Why did you write this book?

I’m encountering more and more people over the last few years, particularly post-COVID, who have the perception that the categories we use in psychiatry have a kind of fixed, objective, and quite rigid reality. Twenty years ago, when I started as a GP, I might have seen somebody who said, “I feel anxious all the time,” whereas now I’m more likely to meet somebody who’ll say, “Well, I have generalized anxiety disorder.” That’s a shift in the way that society talks about mental illness. At the same time, a lot of people are questioning these categories’ usefulness, so there’s a paradox—a sort of polarization.

I wanted to write a book which explains, from my perspective, A, how the way we think about mental illness has always been shifting and evolving. How we think about mental illness changes with culture, time, and geography. And B, if we can adopt a more flexible and humble approach to our current understanding, that actually offers more hope to patients. Because believing “I have generalized anxiety disorder,” rather than “I feel anxious,” can sometimes be helpful, but it can also box you in and become self-fulfilled. I’m seeing that same shift across the whole spectrum of mental illness and suffering, and the book is a call to question that and reassess where we’re at in the mid-2020s—and a plea for a little bit more kindness and flexibility.

What would that look like in practice?

For example, if somebody comes to me saying, “Well, I have generalized anxiety disorder, so I can’t do this stuff,” part of my work is to help that patient adopt a more hopeful perspective: that there are strategies that they can learn, that there are medications that can help, and that our mind is shaped by many different influences. There may be explanations for their anxiety that have to do with the brain and neurotransmitters and so on. But in most people, there are also more influential factors that have to do with their early childhood experiences and their current social setup, the precarity of their relationships or their economic situation, the quality of their sleep, or the substandard nature of their housing. There are all sorts of other factors that are having a bearing on their anxiety that I would seek to help them explore, rather than them just blanketly saying, “I have generalized anxiety disorder—can you give me the pill for that?” I’m trying to encourage my patient to say, “Yeah, there are pills that can help. But there are all these other factors that we need to think about. And do I really find that label helpful?” For some people, once you start to dig into it, they don’t.

We can extend that way of thinking to people who’ve had a psychotic episode. Between 10% and 20% of people who have a psychotic episode will never have another. For substantial numbers of people, their psychotic episode is actually a product of all sorts of stressors that are on them at that time. If you can find a way to modify their stressors, put them in a more supported state, and understand what place that episode has in the story of their life, you can then make a story that makes sense of that episode as the product of a uniquely difficult moment in their life. That can help people get over that episode and also, I hope, make it more likely that they don’t have subsequent episodes. Or, if they do, then they’re able to return fully to their normal functioning in between.

You write, “For the last forty years much Western psychiatry has behaved… as if our thinking is a simple matter of chemical levels in the brain. The truth is far more complicated.” For example, a 2023 study you cite challenged the serotonin theory of depression. [1] Why do you think that the chemical imbalance narrative has persisted?

There’s a number of reasons. That hypothesis came through at a time when our lab technology was starting to be able to measure neurotransmitters, and it offered a good story. If you become depressed, you feel as if you’re lacking something—as if you’re lacking some kind of fuel or energy. That lack translates very easily, in our metaphor-making minds, to the idea that there must be some kind of lack between our brain cells.

At the same time that this technology was becoming widespread, there was the promotion of a drug which seemed to help: Prozac. There’s no doubt that SSRIs do make a difference. Again and again, they’re shown to be better than placebo. The effect is probably a lot smaller than a lot of the drug companies would tend to promote in their materials, but they do help, and I continue to prescribe them. But what that study you’re referring to was saying was that, even if these drugs help, they don’t help by boosting serotonin levels. We can’t find evidence that substantiates that theory.

The first half of the 20th century was governed by Freudian ideas. Psychiatry in much of the West was dominated by those kinds of psychoanalytic ideas. Then, during the ’50s and ’60s, as we started to develop tricyclic antidepressants and experiment with other kinds of antidepressants—the first were anti-tuberculosis drugs—the idea grew that there might be a chemical solution, which fit very well into our technologically and pharmaceutically focused medical culture. Then, from the late ’90s, there was a huge explosion of the idea that, actually, a lot of it was genetic.

Now, even the idea that neurotransmitters are strictly excitatory or inhibitory is starting to be questioned. Essentially, the whole picture is vastly more complicated than the neurotransmitter hypothesis from the ’90s suggested. I don’t take that as a great failure of the hypothesis; it was an attempt to make sense of something very complicated, and the drugs that spoke to that metaphor are useful and are still among some of the most widely prescribed in the world. But the fact that we no longer think that low mood is purely because of low serotonin is a really positive step forward. It encourages us to embrace more fully the biopsychosocial approach to mental illness. The field of psychology and psychiatry is not known for consensus, but one thing everybody agrees on is that it’s not just biology, it’s not just psychology, and it’s not just sociology—it’s all these influences that have an effect on our mental health.

Are there other common assumptions about mental illness that you think deserve closer scrutiny?

Every age uses the metaphor of its highest technology to make sense of the mind. In the 19th century, the mind was famously described as an enchanted loom; the mind was thought to be weaving our experience, moment by moment. We’ve now got these very pervasive metaphors of wiring, which I find quite unhelpful because the brain is nothing like a circuit board. It would be like a circuit board made of jelly that can fix itself. So I think the wiring metaphor, although it has its uses, has gone too far because it’s too deterministic. It’s not organic enough.

Half a century ago, Stanford psychologist David Rosenhan wrote, “A psychiatric label has a life and an influence of its own.” To what extent can psychiatric labels help, and to what extent can they hinder?

There’s a lot of controversy about the Rosenhan experiment. [2] He’s been accused of being a charlatan and fabricating quite a lot of his data. But I think the value of his reflections still stands. I’ve definitely seen in my clinical practice that people will be treated differently because of a label that has been put in their notes, even though that label might have changed several times. I’ve had patients who’ve had four or five different labels in the course of their career, while they’ve had actually pretty much the same kinds of experiences and distress throughout all of those.

What I find really helpful in my conversations with patients is the fact that we don’t always have to give a label. If someone is really keen for one, then I’m happy to explore that with them and tell them, “These are the psychiatric categories that are on offer in the current edition of the DSM. Some people find them really useful, but with every new edition of the manual, they change, so they’re not describing something discrete, fixed, or in the natural order of things. They’re a way of describing and approaching distress, so let’s talk about how much they would be helpful for you.”

Now, in the U.S., I understand that labels can be essential because of insurance-based medical payments. In a U.K. context, a label may not be as useful because our psychiatric services are organized differently. I gently explore with each patient how much for them it’s going to be transformative. If it’s going to help ease their suffering and get them the treatments that they want, then I embrace it and help them get the one that fits best. But if it’s not going to be transformative in terms of how they can access care, then I tend to try to avoid giving a label because that can allow a level of optimism and dynamism about their state of mind. It more genuinely reflects the possibility of change and adaptation, rather than risking somebody changing the way they think of themselves.

As human beings, we’ve got such a huge tendency to put shame on one another. What labels seem to do in our current moment is absolve people of that shame in a really helpful way. I’ve had patients say to me, for example, that until they got their diagnosis of ADHD, they felt so ashamed of not being able to focus properly at work, and what that label did was offer a kind of absolution from that shame because it said, “There is this category of being that is separate from you and which seems to be affecting you, but it’s not your fault.” That can be wonderfully liberating. In those kinds of situations, I’m often keen to embrace the label if it’s going to help the patient cast off their shame. But I’m also questioning: Why have we got that shame? Isn’t it a pity that people often feel that they need to embrace a medical diagnostic label in order to rid themselves of that shame?

What strengths do primary care physicians bring to mental healthcare compared to someone more specialized?

One great advantage of somebody in my kind of role is that I’m embedded in the community. I often know the whole family, and I’m seeing people for all kinds of other problems which have a bearing on their mental health. I’ve become more aware of the connections between families and individuals; a specialist only sees the one individual with a particularly distressing problem—for longer appointments, granted, but removed from that context.

There’s a wonderful GP writer in the U.K. called Iona Heath, who has written a lot about the fact that it’s in the primary care consulting room where suffering is either given a label and understood within a medical model, or not. Some people see primary care physicians as essentially holding a line, or acting as some kind of gatekeeper, between the huge mass of human experiences that are out there and which ones become medicalized. A lot of people will come and see me about something fairly banal—almost to try me out, to try and figure out whether I’m going to be kind, compassionate, friendly, or approachable. Once they’ve tried me with a symptom that they’re not too fussed about, then they’ll risk sharing the one that they’re really worried about.

As a primary care physician, I feel I have a very privileged role: You’re not part of the family, but you’re not part of the establishment—you’re somewhere between the two. I’m often the first port of call for people hoping to make sense of their experience.

One line from your book that struck me: You write that today’s DSM categories will one day “seem as overconfident as the old phrenology charts.” How literal or hyperbolic do you mean that comparison to be?

Phrenology was debunked about 130 years ago. By the late 19th century, it was already starting to lose its traction because good thinkers were realizing it was a load of rubbish. If I could fast forward to 2176 and ask the doctors of that time what they’ll make of the DSM-5, I don’t think they would see it as phrenology, but they would certainly see it as utterly obsolete and unhelpful to them because it’s a cultural document of the West in the early 2000s. We can’t imagine what Western culture is going to look like in 2176. I’d argue that it’s quite likely that it will be very different from our current culture, that our neuroscience and genetics will have progressed in huge leaps and bounds, and that the organization of our society—while it may not have progressed—will have changed utterly. The DSM-5 will be of purely historical interest. When I was born in the ’70s, they were using the DSM-II, which is now considered very much a historical document—and that’s within my lifetime. I’m hopeful that the DSM-6, if and when it ever appears, is going to be an improvement on the DSM-5.

What inspired the book’s title?

From my chair in the clinic, I don’t see people’s minds as brittle and fragile. I see people as immensely resourceful, resilient, adaptive, and dynamic. People are incredible; they always amaze me with their ability to get over even the most extraordinary difficulties, suffering, and traumas. In my seat, I see the mind as far more unfragile than a lot of the rhetoric in our culture suggests.

The Unfragile Mind: Making Sense of Mental Health
Gavin Francis
Publisher: The Experiment, New York. 2026. 256 pages.

[1] Moncrieff, J., Cooper, R. E., Stockmann, T., Amendola, S., Hengartner, M. P., & Horowitz, M. A. (2023). The serotonin theory of depression: A systematic umbrella review of the evidence. Molecular Psychiatry, 28, 3243–3256. 
https://doi.org/10.1038/s41380-022-01661-0

[2] In the 1970s, Rosenhan and eight pseudo-patients feigned auditory hallucinations to gain admission to a dozen psychiatric hospitals across the U.S. Once inside, Francis writes, they “declared themselves free of the hallucinated noises, but found it very difficult to be believed, and be discharged” (p. 47).

Web image created from book cover by Medhum.

DAVID HSU: Tell me a little bit about this half-marathon business. What’s going on with that?

TONY MIKSANEK: I’ve been running for a number of years, which I truly enjoy, and I’ve done ten full marathons, one ultra marathon, and God knows how many half-marathons. But as I get older, I’m leaning more toward the half-marathon as the longest distance I like running.

DH: So how did this one go? Was it good?

TM: Yeah. This one was in Florida. The weather was beautiful. There were about 20,000 people, and it was at Disney World. So you run through the Cinderella Castle, you’ve got all the characters high-fiving you on the course. It’s great. I think I originally got into running as a sort of release from medical practice, where you can be outside, mindful of your surroundings and your breathing and your foot striking the pavement. Since then, it’s become just short of an obsession. A good one, a good obsession. But I’ve often thought about the similarities between running and medicine. The greatest similarity is that both endeavors require a pair of comfortable shoes because you’re on your feet all day practicing medicine. There’s also a rhythm to running, which is a very individual, personalized thing. And, of course, there’s a rhythm to our practice. The flow of taking care of patients and our style in interacting with them. In running, you have to build up a core. We call it a core of mileage that your body gets acclimated to. In practice I think that core is sort of like developing trust in the physician-patient relationship. You have to work on that. You know that saying, “trust is hard to earn but easy to lose?”

DH: Let’s talk a little bit about medical humanities. You mentioned that running was something that you did to put your head in a different space from your regular work. I assume that medical humanities would also be something that gives you a diversion from your regular work. Is that accurate?

TM: Most of my career was spent as a small town, rural area, solo family practitioner in a former coal mining town with a population of right around 8,000 people. So medical humanities, for me, for most of my life, has always been an individual thing. I read and tried to be involved in whatever peripheral way I could with medical humanities. And I did and still do derive a lot of satisfaction, enjoyment and learning from reading great literature. We can debate what the adjective “great” means when it applies to literature, but I feel there’s so much to gain from literature. When a patient comes into our office, they usually want to tell us a story. Sometimes they’re reluctant, but usually they want to tell us a story. And my belief is that most people, to be healed, need to tell that story. But equally important is they need somebody who is invested in listening to that story, that confirms their importance. and the validity of their illness or what they’re going through. And I think literature is a really great tool to help us learn how to listen intently to patients, more fully understand their stories of life and illness, and to enhance our empathy.

So again, my entry into medical humanities is probably unlike most of the people on our MedHum group. It’s mostly been kind of a solo route for a long time. Currently I’m an associate editor and a book editor for the Journal of Medical Humanities. I don’t know how far back you go with your practice, but once upon a time, the American Family Physician Journal, the AFP, had a regular column called “Diary from a Week in Practice.” And there were four contributors. I was one of them. I guess I was the token rural small-town doctor, because there was somebody from an urban practice and somebody from an academic practice. I forget what the fourth one was. And so we would take turns writing a column that was basically a chronicle of a week of practice like “what were the highlights, what were the lowlights.” I think that was important for me, because at the time, that was probably my version of reflective writing, even though it was produced in a form that would be published. You know, being a doctor is tough, albeit a wonderful, often joyful, profession. Running gave me an opportunity, I think, to kind of put myself in a place where I can sustain joy and the dedication that was required, especially being a small-town doctor where your patients are your neighbors. You run into them at church or the grocery store. The land is the connecting fabric for a small-town doctor. I mean, your kids’ friends are almost always your patients. So it’s a very vivid, organic, dynamic relationship.

DH: How big was your practice? How many patients did you have?

TM: I practiced in our town for a little over 30 years, as a solo family physician, 24/7, unless it was time for vacation or a meeting. And then, you know, I had an agreement with a couple other physicians for coverage if we were gone, but it was a very full practice. The only thing I didn’t do as a family physician was OB.

I loved to make house calls. I used to make them in my Jeep Cherokee. And I’ll never forget the first house call I made. I brought my nurse with me because I was new to town, and I didn’t really know where the address was. And we pulled up in front of this very, very small, weathered house. And I remember as they opened the door to let us in, the floor was dirt. It was a dirt floor. And having been born and raised in Chicago and then later some of the suburbs, I was dumbfounded. That was really my experience — people that were really struggling to make a living. But the dirt floor was, I mean, it sounds like an oxymoron, but it was clean. And the home was well-kept. There were a lot of eye-opening experiences being in a small town.

DH: What’s the name of the town?

TM: Benton. Illinois. Wonderful town. Great people.

DH: How did you stumble across the humanities and arts connection to medicine? Was this something that you were aware of as a student or at some point as you started working you started to realize that novels had something to do with your job? How did you make that connection working solo?

TM: I’ve always been an avid reader, as I think most physicians are. And actually, I got a head start because our medical school, the medical school I attended and where I am now a volunteer faculty in the Department of Medical Humanities, was one of the first medical schools in the country to actually have an independent medical humanities department. So as a student, I was already interested in medical humanities. I guess as a prelude to that, as an undergraduate student at the University of Chicago, we had what they called a core curriculum when that was not a popular thing. Every student, no matter what your major was, had to have competence in basically all the major disciplines. So, if you were going to be a biochemistry major, you still had to take the History of Western Civilization, Art Appreciation, etc.

I’ve always been involved with literature. Once upon a time, JAMA and the New England Journal had book review sections, and I did book reviews for those two journals. The sad thing is, they haven’t had a book review section for a number of years now. There’s no interest, I presume? I don’t know. They just kind of vanished in the night. So, during my early years of clinical practice, I was writing reviews mostly for JAMA. They would send me all kinds of books, some of which were very peripherally connected with medicine. And so I think maybe when they had a book that looked interesting, they would say, “well, we’ll just send it to Tony.” Which was great. But that was in the days even before internet. I remember I would be sitting at my kitchen table with a typewriter typing these reviews to mail to JAMA or New England Journal. And it was kind of wild. But life was so much simpler then, too, on the other hand. Anyway, I would say that medical school, a love of literature, getting involved in book reviewing from early in my career was kind of the springboard for me, into medical humanities.

DH: Can you give us a few medical humanities book titles that we can spotlight for the audience?

TM: One book that I really was impressed by was Do No Harm. There’s an aphorism in medicine, “do no harm.” That’s the title. And it was written by a neurosurgeon in England by the name of Henry Marsh. It’s a beautiful book because like the very best memoirs, he presented his vulnerability as an individual and as a physician, a surgeon, so beautifully. You couldn’t help but be moved by his sincerity. In fact, he had a line, I’m paraphrasing it, but the line was something like, “I am a vessel for my patients to pour their misery into.” And you know, on the one hand you can say, “well, that sounds a little pontificating, a little arrogant,” but on the other hand, it’s like, “isn’t that part of the job description?” So that would be one: Do No Harm. Another by a physician author is Cutting for Stone.

DH: By Abraham Verghese.

TM: He’s out at Stanford and he’s written a lot. The Tennis Player, and others, but Cutting for Stone is one of these lengthy novels that you’re reading and you’re like, “this author’s all in.” He’s not saved any good stuff for another book. It’s just all there. So that’s another one I would recommend to people.

I’m also a very big fan of Richard Selzer because first of all, most are short stories or short essays you can read in a single sitting. I’ve met him a number of times and he admits that he lies, because these are not true stories necessarily, and they may have had their genesis in some kernel of truth. So there is a lot of exaggeration and hyperbole but there’s still something that he’s able to successfully impart to the reader about a doctor’s vulnerability. When I trained, we were told to suppress our emotions and have clinical detachment. You can’t survive if you get too involved with your patients. And of course there is truth to that. It can get to the point where you lose yourself in someone else’s situation and it’s not healthy for you or them. But I think we’re in a renaissance of saying, “Okay, maybe you can’t be too empathetic, but it’s okay to be vulnerable.” We’re not superheroes. I still struggle with that.

I had a lot of older folks in my practice who were huggers. Early on, I was always like taking a step backwards as they were lunging toward hugging me. But then my nurse, in her wisdom, said, “You know, they need to hug you.” That’s how they’re acknowledging your value to them and what you mean to them. I’ve done a lot of thinking about vulnerability and physicians. What is the optimum amount of being vulnerable? In the old days, if we had a very difficult situation, we would just go in our office, close the door, and have a cry. I mean, we would weep. We would never think of demonstrating our sorrow in front of a patient or something. And I think that comes from the training back then. But as you know, there’s no template for being a good physician. And it’s kind of a learning experience for all of us.

DH: It has something to do with how to be a good human being.

TM: Yes, exactly. And I think the whole point of medical humanities, as I alluded to earlier, is about that soul, that spirit of medicine, which is not just about how we practice medicine and interact with other people, but also with being self-aware of who we are, what we can offer, what our strengths and our weaknesses are, and trying to embrace both. Understanding that there are things we don’t do as well as we’d like, things we could do better. But again, it goes to that understanding of our vulnerability and accentuating our strengths and trying to minimize our weaknesses, while understanding that all human beings are some unequal combination of both.

DH: Switching gears a little, as a retired family physician, what’s your view of medicine today? Is it pessimistic? Is it optimistic? Do you think we’re moving in the right direction or are things worse than they were back when you were going through it?

TM: I think medicine is a completely different enterprise now than it used to be. I remember the joy of holding a paper chart and writing my notes with a pen on paper. I think my notes were adequate or good, but they had just the right amount of information that was necessary. There was nothing superfluous when you had to write your own note because you had a certain amount of time that you wanted to get the note done in. And I understand the utility of the electronic health record and its portability. But I think there’s something about looking a person in the eyes, giving them 100% attention, and even though back in the day I used to scribble down some notes so I wouldn’t forget certain things, 90% to 95% was just one-on-one. And then after the visit, I would write the note in the chart, or later I had the ability to dictate a note, which was great. So I think the electronic health record, on balance, has been a detriment to the practice of medicine.

Also, the amount of time you spend with a patient has become very restricted. For example, I was very cognizant of people waiting in the waiting room. Back at my peak, I was seeing 30 to 35 people a day in the office. In addition, I admitted and cared for all my patients requiring hospitalization. The local hospital that we have, 50 beds, still does not have a hospitalist. And so you had to make rounds. You took care of people in the ICU. You saw your patients in the ER. It was a full-service experience for patients and the physician. It was hard. There’s no question. But there was something very gratifying about being able to do all those things right and being a small-town doctor. People just called you at home. We had one rule in the house, and the rule was that as a family — we had three children — we would all have dinner together and that one hour was just for us. What happened with the kids during the day at school and their activities and how work for my wife went. And I just remember laughing and laughing, but we carved out that time. But otherwise, it was all hands on deck all the time. SoI think medicine is different. Whether it’s better or worse, I don’t know.

I really do feel sad that we’ve become such a technological profession. You hear students saying, “Well, what’s the point of trying to listen to a murmur? We’ll just get an echocardiogram.” Back in the day, you relied on your clinical acumen and you formulated your differential diagnosis. And then you thought, “well, what is the most likely diagnosis?” And then you would do testing to support that diagnosis or refute it and move on. And now I feel it’s like people immediately get tested.

We used to have to listen to people. You probably have the same experience. I think all medical students do. You have some wise professor that says 90%, 80%, 85% of the time, the patient will tell you exactly what’s wrong. You just have to listen to them. You may have to nudge them a little bit to give you more information. But now I don’t know that we’re giving people enough time to tell us what is really wrong with them before we kind of take the leap to do these tests. And I think, unfortunately, patients are getting so comfortable with the notion of getting tests that that is all they want. I’ve had patients that say, “Well, can we do a CAT scan? Can we do this or that?” Of course we can do it, but tests come with risks. False positives, incidentalomas, radiation exposure in some cases and so on. So on balance I’m going to say, although it was not Nirvana or Eden back in the day, and we had our own issues and problems, it seemed closer to the aim of healing.

DH: Well said. What would you like to see MedHum do in the coming months and years?

TM: I think what I would like to see is just MedHum continue on its trajectory and grow to become a go-to resource for people interested in medical humanities or just people that are curious about medicine in general. I would like to see the website continue to grow and become a valued resource where people, if they’re interested in the depiction of medicine in the humanities and in the culture of medicine, they can read articles, they can listen to podcasts. There’s a lot of interesting material on the website already. I think as we grow and expand and include more contributors, the possibilities are limitless for what it can become.

DH: That was great. I had a good time. We should do this again.

TM: Me too. We’ll look forward to talking again.

Posts Written by Dr. Tony Miksanek

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“I am we, we are a year, we year, we are rest, we rest.” 

In winter 2024, Sop had a severe relapse of myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS), leaving them housebound in South East London.

That summer, in the days leading up to a friend’s birthday celebration, the artist rested carefully so they would be able to attend. The night before, they started taking what was touted as a “magic” pill for insomnia. They didn’t sleep at all and had to miss the party. But in a sleep-deprived haze, they wrote, as they described in a recent interview [1], “a solidarity rant, a kind of letter to other disabled people stuck indoors.” 

When Shape Arts, a UK disability arts organization, approached Sop with a commission, they decided to adapt the essay into a script for We Year, a mixed-media love letter to others living with energy-limiting conditions. The short film premieres at RestFest—a film festival and virtual space by and for the disability community—as part of a program co-organized by The Remote Body, Resting Up Collective, and Ort Gallery. 

With a poetic voiceover and ethereal soundscape, We Year immerses viewers in a chronic illness flare during a sweltering summer, blending decades-old archival footage from when Sop was well enough to move outside freely with recent phone footage shot at home. Shifting between past and present and between interior and exterior, the experience is at once isolating and unifying, claustrophobic and liberating. 

We Year also features 16mm direct animation, a technique that involves drawing and scratching moving images directly onto film stock rather than recording with a camera. Here, Sop used ink to overlay the orange stress bars from their Garmin watch across the entire film—a constant representation of their body that acts as a symbolic barrier between them and the audience. 

The following interview has been edited for length and clarity. 

When did you begin to think of yourself as an artist? 

I always wanted to be an artist. Even as a kid, when I was asked, “What do you want to be?”, I was like, “An artist!” I honestly have never thought about doing anything else. I grew up in the deep countryside, and there wasn’t much access to contemporary culture, although I was obsessed with music and music magazines. There was this teen music magazine called Smash Hits that I loved, and I made collages and scrapbooks of pop stars. When I was 13, I went to a big retrospective of the massive British artist David Hockney, who just died, and it was the first time that I’d seen contemporary art. It blew my mind, and that’s the first time I remember thinking, “Oh, this is something serious that I want to do.” 

What questions or themes does your art usually explore? 

I find it hard to make work that isn’t about my life and the things that I’m dealing with. What I do always ends up being ultra-personal. That’s not something that a lot of people do, necessarily. The act of living as a chronically ill person means that you have to live in the world in a very different way from people who are not chronically ill. Chronic illness is a fertile area for ideas. You’re living the life and thinking about the life at the same time. If you’re an artist or someone who thinks about things in conceptual ways, you can’t help but try and interpret your life into art-making, projects, or ideas. Everything’s interesting. It’s like living life wonky.

As a chronically ill person,  I can’t do a 9 to 5. I can’t necessarily keep to plans, and I can’t always do basic things, like sometimes even look after myself in a normal  way. The agency that I have is to interrogate what this life means and the challenges that it poses and what is interesting about that. What can I say that’s beyond how I would perhaps describe being sick to a stranger? Like, what’s within that? All of the work that I make—even if it looks not about that—is going to be about that.   

And then the other part of it is that I grew up in the field and was a tomboy covered in mud. My understanding of the world was through nature, and now I’m in a flat without a garden. I can see some trees in the park just over there, but quite often, I’m not well enough to go and hang out in the park. I am pretty obsessed with nature and the fact that I can’t get to it. I can’t really have that life currently.  

In your bio, you describe yourself as “a torn and crooked leaf, a root embedded in the dirt, a shoot reaching to the sky.” Would you please elaborate on what this means? 

When I wrote that bio, I was making work about my body being the same as the microbiome in the soil. “A torn and crooked leaf” is being chronically ill. “A root embedded in the dirt” is really what it sounds like, within the context of that specific work. And the “shoot reaching to the sky”—my work deals with pretty hefty emotions, but there’s always hope. My life is not a miserable life; it is hopeful, and I do believe there’s something so crucial in being chronically ill that you absolutely have to keep hope alive. It takes a lot of work to do that and to get there. It’s not easy, but it’s super important. If you have this restricted life, you absolutely have to shoot for the sky. Because time just goes on.  

What does working in crip time [2] look like for you? What are your long-term goals as an artist? 

If you’re truly working in crip time, it’s fairly impossible to have long-term goals. You haven’t really got a choice when you work. You can do your very best to carve out time or space. Currently, I have about a couple of hours in the early morning when I can manage to do something. My afternoons and evenings—I simply can’t make work then. If you have such a limited time to make work, the amount of work you make is going to be low. It will have to meet your capacity, and that doesn’t fit well with current art market production timelines or expectations. Sometimes, you can’t make something for a year because the thing that you should be working on—and the thing that is your work—is your health. That’s your full-time job.  

I deeply believe that making in crip time actually is truthful to the world. We would probably all be better off if we did. Really, it means making work to your capacity, and that can mean a lot of things. You don’t need to be ill to make to your capacity. 

It’s a more authentic timeline of meeting yourself where you’re at, rather than forcing yourself to meet arbitrary or toxic timelines. 

You haven’t chosen to have chronic illness—you’re forced into doing that. And I don’t think that’s a bad thing necessarily. Asking what would I like to do for my long-term goals—I find it very hard to answer because, first of all, I live, like, day to day and, second, when I think about what my long-term goals would be, it’s from the perspective of someone without a disability because I currently cannot see how I would be able to do more than what I’m doing unless I had an enormous amount of more support. 

How did you decide which media to work with for this project? 

Films and writing have always been the two mediums I mostly turn to, and actually they’re the most accessible things for me to do now, being housebound. When I was asked to make the film, I just didn’t have it at all in my means to film new work or leave the house, so I had to kind of figure out how to make a new work out of what I had, which was this personal essay I wrote about being stuck inside in the summer. I made the film throughout another summer of being stuck inside. A lot of chronically ill people turn their camera or phone or whatever onto their surroundings, so I had bits and bobs that I filmed. When I started making films, I would just film tons of different stuff. I had my little Hi8 video camera around the whole time, so I had lots of little clips that I hadn’t used, and I didn’t actually think that I was ever going to use them for anything. But that obviously wasn’t enough, and I didn’t really want to make a film which was just a film inside my house—there’s plenty of films like that. I had a whole bunch of old footage from the 90s. I digitized all of these tapes a few years ago, and they looked so great. A lot of that stuff was filmed out of the house, and then there were funny effects that I filmed which made it into the films. There’s a lot of blobs of color, which are actually motorway lights and ended up being this really nice kind of texture, which floated over and broke up some of the images.  

Hi8 and MiniDVs are the two cameras I was using in the past, so I have footage from both of those. And then there was 16mm direct animation. Each section of the film has a different animation running over it, but the animation is quite transparent, so it’s always there. It’s textural and has multiple meanings. And then I commissioned my friend to make the soundtrack. 

Would you elaborate on the meaning of the title of the film? 

The thing that’s turned me on most about this film is the fact that I can try and get “to year” and “yearing” adopted as a new way of describing spending all this time being sick. I think the word “year” is long enough for people to imagine, “Whoa, you are sick for a whole year. That’s a really long, unbearable time.” But then you make it into “yearing,” and then it could be even less than a year, but it’s probably closer to a year or multiple years. Then I was interested in what would happen if the years were then broken up with periods of being well, with relapses included as well.  

I find it really tiresome to have to explain the last five years of my life. So to not have to say, “Well, I was sick for a couple of years, housebound and bedbound, and then I got well again, and then I had a relapse”—it’s just like, “I was yearing.” I would love for it to become part of the lexicon of chronic illness.  

What does it mean to have “We Year” screened at RestFest? 

There’s this informal network of crip friends who work with each other. Not everyone works together, but we all know each other and there’s really close friendships within this group. They’re all small, crip-led organizations that have been made pretty much for the same purpose, which is remote events, screenings, and workshops. I was just really keen to connect and uplift all of these organizations. We created this program together, and I’m really proud of it. It’s been a lot of work, but it’s really nice making things with your friends. The access intimacy side of it all is real. Creating or programming with your friends is a very accessible way of making because we all understand each other and our capacities. I’ve said capacities a million times. 

You need to coin a new term for that as well. 

Okay, I’ll get on that for next time. 

We Year, through July 12 (if you start watching on June 28); RestFest Film Festival. “I am we, we are a year, we year, we are rest, we rest.” 

[1] “Interview with artist-filmmaker Sop + a Special Screening of their New Film.” RestFest, 2026,
https://restfest.substack.com/p/interview-with-artist-filmmaker-sop. 
[2] In her 2013 book Feminist, Queer, Crip, disability scholar Alison Kafer writes, “Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” 

John O’Connor, whom I happened to interview on May 5, explores a similar dynamic unfolding amid today’s psychedelic renaissance—a movement rife with magical thinking that he sees as something of a religious revival—in his delightful and enlightening new book A Short, Strange Trip: An Untold Story of Magic Mushrooms, Madness, and a Search for the Meaning of Life in the Amazon. 

Some Westerners are appropriating sacred plants while divorcing them from the traditions that gave them meaning—“colonizing them in reverse,” as American ethnobotanist Glenn Shepard puts it (p. 211). For example, ayahuasca use, despite widespread belief, may not date back thousands of years. Instead, O’Connor argues that the practice “rarely existed where Indians remained isolated from Western meddling” (p. 222). Its expansion beyond the Río Napo began relatively recently with Jesuit missions in the early 17th century and later accelerated through 19th-century rubber camps along the major river systems of the Amazon Basin. Through Western tourism, ayahuasca has come to be portrayed as “an ancient ritual for slaking our insatiable thirst for Indigenous salvation and/or for increasingly extravagant highs” (p. 223). 

During our meeting, O’Connor told me he does not “think there’s ultimately harm in appropriating a plant if you find it therapeutic, useful, or even life-saving—which a lot of people are reporting these drugs can be.” 

At the same time, he said, “we need to have an honest, good-faith conversation about where these drugs come from, what their actual Indigenous uses are, and what they are.” 

To write the book, which explores humanity’s broader relationship with psychedelics, from ancient religion to modern medicine, O’Connor worked with the Uitoto people to retrace an expedition undertaken some 50 years ago. Into the Colombian rainforest—home to begonias as red as blood and butterflies as wide as hubcaps—ventured scientific researcher Dennis McKenna and his older brother Terence, the visionary whose “tangled beard hung like an oriole’s nest past his chin” (p. xix). Weary of the war on drugs and fueled by utopian fantasies, Terence’s army of psychonauts sought a legendary hallucinogen that would turbocharge their DNA and “hasten a return to our preindustrial and preliterate past” (p. 284). 

In reality, Terence and his disciples did not transform into “eternal hyperdimensional beings” or travel via “flying saucers of the mind… ‘into the plenum of being’” (pp. 94, 30). Nor did they propel “human evolution forward to its next stage” by connecting to “the mind of nature itself” (pp. 284, 11). But they did experience auditory and visual hallucinations that led them, in a manner not unlike schizophrenia, “to adopt a new narrative interpretation of the world” (p. 95). 

Armed with the spore prints they’d brought back from La Chorrera, the McKenna brothers were “among the first, if not the very first, to successfully cultivate magic mushrooms at home, sparking a major leap forward in psychedelic history” (p. 202). In 1976, they published Psilocybin: Magic Mushroom Grower’s Guide; this April, half a century later, President Donald Trump signed an executive order expediting research into the therapeutic benefits of psilocybin and other substances of its ilk. 

O’Connor mentioned that one such mind-altering drug, ibogaine—made from the root of a Central African shrub—has shown promise in treating post-traumatic stress disorder and substance use disorders. 

“That’s great,” he told me, “but it also has a habit of slowing people’s heart rates considerably,” among other life-threatening side effects.  

“People are diving into these treatments as if there are no potential risks,” O’Connor, who teaches journalism at Boston College, added. “They don’t work for everyone—they’re not a magic bullet.” 

The remainder of the interview, which follows, has been edited for length and clarity.  

Why did you choose Terence as the focal point of the book? 

I hadn’t heard of him, and I pride myself on knowing about eccentric, overlooked weirdos from the psychedelic ’60s and ’70s. I was doing a lot of retail therapy online during the pandemic, as were many folks, and I came across his book, True Hallucinations (1989), totally by happenstance. I hadn’t known anything about it, bought it, and put it on the shelf for two years.  

I finally opened it one day and started reading. I had some preconceived ideas without really knowing anything about Terence or his subject. I thought it was probably some hippie-dippy thing about machine elves, and it sort of is that, but that’s not all it is. It’s a great narrative and just fascinating—it just captured me. 

Terence postulated that psilocybin mushrooms “played a crucial role in human evolution, giving our remote ancestors a jolt in language and cognition” and “turning Homo erectus into Homo sapiens.” While there’s nothing in the fossil record to support Terence’s “stoned ape theory,” according to anthropologist Laura Weyrich, advances in proteomics and DNA-sequencing technology could potentially indicate whether ancient hominids at least ate psychedelic mushrooms.  

How plausible do you think stoned ape theory is? 

When I first began looking into it, I was like, “Oh, this is so ridiculous.” I was embarrassed to ask these various paleoanthropologists, archaeologists, and researchers about it. I was like, “Oh my God, I can’t ask this, but I have to.” But it turns out that, as a thought experiment, many of them also found it interesting. It’s not something that I think is ultimately really provable. You could find some tangential scientific evidence, but you’re probably never going to get a smoking gun. 

Terence had a lot of theories—some relatively sane-seeming, like the stoned ape theory, and some completely batshit theories that have no basis in science or reason. But I sometimes liken him to Sigmund Freud, or maybe some of the kookier analytic philosophers, where you read it, it sounds kind of good, and then you get to the end and think, “Well, that’s probably 95 percent bullshit, but it still enriches my worldview.” I feel more enriched for having read it. That doesn’t mean it’s true, and I don’t put much credence in it, but it’s fun to entertain, and I do think it enriches the way I think about the human mind and human possibility. 

You also mention how “what drove [you] to write this book was in part a procession of deaths and their aftermaths” you and your wife endured starting in 2019. Would you elaborate on that? 

About a year into writing the book, my son, who was four at the time, fell ill unexpectedly, out of nowhere. He was in and out of the hospital during those days. It really brought us face to face, for the first time as parents, with real suffering and grief, and with being totally out of control when it came to finding a remedy for him. There was just no help to be found anywhere. I started thinking about grief and suffering, and how much of it was around us.  

Then there was this kind of cascade of deaths—just a lot coming at once over the span of a couple of years. It made me wonder what psychedelics, at least on a therapeutic level, potentially have to offer people: some relief.  

Another thing: My father was, weirdly, at the same time, starting to consider psychedelic-assisted therapy to treat his depression and longstanding addiction to alcohol. Maybe a year before, I’d given him Michael Pollan’s book, How to Change Your Mind: What the New Science Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence (2018). Because my dad had been in and out of therapy, rehab, and 12-step programs for many years, I was like, “I don’t know if you’ve heard of this, but I’ve been reading about non-traditional approaches to treating alcohol addiction, including psychedelics.” I don’t think he ever read it, but it did start a conversation between us. 

What surprised you most while researching the book? 

Reading Terence, I hadn’t realized that psilocybin mushrooms were not indigenous to La Chorrera—that they were essentially a foreign import [1], and not something used by the people there, certainly not by shamans. 

Another revelation was what “shamanism” actually looks like in the Colombian Putumayo. Terence talked a lot about this sort of psychedelic shamanism. A lot of people do today, too. But it’s just not at all what it seems to be. The Indigenous perspective on and use of things like ayahuasca, or yagé, and other psychedelic plants—at least in the Putumayo, where Terence and Dennis spent much of their time—is vastly different from how I think they’re generally understood or used in the U.S. These substances were generally not used for healing. Until European contact with Indigenous peoples throughout the Amazon Basin, ayahuasca was mostly used in the hunt—to have luck in finding animals—or sometimes to find lost objects or communicate with family members or other tribe members over long distances. But it was definitely not a therapeutic application. That’s starting to shift a little bit now, though, because of this strange sort of cross-pollination that happens so often in history where it’s now being fed back into an Indigenous context. 

I think I went into the book as something of a Terence fanboy. I cooled on him a bit once I spoke with Colombian anthropologists and ethnobotanists and realized how taken out of context many of his proclamations were on psychedelics and the “shamanic” experience. But, by the end, I sort of warmed to him again because I realized that his ultimate project, I think, was really about human wellness and flourishing. I think that’s what he wanted ultimately, even if he went about it in a strange, myopic way focused almost exclusively on the psychedelic experience through psilocybin mushrooms. That’s where I part ways with him. I think the best place from which to grapple with grief, loss, and suffering is through love, tenderness, and compassion—not through machine elves at the end of history, which was, more or less, Terence’s take. 

I was also interested in your discussion of “diagonalism”—what scholars William Callison and Quinn Slobodian characterize as the social-distress-born alliances between the far left and the far right uniting wellness gurus, anti-vaxxers, and conspiracy theorists. 

I was just reading an article by the American political scientist Francis Fukuyama; he calls it this horseshoe meeting of the minds—this ideological vortex where people with otherwise totally divergent political opinions are meeting in the middle on certain issues. The far left, the Make America Healthy Again movement, the Multidisciplinary Association for Psychedelic Studies—even just the friendship between [MAPS founder] Rick Doblin and former Texas Governor Rick Perry [co-founder of the nonprofit Americans for Ibogaine], who had one of the most conservative legislative agendas in recent memory. That friendship seems genuine—and maybe even necessary to advance these drugs beyond their current legal status. 

In 2023, MAPS hosted the world’s largest psychedelic conference, which you describe as laden with snake oil pseudoscience and lacking in diversity, equity, and inclusion. Almost a year later, an FDA advisory panel rejected MDMA-assisted therapy for PTSD, citing safety concerns and questions about data validity. Critics alleged that MAPS’ drug development arm failed to disclose data showing sexual misconduct by therapists and increased suicidality among trial participants. A former MAPS volunteer called MAPS an exploitative and abusive cult that functions “more like a religious movement than a scientific organization.” Similar concerns emerged at The Johns Hopkins Center for Psychedelic and Consciousness Research. An ethics complaint accused founding director Roland Griffiths of “acting as a ‘spiritual leader’ rather than a scientist” and influencing participant outcomes through religious symbolism. 

Additionally, a Columbia psychiatrist reviewing the field noted a relatively high rate of  irritability, anxiety, insomnia, and other adverse events, and called for more “rigorous assessment” of psilocybin-assisted therapy.  

How do we balance the potential of psychedelics to promote empathy and well-being with the risks? 

Terence said a lot of completely bullshit things about psychedelics—even dangerous things at times. You see that in the movement today, where a lot of these wild, unsubstantiated claims are being made about drugs that, yes, have real healing potential for many people, but for others, such as my father, don’t work at all—and arguably cause more harm than good. 

We should be sane and sober about this. We can champion these drugs while still having a lucid conversation about their efficacy, limitations, and safety concerns. 

[1] One of my favorite passages from the book is “Darkly gilled, with distinctive golden halos and pink veils around slender stems the color of bruised flesh, they were easily identifiable as Psilocybe cubensis… Likely brought to the Americas by Spanish missionaries via the dung of zebu cattle—rangy saltwhite beasts with enormous, scythe-like horns—Psilocybe did especially well in the humid pastures of La Chorrera. Amazonian shamans, who knew more about psychoactive plants than anyone on earth, had no use for these foreign imports. To Terence, however, they were living manifestations of the divine” (p. xx). 

A Short, Strange Trip: An Untold Story of Magic Mushrooms, Madness, and a Search for the Meaning of Life in the Amazon 
John O’Connor 
New York: Sourcebooks 
2026 

DAVID HSU: Why do you think medical humanities is important in today’s world?

STEVEN FIELD: I think it’s important because it’s a way of getting back to the heart and soul of clinical medicine, or at least, I hope it is. I was in practice for 35 years, and I think that medicine has moved towards a different concept than the concept that I grew up in professionally. I like the idea of well-rounded physicians. I think people should know things other than just medicine. Reading novels gives you an appreciation for the way that people interact, not necessarily just in medical illness, but also outside of illness, which then you can extrapolate back [from].

But I admit I’m biased. I was a liberal arts major in college. I started in English, and my degree is in history. What was your area?

I did a double major in biology and history. Most of my classes were 20th Century American history.

My senior essay was on Puritan and colonial town planning theorems in New England and the middle Atlantic states, nothing I’ve used ever since. And my junior essay was on witchcraft.

Witchcraft is a little bit closer to medicine.

True. I actually was looking at the sociopolitical ramifications of witchcraft in Tudor-Stuart England and France under Richelieu. So, while it wasn’t wars and treaties history, more social/cultural history, it was history nonetheless.

I come from that liberal arts background, so I have a leaning towards medical humanities. I think it’s really helpful to ground people who are in the field, and I think it’s an often incredibly helpful way to relate to patients on so many levels. You might not be amazed, but many people would be, to know how many times the doctor-patient relationship is either forged or strengthened over a shared interest, literary or otherwise. I don’t mean sharing at the same time, but something that somebody else has read, or a movie, or a play you’ve seen. The reason I think medical humanities has assumed more importance is because the period of time that doctors have to spend with patients in the encounter has gotten smaller and smaller. There’s this thing that in some offices a new patient visit should take 20 minutes and follow-ups should take seven minutes. I retired from practice in 2011, and I would never be able to function under this system now, because I’m a schmoozer, you know? I like to talk to patients.

And you’re a gastroenterologist, is that right?

I am a gastroenterologist, although I had a large proportion of my practice in general internal medicine. Along the way, I also got a certificate in psychodynamic psychotherapy, which I found very useful, not only in the practice of medicine — mind and body are linked, of course — but in two other places as well. I had a small psychotherapy practice, in addition to my medical practice, so it clearly helped there. And I work in clinical ethics now, and understanding family dynamics is really helpful when you are dealing with patients and families in conflict. I think that psychiatry especially — not so much psychopharmacology, but psychotherapy — is kind of the closest to medical humanities, in some ways.

That’s interesting. I read your bio and it talked about dynamic psychotherapy, but I didn’t know what that meant. I didn’t realize it refers to inter-family dynamics.

Psychodynamic refers to treatment basically anchored in Freudian theory. So it’s not cognitive behavioral therapy. It’s the old standard, you know? You talk about childhood, ego, super ego, all that stuff.

So you see that medical appointments are getting shorter and shorter, and there’s more and more use of technology, and like you’ve mentioned, the humanities could be a bit of a buffer against that. It would help us navigate that world. Can you be a bit more specific on how you see that relationship unfolding?

Just to be clear, it’s not really a buffer against technology per se, but rather, against the depersonalization of medicine that can result from increased technology and decreased time. I’ll tell you the truth. It’s tough for me to answer that question, because I’ve never functioned in this 20-minute visit environment, right? When I was last in practice, a new patient got an hour and a follow-up got a half an hour. That’s much harder to do today. So there was time to talk to them and sort of develop the relationship – the medical side as well as the interpersonal side.

I think that it’s a good question. I think medical humanities could have two different functions. It hopefully heightens physician sensitivity to the human condition, to what patients are feeling and going through. In addition, I believe that for many physicians it acts as a counterweight to the immersion in medicine and illness, and as a source of personal fulfillment. Of course, that second sense may not be true for everyone; people find fulfillment in life in many different ways.

Let’s talk a bit more about the tie-in with psychiatry because I’m really curious about this. You reviewed the book The Third Reich of Dreams. How do dreams and the subconscious relate to medicine?

Freudian theory has gotten a bit of a bad name over the years, and psychiatry has moved very much to psychopharmacology. But psychiatrists classically loved to analyze dreams, because a dream brings in not only what the immediate concerns are, but also all the things that you draw on in your background. So it’s a very interesting way to approach things. For some people. Others don’t dream, or they dream, but they don’t remember them.

And it’s not only dreams. I noticed many times in patient interactions in my medical practice, that people re-enact things from their childhood or early adulthood. Their mother didn’t love them, so they choose somebody who reminds them of their mother, because they think they’re going to fix it this time. That’s almost a cliche. But that sort of stuff happens a lot, and I think that’s really interesting.

I had sort of a subspecialty in inflammatory bowel disease, so a lot of Crohn’s and ulcerative colitis patients. And I had one young woman, not so young actually, who had very severe Crohn’s, and she wasn’t getting that much better. And I talked to her about putting her in the hospital and putting her on TPN (total parenteral nutrition) because she was losing so much weight, and she didn’t want to do that. And she said “I don’t want to go to the hospital. I’ll try, Dr Field. I’ll really try, because I’m telling you, I really don’t want to gain any more weight.” And then she said “I mean, I don’t want to lose any more weight.” And I just said, ”Well, that’s an interesting slip, right? What do you think that’s about?” And she paused, then she burst into tears. And then I got the whole story about her difficult relationship with her mother, and how her mother was always making nasty comments about her weight. This was all coming out; there was a whole huge story behind it. And there’s stories behind lots of people’s stuff, and I’m not saying her Crohn’s was due to that, not at all, but there are lots of patients who have this kind of thing in their background. You know, life story and narrative, and so that’s what I think Medical Humanities is about, the human narrative behind the patient and their illness. I think having some knowledge and experience, some background, that isn’t just medical but also is humanities-oriented can sometimes give you common ground with patients, or even just make you curious about them. All it took was saying, “that’s an interesting slip. What do you think about that?” And it was a whole other side of this patient. Medicine is about people, and people are not just their disease. They’re people with a disease. Sometimes you have to have that sort of global look. And I think the interaction with the humanities is helpful in that regard.

What’s your Gestalt sense of the relationship between our mental well-being and physical illness?

I have always felt that the two things influence each other, and it’s not necessarily a sharp line between them. I would certainly not go so far as to say that my patient’s experience with her mother caused her Crohn’s disease, but I think psychological states can certainly exacerbate symptoms. I mean, the gut, specifically, has its own extensive immune system. It has its own nervous system, responsive to inputs from the central nervous system, and the enteric nervous and immune systems are interrelated. And much of that has been well worked out, there’s this whole field of neurogastroenterology that deals with this.

So I think that’s recognized, clearly, that one’s psychological state can influence illness and sometimes worsen symptomatology. Many times I’ve seen “intractable” symptoms abate when a patient retires from a stressful job, for example. So I think stress has a very significant role in the production of symptomatology and perhaps in the pathophysiology, actually, in certain cases.

How about today? In 2025, it seems like the world of medicine is facing a lot of stress. There’s a lot of vaccine skepticism. People are antagonistic towards public health. COVID certainly didn’t help things. How do you see medical humanities being part of that landscape?

Well, I imagine that landscape is prominent in the United States in large part related to political developments.

I guess I’m influenced by my subscriptions to the New York Times, but Canada is the same. I mean, I feel like before COVID there were a few people that were skeptical of vaccines, but now everyone seems entitled to have an opinion about it and voice it readily. I’ve worked with mostly Chinese patients. I hear this from them all the time, but they’re generally a little bit more “toe the line” regarding what their government says they should do. But I think now people are more emboldened with some of these ideas.

One thing about the United States is that, as opposed to most of the northern European countries and Canada, the US has a very strong libertarian streak. Individuals. “Don’t tell me what to do.” We rebelled against England, settled the frontier, dispossessing everybody who was there in the process. So there’s this real idea of the right to be left alone. So the question is: does that feed the problem?

The reason I have a little question with the role of the humanities is when you look at people who are involved in medical humanities — and this may only be my impression — I think they tend to sort of cluster closer to the left. And more of them are the people who will take vaccines and things like that. But I don’t know that. I wish there were a larger role for medical humanities in smoothing over these political differences and polarization. I think it would be nice if there were. For example, people talk about book clubs and reading groups. I’m a big believer in them, and they’re very popular, but most of the time, book clubs are self-assorting entities, right? Go with people in your club. The people in your reading group are often people who probably feel somewhat the way you do. It would be great to have reading groups with multiple viewpoints represented, as long as their discussions don’t devolve into chaos. These days, that’s a real risk. A big problem in America is that we’re becoming more and more polarized.

The trick is to bridge that divide somehow.

A big problem is that in so many cases, there is no trust. When everyone has their own facts, it’s the end of the idea of an absolute truth. Each side has its own truth. You have your facts; I have my facts.

I guess, as a historian, we are taught gradually that truth is kind of like that, right? One thing I remember learning in university is this idea that facts can be a subjective experience for people.

That’s true. The subjective interpretation will vary and can color the way history is written. And history is written by the victors, right? But facts are facts.

Given that that’s the landscape, what would you like to see MedHum evolve into over time?

Well, It was set up originally as a Medical Humanities Resource. That is, it originally came out of the Literature, Arts and Medicine database, right? So I still like to look at it as a resource. But I’d also like it to be a place where people go for well-written and insightful writing, commenting on aspects of the interface of health, wellness, current events, and literature and the arts. I think it should exist, as the mission statement indicates, at the nexus of medicine and the wider society, and comment on the interactions there. MedHum is brand new, so you have to see how it develops. I’d like it to be a source of good writing, good insightful and perhaps incisive commentary.

I was going to ask you about what you thought about the relationship of technology in medicine. A lot of the time when people talk about humanities and the liberal arts education — like history and English majors — one thing they don’t spend a lot of time on is cutting edge technology. A lot of these studies go back to things that occurred decades ago. But medical humanities is a little bit different, because it wrestles with these things that are happening right now. There’s a certain degree of urgency. And in medicine, new things are coming out every couple of years. As soon as AI comes out, we adopt it for some medical purpose. So we’re constantly trying to push that boundary. Where do you see that going as a person with a humanities background?

One of the things about all the technology is it’s very important to ask the questions about what you’re going to do with the technology. Where it’s going to go, how we can protect things like privacy and vulnerable people. I mean, bioethics has a lot to say about technology like AI and big data and privacy. It also has a huge amount to say about other technologies, like reproductive technologies, transplantation, and the like. But I think you’re talking about two different things. The time-honored majors in university, English and history, the number of people who are electing to major in these is dropping, while the number of people majoring in the STEM fields is rising. So that’s a process that’s happening, and it’s going to continue to happen, just because that’s where things are going. I think that a role for medical humanities in that mix is that of humanizing the processes which technology facilitates and also asking important questions about technology. In terms of AI, since you brought it up, what does it mean to be human? As the machines get better and better, and given that we often use cognition as an indicator of life — ‘sentient beings” — where then is the line? When you can get psychotherapy from a chat bot what does it actually say about interpersonal interaction, what does it actually mean to interact as a human being? Where does this logically end up? No one knows. So I think thinking and writing from a humanities point of view about technology brings a new perspective to the subject. It may be the best way to contextualize our progress and at the same time create guardrails where needed. Because they will be needed.

And there’s just been so much in the news about the use of AI to write fiction. To write college essays. When a chatbot is creating, can it be said to have an imagination? To employ metaphor, or allegory, or irony? And ultimately, how will technology limit our adeptness with basic human interaction? There’s lots of dystopian fiction written about this kind of thing.

If AI continues to evolve and people start to use it as doctors, where do you see a medical encounter in the future? What does it turn into? What does it look like?

There are studies that show that AI is comparable to or better than most radiologists looking for breast lesions. And there’s lots and lots of ways that AI can help in medicine, including increasing diagnostic accuracy across a number of areas, screening potential drug candidates, personalizing treatment plans, and the like. Interestingly, there is a suggestion that the use of AI-assisted technology may lead to a subtle loss of the physician’s native ability to evaluate, what is referred to as “de-skilling.” An interesting and sobering thought. Overall, though, I think AI can be a huge help in medicine, with its potential only beginning to be appreciated. But I would hope that AI would never replace doctors, because AI can’t empathize, can’t engage in a meaningful relationship with a patient, even if it can create the words. I, for one, would always know that it was a machine interacting with me, and that would color my response.

For diagnostic purposes, it will weigh the relative possibilities, but some of that diagnostic process — especially in terms of general medicine — is intuition. There are some areas where AI is less helpful. AI can screen data and suggest diagnoses and investigations, but sometimes patients would come in, and the doctor will think “something just doesn’t smell right here. There’s something not hanging together about this” or “this is somebody who doesn’t normally complain, and now they’re complaining, and that’s different. What’s going on here now?” AI may, may evolve to be able to catch up to that too, because my understanding is that it’s just becoming better and better. But it’s certainly a useful adjunct. I know in our medical school curriculum there’s a whole session on how to engage with AI and how to use it. And I think that’s good. It’s a tool, and it’s really helpful.

One more change of gears. How did you go from the liberal arts background into medical school? Was there a transition, or was that something you always wanted to do? Or was the liberal arts a bit of a detour? How did that evolve?

I always wanted to be a doctor, but I also always knew that I wasn’t going to spend four years at a college that was very strong in liberal arts and spend it doing biology or some other concentration in the sciences. There were just too many other things that I liked. I had a bunch of AP credits coming out of high school, so I didn’t have to take many science courses — and I didn’t — but I took enough, and the rest of the time it was English, history and other humanities courses. I thought that was important before I went to medical school. And I generally think that it’s important.

Where did you get that idea as a 17 or 18-year-old?

Probably simply from the fact that I was too interested in so many things. I was fascinated by medicine, but I always read a lot, and I was much more attracted to humanities in college, knowing that I was going to go to medical school afterwards. I knew I’d be spending the rest of my professional life in medicine, so I wanted to explore non-medical areas in college.

When you went into medicine, did you think that you were leaving the humanities part behind, or did you always think the two would stay entwined?

I always thought the two would stay entwined. At one point I actually thought of doing psychiatry — as I said earlier, that always seemed to me to be the specialty most intertwined with the humanities — but I decided not to. But no, I didn’t leave the humanities behind.

One thing I’ve always appreciated about the United States is their undergraduate education is much more permissive of people pursuing other things and then going to medical school later. In other countries, like in Canada, undergraduate learning is very much more pre-defined. If you want to become a doctor, you have to do life science, and life science leads into medicine. It’s technically not written anywhere, but everyone does it this way, and I think you miss out on a lot of stuff that you could learn that might help you later, but in a more abstract way.

I think a four-year general undergraduate curriculum can certainly broaden your horizons. Medical school was four years of really hard work; College was the last time, at least for the next four years, that I could do something else in depth with the other side of my brain.

Or even if we just say those four years exist for themselves. It’s a great four years. It doesn’t matter if it affects you later, necessarily. We could die tomorrow. You enjoyed your college years. Let’s circle back. Why is medical humanities important in today’s world?

I feel like medical humanities is important because I just think it makes us broader and deeper and hopefully more empathic human beings. And that’s always a good thing, and I think patients benefit from that. I hear a lot of complaints from family and friends about medical care these days (because let’s face it, I’m at the age where my contemporaries all talk about their medical care) and often their biggest complaint is that the doctor’s visit was very short or they felt rushed. Unfortunately, a number of people are unhappy with the nature of doctor-patient interactions these days. But I don’t know that the humanities alone are going to make that better. So much of it is driven by insurance companies, reimbursements, and documentation needs — all things that are beyond our control.

Thank you very much for your time.

Web photo by Medhum.

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DAVID HSU: What do you think is the importance of medical humanities to you at this point? 

JACKIE DUFFIN: I think it is a very satisfying way of filling in the gaps that are generated by traditional medical training and medical experience. It invites reflection, and it invites growth, and it especially encourages criticism. And those things were certainly not there in my training. Therefore, it is comforting and inspiring, both of those things for me.  

When you say it that way, there’s a certain subversive quality to medical humanities. Am I catching your answer right?  

Yes, I guess that is exactly right. Subversiveness goes with the territory of what we do as historians as well. Everyone thinks that history is about the past, but the questions that we ask of the past are generated by the present and also the inherited wisdom that we have. And there has to be curiosity and a willingness to admit that the trajectory might not have been as straightforward as is sometimes pretended.  

How do you respond to the saying that basically history is written by the victors? 

That statement is also a reminder that what might be out there as the master narrative isn’t exactly the truth or isn’t exactly the whole story. And the losers will have their own story. And sometimes that’s worth exploring. Of course, my view of medical humanities is very much affected by the fact that I am a historian. And more than any other aspect of medical humanities … that’s what interests me the most. In fact, I don’t mind admitting that the medical humanities boom that we’ve witnessed in the last decade and a half or so has been a wonderful vehicle for enhancing the presence of history in medical schools​,​ and our visibility. I’m happy to hitch my wagon to it, but I don’t claim any expertise in all the other disciplines that participate.  

One of the things I think is useful for history with respect to ​present and ​future doctors is how history is a mirror image of the clinical process and the scientific process. And that’s something that I raise​d​ with my students all the time when I was teaching, that you begin with a question. As medical practitioners, you ​also ​have a question​;​ ​i​t is the chief complaint of the patient. What is wrong with me? Why do I feel this way? And as a doctor, you consult the patient, you explore the history, you do the physical examination, and then you touch base with the clinical wisdom that’s available to you through ​the medical ​literature. And you come up with a diagnosis, which ​​determines the direction of action. As a historian, you have the question​:​ where did this come from? Or why do we do this? Or what happened then? And with your question, you interrogate the past, looking at all of what has already been published, which is the equivalent of the medical literature, but also looking at things that have been ignored, like the stories of the losers, for example. And you come up with an interpretation. And that is a direct parallel with the ​process of ​diagnosis. You can push this even further to make an analogy with a scientific experiment where you have the hypothesis, the method, et cetera, and you come up with a conclusion. I think that demonstrating history as a discipline to healthcare professionals opens up their imaginations to seeing the practice of what they do is something that’s malleable, that’s anchored in time, that’s affected by culture and society. So, my role in the medical school was to do that. It was a privileged position. But I had no idea how successful I ever was. I have a sneaky suspicion that a lot of my faculty colleagues and maybe a large number of the students just thought I was there for comic relief and entertaining stories to be told in the meantime. That’s okay. I accept that if that gave me permission to weasel my way into the curriculum or introduce new ideas. 

Tell me a little bit about this medical humanities boom over the last 15 years. What’s going on?  

As you know, medical schools are evaluated. They’re accredited by committees. And things come along that are the flavor of the month. ​P​rior to the medical humanities boom, there was an ethics boom. Many medical schools didn’t have ethics, but they looked around and they thought, oh, we better get ethics because everyone has ethics. If they got ethics, it made them look ethical. That happened in the 90s. I saw that as a real problem for people teaching history of medicine. I got along great with our ethicist at Queen’s. It wasn’t her fault, but she was my biggest enemy. Because if the school had to devote some time to what they called ​“​soft science,​”​ they would rather have the ethicist than the historian because the ethicist got them brownie points on the accreditation. ​​ 

​​T​here was a time when the American Association for the History of Medicine was meeting in Chicago in May 2014. And we happened to be meeting at the same time as the Academy for Professionalism in Healthcare. So the brass of the American Association asked to have a meeting with their leaders to find out how they managed to convince all the medical schools they needed ethics and in particular succeeded in having questions about ethics education in the exit surveys. They did not really understand our problem. I think ethics had the media going for it and the power of a number of ​high-profile​ malpractice cases that had come along. ​It​ became obvious that patients wanted to make sure their doctors were legal and ethical, and ​t​he schools wanted to give the students tools to address these concepts. It became almost urgent. 

In fact, I did some Medline searches on this at the time. The number of articles addressing history of medicine basically tanked. And the number of articles addressing medical ethics soared. There was always an interest in medical ethics. It goes way back. Hippocrates even talks about this. And then there was codification in the 18th century. But what ​arose ​in the late 20th century was this concern that it should be transferred to the students as some kind of rubric that would help them in their future to ​educate them and help them ​behave ​ethically. ​And then that sort of plateaued and along came medical humanities. 

Accreditation saw ​​this as very good for student life. They saw it as very good for student education. If you could enhance the possibility of getting a positive accreditation of your medical school, then you would acknowledge that you should have something called medical humanities. But under that umbrella, there could be just about anything. And that’s the problem with it as a discipline. It doesn’t really have a single method. It embraces so many other sorts of​ fields​. That’s the beauty of it, but it’s also the confusion of it when it tries to make its way in a curriculum that is as rigid as a medical school structure. 

In Canada we now have a society for ​Medical Humanities, the Canadian Association for Health Humanities​. I’ve attended some of the meetings but the disappointing thing about it from my perspective is there’s almost never anything about history. 

I’m curious. If history is not emphasized as part of medical humanities what is? 

Presumably it’s ethics again and reactions to technology. I think ethics underpins a lot of it​,​ but medical ethics is a very distinct discipline​,​ as is history. We’re not the same thing. We respect each other but we’re very different. So medical humanities usually include, at the Canadian meetings at least, a lot of literature, of readings, both fiction and nonfiction. It includes the arts, music, poetry, visual imagery, trauma, drama, dance, etc. And often the papers in the meetings that I’ve attended are​ almost all​ about individual case studies​: ​e.g, “We tried this at our medical school​;​ and then we did an after​-​survey about whether it worked or not. Of course, our students loved it because it was fascinating​,​ and it wasn’t memorizing the elements in the periodic table. It was something that took them out of themselves.” Often medical students have other hobbies before they get to medical school, which are sadly neglected because there’s no time for anything else. And these activities provide an outlet for them to recover their previous selves and their identity.  

I think another agenda of ​Medical Humanities ​is to raise awareness of the differences between peoples — the difference between your patients, for example, and yourself, and to be prepared to tolerate it. So that’s a subliminal message of many of these things, causing you to see the world and other people in a different and more tolerant way. That’s basically what goes on in the medical humanities conferences. People get very excited about these opportunities, a drama presentation, a collect​ive​ reading, something that they might have done together, or artwork that medical students do based on their clinical learning and then having a show about it. That kind of thing gets reported. And then … it sort of sinks into an oblivion until the next meeting comes ​​​​along.  

So it sounds like the way you’re describing it, there’s a little bit of the study of history of medicine versus medical humanities. The two are not fully in sync in your mind.  

No, they’re not fully in sync in my mind, but I accept and welcome history being seen as part of ​ ​medical humanities. I think it’s an opportunity for us as historians to maintain our place and our credibility in medical schools.  

The presence of history in medical education has gone up and down over the centuries. There have been full-fledged chairs in History of Medicine. In a distant past, they went away​ and​ they came back. What is expected of it has probably also changed through time. But now, since it seems medical humanities is an easier way​ ​to open the door to medical schools, history can be part of it. I don’t know. It would be really interesting to find out if ethicists feel the same way as I do about it. I find that some medical humanities programs are peopled by or run by doctors who are so well-intentioned​–​ very, very well-intentioned​–​ but they really don’t have any expertise in anything but medicine. The best of them, obviously, are experienced clinicians who’ve had a lot of encounters and are thoughtful and reflective about those encounters. But there’s no method. It’s not a single discipline. It’s a quilt with a whole bunch of different patches in it.  

What do you think about medical humanities and maybe more specifically the history of medicine as a vehicle for the broader mass of people out there?  

I’ve written ​11 ​books and the most recent one to get published is this one. [She holds up a copy of ​Covid-19: A History​]. What I was doing was getting it down for everyone. It’s a history for everyone. It’s not aimed at medical students or doctors or anybody in particular. It’s aimed at Canadians basically, but it talks about the whole pandemic from a global perspective. What I want to do is remind people of the personal stories that go with the pandemic, about the dilemmas of decision-making and policy choices, about the scientific endeavors that are so easy to mock or make fun of. And ​clearly,​ I’m revealing my colors. I believe in vaccines. I believed in the public health measures. I point out in this book about the value of quarantine. When you don’t know what the pathogen is and you haven’t got a clue what the incubation time is because it’s a previously unknown pathogen, quarantine is not a stupid thing to do​,​ because you are waiting to find out how dangerous it ​might ​be and put some parameters around it. I think​–​ and again, I’m speaking only from a history perspective, not medical humanities in general​–​ I think it was important to unpack what was behind those decisions that many people got so angry about. And yet they were lifesaving decisions in many cases. Sometimes perhaps it was over the top, but it was because we didn’t know what we were confronting. 

During that book writing, I served as a volunteer contact tracer at the Kingston ​[Ontario] ​Public Health Unit. I had to phone up citizens all over our area and get them to quarantine because they’d been in contact with someone who had COVID. That was very eye-opening for me because I realized at what level you had to pitch why it was a good thing to do. And at the outset, when we didn’t know what the parameters were, we were telling people who’d been exposed to COVID to stay home for 14 days. Kingston was the only health unit to use volunteer contact tracers, but we worked really hard and Kingston had the best ​​outcomes of COVID cases in the country for a brief time. It didn’t last forever, but it was like a flagrant, on-the-spot demonstration of something that has been known for years, since at least 14^th-century plague.  

What do you make of that now that we’re in 2025 and people are so over this stuff now​,​ that​ ​there’s this feeling I get that people are saying we will never go into quarantine again? 

That’s why I wrote the book. Actually, I was invited to write it, and I had to think about whether I wanted to or not. One of the reasons I decided to write about it was that my thesis advisor, Mirko Grmek, wrote a history of AIDS right at the beginning of the pandemic. And I thought, well, I can’t write a history of COVID because it isn’t over and it may never be over. We may always have COVID. And then I remembered that Grmek had written that history of AIDS at the beginning of the AIDS epidemic. He set down where it came from. He studied the historical possibilities. He had the science too. I realized he was at the end of his life, and I’m at the end of my life. And I thought, OK, maybe this is what I need to do​,​ to accept the task of writing it as it is, right now. Now ​I’m very depressed​ by these negative attitudes. But I do hope that when the next pandemic comes-​-​and there will be another pandemic​,​ with a new pathogen that we haven’t seen before​,​ and there will be conspiracy theories about where it came from​–​ I hope that the public health agencies will remember that quarantine from 14^th-century plague worked really well​,​ and that’s what we need to do again if we don’t want to overwhelm our finite resources in hospitals and health care units to look after people. The more you implement those measures, the fewer people die. It makes a huge difference​,​ and you can actually see it. So the story is there. Whether or not it will be believed, whether or not the argument can convince the naysayers, I have no idea. All I did was set it down and hope.  

You have a historian hat, which is the critical, sometimes subversive side and then you also have the medical doctor establishment side, the scientific side. It gives you a unique lens to look at the COVID pandemic and the consequences that came afterwards.  

It’s been the story of my life. I worked in cancer care at the end of my career at Queen’s and patients would tell me really interesting things​.​ I loved talking to them and hearing what they thought about what was going on. And some of them held what I would think of as wacky ideas or they’d utter doctor​-​blaming ideas. Then the doctor in me would feel very defensive about their accusations of the mistakes or the neglect of my colleagues, even colleagues I’d never met. But when it comes to the history of medicine, I feel terribly responsible for the bad things that doctors may have done, even if it was not deliberate, but out of ignorance, because they didn’t know what was going to be discovered next​;​ or ​due to ​misplaced enthusiasm for something that turned out not to be as great as everybody thought it would be. And I’ve seen that with respect to certain drugs in my career. I’m old enough to remember thalidomide babies​;​ I was a child when that happened. But the impact of it was enormous​: ​what pills could do to us and how they might harm us. There’s a new biography out that I ​reviewed for ​Medhum of Francis Kelsey, the Canadian​-​born American health official who spared the United States from the damages of thalidomide. An amazing and courageous decision because there was great pressure on her to approve the drug and she didn’t. So we had the tragedy in Canada and they didn’t in the United States​,​ which was fascinating for me to learn at this stage of my life, because I remember being so horrified and ​thinking, ​how could doctors let us down? 

There are also other procedures that were once considered important to do that we have done away with, not because they shouldn’t ever have been used, but because something so much better came along. The most striking example of that that I remember are pneumoencephalograms. Pre-CT scans, if you thought there might be a space​-​occupying lesion in the brain, you put the patient under a sort of an anesthetic. You took out a modicum of CSF and injected the same volume of air. And then you strapped them to a chair and you ​​rotated them around, taking x-rays while the bubble of air moved all around the brain to see if there was a space​-​occupying lesion. It was brutal, painful, but it was the only way to find out if there was a space​-​occupying lesion in there. And of course, you could tell only if it was bulging on the surface of the brain. It took days for patients to recover with headache and vomiting. Every medical student in my class of​ ​1974 was required to go and witness one of these so that we would not order it frivolously. And in that same year, CAT scans were introduced and nobody would ever do a pneumoencephalogram again. Ever, ever, ever. But does that mean that all the doctors who were involved in ordering pneumoencephalograms or taking the x-rays were evildoers? I don’t think so. They were trying to help. They were trying to make a diagnosis. But it was excruciating.  

If you could fix medical education and its relationship to history, what would you want done?  

I’ve written about this for a long time. I was so lucky at Queen’s; I really was. They let me get away with a lot. From my hire in 1988 until I retired, I thought the best way to bring history into medical education was to infiltrate it. The historian has to be very tolerant and very flexible. But what you do is you introduce the history of whatever it is they’re studying at any given time. History of anatomy in anatomy if they’re doing the anatomy course. History of physiology in physiology. History of pathology (essentially is the history of disease) in pathology. The timing really is everything because it’s synergistic with what they’re learning at the same time.  

With that method, you are preceded by a guy in a white coat, and you’re followed by a guy in a white coat. It gives you credibility vicariously by the people who are around you. But it makes it seem relevant in a way that otherwise it ​wouldn’t be​. If you make ​it ​an optional, elective course, the students automatically know that it’s not important. So, I refused to teach electives when I got hired at Queens, which meant that I had to meet every department head to beg for time to do a history session. There were 25 departments at the time, and only three said yes. They were​–​ anatomy, pathology, and obstetrics; I’m forever grateful.  

Early on, faculty members of those departments would come to my inaugural class on the history of their discipline. I think they were slightly checking out how “nice” I would be to their field: the history of obstetrics, for example. But they approved the approach. The most willing departments were those units in the medical school with a lot of curriculum hours​,​ ​s​o they were able to feel generous. ​“​We will give her an hour.​”​ 

But one department head said to me, “I can’t do that. History, I love history. You’d be invited to give an ​after-dinner​ speech at our annual meeting. That would be really good. But we only have 80 hours in the curriculum. And if I gave you one of those hours, they might miss something important and kill somebody.”  

I said, “Oh, thank you​,​” ​a​nd I ​went​ back to my office feeling rejected. Only later did I think of the right reply, “If you don’t give me one of your 80 hours to make them skeptical about everything else you’re going to teach them in the other 79 hours, then they really might kill somebody.” That was the answer I should have said.  

It’s about the time constraint; you can’t offer an entire course. Medical students are not going to be historians. They’re going to be doctors. So what you want to do is sensitize them to the fact that what they see as knowledge now is something that has evolved through time, through human endeavor, something that is destined to change in the future. So history is a reminder of life-long learning. And if you time it right, then it is relevant and interesting. Not all students are going to like it, but they don’t all like pharmacology either. 

And the other thing that the medical school let me do, bless their hearts, is to grant my wish for one question on every exam.  

I remember this actually.  

It was a question of credibility; a way of forcing the medical school to commit to the idea that history was important.  

All right. To wrap up, we’ll get back to Medhum. what would you like to see us do in the months and years to come? 

I’m really a special interest voter on this because I was for 25 years involved with the Literature Arts and Medicine Database. And I contributed hundreds of annotations to that database​. ​I hope MedHum is a place where people who want to use literature–mostly literature is what I think of, but there​ are ​other things there, ​for example ​film​ reviews​–in a way that will deepen their understanding of a situation, or for enhancing education, or for whatever purpose, because that’s how the database was used, that it will be there, accessible to people who want those things.  

​​​​So for me, I get to go there when I feel like it. I get to browse. I get to pick around. I already knew some of the people and from our meetings, I’ve gotten to know new ones. I think you, people of your vintage​,​ should be deciding its purpose, in terms of determining the direction and the flavor of this entity, which hopefully will have a big reach and get to the people who need to see i​​t​. You​ ​​have a better sense. You’re closer to the users. I’m not trying to be gloomy about it. I just know that it’s entirely possible that it needs to go someplace that I can’t even imagine. 

Dr. Jacalyn Duffin was the Hannah Chair of the History of Medicine at Queen’s University from 1988 to 2017. She was also a practising hematologist. In 2020, she was awarded the Order of Canada. 

More importantly, she’s one of my favorite people in the world. Medical school wouldn’t have been the same without her gentle encouragement and unending enthusiasm. Dr. Duffin, thanks for everything. 

Web image by Medhum.org

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Lucy
Felice, first of all, can you talk a little about your background, what you were doing professionally just before and during the time you did the Database?

Felice
I was on the faculty at NYU School of Medicine. I was trained with a PhD in physiology, was hired as a physiologist, and I taught medical students physiology, but most of my life. I’ve had this dual interest in literature and in biology. And in fact, that’s from high school on, and when I started college, I had to make a decision about whether to major in English or in biology. And I decided to major in biology because I thought, well, I can do literature on my own any day, and I’ll never be able to make it a profession. Whereas, you know, I can’t do science on my own, I have to be trained. And so that was the path I took, which was a science path, but I never lost my interest in reading and thinking about literary things. And let’s see, at one point I decided to start a discussion group with the medical students and any faculty who were interested. It was a small group, and it changed from year to year, but we met once a month, and I would, initially, pick out readings. They were short readings because students don’t have much time to read non-medical stuff– poetry, short stories, essays, and that continued for several years. At the same time, and really, I have to say that without my husband’s help and interest in what I was doing none of this would have happened because he of course, was interested in the use of technology, computers in medical education, but he was also interested in what I was doing with my literary stuff. So he set up a database for me on my own computer.

Lucy
And this was in the early 1990s.

Felice 
Yes, 1993 or thereabouts; he set up a computer program for me so that I could keep track of the readings that I was doing with the students, because I didn’t want to repeat anything with the same group, essentially. And I also was kind of following the work of Joanne Trautman Banks, who was a pioneer. She really was the one who started the field. I have to give her full credit. In 1978 she published a book of annotations of literature that had to do with medicine. I don’t really remember how I found it, but it was very helpful in my own work with the students. I decided, basically, to copy what she did, with some modifications of my own, in my own database that my husband Marty Nachbar helped me to set up. So to begin with, that’s what we did. Marty’s idea was that I should recruit other people in the field who were doing this kind of teaching with their students, and who might be interested in submitting annotations to this database. And secondly, that we should make it online, so that anybody out there who has access to the internet could stumble on this thing and maybe get interested. And the idea, his idea, was that it might expand the whole field, which was, at that time, just literature and medicine.

Lucy 
I had the privilege of knowing your husband and saw how he was really ahead of his field.

Felice 
He was a visionary. Definitely not just with that, but with all kinds of stuff that had to do with tech. You know, computers in medical education.

Lucy 
He was a big help to me when I had a grant from the NIH to do a project. He really zeroed in on its strengths, its weaknesses, and helped me in a very generous way. Just to backtrack a little bit, how did you choose the work that you shared with the students? What were you looking for when you selected certain work?

Felice 
I really had a pretty broad range of what I chose, and how I looked for it. Of course, if it was something to do with doctor or resident or medical student experience with patients– that was what I was looking for. But then there was patient experience, also from the patient’s perspective, how they were interacting, and what their feelings were about their illness or disabilities. And then as I started getting interested in this, I decided I really needed more training, and I decided to get a master’s degree, not in literature, but in something that was called at that point, humanities and social thought– that was the track at NYU in one of their master’s programs. And through that, I got really interested in the social thought part and societal issues that directly or indirectly affected medical practice, patient experience, and so forth. So that really also was important for me to get that degree, because when I started recruiting other faculty from other institutions, they [thought] I was an imposter. I was coming into that field without any background other than my interest in it. And they did not think highly of my intrusion into their field, and I don’t blame them. But you know, when they got to know me and what I was doing, they sort of became more accepting. But the thing that really clinched it was when I started this degree program, because then they felt okay, she’s serious. She’s going to get some professional training that makes it more legitimate to be associated with her. But of course, it was a really great thing for me, because it did give me a lot more background for what I was doing and what I would like to have been doing.

Lucy
You were very successful in recruiting a national board of editors.

Felice
Yes–the contributors were from all different places. They were very interested in making this a national internet-based project, because they were interested in furthering the field, and they saw the potential if it was on the internet, But initially I also had two NYU medical students who helped me choose material and write annotations. And then the site, especially once it became web based, was heavily used by so many and got so many hits–about a million a year. 

Lucy
It’s clear that the users went beyond medical students and physicians. What do you think attracted the wider audience?

Felice 
Well, I would occasionally get some notes, you know– I think there was a mechanism– I don’t remember exactly, where a user could contact me or somebody who was paying attention at NYU. What I found really interesting was there were patients who were using it. I don’t know what percentage of the users were patients, but there were patients who found stuff that was helpful to what they were going through. And so that was interesting to me, and I thought it was important, you know, it wasn’t my original intent to reach out to patients. It was really more of an education-based thing, but there it was. And why not?

Lucy 
We’re all patients at some point in our lives.

Felice 
Yes, right. That’s exactly true– issues about death and dying, not necessarily for the individual person, user, but family of theirs, friends who were in serious medical situations–all of that, it makes, made sense. So the audience became very broad.

Lucy 
And also you expanded the format.

Felice 
Well, first of all, when we started in 1993 there wasn’t a worldwide web. It didn’t exist. There was an internet. But the program that allowed people to access the internet was called Gopher, G, O, P, H, E, R. It was much more primitive but that’s what we started with, we put the annotations on this gopher program. Marty’s associate, Roy Smith, was instrumental in helping to set up the gopher program. Roy maintained his interest in our project as it moved forward. Then maybe a year or two later, I don’t know what the time lag was, but when the World Wide Web became available to anybody, I recognized that that would be really important, because it allowed you to make links with hypertext. You could make links between annotations; if you were referring from one thing to another; you could make links to art if you were annotating an art piece. You could make links –that was so key. So the web was just great. That was the way to go. And we were just lucky that it was there pretty early on.

Lucy
You recognized its potential.

Felice
And that wasn’t just Marty, actually. That was me.

Lucy 
And you chose the format of annotation versus a longer review. Was your goal to divide it into summary and commentary, specifically so that people understood what the work was about, but also how it connected to medicine and health? 

Felice 
I was going back to the format, or a slight modification of the book that Joanne Banks published in 1978. I think she used key words and a short paragraph about what the work was about. I think I expanded it to make both a summary and a commentary, because I thought that would be more helpful to people. I was modeling this thing after what she had done in 1978 and then again, she published another version, an updated version, I think, in 1982. In fact she and I had a phone conversation about our respective projects. 

Lucy 
One of the strengths of the web site was open access. You didn’t have to subscribe. That was important to you, I would imagine,

Felice 
Marty was very insistent on that. There were people who said, Oh, you should be charging something or whatever. And he said, No, if you want to make people aware of this field, you just make it completely accessible,

Lucy 
And it stayed that way, and the new site is open access. That leads me to ask, what do you think the role of health humanities is now? 

Felice 
You know, with all this artificial intelligence stuff, –I was reading about, or I saw online, a woman who, instead of having people as friends, she has some kind of an AI setup. And she’s not the only one, apparently, who’s, you know, relying instead of on human contact –on these bots. To me, it’s mind boggling. So I think there is definitely still importance to making this kind of work accessible and promoting it. And I also think it still should be part of medical education, health education, and it should be accessible to anybody who wants it.

Lucy 
Moving on to our new project. It’s based on the database but one of the differences, in my view, is that we’re including reviews that are a little more in depth than the annotations. How do you feel about what’s going on with the new site and how it’s evolved? And you can be honest. I mean, please.

Felice 
I think it is different from the database, and that’s good. It’s fine. You have your own vision of what you’d like to accomplish, and I think it’s working well, you’ve recruited people who’ve written some interesting things, not annotations, but more like essays. And you’ve expanded it so you have included art. I don’t know what else you’re planning to do, but I think it’s a good site, it’s valuable. It’s nice to have something up there that’s medical humanities related. And I really admire what you’ve done. 

Lucy 
Thank you. I think one difference is, you pioneered using links in the old database, and we’re using links much more now that it’s possible to do so. So if we review a book, then the author is interviewed by someone, we might link to the YouTube video. That’s been interesting to do and adds to what we can offer. It’s hard to know who’s using the site. We’re still in the very early stages, but I think it has a fairly broad appeal beyond just practitioners whether they’re doctors, nurses, or trainees, and I’m trying to have the public be interested in the work that we choose.

Felice 
I think you have your vision of the website, and that’s what you’ve voiced here, but it’s not my view of medical humanities.

In fact, I found this online at George Washington University, on their medical humanities site, and they quote me, but they don’t acknowledge that it was me, where I wrote: “Medical Humanities is an interdisciplinary field that includes the humanities, social sciences and the arts and their application to medical education and practice,” and then whatever education materials people develop that are designed “to help students develop and nurture skills of observation, analysis, empathy and self-reflection, skills that are essential for humane medical care.” [Quotes are from the GW website and were at the original NYU medical humanities site.] Especially the first part that I read, I mean that it is a broad, interdisciplinary scholarly field. That is how I have always, or at least for many years, maybe not in the very beginning, looked at it. So that’s a little different from what you are trying to do. And I’m not criticizing you in any way. I mean, I’m just recognizing that there is a difference in what you want to do with your site and what we did with ours.

Lucy 
One of the things that the database could do was show different cultures and describe experiences that the students themselves might not have directly. MedHum is a bridge into other cultures, and that’s what I mean when I say it is a lens on the human experience. That by reading literature, by reading about other societies, and what people who live in those societies go through, which you know only too well, it broadens your ability, hopefully, to empathize and to understand the differences among people.

Thank you, Felice for speaking with me today and for your editorial guidance throughout the years. It’s been an extremely fruitful collaboration.

Web image by Medhum.org

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DAVID HSU: What are you up to these days? What are you working on?

JACK COULEHAN: In terms of creativity, I’m working on a new collection of poems that I’m editing now. I’m also the book review editor of The Pharos magazine, and that takes up an unexpectedly large amount of time.

DAVID HSU: Do you practice medicine at all anymore?

JACK COULEHAN: No, actually, I retired about 12 years ago now, but I do still teach medical students as a volunteer. It’s a class that I began back when I started at Stony Brook in 1991. It’s called Medicine in Society, and it’s a first-year seminar course that deals with human, social, and interpersonal issues in medicine. We use a lot of literature and film in that and so I’m still a group leader. We also have a master’s degree program in medical humanities, and I teach a course in that. So I still keep my hand a little bit in teaching.

DAVID HSU: Given that you’re doing all this work in the humanities, what do you think about the relationship between medicine and the humanities?

JACK COULEHAN: You know, that’s a surprisingly difficult question for me, because I’ve always had this kind of love/hate relationship with the term medical humanities, because I think it doesn’t quite capture the problem or the issues that we’re trying to address and what we do. In a lot of my work, I tend to cite a piece that Rafael Campo wrote in JAMA in 2005, entitled “The Medical Humanities, For Lack of a Better Term.”  What I’ve really always thought is that what we’re trying to do is to teach students and ourselves, really, to become more reflective and more thoughtful…[Campo] used the terms reconnection, renewal, and meaning. . I think we’re not necessarily encouraged in our profession to become aware of our own needs, to become reflective, thoughtful, to become focused on the personhood of patients and so on. And so I think, through discussion, through examples in literature, film, etc., we can really try to address these issues. I guess the term medical humanities is fine as a placeholder, but I wish there was a better term for it. But, aside from reflecting on the name itself, those are the things I think we’re trying to address in medical humanities. 

When I started in this business, pretty long ago, I was thinking about [medical humanities] mostly in terms of becoming a better doctor by improving one’s empathic skills and reflecting on the patient as a person. But as time has gone on, I’ve become more aware that I think it’s really something that makes you a better person and also more able to cope with the stresses and the challenges of modern medicine. So, I think it works both ways.

DAVID HSU: What are your criticisms of the way medicine is practiced now, since people aren’t doing all this [reconnection, renewal, and meaning]?

JACK COULEHAN:  First of all, I think medicine has to be understood in our current overall culture of increasing subspecialization and focusing on narrower and narrower fields [of practice], using more and more technological instruments, tools, and machines. Also, medicine is more and more controlled by larger interests that are not necessarily oriented towards the primary values of medicine.  There are virtually no constraints on the use of technology, the focus is entirely on disease, on narrow perspectives on disease.  

What I’m saying is that all this detracts from the ability necessary to see the patient in terms other than as an object that has a disease or a person who has a specific problem that needs to be addressed.

Just to give my personal examples, when you get to be 81 years old, as I am, you have a lot of opportunities to experience being a patient. I saw a cardiologist a couple of weeks ago who is an older cardiologist, and he was what I would call an ideal physician. He does interventional cardiology, he’s a professor, well-published, and yet his approach, I would consider to be very therapeutic–very positive, trusting and good eye contact. He wasn’t looking at the computer. He was just a genuine person, genuinely interested. I’ve also gone to a urologist who was just the reverse. Equally specialized in the same medical system, but one who was all about the particular issue, the particular organ, and the particular thing that’s happening to that organ.

It’s possible, you know, when you start talking about the kind of values and the kind of stresses that modern physicians are under, the first response you get is that, “Oh, yeah, that’s great. That’s what we should do.”  But you know, we only have 15 minutes [and] we have to deal with the EMR, etc. But that belies the fact that there are physicians out there who are very good at actual doctoring and others who aren’t, and I think that’s because, well, let’s say, look at those two things on a spectrum…I would say that there is the opportunity, even in today’s world, to help students keep their belief, which most of them have, I think, when they begin, that doctoring is really interested in persons. And I think we could increase the percentage of physicians who feel that way and practice that way.

DAVID HSU: I’m curious because you mentioned that you’re 81. You’ve been around the medical system for decades. How has the system changed from when you first started in it until now? Is it getting worse, or has it always been like this?

JACK COULEHAN: Well, that’s tough. I definitely think it’s worse, but I also think it’s romanticism, you know, to look back and say, “Oh the good old days.” 

I graduated from medical school in 1969 and graduated from my residency and fellowship in 1975. Those were the days when I was learning to take a history. Taking a history–that’s another phrase that I dislike. But we had a little black book, that had 100 or 140 questions to ask in it. There was no concept of medical interviewing, nor the  teaching of it. I had the feeling that a lot of the values of good doctoring were kind of implicit and not necessarily taught in those days.

And so we’ve gone through a whole phase of learning that the medical interview is a therapeutic tool, and now I think we pay a lot of lip service [to it], but I don’t know that we necessarily carry it from its place in the curriculum to its place in the clinic or the hospital.

But there’s no question that it’s gotten worse [although] the technological advances are just so incredible. I remember at some point, as a student, you have this idea that the CT scan will give the answer, or the lab result will give the answer. The patient’s story is secondary. And I remember some instructors saying, no, no, wait a minute, you should know 80% of the time what the answer is before you even request the test. The test is not meant to be, the be-all, end-all of everything, but, definitely, that is the case now. Even within practice, every advancement that happens in technology kind of nudges us closer to thinking of the computer as a solution for everything.

Let’s say, one patient comes in with chest pain or nausea. I think the tendency now is to focus on those symptoms, to think of what disease might cause them, and to do various tests, rather than sitting down with the patient and trying to understand what their situation is.

DAVID HSU: You mentioned this earlier, and I wanted to follow up on this little comment you made about how the practice of humanities and writing has a self-care component to it, and that as you’ve practiced it more, it’s helped you handle stress and different challenges. Can you elaborate a bit about this?

JACK COULEHAN: As a high school, college, and even a medical student, I had this inexplicable urge to write poetry, which I did. It’s pretty juvenile. But anyhow, I did it. Then of course, I gave it up because I was a doctor. I was practicing, I was doing research, etc. And in my mid-40s, I was reaching, I think, what you might call burnout. That might be a little too dramatic, but I felt that there was something missing in my life, in my career, and I happened to have a patient who was a professor of poetry at the University of Pittsburgh, where I was teaching at the time. And one thing led to another, and she encouraged me to start writing again. And I did, and I found very quickly that by writing about…my experiences in medicine, I was able to…work through them and understand my reactions better, and so I think that poetry is a reflective practice that in a sense provides occasion for you to grapple with experiences, issues that have been troubling you, or that on the other hand have been very happy. It can work both ways.

Getting back to medical humanities, I think what we’re trying to do in medical humanities is to stimulate that kind of process in young physicians or young clinicians, whether it’s through poetry, through writing journals, through just meeting in small groups…that kind of thing…and to use not only personal experiences, but literature, poetry, film, etc. as stimuli for that.

DAVID HSU: Let’s wrap up with what you would like to see medhum.org do? How would you like to see it grow in the months and years to come? What type of topics or articles do you want us to tackle? 

JACK COULEHAN: I like the concept of being provocative. I’d like to encourage people to come in through material that’s kind of leading edge. I’d like to see people have conversations, comments and so on.

DAVID HSU: Thank you, Jack for participating in “Meet the MedHum Editors.”   It’s been a pleasure to speak with you.

Written by Jack Coulehan on Medhum.org (View All)

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In advance of the event, Guy Glass has had the opportunity to speak with Margo Weishar about her play: 

Guy: 
Hello Margo. It is such a pleasure to speak with you. For anyone who may be deciding if they want to come to the reading, can you tell us a bit about the play and the subject matter? And about how you became interested in writing about Elizabeth Blackwell. 

Margo: 
What really interests me is people who break out of the norm. 
People who do things that are completely extraordinary, and what motivates them to do that, and what is their personal cost in doing that. 
Elizabeth Blackwell became the first woman to graduate from medical school in the United States, and then she had a career in promoting women in medicine. But I also wanted to show her as a human being. The only pictures we have are of an old woman, but she was a vital, curious, intelligent, daring, brave person who fought against incredible odds to get where she was. And so that’s who I really wanted to investigate. You know, we all rely on these pioneers to break barriers down so that people like me can walk through them. But what does it take from them to do that? What are the choices they had to make in your own lives to make that possible? So that was the question that really ended up fascinating me. 
 

I got a theater degree because it was something I’ve always done in my life, and I decided I really wanted to formally go and learn. And when I started working with playwright Michael Hollinger, I took a class on solo performance. 
I always loved historical fiction, and I liked plays that were based on historical women. And so, I thought I’ll look at Elizabeth Blackwell as a subject for this solo performance. I started researching and found there was a wealth of primary source information. Not only she, but also her sister Emily became a doctor, and then a lot of her other family members were prominent. There are letters between the nine brothers and sisters in collections at Harvard and at Oxford which I could read online. The more I read and the more material I looked at, the more I felt, wow…this woman had an amazing life! After I did the solo performance, I started developing it as a play. And I really liked where it was going and refined it to the point where I had a public reading at Villanova in May of 2024. 

Guy: 
As you know, I am also a physician-playwright. There are not all that many of us! Can you say something about what it was like as a doctor transitioning to becoming a playwright? Do you feel like you have a special perspective because of being a doctor?  

Margo: 
I feel like my life has had two parallel tracks because I grew up around theater and performing. My father was a scenic designer who was a graduate of Yale Drama School. I am the first and only doctor in my family. I was always that kid who was good at science, but also the lead in the play. I produced and directed the first musical production at Penn med school ever: Sondheim’s Company with a full orchestra, which we put on with all the med students. So, it was always part of my life even during my medical training, although there was a time when I had to kind of put it on the back shelf. 

As far as playwriting, I feel very passionate about telling certain stories that haven’t been told. And now as a woman who has lived a life, had a career, raised three children, and now has a grandchild, I have a lot of life experience. I felt like that kind of voice is somewhat rare in the playwriting world, especially telling stories about women. And especially about women in science. I’ve had the opportunity to play on stage Ada Lovelace, the daughter of Lord Byron, who is credited with developing the first computer and the first computer language. 
I’ve played Maria Sibylla Merian, an artist and biologist in the 1700’s, who drew beautiful studies of insects and plants.
I directed a play about Henrietta Swan Leavitt, a Harvard astronomer in the early 1900’s. I’ve always been fascinated by these incredibly accomplished women who history has ignored. I really felt like that was my impetus for trying my hand at it. I didn’t know if I’d be any good at it. But having my work read by others I could see it was starting to reverberate with people. People were liking it and I was liking what I was hearing. The whole skill was very new to me and quite surprising. 

Guy: 
One of the things I don’t think people who are outside the theater world realize is just how long the development process of a play can take. In what way do you hope the reading at the College of Physicians will help you, and what do you expect will happen next? 

Margo: 
I have another amazing mentor, Ed Sobel, a professor at Villanova and a professional dramaturg. Ed has been working with me on focusing and refining the play. And it is just an amazing thing for me to work with somebody who is so great at what he does. Because he’s asking me questions and really trying to focus on what the essential story is that I want to tell. Having good actors is another good thing. The way people say things will help me to streamline.  

And of course, the last and most important element is how it plays to an audience, somebody who’s seeing it and hearing it for the very first time, what they will come away with and whether I can achieve the emotional impact of what I’m trying to say. As you know, things can be back to the drawing board after that experience. I might hear certain things that really hit perfectly or other things I never even considered. It’s not like a novel, where you finish it, you publish it, and it goes out in the public. You can have multiple full productions before you publish a script because sometimes something doesn’t work in a production. Maybe it’s just the wrong actors. And then you go see it somewhere else and you think, no, that scene was great. You have to see it. It’s a collaborative art, and we need all those people, designers and directors, to interpret what we wrote before we can say, yes, this is the final version. 

It’s interesting. I was in London last week and I got to see a Tom Stoppard play called Indian Ink. This play had been produced 30 years ago. 
And when Stoppard went back to it, he changed the ending. 30 years later! So even Tom Stopford can say yes, I think I can do it better now. 

Guy:  
Thanks for talking to me today, Margo. And best of luck on the reading. 

Margo:  
Thank you! 

Susan Sontag has said, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick.” Author Lina Meruane challenges the idea that people with illnesses are necessarily separated into a different kingdom than those who are not sick, asserting instead that illness can be part of anyone’s normality. She makes this case through her novel, Nervous System. The novel tells the stories of four family members and a boyfriend who, at one time or another, develop a serious illness or help take care of one of the others with a serious illness: it’s all illness, it’s all the time, it’s normal. We talk with Dr. Meruane about her idea of illness as normality as she presented it in the novel, and about how its atypical structure and its evocative and memorable prose contribute to the stories told and the ideas offered.

Co-host

Daniel Albrant

Source
Nervous System by Lina Meruane, translated by Meghan McDowell, Graywolf Press, 2021.

Links
–Lina Meruane’s bio
–Russell Teagarden’s blog piece about the novel, Nervous System, and his blog piece about the MRI scene in the novel.
–Russell Teagarden’s blog piece about Lina Meruane’s novel, Seeing Red.
–Video conversation between Lina Meruane and Meghan McDowell about Nervous System.
–Interview with Lina Meruane in LALT magazine about Nervous System.

A big thanks to Lina Meruane for sharing her thoughts on illness as normality and her writing processes.

The Clinic & The Person is a podcast developed by our editor Russell Teagarden to summon or quicken the attention of health care professionals, their educators, researchers and others to the interests and plights of people with specific health problems aided through knowledge and perspectives the humanities provide.

Web image by Medhum.org