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

Biblioscopy

Summer 2026 Biblioscopy 

08.03.26 379

Book ReviewVideo

Do No Harm: Stories of Life, Death, and Brain Surgery by Henry Marsh 

06.16.26 521

Biblioscopy

Biblioscopy: A Glimpse of New and Upcoming Books 

03.02.26 1495

Book ReviewFocus

The End of Days by Bernard MacLaverty 

11.03.25 766

Load More

Load More

“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.” 

Most chapters are titled after a medical condition (exceptions are “Hubris” and “Melodrama”). Some of the headings are familiar – Trauma, Infarct, Aneurysm, Meningioma. Other chapter titles flaunt delicious medical terminology that mingles the mysterious and the poetic with nomenclature such as Angor animi, Neurotmesis, Photopsia, and Anaesthesia dolorosa.

Included are riveting accounts of both mundane and seemingly miraculous patient outcomes. One success story involves a pregnant woman losing her sight due to a brain tumor that compresses the optic nerves. Her vision is restored with an operation performed by the author. Her baby is born healthy too. But tales of failure and loss – malignant glioblastomas that are invulnerable to any treatment, operative calamities including bleeding of the brain, paralysis, and stroke – are tragically common. The author describes his humanitarian work in the Ukraine. He admits his aggravation with hospital bureaucracy and is frequently frustrated by England’s National Health Service.

Sometimes the shoe falls on the other foot, and the doctor learns what it is to be a patient. He suffers a retinal detachment. He falls down some stairs and fractures his leg. His mother succumbs to metastatic breast cancer. His three month old son requires surgery for a benign brain tumor.

As his career winds down, the author grows increasingly philosophical. He acknowledges his diminishing professional detachment, his fading fear of failure, and his less-hardened self. He becomes a sort of vessel for patients to empty their misery into. He is cognizant of the painful privilege it is to be a doctor.

The title of Do No Harm is spot-on. After all, this commandment is a crucial caution to all doctors. And for neurosurgeon Marsh, it signifies the restraint he must exercise in his medical decision-making. His approach to the doctor-patient relationship features a gentle medical paternalism that incorporates plenty of honesty and kindness. He writes about his struggle (and occasional clumsiness) with breaking bad news.

His professional life is portrayed as paradoxical – constant anxiety and contagious confidence, phases of futility and strings of inspiring operative accomplishments. The gift of forgiveness, how uncertainty tortures doctors, and the process of dying are significant topics for Marsh. In the last few decades, there has been a proliferation of medical memoirs. Do No Harm rises above them all. The book informs doctors that it’s okay to be vulnerable and fallible, as long as they are also compassionate, truthful, and caring. 

Primary Source Do No Harm: Stories of Life, Death, and Brain Surgery 
Publisher Thomas Dunne Books/St. Martin’s Press 
Place Published New York 
Edition 2015 
Page Count 288 

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database.   
Web image by Medhum.org.

Tooker depicted waiting for a more specifically governmental bureaucracy in his painting, “The Government Bureau.” In that painting, the waiting people are reproduced several times to emphasize their anonymity, and the multiple bureaucrats peer out from frosted windows with only their eyes and noses visible — bringing to mind the concept of the “medical gaze” promulgated by the French philosopher,  Michel Foucault.

In another Tooker painting, “Ward,” he renders patients’ anonymity and a sense of abandonment in the hospital setting–with government bureaucracy invoked by the American flags hanging on the wall.

Image Credit
The Waiting Room, George Tooker, 1959. Collection of the Smithsonian American Art Museum. Image used for educational and critical commentary purposes.

George Tooker documentary videos from Columbus Museum

Hypoglycemia can kill you fast. The brain, our most self-centered organ, is also the greatest consumer of glucose. If blood sugar levels drop, it starts to shut down the rest of the body, in a desperate attempt to save fuel —it will drink every last drop of sweet sustenance before collapsing.

That’s how it feels; like parts of me slowly go dark. If I collapse, right here, in the middle of this park, I won’t have had a chance to say goodbye.

It’s a beautiful day outside. Beneath the trees, the filtered light takes on a greenish hue. A dog yawns on a patch of grass in front of me. I’ve found a spot on the corner of a bench facing a fountain—I can barely see it though, given the sheer number of people coming and going, dodging one another and getting in the way. I rub my right hand against my thigh, starting from the knee, pressing down with my thumb. I look around and crane my neck, trying to scrunch it down over my shoulders like an accordion.

I need to drink this entire bottle of pineapple juice. I bought it at a street stall the moment my alarm went off. Something must have gone wrong—with my meal, with the heat, with my nerves, or with who knows what, but my blood sugar is draining away, slipping right out of my body. Within the nebula that is my mind, clusters of stars begin to vanish. Suddenly, in a corner, the light goes out. A void emerges in the upper-left quadrant; I lose an immense cloud of hydrogen, and, along with it, all sensation in my feet. Blinking becomes a conscious task that demands effort; I don’t want to make it, so I simply close my eyes as I drink. There dies a sun, leaving its entire solar system in complete darkness. My hand has already made a hundred trips up and down my thigh. It occurs to me that all this back-and-forth motion is burning glucose, but the movement helps keep my anxiety at bay. Fighting this panic is costing me the very sugar I don’t have; I am living proof (at least for now) that sometimes, resisting the inevitable only makes things worse. If you fall into quicksand, stay still.

Someone shouts, somebody laughs and claps; there’s people making music, but it’s all distorted, as if the hot air were making the sounds bubble. I hear the beep of my insulin pump. It hasn’t stopped vibrating; I pull it out from my pocket and imagine it’s screaming at me, threatening me. My sugar levels are very low, and they’re still plummeting. The app on my phone—connected to the glucose monitoring patch on my arm—picks it up, too: my screen turns crimson, filled with arrows pointing straight down. I don’t have much time.

At least I’m sitting down, though I doubt I could stand. I think about calling an ambulance, but I suspect that if I had to start speaking to explain the situation, my voice would sound like a soaking-wet mop dragging across a school hallway floor. Besides, wouldn’t it be better to call my mother? Or my father, or my siblings—or the girl I dated a couple of years ago? Because I’ve only ever managed to fall in love once, with her; what a waste it would be if I died here, alone in a park bench. I’d lose the chance to experience that feeling again.

I should tell my mother that I love her, but there’s a six-hour time difference between New York and Madrid, so she’ll be asleep; and honestly, I don’t think I have the time or energy left to unlock my phone and make the call. I ought to keep drinking. The more pineapple juice I gulp down, the higher my chances of survival. I’ve never really known exactly when a person loses consciousness and slips into a coma—I don’t know how close I am to that edge. I don’t know how far away those thresholds lie, or how quickly they’re being crossed. I want to call someone, or cry out for help, or at least make sure that someone sees me losing consciousness—if only so I can say that someone was there, that someone witnessed it. That they saw the sun go out.

I don’t do it. I move only my arm; I bring the juice to my lips. My fingers tingle. I tremble.
A blink of an eye lasts longer than before.

I stare at a shapeless, unfocused mass of people. There’s this phase in hypoglycemia in which I feel myself reverting to something animalistic, primitive, a beast between two palm fronds; I’m in awe of the certainty I feel that nothing matters except my own survival.

An example: I drag my body to the fridge, haul myself forward, shove everything into my mouth without thinking; juice and Coca-Cola drip down my chin; I mix bread and fruit and cheese and sauces and whatever else I find; I use my hands—tearing, shredding, and stuffing it all into my mouth—barely chewing, coughing and spitting, then swallowing again; my fingers slick with grease. A ravenous urge burns across my forehead, and I breathe with incredible depth, as if someone were pumping oxygen into me through a funnel embedded in my throat.

I remember having done that several times.

I exhale, emptying myself out, and sparks fly from between my teeth. I can’t see clearly. Things—people? —move before me, but they’re terribly blurred. It doesn’t matter; I’m the center of the universe. I’m like a child. I drink my juice.

The feeling of losing control is a curious one, for it seems to be well-organized. From the bottom up, my limbs go numb. Mental fog seeps in through my nose and settles in my glabella. It concentrates; crystallizes. My thoughts cease to be mine—though I wonder if they ever truly were—and questions of this sort—like the one about love—begin to bubble up. Flashes.

Suddenly, I find myself wondering if I have ever truly been rebellious. I don’t know. My mother used to say that as a baby, I never cried—that I was pure tenderness. The thought of dying fills me with distress, for tenderness makes everything interesting, and I long to hold a little girl in my arms—to know that she’s my daughter, to watch her cling to me, burying her fingernails into my skin, like tiny half grains of rice. I tell myself that this is my life’s dream and purpose; for a moment, it feels as though my body might finally be able to relax—but it doesn’t. There remains a starry corner of my mind that still clings to the juice, to the park, to the yawning dog, and to reality itself. I take another sip.

A sudden flash: a line from a John Ashbery poem that says the bedroom of the soul is our moment of attention. I force myself to pay it— I tell me that, in doing so, I’m bringing myself back to consciousness. A minute’s passed? Or is it already the next day? I can’t tell.

Tachycardia is the worst part, for it forces itself upon me. It tramples my chest, imposing a rhythm of time from which there’s no escape. The only thing I can feel is my heart.

A hundred beats.
Hundred and twenty.
Hundred and forty.

Panic and tachycardia are close allies —and panic is a diabetic’s sworn enemy. It wants to trick me, it whispers, tells me everyone’s watching me, says all can hear the frantic hammering in my chest. Random clusters of thought dissolve, giving way to a single, definitive question. It is here that my illness bifurcates, and I ask myself (as I’ve been doing for years): which comes first, diabetes or shame?

I don’t dial 911, I don’t call my family, and I don’t ask for help, because I am ashamed. Right now, on the verge of losing consciousness, nothing should matter except staying alive. I ought to scream, to make a scene; for if I simply let myself fade away while sitting on a bench in the middle of Washington Square Park, no one is going to stop and help me. New Yorkers are more than used to seeing people sprawled on the ground, asleep on benches, or passed out in the subway; they won’t be the least bit fazed to stumble upon a twenty-something year old with his head lolling and his eyes closed, sitting upright, back straight, clothes clean, beard neatly trimmed. I need to grab their attention—my life’s slipping away, my blood feels as if it’s being pulled downward—I have to do something, right here, right now, but I can’t.

Asking for help means intruding on another person; it means meeting their gaze, making demands, stepping out into the spotlight to take a bow before the entire audience. It is here, in this theater of interaction, where human beings are made and molded. In my case, the guiding emotion is shame. The gaze of the other is the place where we all live and die. What is it, then? What’s about to kill me? Hypoglycemia, or my own inability to step outside myself?

Web image from Wiki Commons.

At age 18, Frida Kahlo suffered a catastrophic accident that had lifelong consequences. The school bus in which she was a passenger collided with a trolley. Her spinal column was broken in three places, as were her collarbone, two ribs, her right leg and foot. The treatment was to lie on her back for one month, enclosed in a plaster cast. In addition, Kahlo had polio as a child, and one leg was shorter and thinner than the other.

This stunning portrait demands the viewer’s attention. A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal, a few tears spilling down her face. She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset. On the one hand, the figure is passive, gazing at us almost without expression, completely still, acceptant of the scattered nails and rigid column that penetrate her body. On the other hand, the beauty of her perfectly formed breasts and well-formed upper body, the eyes that engage the viewer, subtly convey the energy of the figure’s spirit and will. At this point in Kahlo’s life, the painful physical problems that had plagued her on and off for years were becoming unrelenting. Doctors prescribed a variety of orthopedic corsets to support her degenerating spine. The portrait seems to personify pain and simultaneously some level of tolerance for pain.

Many who view the painting are reminded of images of Christ on the cross. Kahlo was certainly long-suffering and represented the physical and emotional aspects of her condition in many of her works (for example, “Tree of Hope” and “Henry Ford Hospital“), but the energy and originality of her personality and artistic vision shine through. For interesting commentary on “The Broken Column,” see Hayden Herrera. Frida Kahlo: The Paintings (New York: Harper Perennial) 2002, pp. 180-183. Also useful is Gannit Ankori’s commentary in her book, Imaging Her Selves: Frida Kahlo’s Poetics of Identity and Fragmentation (Westport, Connecticut and London: Greenwood Press, 2002, pp. 114-119). Ankori points out that the vertical fissure of Kahlo’s body and the fissures in the earth surrounding her evoke violation — consistent with Kahlo’s statement that a metal rod had entered her hip and penetrated her vagina.

Web image from Wiki Commons

Field Guide to Falling Ill: Essays by Jonathan Gleason 

New Haven, CT: Yale University Press, 2026, 256 pages 
ISBN 9780300282948

In these ten exemplary essays, Gleason mingles illness memoir, the challenges of caregiving, and loss (of health and spirit). Disease is portrayed not only as an aberration of the body’s normal homeostasis but also a distinctive event with social, cultural, and possibly historical meaning. Contagions (viruses, prejudices, even love) receive special attention as catalysts of uncertainty, anxiety, and sometimes terror. Spaces – inner, close, distant, and built – are similarly scrutinized. In 1623, the English poet John Donne declared that “the greatest misery of sickness is solitude.” The narrator of the title essay echoes that sentiment, describing “loneliness” as the world’s greatest sorrow. He volunteers as a part-time medical interpreter at a free clinic but suddenly becomes a patient himself with a blood clot in the left arm. These experiences lead to an understanding of the power and limitations of both language and empathy. Other essays explore organ donation, AIDS, mental illness and the demise of large psychiatric hospitals, Tay-Sachs disease and xenophobia, pain, addiction, and the trial of an Ohio doctor charged with multiple counts of murder. Throughout these pages, Gleason points out the hubris of medicine as well as its shortcomings. He writes, “We like to believe we know the vastness of the world, that everything can be explained through our current models of understanding” (p3). At some point (or maybe many times), however, we will all fall ill and become a patient. And that immense world with all its scientific knowledge will dramatically contract to our single suffering body longing to be comforted and cherished by others. 

“An Eye in the Throat” in Good and Evil and Other Stories (pages 57-96) by Samanta Schweblin, translated by Megan McDowell  

New York, NY: Knopf, 2025, 192 pages 
ISBN 9780593803103 

It’s every parent’s nightmare: a serious (and potentially preventable) injury to their child that occurs right in front of them. Here, the setting is Argentina in the 1990’s. Inquisitive two-year-old Elías chokes on a lithium battery from his grandmother’s digital calculator while his father is in charge of watching him play. A visit to the ER and then an appointment with the family doctor the next day offers little reassurance for the parents. On the third day, Elías begins coughing and develops a fever. An operation is performed to remove the lodged battery and repair tissue damage to the esophagus. A tracheostomy is performed, and he undergoes four operations in a span of six years. He is unable to speak. At one point, he mysteriously gets out of his car seat and briefly becomes lost at a gas station. Soon after, a landline phone at home eerily rings each night. When the father answers, there is no voice at the other end. The parents eventually separate. Elías comprehends that all family members are casualties, and with an amazing capacity for empathy concludes, “There is a hole in my throat, a hole in my body that hurts in theirs” (p79). He is enrolled in a special school for deaf and mute children and becomes an outstanding student who is enthralled by language and mathematical physics. Schweblin’s searing story about parental guilt and grieving, failed communication, and the remarkable resiliency of youth is guaranteed to leave you with a lump in your throat. 

A Prescription for Burnout: Restorative Writing for Healthcare Professionals by Carolyn Roy-Bornstein 

Baltimore, MD: Johns Hopkins University Press, 2026, 208 pages 
ISBN 9781421454733 

Burnout among physicians and nurses, accelerated by the emotional and physical crush of the Covid-19 pandemic, continues to be an urgent problem. Causes of burnout among health professionals include an erosion of autonomy, truncated time allotted for patient visits (but increased time required for inputting data into the electronic medical record system), feeling underappreciated, unrealistic expectations from patients and employers, and the daily exposure to the suffering of others. Roy-Bornstein, a pediatrician and a former RN, enthusiastically endorses reflective writing as an effective remedy for dealing with burnout (or perhaps preventing its occurrence). While not a new concept, her discussion includes research on the utility of restorative writing, some commentary on narrative medicine, and most importantly, more than 85 writing prompts (or Rx’s as she refers to them) for reflection and as a kind of therapeutic exercise. Organized into three sections – Addressing Emotional Exhaustion, Countering Cynicism, and Restoring Self-Efficacy – the book addresses issues of vulnerability, self-compassion, self-awareness, resilience, and optimism. There is no doubt that reflective writing can be healing and hopeful. Roy-Bornstein offers a helpful pathway to reducing the risk of professional burnout.  

Vesalius’s illustration, “Skeleton Contemplating a Skull” from Wellcome Collection

Hours later, after she has tried all the methods known to her, Agnes is asleep next to Judith’s pallet. Hamnet, overwrought that he is about to lose the “other side to him,” crawls from his pallet to Judith’s side, beginning to feel poorly also. He arranges himself next to Judith in a way that made it almost impossible for people to tell them apart, hoping as Death came to take her, it would be fooled into taking him instead. “And if either of them is to live, it must be her. He wills it. He grips it…He, Hamnet, decrees it. It shall be.” (p. 169) 

When Agnes awakens, she eventually discerns that “her daughter has been spared…but, in exchange, it seems that Hamnet may be taken.” (p. 208) She reinitiates the treatments she had tried on Judith, but nothing works. Hamnet takes his last breath. Agnes wonders how she could have saved him, how she could have missed Hamnet being at risk before she is able to comprehend: “he is dead, he is dead, he is dead.” (p. 219) 

From this event on, O’Farrell constructs the trajectory of the family’s grief with a particular focus on Agnes. Her grief is amplified by resentment and incredulousness over her husband’s return to London soon after the burial because he feared his work as an actor and playwright would lose irretrievable ground with a prolonged absence. These emotions and grievances reach a crescendo over a period of years before understandings are reached and catharsis experienced. 

The Plague Comes for the Twins 

Easily lost in the gripping story O’Farrell tells and the emotional torrents she evokes is the chapter explaining how the plague reached the twins. She takes the modern-day, biomedical understanding of the complex chain of events involved in the spread of plague and weaves it into how she imagines it could happen amidst everyday life in the countryside outside London during the 1590s.  

A basic biomedical reference O’Farrell could have consulted in piecing together a credible sequence of events leading to the twins’ infections would likely include the same details provided in a summary of plague spread published in the 2021 volume of the American Journal of Medicine*: 

An ancient disease, its bacterial agent (Yersinia pestis) is an aerobic, gram-negative coccobacillus in the family Enterobacteriaceae. Its primary vector for transmission is the Xenopsylla cheopis flea, although roughly 80 species of fleas can carry it. During the Black Death, the flea was transported by the black rat or Rattus. A controversial new theory argues that ectoparasites such as human fleas and lice also spread the disease during the second plague pandemic [1347-1665]. Fleas can also survive in infected clothing or grain. The bacteria multiply in infected rodents and block the fleas’ alimentary canal, causing the fleas to regurgitate the Y. pestis bacteria into its animal host…Plague transmission is generally from infected fleas by rodent vectors or, rarely, in clothing or grain but may also occur through ingesting contaminated animals, physical contact with infected victims, or direct inhalation of infectious respiratory droplets. 

O’Farrell could also find plenty of well-researched historical accounts of the plague impacts at the time and place she set the novel. The plague affecting Stratford then is thought to have first entered England in 1348 from ships docking in cities along the southwestern coastline. England struggled with it almost constantly for more than 300 years until it dissipated after 1665. From this biomedical and historical background, O’Farrell created a realistic framework for the story, and a reasonable representation of the all the factors needed for the infection to find the twins in 1596 Stratford.   

She starts her explanation of how the twins got infected by specifying that,  

two events need to occur in the lives of two separate people, and then these people need to meet. The first is a glassmaker on the island of Murano in the principality of Venice; the second is a cabin boy on a merchant ship sailing for Alexandria on an unseasonably warm morning with an easterly wind. (p. 140) 

The glassmaker is filling an order for decorative glass beads received from a dress shop in Stratford, England. But, because of a recent hand injury, a fellow worker is given the job of packing the order. This worker doesn’t know that the glassmaker “usually pads and packs the beads with wood shavings and sand to prevent breakage. He grabs instead a handful of rags from the glassworks floor and tucks them in and around the beads.” (pp. 140-141).  

Meanwhile, the merchant ship has docked in Alexandria, and the cabin boy has been sent ashore for provisions. He quickly encounters a man with a monkey, and the monkey quickly jumps on the cabin boy, and then all over the boy, passing along three infected fleas. One of them accompanies the boy back onboard ensconced “in the fold of the red cloth tied around the boy’s neck, given to him by his sweetheart at home.” (p. 144) The flea doesn’t stay there long. It jumps into the fur of one of the ship’s cats the boy picks up and nuzzles. Soon after the cat is sickened by its passenger and seeks comfort on the hammock of a midshipman, who upon approaching his hammock for a night’s sleep, finds a dead cat. The flea, now needing a new place to live “makes its way, by springing and leaping, to the fecund and damp armpit of the sleeping, snoring midshipman, there to gorge itself on rich, alcohol-laced sailor blood.” (p. 144) Three days later, the midshipman is dead. 

The ship arrives in Murano to pick up cargo including the glass beads. The cabin boy and the glassmaker come eye to eye as the glass beads are loaded onto the ship. And at that moment, the monkey flea, which had found a way back to the boy after time with some of the ship’s rats and its chef, leaped onto the glassmaker. He and many others in his factory subsequently succumb to “a mysterious and virulent fever.” (p. 149) 

In the hold of the ship now heading to England, the progeny of the monkey flea leap from dying rats to cats lying on top of the boxes filled with the glass beads until the cats die. The fleas eventually “crawl down into these boxes and take up residence in the rags padding the hundreds of tiny, multi-coloured millefiori beads (the same rags put there by the fellow worker of the master glassmaker…)”. (p. 148) The ship arrives in London and the boxes of glass beads are taken to a wharfhouse where they are stored for about a month before picked up for further transport. 

O’Farrell ends her tale of how the plague found the twins through the delivery of the box with infected fleas to their final destination. The box of beads “still wrapped in rags from the floor of the Venetian glassworks” is transported to an inn located near the northern reaches of London. (p. 149) Then, a messenger collects the box and takes them by horseback on a two-day journey to another inn near Stratford. O’Farrell adds how during this ride the mass of infectious plague vectors and organisms intensifies. 

The fleas in the rags crawl out, hungry and depleted by their hostless stay in the wharfhouse. Soon, however, they are recovered, rejuvenated, springing from horse to man and back again, then out on to the various people the rider encounters along the way…By the time the rider reaches Stratford, the fleas have laid eggs: in the seams of his doublet, in the mane of the horse, in the stitching of the saddle, in the filigree and weave of the lace, in the rags surrounding the beads. These eggs are the great-grandchildren of the monkey flea.  

The box with the beads and the fleas is now in the town where the twins live. An innkeeper there has it, and gives a boy a penny to deliver the box to the dress shop that ordered it many months before. The fleas have found Hamnet. 

Judith is at the dress shop helping out when the box is delivered.  

The seamstress holds aloft the box. ‘Look,’ she says to the girl, who is small for her age, and fair as an angel, with a nature to match. 
        The girl clasps her hands together. ‘The beads from Venice? Are they here?’ 
        The seamstress laughs. ‘I believe so.’ 
        ‘Can I look? Can I see? I cannot wait.’ 
The seamstress puts the box in her counter. ‘You may do more than that. You may be the one to open them. You’ll need to cut away all these nasty old rags. Take up the scissors there.’ 
 She hands the girl the box of millefiori beads and Judith takes it, her hands eager and quick, her face lit with a smile. (pp. 150-151) 

The fleas have found Judith. 

When Literary Narrative Serves as Biomedical Text 

O’Farrell’s narrative, fictional model of plague spread embedded in her story imagining what could have caused the death of an eleven-year-old boy in 1596 takes into account both the virulence of the infection and the many and varied ways it can spread. To make that point, she, much as would any epidemiologist, tells of others killed as the fleas made their way from Murano to Stratford, such as workers in the glassmaker’s factory, midshipmen on the boat, and various people encountering land-based messengers carrying the box of beads to those awaiting it. In that way, her model also explains how the mortality estimates of one-tenth to one-third of the populations from frequent plague visitations over three centuries could be generated. 

O’Farrell could have left this part out of the novel without losing much of the core storyline or emotion and drama of it. Indeed, the movie version gives it only a few seconds of attention showing the twins’ father walking by a street puppet show during a scene representing the spread of and death from plague delivered from a ship. By including the chapter, however, O’Farrell compounds the drama and emotion, and reveals the complexities involved in our fates.  

And, as I recall the drudgery of reading and mastering the intricacies of infectious disease spread and pathology such as those of bubonic plague, I wish I had O’Farrell’s novel Hamnet at the time. The experience would have been enjoyable and memorable where the experience with biomedical texts were not in either way. Perhaps this application was not in O’Farrell’s mind for the book, but it could go a long way in ridding us of the plague of turgid, mind-numbing, and indecipherable biomedical prose. Whether or not she knows it, O’Farrell has in this novel brought attention to a plague of another house.  

Hamnet
Maggie O’Farrell
Alfred A Knopf; 2020

*From: Glatter JA, Finkelman P. History of the Plague: An Ancient Pandemic for the Age of COVID-19.  American Journal of Medicine 2021; 134(2): 176–181. 

Image Credits

The path of infection of plague from rats via fleas to man, by A.L. Tarter from the Wellcome Collection. Attribution 4.0 International (CC BY 4.0). 
A rat on board a ship, carrying the plague further afield, by A.L. Tarter from the Wellcome Collection. Attribution 4.0 International (CC BY 4.0) 
The word plague hovers above a victim’s face, by A.L. Tarter from the Wellcome Collection. Attribution 4.0 International (CC BY 4.0) 

Five years into writing about her mother’s slow decline from a respiratory illness, Joanne Jacobson was diagnosed with a rare, life-threatening blood disease. That discovery dissolved the illusion that she and her mother had separate fates. “How could I continue writing about my mother as though I were observing her from outside the circle of Illness?” Jacobson asks (27). She can’t. And Every Last Breath becomes, as its subtitle discloses, “A Memoir of Two Illnesses.” Doubling its concern, Jacobson’s memoir in essays becomes a richer, more urgent, and ironic revision of her original project.  

With writerly attentiveness, perceptive intelligence, and some impatience, the four opening essays witness the negotiations that Florence Jacobson makes with her body, her environment, and her psyche. From a distanced perspective, Jacobson wonders at her mother’s courage and stubborn animal will to go on. Her mother’s slow pace and reluctance to let go—of her possessions, her habits, her life—initially frustrate and puzzle Jacobson. She even expresses impatience with the constant sound of her mother’s oxygen pump filling the apartment, the inconvenient bulk of the oxygen canister, the tangles of tubing connecting the machine with her mother’s nostrils.  

As Jacobson’s diagnosis closes the distance she perceived between herself and her mother, it ignites the memoir’s transformative insight. It’s first articulated at the end of the essay titled “Mirror Writing” and it sustains the rest of the memoir. Realizing that her mother might outlive her, Jacobson writes: “. . . I can no longer pretend that the ragged approach of death is likely to be smoothed by nature’s grace, or by the natural order. So long as I believed I was writing about my mother, I was able to hold mortality at a distance . . . Now in the mirror of my mother’s aging face I see myself” (29). In “Dead Reckoning,” when Jacobson learns that her blood is starved for oxygen, she hears her “own lungs fall into the thrumming motor’s pulse” of her mother’s respirator. Revising her response to the technology, she writes that it is “the sound of death being pushed mechanically away that is audible to me now—steadily asserting its nearness . . .” (63-4). Jacobson’s descriptions of her hospitalizations and treatments (“Written in Blood,” “If My Disease Were an Animal”) sharply observe her new understanding of herself and the “call to the imagination” that her experience issues (59). Jacobson’s elegant and vulnerable rendering of her efforts to survive pain, uncertainty, and terrifying treatments register her courage and will to go on.  

The final essays bring together the shared destinies of mother and daughter. Jacobson thinks of their relationship as “invisibly entwined, cellular,” as she recalls that mothers’ bodies can absorb the fetuses’ cells (88). In “Book of Names,” Jacobson’s closing essay, she and her mother recite the names in Florence’s heavily edited address book, tracking the alterations in the lives she’s shared. The recitation invokes the lists in Genesis. Begotten. Gone.  

Every Last Breath should be read. Its profound and startling reflections on mortality are lyrical, fierce, and deeply felt. At times readers take extravagantly metaphorical flights of the imagination. At times we’re immersed in revelatory scientific facts about the natural world and our human biology. This slender book melts other boundaries as well: between caregiver and patient, mother and daughter, self and other, personal and universal. It simultaneously challenges literary classifications, blending poetry, essay, and memoir. Read separately or together—either way can be satisfying—Jacobson’s brilliant essays refuse to let us ignore our shared vulnerability or the unpredictability of living in a body, as Jacobson once naively thought she could. 

Every Last Breath–A Memoir of Two Illnesses
Joanne Jacobson 
The University of Utah Press, 2020; 114 pages 
https://uofupress.com/books/every-last-breath/

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database. 
Web image created by Medhum.org

Jurecic’s astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of “disembodied criticism.” Such criticism, she claims, dismisses testimonial writing from “a position of distance and privilege.”  At the same time, her answers affirm that intellectually “rigorous” responses to texts are central to the critical humanities (15). To support her position, she offers attentive readings of illness narratives by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader’s body aligns with their responses to texts. In a chapter called “Theory’s Aging Body,” she observes that as skeptical scholarly readers aged—think of Stephen Greenblatt, Michel Foucault, Judith Butler—they turned their attention to “illness, vulnerability, and mortality” (93).  Jurecic also suggests that criticism’s function to expose cultural conditions turns illness stories into critiques of the effects of contemporary medicine on our experiences of vulnerability and mortality. The relatively new concept of living “at risk” is a case in point. Stories about living with the risk of experiencing a particular illness in the future leave potential patients with uncertainty,” prompting narratives that seek the “personal meaning of the impersonal statistics” that medical encounters now regularly deliver (18).   

Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophical thinkers Elaine Scarry, Martha Nussbaum, and Richard Rorty, along with anthropologists Jean E. Jackson, Byron Good, and Veena Das. In an exceptionally comprehensive and nuanced reading of Susan Sontag’s theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag’s inconsistent, yet revelatory positions on the human capacity for responding to representations of pain. The chapter on Sontag is enriched by Jurecic’s reading of Annie Lebovitz’s controversial photographs of Sontag’s final days (included in A Photographer’s Life: 1990-2005) and David Reiff’s responses to Sontag’s suffering in his memoir about his mother’s illnesses (Swimming in a Sea of Death).   

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices. Reparative writers, such as Jean-Dominique Bauby (The Diving Bell and the Butterfly), Jurecic claims, both create “a more coherent sense of themselves” and dislodge culturally “fixed ideas and narratives” about illness or disability (109). Her discussion of reparative reading considers the limits of two competing readings of Anne Fadiman’s The Spirit Catches You and You Fall Down. One assumes that readers will empathically and unreflectively imagine those who are culturally different from themselves. The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book. Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski encourage more complex habits of response, such as Taylor’s concept of “’empathic curiosity’” (122).    

Illness as Narrative poses questions so central to discussions in the medical humanities that it should be read by those who teach in the health professions and disciplines. Jurecic’s book advances the groundbreaking case made by Arthur Frank that illness narratives contribute not only to medicine, but also to contemporary culture and individual lives. Since Illness as Narrative rigorously addresses questions of how to respond to and teach the literature of suffering, it has consequential implications for literary studies and the critical humanities more generally. It exemplifies how a marginalized sub-field can offer a perspective that the dominant theories in the larger discipline fail to notice. Perhaps the most urgent professional question Jurecic asks is what we lose if writers and readers attuned to the ill or suffering body are not heard in critical discussions. Fortunately, Jurecic’s clear, jargon-free prose and the texts she writes about also welcome readers in disciplines beyond literary studies and health humanities into the conversation.  

Illness as Narrative: 
https://upittpress.org/books/9780822961901/

Arlene Croce: 
https://www.newyorker.com/magazine/1994/12/26/discussing-the-undiscussable

Arthur Frank:  
The Wounded Storyteller: Body, Illness, and Ethics, 2^nd ed. Univ of Chicago Press, 2013. (Orig. 1995) 

Illness as Narrative 
By Ann Jurecic 
University of Pittsbugh Press: 2012, 192 Pages 
Web Photo by Mostafa Saeed