley DeWeerdt Hintz:

So I started out... As a kid, my mom was a pediatric nurse, and she let me play with her textbooks. I did all her CEUs. She brought home stethoscopes. And so I grew up in a medical family. We were always talking about it. And I had originally thought maybe I’d go to school to be a veterinarian or a nurse, but then I, I was 18 from a small town, and I was anxious, and I was far away from home, and the first semester of college as a bio major was just hard. And so I picked up an English class, which writing had always been just something I loved to do, and then I fell in love with it in school. And that was the time, you know, where everything was different in college than it is today. You were very encouraged to just follow your passion, and you would be able to find something to do, and it was going to be no big deal, and that, you know, a BA would open doors for you. So, you know, sure, go switch to English and writing. I loved it. Had a great time. Towards the end of it, the housing crisis happened. So I was going to have to get creative, but I had originally wanted to move to Des Moines with my ex-husband, and he was in pharmacy school, and I love politics and history, and I really wanted to write grants and work at downtown Des Moines, and that’s where the MPA came from. And then the housing bubble broke. So my first job, I was a collector team lead for Wells Fargo. It was...

Joshua Doležal:

I remember that.

Shelley DeWeerdt Hintz:

...not writing at all. And did that for a couple years because you got what you could get a job doing at the moment, and then moved quite a bit with my husband. Eventually ended up purchasing a pharmacy in small town Iowa. So not anything to do with writing, but it was a very, you could either teach, like, elementary school, middle school in the area, or you could have like a small business. And so my ex-husband was the pharmacy guru, and I managed everything else of that pharmacy. But so I, in order to do that, I got my pharmacy technician license.

And then when I decided to leave my ex-husband, I went to Cedar Rapids because that was where I had my horse and all my friends were. So it was 2020, it was the pandemic, and I needed to be able to pay my bills right away. And so I got a job at the hospital I work at right now as a pharmacy tech because I had that license. They needed people. People did not want to come work in a hospital at that time. So I started there and it was amazing. Like, I was bringing all sorts of meds upstairs, and they were also asking for help from non-nursing staff to help answer phones and walk patients, and it was all hands on deck. And I’m the crazy weirdo who watched all that happen and was like, I want to do that. And it sort of reminded me that I did want to do that when I was a kid.

And then when the divorce was finalized, obviously I was supposed to be getting some money from it, and it was all worked out, but I... Something in my gut told me that I shouldn’t count on that forever. And my entire world outside of work was around my horse. And I rode, I was always out there. That’s my people. And my horse is very expensive. And without the money I was supposed to be getting through the divorce, I was never going to make enough money to pay my bills and pay for my horse on a pharmacy tech job.

So something just told me I just needed to do something that was going to make it so I could keep my horse even if my ex-husband flaked. And I decided to go back to school as an adult. I worked full-time, went to nursing school full-time. Don’t recommend. Not the most fun. But I got a lot of scholarships, a lot of grants because I was an adult and I was very, very low income at that point in time because of the divorce and all the craziness. And so I eventually ended up not having to pay for anything. And just slogged through it. And wouldn’t you know it, guess who flaked? Right about the same time I graduated, so. I was very happy that somehow graduated nursing school, worked full-time, was valedictorian of nursing school, which is weird. Now I can pay for myself and my horse.

Joshua Doležal:

Thanks for telling that story. You know, I’m still kind of feeling like we need to make a case for the humanities, and what you’re telling me could be the story of anybody from a small town who grew up with a good work ethic, right? Has nothing to do necessarily with English. But I’m curious if there’s anything about the humanities that added to your farm ethic that you grew up with that was useful, like being able to know yourself, teach yourself things. Maybe I’m grasping for that, but was there a connection between English and that path for you?

Shelley DeWeerdt Hintz:

There was, in that nursing school is hard and there are a lot of threads you have to tie, a lot of information you have to synthesize that they are not going to talk about in class. And you’re in class from like 8:00 a.m. to 5:00 p.m., and then it’s just, there is so much information, and my classmates, it’s notoriously one of the hardest undergrad degrees to get, and my classmates who were straight out of high school, had never gone to college before, very much struggled keeping up with it. The ability to sift through what I didn’t need to pay attention to, to like synthesize information really small and make things easier to myself, was something that I learned at Central. Being able to, like, go through large volumes of text and get the really important stuff out of it.

And I use all of that now quite a bit because I’m like the point person for all of my patients, so the doctor isn’t going to go over their discharge instructions. The doctor isn’t going to, you know, they will contact maybe a consultant a little bit, but I’m kind of the person who ties it all together for a patient. I figure out what’s missing. I figure out what they don’t understand. I figure out who, this person needs to talk to this person, and this person needs to talk to this person in order for them to be able to go, and I have to ringlead all of that. So it’s really helpful because I can sit down with a patient and synthesize an enormous amount of information and make it into something that they can actually do something with when they are not healthcare at all. They can go home and take care of themselves without me there. And so that’s a really big part of what I do, is to get them to the next step, whatever it is, and get all these different people to work together when they don’t talk to each other, see each other, all kinds of ring leading so that this one patient with 20 different sides goes from point A to point B safely.

Joshua Doležal:

So all those long reading assignments actually did pay off.

Shelley DeWeerdt Hintz:

Yeah, a little bit. Yeah.

Joshua Doležal:

What do you see as a nurse, Shelley, that you think doctors don’t? What’s a view from the trenches that doctors aren’t really aware of?

Shelley DeWeerdt Hintz:

I see the, we all see the ugly side of healthcare. We all are part of it in different ways. We all see and get very angry about healthcare disparities and insurance hell and all the different problems that are there. But I’m very with the patient all the time in a way that a doctor doesn’t necessarily see. So a doctor, I’m messaging, I’ll request, you know, like, I hope I don’t gross anybody out, but, yeah, get medical.

Joshua Doležal:

Go for it.

Shelley DeWeerdt Hintz:

I’ll message a doctor because my new patient has C. diff, and it is a never-ending cleanup, and we need a, we call them, the professional term is a fecal management system. But I need the order to be able to do that, and so they’ll put in the order and I do that. So I’m going to be the one that’s in there in PPE cleaning them up, setting them up, turning them, looking, talking to them, trying to make them feel like a human while I’m doing it, trying to make them not embarrassed about what’s happening to them. And then the doctor comes in and, you know, says, oh, your labs look great and, um, we’ve got you on Vanco and all these things and you’re doing better and da da da da da. And then moves on to the next 50 or 60, however many patients they have to see that day. And I stand there and listen and then the doctor leaves and the patient looks at me with this blank stare, like blank look because they didn’t understand anything the doctor just said. And I explain it to them. And so I’m more of the human side a little bit. I get dirty. I explain. I smell all the things. I do all the stuff. So it’s a slightly different world.

Joshua Doležal:

Can you give us an example of the disparities you’re talking about? Things that you would see that maybe doctors wouldn’t.

Shelley DeWeerdt Hintz:

When you’re with a patient all day long for 12 hours, you kind of get to know them personally a bit. Depends on if they’re sedated or not, but you’ll talk to them. You get to know what their home life looks like, what they, you know, the reason they’re there, why they may have ended up in this situation because of some sort of economic hardship and it’s not really that they don’t care about their own health. They can’t do something. Or you get to know them and the reasons behind everything and you know them personally. So all of that information that you glean from hanging out with them and making notes on them as people, you take the really important things from it and you forward that to the doctor and tell them, like, I really think they’d benefit from whatever. And so doctors will pick up on that, but patients are really, really, really good about, like, not telling their doctors the truth. And then I have to sort of figure it out surreptitiously, and so I will interact with them in a way that the doctor might not and get information that is actually possibly more helpful than what the doctor is going to get just because I’m with them for 12 hours and I can wear those walls down a little bit in a way that a doctor can’t.

Joshua Doležal:

I don’t know if this is a fair question, but it sounds to me like there’s maybe a class divide between patients and doctors, but not between patients and you, or at least the perception’s different. Is there a kind of socioeconomic factor there that sort of gets in the way of the real medical history that’s kind of shame-based, whereas if you have a caregiver that they see themselves in, then there’s less resistance?

Shelley DeWeerdt Hintz:

I think there’s less resistance just because, yeah, I mean, they do assume that I’m probably closer to them than the gap between them and their doctor. But also there’s a sort of an assumption that, you know, well, the doctor doesn’t have to do all these things with me, and so you are going to be more of a person like me than they are. And so they try to put on a really good face for a doctor in a way that they don’t for me. So I’ll see. And they still will put on a good face for me, so it does take a lot of effort to get to what’s really going on. Sometimes it doesn’t come out right away, sometimes it doesn’t come out at all. But generally they’ll feel a little like the divide is greater between them and their doctor than it is to me. But some doctors are much better at bridging that divide than others. There are some that older ones have a much harder time of bridging that divide. Younger doctors coming out are much better at it. So we have quite a few doctors that are significantly better than others at making patients feel comfortable and opening up and talking to their level in a level of healthcare information that they can understand. But it depends on your doctor.

Joshua Doležal:

One of my guests earlier in the series was Michael Stein, who has a book that’s just an oral history basically of all of his working class patients and told in their voices, largely, which is a good example of an attempt at least to make space for that.

So before we move on, forgive me for chewing on this like a bone, but poverty, especially in a place like Iowa that has gone downhill economically even worse, you know, since I moved away, but definitely was visibly deteriorating while I lived there. How much do you think poverty plays a role in health outcomes? What are some specific examples of that that you’ve seen beyond the usual ideas of addiction or, you know, meth or something?

Shelley DeWeerdt Hintz:

Sure. I mean, we see addiction and meth, but we see all kinds of drug use. But we, being as I’m in a hospital that is very large and well-equipped, we will get a lot of patients brought to us from hospitals around the state that can’t take care of whatever is going on. So we’ll see a lot of people from other hospitals transported for care with us because the other areas of the state don’t have the money at all to take care of what is a relatively normal situation. You’ll see that, and we will see a lot, a lot, a lot of patients who do not understand how their poor diet, their just their lifestyle, which is directly tied to poverty, is making their healthcare outcomes much worse, and they aren’t able to access the same kind of services and food and medicine and everything that would lead to a much better health outcome than somebody who might live in Des Moines or downtown Cedar Rapids or, you know, have a much better economic situation. And because of where we ship all of our patients in from, I’ll have a lot of patients that are very wealthy, and I will have a lot of patients that, you know, might be coming from the Meskwaki casino area, like the reservation over there. They might be coming... They’re from all over. And there’s a definite, definite difference in healthcare, like awareness of their what’s going on and how they can help, and limited access to anything, depending on where they come from.

And yeah, there’s the... I drink only bottled water, and we’ve switched over to other sources than tap water because the cancer rates are insane. I have seen so many very young people, adults, but very young adults getting really, really bad cancers lately. So it’s a scary place to live.

Joshua Doležal:

It’s been that way some time in the agricultural Midwest. Sandra Steingraber has a book, Living Downstream, that was published, I feel like at least 20 years ago, 15 years ago. And, you know, she is a cancer survivor, and everyone in her family was, which would seem to, you know, bolster the genetic kind of cause, except the catch is that she was adopted. So, you know, the environmental causes of cancer in the Midwest, especially around industrial farmland seems to be kind of a long history, but maybe getting worse.

Shelley DeWeerdt Hintz:

We’re also getting, this year especially, and I’m sure a lot of other states are dealing with this, but we are, all of the sort of small towns around this metro area are getting inundated with data centers. And a lot less access to water.

Joshua Doležal:

So that’s compounding the problem.

Shelley DeWeerdt Hintz:

Yep.

Joshua Doležal:

I hadn’t thought about the data center / farmland kind of one-two punch there, but that would be something to research more for sure.

Shelley, I’m curious if you’d be willing to talk a little bit, pivoting here back to your personal story, because I know that part of your journey away from college and some of the challenges you dealt with even during college, you know, there were limitations that you faced. Like I remember taking a class on a field trip and, you know, you had other plans, and I learned later, you know, years later when you were telling me some of your story that there was actually kind of a medical reason why you couldn’t come along with us.

So you were misdiagnosed for many years and then in early adulthood you had an ASD diagnosis, autism, and that really kind of changed everything for you. So can you tell us a little bit about what led up to that and why that was so important and significant for you?

Shelley DeWeerdt Hintz:

Yeah. My family, like any Midwest religious conservative Christian family, didn’t really believe in mental health care when I was a kid, teenager. I have notes in my baby book about, I was three I think and in a preschool and somebody made some noise and I ran from the preschool and they had to go chase me down because I got scared and it’s a very autistic thing to do. And my mom did as a peds nurse bring me to the doctor and for whatever reason the doctor said, oh she can’t be autistic, she can already read. Because I was three and I could read. So we’re not going to worry about it. And so she just put it out of her mind, it was never real.

But it was always, there was something about me that made everything harder than it did for other people in a way that I couldn’t figure out. Interacting with other people, like making friends, just being a normal human was just more complicated and stressful. I had all sorts of sensory issues, and I just thought I was weird. And I’m just a weird person. My grandma used to tell, you know, people that I was her very special granddaughter. Like, be gentle to her, she is fragile. Which isn’t true, but I was living in a world that wasn’t designed for me. So I was different than everybody else. And when I graduated college, I had struggled socially. Like, I was very... I hardly ever left my single room. I was very anorexic. I was very depressed and anxious, and, like, I didn’t know why functioning as an adult was different for me than everybody else, and I decided, I’m an adult now, I can go try to figure this out. So I went and started this huge process of mental health doctors and visits and meds and this diagnosis, that diagnosis, and spaghetti on the wall and da, da, da, da, da.

So I think I was... It was probably about 10 years when my psychiatrist sent me to a therapist who actually spent more time doing testing than anything else. He only was a therapist for a couple people, but like hand-selected people that were interesting. And so that’s why he sent me there, I guess. I don’t know. And after the first conversation and me talking to him about what was bothering me and why this wasn’t working or that wasn’t working, he stopped taking notes and asking questions, and he’s like, let’s just test you. And okay. And the next week we did like a modified autism ADHD test for adults, which there isn’t a really an official test for adults, it’s just for kids. But yeah, I was 100% those things. And so as soon as I got those diagnoses, he got me off all of the incorrect meds. He cleaned my entire medical chart of all these things that were not real. I went on ADHD meds and like in a week I’m like, is this what everybody else feels? Like, is this, this is what you’re supposed to feel like? It was just like that. And I’m not going to say that it fixes everything. You still kind of have to learn how to work with what you have, but it started the process of being able to leave the house and be a normal-ish functioning human. So it changed everything.

Joshua Doležal:

Thanks for sharing that. So in a way, diagnosis is a story, and you were getting the wrong story for so many years, and then wondering why.

Shelley DeWeerdt Hintz:

I thought I was schizoaffective. I thought I had schizophrenia for, like, three or four years because I had like verbal stims in my head where I would, you know, like tics, and they diagnosed that as a schizoaffective thing. And no, it was just a mental stim that autistic people can have, and it wasn’t that I actually had schizophrenia. But I thought I did. And it really messed with my self-esteem.

Joshua Doležal:

Oh, so living in that story was disempowering, destabilizing in ways that living with autism hasn’t been?

Shelley DeWeerdt Hintz:

No. It’s, uh, oh, your brain is just wired a bit different, and instead of looking at things this way, you can look at it this way. Instead of, well, everybody does it this way, why don’t you try it this way, and you’ll be able to handle it. And it helps, and it gave me an entire roadmap to look at myself and my life differently, approach my challenges differently, and instead of seeing myself as flawed, seeing myself as different. And it was a way to accept myself better and, yeah, changed everything.

Joshua Doležal:

What do you think most people don’t understand about what it’s like to live with, or on the spectrum, live with ASD?

Shelley DeWeerdt Hintz:

It’s so varied. So my house is very autism friendly. So there’s me, my husband, probably on the spectrum, one of our stepsons, probably, and then the older one is a disabled adult. He’s level three autism, and then a whole bunch of other acronyms. So he only communicates with like Looney Tunes statements, and he gets all kinds of services, and so we run the full range in this house. And it’s such a varied situation where like it could be helpful for somebody and useful in certain situations on one side of the spectrum and incredibly debilitating on the other side. And you can be anywhere on that range. And it goes very hugely between Rain Man and it’s just there’s so much to it. So there’s no way of...

Joshua Doležal:

Yeah, I may be reducing it too much. But when you’re working in healthcare, you’re in an environment that is, you know, just kind of flooded constantly with sensory stimulus. I would think of that as a really kind of excruciating environment, you know? And yet it’s a place where you’re able to survive for 12 hours at a time. So how do you deal with that in ways that you weren’t able to in the environment as a college student? And also, is it ever an asset to you to have, you know, lived with some of these experiences when you’re dealing with patients?

Shelley DeWeerdt Hintz:

What’s helpful in the healthcare setting for me is that all these noises, I mean, they overwhelm all of us. We all get all these alarms. We are all stressed out about it, and it’s nice that everybody understands when you’re just, like, alarm fatigued. But what’s helpful in that situation for me is that this is the sensory overload that I have chosen and put in a box. It is not a surprise. I know what I’m going into. I know what the alarms mean. They’re useful to me. They’re not random. They mean something. They’re communicating. And so they’re exhausting, but they’re also easier to manage in a weird way than sensory outside of the hospital, because they’re kind of a comforting, well, that noise I’m hearing is a good noise, and that noise I’m hearing over there is a bad noise.

But like, you get a box that you’re very comfortable with and the world outside of the hospital doesn’t have that box, if that makes any sense. You don’t necessarily know what the noises mean, what the sounds mean, what the... It’s all, you gotta figure that out. So it’s a strange juxtaposition, I guess.

But in healthcare, it’s actually helpful for me because first of all, as a critical care nurse, I look at a patient less as a human and more as an incredibly complicated puzzle. And it’s a gift and a curse sometimes that I can look at a patient and compartmentalize them in a way that non-neurodivergent people struggle with. I can walk into a patient, a trauma situation, somebody spiraling the drain really, really quickly, and a newer nurse or someone who knows that person is going to have a lot more of a struggle compartmentalizing and dealing with that situation, whereas I will be able to walk into it and instead of seeing a human, seeing that you feel compassion for, which you do, but my brain immediately goes to this, then this, then this, then this. I need to fix that and that and that and that. And it’s easier for me to put my game face on, which is a very ADHD thing to do, but to like lock in and start making choices what needs to happen, and be able to push the thought of a human to the side in a way, because I always struggle to connect with my patients and because I’m not the most socially adept.

But in that situation, that’s what they need. They need me to lock in and deal with a problem. And I can deal with a problem. I’m not necessarily the best person to comfort you. I admit that about myself. But if you’re dying, I’m the person you want in the room. So I can do that.

Joshua Doležal:

Yeah. Interesting. I’ve read somewhere, I can’t remember the source, that there’s a predominance of neurodivergent people in science, and I would imagine that carries over into medical science. And the context of this was a nice phrase, which is instead of saying that vaccines cause autism, it’s more likely that autism causes vaccines because of that high representation of people with autism in research in particular. So there seems to be this misperception almost of... And it’s, I’m not trying to downplay the challenges you’ve gone through, but it sounds like this is really an asset in certain ways, in certain contexts. But the public story is that this is a disability. And I’m curious how you respond to that term.

Shelley DeWeerdt Hintz:

In the neurodivergent community, disability is really, that’s a hot word. You can make people very mad. And I think it goes back to the spectrum thing. I know that the name Asperger’s was not a good name. There were reasons why we shouldn’t have used that word. But putting people just as autism spectrum is a very hard concept for laypeople to understand because, well, they have autism, and you have one picture of autism, and the name sort of makes that harder. But autism is so many different things and so many different patterns, and every single autistic person is different. You meet one, you say you’ve met an autistic person, you’ve met one autistic person. You haven’t... It is such a... Where something might be very helpful in certain situations and they might only experience difficulty with XYZ, it might not function as a disability for that person because of what job they’ve chosen and the circumstances of their childhood where they got all the care they needed, and they got all the special ed and they’re really, really great at math and their parents could afford to send them. So like it’s not a problem for that person. But then you have someone like my stepson who until he was a teenager, like they had to put the locks on backwards so that he didn’t leave the house in the middle of the night and he goes to a dayhab. He’ll never work. He’s never like, he’s... We watch Blue’s Clues. My other books, we’ve got Blues and like... And he will never experience certain things. And so for him I would consider that a disability. Like, it limits his ability to participate in the world. And we do the best we can to open that for him, but it’s hard. And so for some people and in certain situations, it can be an asset, and in some people in certain economic situations, that same trait might be a disability because they don’t have access to the same things.

Joshua Doležal:

It’s really well expressed and nuanced. Thanks for taking a deep dive into that.

So let’s circle back to English here at the end. Shelley, I assume that you’re still a reader and make space for books.

Shelley DeWeerdt Hintz:

Oh, yeah. I have a great maybe hope of... We’re working on saving up for a house, working on the down payment, which is a very high bar, but I have high hopes of having a writing room again someday. And getting back into it.

Joshua Doležal:

Well, you have a Substack that has been kind of paused for a while. I assume because of your work schedule. So hopefully you’re at least making some time for reading, and I’m curious if you feel that there’s kind of a feeling, you know, I think among administrators and maybe even some students or parents sending their students into pre-med programs that the real stuff that you need to know is all STEM-based, you know, science and math, and that reading is kind of a nice to have but not a need to have for, you know, for medical training in particular. But I’m curious, if you were teaching young people interested in nursing, what would you want them to know before they entered the clinic? Would books be part of that? Or would it be, you know, mainly the STEM path that everyone thinks it is?

Shelley DeWeerdt Hintz:

For nursing school, you have a great deal of pre-reqs you have to do before you’re even allowed to do nursing. And I don’t know that without the ability to read well, to synthesize information, to study in a very complicated way, you’re never going to make it. Like, you will drown in the information. You will never have enough time to process it all. And so reading is a necessary... Like, AI is never going to make that happen for you.

I saw a whole lot of students try to use those tools to try to make everything easier, and it only would really give them this sort of surface level understanding of the topic, and then nursing is not surface level. Every patient is a complex mess of bits and pieces and numbers, and one thing will mess something over here, and you need to understand how to manage a huge web of information to make the right decisions for them.

It’s not cut and dry. There is no... Nursing tests do not have right answers. They do, but they don’t. They have the best right answer, and anybody who’s been in nursing school knows the horror of, this is the right answer, and this is the right answer, but which answer is more right? And without having some humanities background, you will never be able to figure that out. It will make no sense. You have to be able to understand nuance and lots of information and the reason why something is better than others.

Joshua Doležal:

And real quick, would there be any books that would prepare people well for nursing? Particular kinds of memoirs or novels that would be appropriate?

Shelley DeWeerdt Hintz:

I loved reading before I went into school. Basically any book that gets into, like, the nitty-gritty of something, any essay that... Let’s see. There was books about what it was like in New Orleans during Katrina. I forget the name of the hospital, but there was that. There was just books about cancer treatment and how awful, like all sorts of healthcare books that are technically fiction or essay material that don’t sugarcoat things is really helpful. But I think there’s something very, very helpful about being in a critical, any sort of writing literature class where you have to critically think. And I don’t necessarily know that STEM classes are going to teach you how to do that kind of critical thinking. They will definitely teach you how to decide what to do if you have in front of you the patient’s labs and their vital signs and things like that.

But I can’t tell you the number of times I’ve walked into a patient’s room and their chart tells me they should be dead and they’re not, and I don’t know why. And I can’t tell you the number of times I’ve walked into a patient’s room where the chart says they should be fine, and they are very, very much not fine, and you have to figure out why. And I don’t know that I would have ever really been able to figure any of that out without humanities education.

Joshua Doležal:

Yeah, it’s probably a both/and there. Well, we’re almost out of time, but I see we have one listener question finally. So Julia is asking, from your perspective and experience, what are some of the biggest challenges today facing health and health services in rural communities?

Shelley DeWeerdt Hintz:

I’m going to say absolute just lack of access. They don’t have anything. We have a great deal of telemedicine that is very helpful. Patients are able to go to clinics and talk to a doctor virtually. That’s very helpful. But access to adequate in-home healthcare services, having to drive forever for physical therapy, there’s a food desert. There’s a, you know, they can’t afford a ride to their appointments. Just they don’t have access to things. They don’t have a bus they could get on. They don’t have... There’s nothing there to help these people take care of themselves even if they wanted to. And on top of that, the population in Iowa is aging at such a rate that there isn’t enough people to adequately provide those services because people don’t graduate, and they don’t want to stay. We nurses are... Iowa’s the only place in the US that pays worse for nurses than Iowa is Guam, so we’re the forty-ninth lowest. And so a lot of people will graduate, and they will either work at the university because you can see everything there, or they will leave. We’re close to a bunch of states with much better systems. So there’s just not, what people need just doesn’t exist in the places and quantities that they need it.

Joshua Doležal:

Yeah. Well, there’s this kind of American idea that, you know, you retire to an acreage in the peaceful countryside, and if that means a two-hour drive to the hospital in your later years, that might not actually be the romantic picture it seems.

Shelley DeWeerdt Hintz:

Yeah. There are, we love to be outside and hike, and we go on drives all the time, which is tough with the gas prices. But we love to just look around. Iowa’s beautiful. I love to travel, and there are so many places I would consider more beautiful, but there is a very uniquely Iowa beautiful. And so we are out there, and every year I see more homes that are empty and farms that are empty and towns that two years ago were busier, and that’s empty, that’s gone.

Joshua Doležal:

Yeah. Well, I wish you all the best in your work and for this house and for your writing room. Fingers crossed you’ll be back at your desk writing the memoir that I can’t wait to read.

Shelley DeWeerdt Hintz:

I hope to get a chance. That’s my retirement plan, is I’m going to write and I’m going to have butterflies and hummingbirds in the backyard.

Joshua Doležal:

Well, we’ll wish for that to come true. Shelley, thanks for joining me today, and thanks everyone for being here.

The Recovering Academic is made possible by the support of readers and listeners just like you, so thanks again. Next week I’ll speak with Dr. Sandeep Jauhar about his latest book, My Father’s Brain, which is a memoir about his father’s struggle with Alzheimer’s. Dr. Jauhar is a cardiologist and the author of several books, Intern, Doctored, and Heart: A History, and that conversation will be live on Thursday, June 25th, at noon Eastern.

So that’s the thing not named for today. Thank you, Shelley, for joining me, and see everyone again next week.

The Recovering Academic 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. It's all free to read, and it stays free because readers choose to support it. I also give 5% of what I earn here to local charities.

Read more essays on the medical humanities ⬇️

“What we now consider modern diagnosis, and the literary genre of detective fiction, arose around the same time and mutually influenced each other. We cannot understand the way we do diagnosis today without tracing this prehistory.”

— Dr. Lakshmi Krishnan

Today, on “The Things Not Named,” I speak with Dr. Lakshmi Krishnan, physician, scholar, and director of medical humanities at Georgetown University, on why diagnosis and detective fiction grew up together, and what doctors and patients lose when humanities is stripped from medical education.

Below is an edited transcript of our conversation on Substack Live.

Transcript:

Joshua Doležal: Welcome back to The Things Not Named. I’m Joshua Doležal, and my series this year is based on a famous phrase from Willa Cather, who said that it’s the presence of the thing not named that gives high quality to literature. 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 Dr. Lakshmi Krishnan, and she’s the first in the series to talk about teaching, so that’s going to be a real treat. Lakshmi is an assistant professor of medicine and director of medical humanities at Georgetown University. Her work spans history of medicine, literary studies, and clinical research. She writes about how doctors know, how they think they know, and what impact those stories have on patients’ diagnosis and research. Her scholarship appears in journals such as JAMA, The Lancet, and BMJ Medical Humanities. She’s also been featured in STAT News, The History Channel, and Voice of America. She publishes The Workup with Dr. Lakshmi Krishnan, a Substack on medicine and culture, and is writing a book for Johns Hopkins University Press, which we’ll definitely talk about, titled The Doctor and the Detective: A Cultural History of Diagnosis.

Lakshmi was born in Bombay, India, and is a proud immigrant. Her childhood was spent in England and most of her young adulthood in the southern United States, quite a few different regions there, and she adores all things theater, swimming, curating playlists, and weekly trips to the DC Public Library. So welcome, Lakshmi.

Lakshmi Krishnan: Thanks so much for having me. This is great.

Joshua Doležal: I can’t wait to dig into all of this. I’m fascinated by all of your personal interests, but I wanted to start with your origin story. So fascinating. I grew up in Montana, went to college in Tennessee in the South, did my graduate work in the Midwest, in Nebraska. I spent some time in South America. I’ve also been to Prague a few times. So I don’t know that I’ve been shaped by all those places quite the same way as you, because these were formative years for you. But I’d like to know more about your story. You’re from Mumbai originally, but you grew up in the UK and the southern US. So how have each of those places contributed to who you are now and how you think today?

Lakshmi Krishnan: I think it’s interesting, because at first glance, these are places that don’t necessarily have much in common. So yes, I was born in Bombay, now Mumbai, but I still have the pre-90s, very colonial name in my head. But that was really formative. I was born there and was raised for a good chunk of my young childhood, and then actually went back to part of elementary school there in a joint family. So there’s a lot of storytelling. There’s a lot of trading health stories. That’s very much in our culture.

I think the things that you observe when you’re a small child and are embedded in are at work often subconsciously. But I still have very strong memories of our family doctor who paid house calls and would come over with this beaten-up leather bag, and lived down the way in this particular neighborhood in Bombay. He was very much a local character, very much a pillar of that neighborhood. He’d come over and do all the checkups, like the young kids — it was a joint family, so cousins, aunts and uncles, parents, then the grandparents. The grandparent visits usually took longer because they had more things going on in terms of health conditions, and he would get plied with cups of tea. I just remember the storytelling that was such a big part of that.

And then we moved to the UK and lived in four or five different places in the span of about four years. So even within the UK, broad regional variation, like London to Salford, which is just outside of Manchester, in the north, and then back down to Nottingham, which is in the south of the country, or kind of the Midlands, I suppose. And when you’re the kid who’s always new in school, who’s always finding their footing, I think that part of my experience was very lonely in a lot of ways. I was an only child at the time. My sister was born later, so I’m no longer an only child. But books were a huge — they were a constant and an anchor. And so I think that kind of reading habit, and reading as a source of solace and comfort, and knowing that I wasn’t the only person who had been an outsider in different places, was really big.

And then we moved to the US, and we moved to East Tennessee, actually, which was new again. So I guess, as such retrospective narratives go, if I have to assign some coherence to this — my interest was always in connecting across these experiences, even if on a surface level they seemed, southern England to the southern United States to a huge, densely populated city in India. Finding points of connection and commonality was, I think, very important for my internal coherence as a person. And I guess that translated in some way to the work that I do, or to the paths that I followed. Things that seem on the surface disconnected might not be, and you might actually find really surprising connections. So yeah. I could go on, but I’ll stop there.

Joshua Doležal: I went to college in Tennessee, in East Tennessee actually. So I’m curious — I was in Bristol, the birthplace of country music. In fact, not Nashville, but Bristol. And so I had a crash course in barbecue and NASCAR and all kinds of things there. But where were you?

Lakshmi Krishnan: Johnson City.

Joshua Doležal: Johnson City. Wow. Pretty close. What years?

Lakshmi Krishnan: We were there from 1995 to — my folks moved to North Carolina in 2021, so a significant — I mean, I went to middle school and high school in Johnson City. Then I left. I went to North Carolina for college. But that was, and is still, home in a lot of ways.

Joshua Doležal: How interesting. I’m sure much older than you. I was in college there at that time. I started college in ‘94 and graduated in ‘97, so we overlapped, very close proximity, for two years without knowing. So interesting. I don’t know if you believe in coincidences, or plans, but that’s pretty remarkable.

Lakshmi Krishnan: So interesting. The Tri-Cities.

Joshua Doležal: Yeah. I played baseball there, and in those days funding for athletics was a different thing, especially at a small school. So we did fundraisers like go clean the NASCAR raceway after the Bristol 500. Lots of character-building experiences like that.

So, Lakshmi, you have an MD and a PhD in English, which is kind of an unusual combination. So I want to talk about those two degrees. I’m sure you had lots of people telling you not to get the PhD in English. Maybe I’m wrong about that. But one of them is the degree that everyone pushes for down the STEM path, right? Go be a doctor. The PhD in English is the one that everybody’s like, well, what can you do with that? It’s not practical. So when did you know you wanted both? And what was the through line that connected them for you? And am I right or wrong that people questioned the second one?

Lakshmi Krishnan: You’re absolutely right that people questioned the second one. I’ll answer the first question first. So it was kind of an odd and winding road. In undergrad, I was an English major and I was pre-med. I went to Wake Forest for college, and it was a very liberal-arts-heavy curriculum, which was wonderful. We had divisional requirements — you had to take philosophy, some kind of theology, you had to take a couple of lit classes. That kind of didn’t matter to me, because I was interested in those courses anyway and would have taken them anyway, but it was nice to have it as part of the structure. But at that time, majoring in a humanities field and being pre-med was very atypical.

I think then, as now, there have been critical mentors or teachers or professors who’ve been supportive and who’ve believed in this nontraditional curriculum, this nontraditional path for me. And that was the case at Wake. I had a few English professors who either were very interested in STEM or were medical humanists, and I didn’t even have the language to articulate that at the time. They were sort of like, you can do both of these things. If you’re interested in them, you might have to take extra — you might be on an overload a couple of semesters because of organic chemistry lab or things like that. But generally, I felt like I was well supported.

It was really post-undergraduate that I got more pushback. So the plan had been to go to medical school. I didn’t really know how to make sense of a PhD in English plus medical school. But really, it came down to funding, which is the frank and blunt answer. I got a scholarship to go to England to get a master’s. And at that time I was like, I could get a master’s in a STEM field, but I’m going to be doing that in medical school. I’m going to be doing the science thing. I love literature. When will I again have this opportunity? So for me it was — maybe my scarcity mindset was helpful, because I was like, I’ll never again get the chance to be funded to do this work.

So I did the master’s, and the opportunity arose to extend the funding and to apply for a DPhil, which — I was at Oxford, so they strangely don’t call the PhD a PhD, they call it a DPhil. And I just kept trying, trying. It’s not the most retrospectively coherent story, but it really was that at every step I made a decision to continue on. And I was lucky enough to get the support that I needed. Had I not been able to get funding — and I encounter this with my students often, sadly — I think I would have just gone to medical school, and this would have been an avocation. And that would have been wonderful, but I certainly would not be on the path that I’m on now.

Joshua Doležal: Let me push against it a little bit. So that’s all doors opened, and you followed them. But the skeptics who said don’t get the PhD in English would assume that you’re doing basically nothing with it now. So that is true, obviously, because of the work you do in the medical humanities. But can you help someone who’s skeptical about the humanities in general understand how that degree has actually made you better at what you do, or opened opportunities even within science and medical science that you wouldn’t have otherwise had if you didn’t have that training?

Lakshmi Krishnan: Yeah, absolutely. I realized I didn’t really expand much on what the skeptics said. So the skeptics, yeah, were more post-undergraduate, and it was people saying this is a large time investment, this is kind of ornamental — it’s a luxury to read and be able to spend long hours in libraries or archives poring over historical artifacts, but how is this relevant and important, beyond self-gratification?

So it’s dictated absolutely everything on my path in medicine. Certainly the kind of doctor I am, and I mean that both literally and metaphorically. I chose internal medicine, which is a very cognitivist and narrative-based field in medicine, because of my humanities background. And many folks will know that we actually have a huge shortage of generalists — general medicine, general internists. So that’s a real public health and health outcomes need, people who are interested in that dimension of care. So I chose it.

My interest in context and history and interpretation, which came from a humanities background and a deep engagement with the humanities, got me interested in public health, in health services research, in all of these medicine-plus fields that show us and tell us that health and care and medicine do not end in the clinic walls or at the hospital doors. So that was dispositive in terms of career choices.

In terms of — I don’t talk about this often, because I think there’s a lot of great work out there on burnout and resilience in the healthcare workforce, and that’s not my area per se. But I certainly think for me it was, and has been, protective in terms of burnout. I always have this other thing from which I derive meaning and purpose, and an ability to zoom out from the very challenging day-to-day of clinical medicine, because you can get really focused on the trade.

And then, in terms of my own research and writing, coming back to this idea of connection and entanglement, and things that don’t seem like they’re connected being connected — you’ve written on this, I think, in your Substack, the body as text and textual bodies. I read literature differently, and I interact with patients differently as a result. I could say more, but that’s such a rich question. I have so many things to say. It’s fundamental to who I am, how I practice, and what I write and teach.

Joshua Doležal: I didn’t know that about generalists, but that’s an interesting argument to make for being a little bit more adaptable and agile as an intellectual.

When I’m writing about all this now, it’s so different from when I was an academic, because in an academic paper you have to strike a theoretical pose, and you have to have this very difficult kind of language to show that you’re being rigorous. I’m writing much more accessibly about it now. And that leads into my next question, which is what I wrote about last week, mainly about your op-ed for JAMA. You co-authored this with two other doctors, and you’re advocating for the benefit of clinician-scholars, really, to the university. So this is kind of an in-house argument — this is what they bring in terms of different research outcomes and so on.

So there’s that case to be made, but there’s also the non-academic case for investing in the humanities, or for interdisciplinarity. So I’m curious how you code-switch between those two. When you’re inside the university, in the power structure with deans and deanlets and VPs and other gatekeepers, how do you advocate for the medical humanities? Because you started a program that you need to sustain, and that requires resources and funding and buy-in up the chain of command. But then there’s maybe the parent of a student who takes a required class they think they shouldn’t have to take. There’s a lay audience that needs to be convinced too. So how do you convince people outside the university that humanities education is for more than just empathy, more than just bedside manner, but actually produces better doctors?

Lakshmi Krishnan: There’s very much the code-switching that you mentioned. So I’ll talk about the ROI, return-on-investment conversation first, because those are frequent. And the JAMA piece — so the two other authors, they’re both mentees, or former mentees. One of them actually is in law school doing work on health policy. And the other is a fellow now in pulmonary and critical care, but remains a dear colleague and started training in medical humanities when he was actually a medical student in India, and then was in DC for residency, and that’s how we connected. I only mention that because of who the authors are. That was very intentional, especially for a publication like JAMA, which tends to hyper-focus on clinicians or clinical research. I wanted to make the point, in terms of form following function, that these are former trainees, these are mentees that are leading this short paper, but there’s a demonstration here of how they’re carrying it on in their educational and training pathways after their time at Georgetown.

But that was very intentionally written as a kind of empirical, how do we make the case for this that pushes beyond the enrichment model of medical humanities in health professions education. The enrichment model has had real benefits, but I think that is still the prevailing understanding of health and medical humanities from the standpoint of a clinical audience like JAMA. It’s like, oh, this is a nice thing. It might be a nice additive or supplement. It gives burned-out doctors a break. It helps us be more empathetic, et cetera.

We really wanted to make the point that medical humanities and health humanities need to be integrated into the clinician-scholar model. And that is a model that has deep historical roots. The NIH has a medical scientist training program, so we use that term very intentionally. Clinician-scholar signifies MD plus PhD in biomedical sciences, basic sciences, sometimes epidemiology and public health, but it has rarely signified humanities and/or social sciences. So that was the main purpose of that paper — to say, hey, the humanities, while the form that our research might take is not necessarily in graphs and charts, though sometimes it can be, I mean, as we know — it’s not the traditional empirical model, but here are all of the ways that humanists have made contributions to an expanded idea of scientific research.

And I think one of the points we made too was the conceptual work. Before you can empirically test something, where does this come from? Where do these ideas come from, basically? And that’s the humanities. And I think that’s something — I’m sure you have many thoughts on this too — but the invisible, I always joke about the invisible labor that the humanities does in society. Where do you think these ideas come from? When we talk about humanistic thinking, this is what we mean: conceptualization and context and interpretation. So I would say that article is pretty reflective of some of the arguments I’ll make to administration or higher-ups. Conversations about funding nowadays are very pointed, because it’s hard to find funding, external, extramural grants, things like that.

Joshua Doležal: Can I say back what I think it is?

Lakshmi Krishnan: Yeah, go ahead.

Joshua Doležal: So what I hear is, the clinician is a practitioner — more than a technician, but somebody who’s in the clinic seeing patients, actually practicing medicine. The scholar is someone who’s generating a body of new knowledge. That’s what scholarship should be. You’re asking questions, you’re answering them, but they should be novel questions. They should fill gaps in what we know about things. And traditional scientific research is discovering new drugs or new treatments. It’s much more about hypothesis testing within the physical environment. Humanities research is more about the epistemic or the existential. It’s the questions of ethics, or the question of meaning, much more the why behind things. And so if you never ask those kinds of questions, you never get certain answers. And that’s why we get things like Facebook having these huge problems with disinformation, because the platform was designed with no attention to human nature. Whether human nature is good or evil was never a question that was asked when building that tech. So you can get really myopic in scientific or technological research if you never ask the epistemic or the existential questions about why, what does it all mean, what’s the moral underpinning of it.

So that, to me, is a case that you make within the university for funding — that diversifying research, and not just streamlining it, is the way to go. But I’m curious, for the outside person who doesn’t know anything about the guts of the university and all those calculations — why would this be worth investing in? Why would it be worth tuition dollars spent on required courses? What’s the benefit?

Lakshmi Krishnan: Yeah. So I get this question from parents at panels, right? We’ll have a panel featuring medical humanities, and parents are like, well, what is my child who minors in the medical humanities going to do with this? What’s the value?

And some of these are less academic arguments, which I think is great. It’s great to have a chance to articulate these. Some of it is just, they’re more interesting people. Bluntly, they are more capable in interviews. They stand out, making the argument for job security and residency applications and those sorts of things.

But the really holistic way I’d answer the question, Josh, is I’ll say, what kind of doctor do you want? We all see healthcare providers. I’m using “doctor” loosely to encompass — I think this is important for any healthcare provider, allied health professionals, et cetera. Do you want a doctor who’s aware of — and some of this is so local too. In DC, we have a local context of hospitals that have shut down. There’s a whole history of Black-run hospitals and health clinics that used to exist a generation ago that don’t. My patients are like, I want a doctor who knows about that and understands why I am responding to a treatment pathway or a diagnosis or adherence in this way.

I find that leaving it, putting the question back with someone who’s outside of the academy — because, as Sontag said, we all have this dual citizenship in the kingdom of the well and the kingdom of the ill, and somewhere in between. It is a universal experience. And frankly, most people have a horror story too, of interacting with a doctor or the health system. So asking it in that way — I don’t know if that’s a cop-out in terms of your question, but I just find that that opens up a much more interesting and productive conversation. Because rarely is someone then going to respond, oh no, I don’t think my doctor needs to be aware of history, or how to have a conversation, or how to interpret.

Joshua Doležal: I’m still a scholar, but because I’m a Substacker, I occasionally try to be a little bit more of a provocateur. So there is a real cost to not knowing history, right? It can be enormous. So, for instance, some of the things that are going on in the Defense Department in the US seem to be completely ignorant of earlier chapters in military history, for instance, what works and what doesn’t. And this is me speaking with some hyperbole, but when you have someone like Pete Hegseth saying prayers about violence and war, that’s someone who has never read Mark Twain’s short story “The War Prayer,” in which a stranger comes into this church where there are all these prayers about the young men going off into battle, and says, but there’s this hidden prayer — that when you pray this prayer, you’re also praying this other one, which is that you’re wishing that women and children be slaughtered, that their streets run with blood, all this stuff, right? That’s in the very prayer that you think is sacred.

So when you read literature and you have a sense of history, you don’t have to keep learning the same lessons again from the same old mistakes. And there can be a real cost-saving argument to that. Know your history, avoid these hugely expensive, decades-long mistakes. I’m getting political with that. But is that the kind of thing that would work for the Black history that you’re talking about as well?

Lakshmi Krishnan: Oh, I think so, yeah. I know historians of medicine tend to get a bit precious about being presentist. But I think this work has to be applied. And of course, the best historians of medicine have thought about relevance. It’s inevitable, right? We live in the time that we are writing from. COVID was, I think, an exceptional example of this, where the STEM advancements were there, the mRNA vaccine, the technological development. But then it was like, no one who had studied history of medicine or public health was particularly surprised that the implementation was so fractured and fraught and disparate. And again, thinking about underserved communities, no surprises there if you know something about pandemic history.

And the technologies may change, the media may change over time, but humans and human behavior — what is it? History doesn’t repeat, but it rhymes. There are rhymes. And so I think it is. I haven’t made the costly argument before, but I think that’s spot on. It is costly, and it’s costly in intangible resources too, like relationality and trust. There was all this hand-wringing over failures of trust in the health system, and those are grounded in historical — there have been histories and stories.

Joshua Doležal: And what’s the cost of that distrust? It’s enormous, right? You have measles outbreaks, all kinds of things that come from distrust. So a little investment on the front end, and a different kind of education. Can you show empirically that it prevents all of that? Maybe not. But you can show that there are these clear benefits, that when you understand the power of storytelling, and the power of storytelling to make arguments and connect people who are not experts to the heart of what scientific medicine offers — that is a trust-building technology.

Lakshmi Krishnan: It is.

Joshua Doležal: And it has enormous value, even if you can’t measure it all monetarily. And some of it is in risk avoidance, potentially.

Lakshmi Krishnan: Yeah. And I do see, without belaboring this too much, I do see it play out even on the level of the clinical encounter. I only see patients in the hospital, solely inpatient practice, so I don’t get the kind of continuity over someone’s life, or family’s lives, that a general practitioner might. But when I meet a patient, usually they’re in a hospital gown. They don’t have anything about them that is a reminder of who they are outside the hospital and outside of being a patient. And I tell my medical students and residents this all the time, and there’s empirical evidence on this. It doesn’t take that much longer to pull up a chair, if you can find one in the hospital, and sit down and ask someone, who are you? Who were you before you came into the hospital? Or even just, what do you do? The trust that that builds — and I’m not doing it for just some utilitarian building of trust, but truly, it’s selfish too. It changes our relationship, and it’s meaningful as a healthcare provider to have that conversation. But it completely changes the relationship, and my understanding of how this person might react to X possibility or X treatment or X context. And that, again, is that investment in story and narrative.

Joshua Doležal: So, Lakshmi, let’s say I enroll at Georgetown. I’d love to go back and be an undergrad again. And I get to take a class in the medical humanities in your initiative there. Walk us through one of those courses that you teach, maybe a book that you assign, and surprising discoveries that students who are immersed in STEM, or on the pre-med track, are awakened to as a result of that kind of course.

Lakshmi Krishnan: So a course I regularly teach is Introduction to Medical Humanities, which I generally teach as kind of themed. So lately, because of the work that I’m doing in my book, one of our themes has been medicine and mystery, or diagnosis and detection. And that draws students in, because they’re like, oh, Sherlock Holmes and Joseph Bell and Arthur Conan Doyle, this is interesting. And then there are all these other pieces to it.

But recently I revamped the syllabus for Intro, and added to it a book that’s a personal favorite. And I think it’s fresh, because students — we just wrapped the semester — students are really surprised by this book. Typhoid Mary by Judith Walzer Leavitt, the historian of medicine and public health. And it’s fascinating to teach it at Georgetown. We are a historically — well, we’re a Jesuit institution, and there are close and deep ties between Georgetown and Ireland. There are a lot of students who are either Irish or Irish remotely. When we talk about Typhoid Mary, they’ve heard of Typhoid Mary, but they haven’t heard of Mary Mallon, who of course is the figure. And they’re very surprised at what was done to Mary Mallon, like how she ended up quarantined, basically, on North Brother Island, outside of New York City, and lived out her life in quarantine, having only thought about Typhoid Mary as a shorthand for a patient zero.

And it was really great teaching it to these students who went through high school at the start of COVID, early college during COVID. So there’s a kind of relevance to these questions of public health and individual liberty. At what cost do we sacrifice individual freedoms for a kind of collective good? Leavitt is just such a careful but lucid historian. She writes for a public, a thoughtful general audience, which I think just makes it really fun to reread. And as someone who aspires to do that, I can’t believe what she’s able to do, and we talk a lot about that in class too. The sources that she’s able to draw from, and to narrate this as a story. And I teach a lot of literature as well, but this is such a literary piece of history of medicine.

So the students are thinking about how the Irish were viewed in early 20th-century America and New York, and immigrants, and women, and gender. And some of my students actually did really cool final projects, because they were so moved by the story of Mary Mallon and were left dwelling in the uncertainty of, well, would we still have done that? If she did contaminate and infect so many people and people were dying, was this the right move? And living in that kind of moral liminality, I think, is really good for them too. So I’m so glad that I added it to my syllabus. I’m going to keep teaching it for a while, because it was very cool to see how they reacted.

Joshua Doležal: Do you ever bring in alternative medicine or alternative practitioners? I’m thinking, when I taught a course in medical humanities at the University of Nebraska, I would have guest speakers like an herbalist. We would sometimes be reading Foucault and his idea that autopsy encourages doctors to cadaverize life, and that’s where the “I” — a kind of personality — came from in his view. So we’d go to a cadaver lab and test that theory ourselves. Do you do that kind of thing, where you’re looking at more than just the Western scientific tradition in terms of how medicine or health policy works, whether there’s any element of spirituality in it? Does that come in?

Lakshmi Krishnan: It has not. I have not brought that in. I haven’t brought in complementary medicine to my course per se, in part because within the medical humanities program, we have a bunch of different electives and opportunities for students to get that. But it’s not part of the mandatory core course necessarily. Where we focus on cross-cultural perspectives is more in the literature, in the fiction and poetry. I focus a lot on — we have detective stories, and this concept of the detective as being very doctor-authored, or the doctor as agent, and that is the pretext for the course. But we talk a lot about patient writing, pathography, poetry, like Bettina Judd’s collection Patient. So it’s more Foucauldian, in the sense that we’re thinking about power and agency and where different narratives locate that power and agency. But I haven’t had complementary practitioners.

Joshua Doležal: So that’s the word now — not “alternative,” but “complementary.”

Lakshmi Krishnan: I think so.

Joshua Doležal: I have to update my lexicon, I guess. Since you mentioned detectives and Sherlock Holmes earlier, this is really the subject of a work in progress for you. I know some writers don’t like talking about it for superstitious reasons, but The Doctor and the Detective is your title. So what burning questions are you trying to answer in that book? I have a follow-up about House M.D. that I’ll try to work in here. But what’s the main argument, and what are you trying to discover by writing that book?

Lakshmi Krishnan: The main argument is that, starting in really the late 18th to early 19th century, what we now consider modern diagnosis, and the literary genre of detective fiction — in the Western context, I should say — arose around the same time and mutually influenced each other. So the bolder statement, I guess, is that we cannot understand the way we do or enact diagnosis today without tracing this prehistory.

And the burning question I was trying to answer was when I was in medical residency — again, because I came to it having trained as a literary scholar. I looked at residency, and my own experience as a resident, which is the first time that you’re really in practice intensely. It’s not medical school, it’s residency. I noticed this metaphor that kept cropping up, which was detection, detectives. I was just really attuned to the metaphors on rounds. Let’s chase all leads. Let’s go for low-hanging fruit. Let’s cast a wide net. It was very CSI, forensic procedural. And then I went to residency at Duke, which is a kind of old-school Southern program, and there were these characters, these senior doctors who could have been from the 19th century — very Oslerian figures. And they very often made reference to Sherlock Holmes. So that intrigued me, because in my doctorate in literature, I barely heard — Sherlock Holmes was a bit passé. I don’t remember folks in Victorian studies really talking about Arthur Conan Doyle quite as much as they were over here in this profession. And I was fascinated, and I kept filing away observations, this little autoethnography that I was doing. And then when I finished residency, the book kind of came out of that, or the questions of the book, and I became very interested in what, beyond Sherlock Holmes, animated this connection. The book is hopefully getting close to being finished. I am very superstitious, so I won’t say too much more, but I think it does go before and beyond Holmes in ways that I hope change the way we talk about modern diagnosis.

Joshua Doležal: My other question was about pop culture. So it sounds like you’re more rooted in the literature in that period, and not commenting on The Pitt or Grey’s Anatomy or the ER show or anything in the 20th and 21st century. I have to remind myself I went to college in the 20th century, right? My kids are fond of reminding me of that. But one of those shows that I loved, House M.D., seems to be an obvious play on Holmes and Watson. You have House and Wilson, the duo. And the medical team is always trying to solve this mystery, sometimes by breaking into the patient’s home. They’ll go and rummage around in their drawers, or the sandbox out back, for evidence of worms or something. So that seemed to me a version in popular culture of this detective idea. But there wasn’t really a sense of humanity. It was just patients were puzzles to be solved, or illness was this mystery to crack, crime to be solved. And the humanities doesn’t really think that way. So there’s an interesting intersection there. The scientific mindset is like the detective’s. It’s very impersonal — just the facts, nothing but the facts. But the humanities approach that you’re bringing is more holistic, thinking about the person as a whole, more than just their illness. Do you see those in tension at all, the detective approach to diagnosis versus the humane approach that you’re trying to teach?

Lakshmi Krishnan: Yeah, thanks for that question. First of all, I will say House probably will be in the preface or the intro in some capacity, because I’m interested in the endurance of this interest. People love watching these shows, myself among them. I think the way I answer that — there is a tension to some extent with the Holmesian model, which is very forensic and is everything that Foucault critiqued, essentially. But my argument is that there are lots of different kinds of detective fiction that, funnily enough, have not made it into this medical paradigm. So I’m looking at the structures of different kinds of detective fiction, some of which were contemporaneous with Holmes, and I’m interested in how they puzzled through questions of doubt and uncertainty, and the humanity of both physicians and patients. Whereas the Holmes model is very particular, and it gets taken up and pushed even more towards the inhumane in the form of House. So that’s my way of thinking through it.

And I also think the way that literary scholars might approach detective fiction is of huge value to a very interpretive practice like diagnosis, which is taught as biomedical rather than interpretive, and riddled with uncertainty. So that’s the other contribution to it. So I’m coming at it obliquely, if that makes sense.

Joshua Doležal: Yeah, that’s great. I can’t wait to read it. Fingers crossed, and I won’t pry further until it’s done.

So that’s an example of interdisciplinary thinking, where you have literary history but also a cultural history within medicine, and you’re trying to explain some things, the patterns there, and make connections between disparate things. So maybe we’ll wrap up with this one, about one of your research essays, circling back to that case you make for the medical humanities within the university. What’s the benefit of it? Well, one of the benefits is research like this. So you wrote about Kim Stanley Robinson’s The Ministry for the Future. That’s not familiar to me, so I’d like to hear a little bit more about it. It’s a climate novel, from what I’ve read, and this is a quote from your article: “So many of the ideas in the book reflect what we know about good medicine: understanding thresholds and tipping points, prevention instead of reaction, building systems that can withstand stress.” So if you would, maybe to wrap our conversation, can you tell us a little bit about Robinson’s novel, why it drew your interest, and then how you made that connection between a climate novel, climate fiction, and clinical practice?

Lakshmi Krishnan: Honest answer, I was asked to write about it. It had not come across my desk, actually, or my shelf, or my library holdings. But I ended up finding it really interesting. So Kim Stanley Robinson wrote this novel — hard science fiction is his thing, so it’s very much about evidence-based science fiction, which sounded very familiar to me from the standpoint of clinical medicine and clinical research. It’s long. It’s very long. The basic premise is that climate ruin is upon us. The book starts with a devastating heatwave in India that has a huge toll. And basically, this ministry, this moonshot, is organized by the UN to address the climate crisis for future generations, and the whole idea is that it’s all proleptic. And then he goes on to detail the evolution of this ministry for the future, the challenges they face, through multiple perspectives.

So, as someone who trained as a Victorian lit specialist, I was really interested in his form, because he brings in documentary evidence, interview transcripts, confessional, sometimes poetic documents, into this collage, montage novel. So I thought that was very interesting. And I was also interested in the range of blurbs. The blurbs for The Ministry for the Future are from Barack Obama to Ezra Klein. For some reason, there was something about this novel that mimics hard evidence, or hard science, that seemed to appeal to lots of important people. I thought that was interesting when also thinking through, hmm, medical humanities, and how do we make a case for medical humanities? The last was that KSR is kind of cool with being unfashionable. It’s an unfashionably optimistic novel. It came out in 2020, but at this moment in particular it feels really almost jarring in how optimistic it is. So that was interesting to me as well. I lost my train of thought. You asked me something else.

Joshua Doležal: How did you then see the connection to clinical practice?

Lakshmi Krishnan: That’s right. As I was reading it, there was such a sense of — the only way I could describe the urgency was, this can’t wait, this can’t wait, and this can’t wait, and what are we going to do about it? And in my clinical brain, I just kept thinking about triage. Triage as a clinical practice is, you know, people come into the emergency room — anyone who’s watched The Pitt knows this — you come into the emergency room and there’s a kind of implicit grading that happens, like who needs to be attended to first, who can wait. And I was like, well, this is like a climate triage book. And that’s also interesting, given the hard science fiction aspect of it.

And one of the things I think I tend to do in my work is play across scale, from the individual clinical encounter to pandemics, the environment, climate. I’m always thinking about what concepts translate across scale. And so triage as a concept, and a way to think about our climate crisis and the urgency of it — it just seemed like a way in to the novel.

Joshua Doležal: I think it’s a good reminder that, in more common speak, interdisciplinarity — you just bring two different ways of knowing together, which makes people more interesting. So Sherlock Holmes has a particular method because he’s a very eccentric gentleman. He smokes opium, so he understands the underbelly of the city. He has this exhaustive knowledge of arcana. His interests are so diverse that he stumbles upon ideas for solving crimes in these unlikely places. And that’s one of the things I like about what gets preserved in Greg House’s character in the TV show, because he’s a Vicodin addict. He has the same kind of fascination with monster truck rallies or jazz, things that seem totally unrelated to medicine, but that surprisingly end up aiding his shocking and groundbreaking diagnoses. So when we’re thinking about problem-solving in the world, I think that’s another case we can make — that times of great chaos and disruption require innovative thinking, connecting things that don’t seem like they go together at all, or adaptation strategies. And when you work with medicine and literature, you’re bridging those kinds of gaps in ways that translate directly to what the world needs in really concrete ways. I don’t know if you agree with that.

Lakshmi Krishnan: Yeah. No, I think that was beautifully put. And I do — I think that’s very much my modus operandi.

Joshua Doležal: Awesome. Thanks so much for joining me today, Lakshmi.

Lakshmi Krishnan: Thank you.

Joshua Doležal: If you’re listening, Lakshmi Krishnan writes The Workup on Substack, and you can learn more about her writing at lakshmi-krishnan.com. As always, I’ll put the links in the show notes.

The Recovering Academic, and this podcast series, is made possible by the support of readers and listeners like you. Thank you.

The month coming up has six Tuesdays, so that means I’ll be holding two live interviews. On Thursday, June 25th, at noon Eastern, I’ll speak with Dr. Sandeep Jauhar about his latest book, My Father’s Brain, about Alzheimer’s. Dr. Jauhar is a cardiologist and author of many other books, including Intern, Doctored, and Heart: A History. I’ll also be speaking in June with a former student who now works as a nurse. I’ve heard from some nurses — I’ve been talking only to doctors so far this spring, so some nurses are telling me I need to balance things with a view from deeper inside the trenches. So I hope you enjoy that conversation too.

So that’s the thing not named for today. Thank you, Dr. Krishnan, for joining us. As always, stay tuned for updates.

The Recovering Academic 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 ⬇️

“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 and in O Magazine. In his spare time, he is Executive Editor of the Public Health Post.

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 and in O Magazine. In his spare time, he’s also the executive editor of the Public Health Post.

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, 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, 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, and Accidental Kindness are available wherever books are sold. You can learn more about his writing at 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, 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 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 ⬇️

“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, Annette Laing, , Jill Swenson, and many others who tuned into my live interview with 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, 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, was serialized on Substack, picked up by Empress Editions, 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.

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More episodes of The Things Not Named ⬇️

Thank you Kae, Lori, Michelle Ray, and many others for tuning into my live video with 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, 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.

The full transcript is available below.

Transcript:

Joshua Dolezal:

Welcome back to The Things Not Named. 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 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.

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More episodes of The Things Not Named ⬇️

Thank you Natalie Lago, Michelle Ray, and many others for tuning into my live video with 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.