Five Little Peppers and How They Grew by Margaret Sidney is an early example from 1881. This book describes the daily life of the hardworking Pepper family and how they remain cheerful and loving despite challenges associated with 19^th century poverty. The Pepper family consists of widowed Mrs. Pepper or “Mamsie,” 11-year-old Ben who voluntarily takes on the mantle of “man of the house,” patient and selfless 10-year-old Polly, impulsive and food-loving 9-year-old Joel, gentle and conscientious 7-year-old Davie, and beloved baby of the family 3-year-old Phronsie.

Children’s literature during this era was heavily instructional and used relatable characters and stories to teach morals and values to young minds. Illness was rarely just a biological event; it was a test or demonstration of character. In a chapter aptly titled “Trouble for the Little Brown House,” the first challenge that the Pepper family faces is measles.

Notably, this book highlights the ophthalmologic symptoms and sequalae of measles, as first Phronsie, then Ben, Polly, and Joel all catch the infection. Common early symptoms of measles include conjunctivitis and photophobia, which occur before the obvious rash. Ben and Polly, the hardworking older siblings who earn money for the family by chopping wood and sewing respectively, are each in initial denial of infection because they understand the financial repercussions this will have on the family. But the historic reader understands the warning signs when Ben and Polly report visual complaints. Ben tries to reassure Polly by saying, “I’m all right; only my head aches, and my eyes feel funny,” alluding to the itchy and gritty sensation of conjunctivitis, before he becomes bedridden. The narrator describes Polly’s struggles more vividly, “An awful feeling made her clutch the back of a chair, but she managed somehow to get into her clothes, and go groping blindly into the kitchen. Somehow, Polly couldn’t see very well. She tried to set the table, but ‘twas no use.” Polly’s initial visual impairment can be attributed to severe photophobia, leading to blurry vision.

Modern day readers may not know that the measles virus can result in serious vision-threatening complications. It can cause deeper structural damage starting with keratitis – a painful inflammation or infection of the cornea, the clear front surface of the eye, which manifests as blurred vision and intense tearing. If keratitis is left untreated or a secondary bacterial infection occurs, corneal scarring can permanently impair vision. In rare instances, measles can also cause retinopathy and optic neuritis leading to blindness. The severity of eye damage from measles is heavily linked to nutrition. The virus actively depletes body stores of vitamin A. In low-income populations where vitamin A deficiency is already common, measles is more likely to cause permanent childhood blindness.

The Peppers live in poverty and hunger. Mrs. Pepper makes a meager income sewing “sacks and coats” for a local store and “had hard work to scrape together money enough to put bread into her children’s mouths, and to pay the rent of the little brown house.” There is never enough food to go around. Their main source of calories are coarse brown bread and unappetizing cornmeal mush, neither of which contain meaningful amounts of vitamin A. However, the generosity of the parson’s wife, Mrs. Henderson, helps protect some of the Peppers from blindness. Mrs. Henderson gives the Peppers “a little pat of butter,” which Phronsie and Ben put on their bread. Dairy, like milk and butter, is an excellent source of vitamin A. And later, Mrs. Henderson sends over “a little bird delicately roasted,” which Joel consumes with delight. Poultry and gamebirds are another good source of vitamin A.

However, selfless Polly saves the butter and bird for her siblings and ends up being most at risk for permanent vision loss. She develops very painful eyes, suggesting keratitis, and the doctor pronounces that “her eyes are very bad” and warns, “You will be blind!” if she doesn’t take care. Although the author attributes Polly’s illness severity to eye strain from sewing to earn money for the family, it is medically more likely due to vitamin deficiency. The therapeutic value of vitamin A in treating measles was not discovered until 1932 – 51 years after the publication of this book – when British physician Joseph B. Ellison found that administering vitamin A extracts roughly halved the death rate of hospitalized children suffering from measles [1]. Studies establishing the role of vitamin A in reducing blindness in children with measles did not occur until the 1980s [2,3].

Because moralizing 19^th century children’s literature rewards the virtuous, Polly ultimately makes a full recovery. However, reality is not so kind. Even today in the 21^st century, an estimated 15,000 to 60,000 children are blinded by measles every year globally [4]. The World Health Organization recommends that children in low income and developing regions diagnosed with measles receive immediate, high-dose oral vitamin A [5]. This simple, low-cost intervention protects the cornea and has successfully saved the eyesight of millions of infected children [6]. And, those who are vaccinated against measles are spared the risk and need for intervention completely.

[1] https://pubmed.ncbi.nlm.nih.gov/20777111/
[2] https://pubmed.ncbi.nlm.nih.gov/8486934/
[3] https://pubmed.ncbi.nlm.nih.gov/3492298/
[4] https://pubmed.ncbi.nlm.nih.gov/14998696/
[5] https://www.who.int/news-room/fact-sheets/detail/measles
[6] https://pubmed.ncbi.nlm.nih.gov/24407830/

Original Publication: The story was originally serialized in an 1880 edition of Wide Awake, a children’s magazine and later published in a hard cover edition.

Dover Publications, 2006. 224 pages

Web image by Medhum.org

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.

“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.” 

Daudet tried all sorts of therapy, including mashed bulls’ testicles and elixir of guinea pig. Nothing worked, with the exception of large quantities of morphine and chloral hydrate, which made his life bearable. Daudet also coped with his intractable pain by writing about it. He planned to write a complete memoir of his life with pain, but by the time of his death in 1897, he hadn’t gotten farther than 60-odd pages of notes and reflections. About twenty-five years ago, the English author Julian Barnes translated and collected these fragments into a small jewel of a book called In the Land of Pain.¹

The title is illustrative. Those who suffer from chronic pain live in a different country from the healthy, and they gradually find themselves speaking a language that others don’t understand. At first, Daudet introduces details of his discomfort into conversation but soon realizes how repetitive and boring this is to his friends. “Pain is always new to the sufferer,” he writes, “but loses its originality for those around him. Everyone will get used to it, except me.” (p. 19) Daudet finds himself living in a land where suffering is pervasive, “Pain finds its way everywhere, into my vision, my feelings, my sense of judgment; it’s an infiltration.” (p.23) Toward the end he writes, “I’ve passed the stage where illness brings any advantage or helps you understand things; also, the stage where it sours your life, puts a harshness in your voice, makes every cogwheel shriek.” (p. 65)

Although Daudet was not known as a poet, many of these presumably random notes are, in fact, miniature poems. Consider this example: “In the dining room: the man who quite suddenly finds himself unable to read the menu. His wife bursts into tears and leaves the table…” (p. 63) And here is another: “The hotel. The bell-board. The bath times. / Solitude. / Encroaching darkness.” (p. 65)

One of the more depressing aspects of medicine today is the fact that many doctors are still “very poor at discerning things,” at least when it comes to pain. I get a knot in the pit of my stomach whenever I hear a resident discussing whether a patient’s pain is “real” or “imaginary,” or making a cynical comment about drug seeking behavior, especially when the resident herself has prescribed a grossly inadequate course of analgesia. Some of my colleagues believe that a person has to be visibly anguished before they take seriously his reported experience of severe pain. And others get exasperated with patients who describe having more pain than their condition (according to the doctor) warrants, and tell them, “You’re overreacting,” or “It’s all in your head.” When I hear this, I want to shake the physician by their shoulders and yell, “Of course it is! All pain, no matter what causes it, exists in the head. Where else could the experience be generated?”

In the Land of Pain illustrates that chronic pain sufferers can live calm, productive lives despite constant agony. Daudet continued writing, publishing, and socializing until the end of his life, even though he wrote, near the beginning of his journal, “My friends, the ship is sinking, I’m going down, holed below the water line.” (p.7) At the same time, the author’s strength, compassion, and humor illuminate his little book. He emerges as a generous person, who was well loved by his contemporaries. If you were his physician, what would your assessment be?

Would you accuse him of exaggerating his pain because he doesn’t appear desperate?

Daudet refers to his pain as an “unwanted guest,” to whom he intends to give “no special attention.” (p. 79) At another point he reflects on “the ingenious efforts a disease makes in order to survive.” (p. 26) The writer never questions his enemy’s ultimate victory, but neither does he turn in upon himself. He remains a source of joy to others, especially his family, as indicated in this note: “I only know one thing, and that is to shout to my children, ‘Long live life!’ But it’s hard to do so while I am ripped apart by pain.” (p.49)

Chronic pain remains challenging for doctors to treat. One set of barriers are the moral and legal concerns about overuse of opioid analgesics. Questions about the threat of addiction, or the possibility of being manipulated, favor resisting the patient’s suffering, rather than responding with compassion. Many are uncertain about how to proceed because they lack knowledge of treatment protocols that include nonpharmacologic modalities, or referral to pain control clinics for invasive procedures. Alphonse Daudet’s little book invites us to imagine ourselves living, at least for a little while, in the land of pain.

1. Daudet A. In the Land of Pain. Edited and translated by Julian Barnes. New York, Alfred K. Knopf, 2002. (page numbers indicated in the text).

Photo of Alphonse Daudet from Wikicommons.

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

In her second collection, “I Watched You Disappear” Silver’s poems invited us to accompany her on her journey through treatment, anger, despair, determination, and faith. This third collection (her penultimate) continues the author’s beautifully written illness narrative, again presenting moments of joy and of despair, and always of hope. 

Silver places her title poem, “From Nothing” (pg. 1), before Section I as an epigraph to the entire collection. “Each death I witness makes me more my own,” she writes, and although the poem sees “muscle shredded” and “bone sheared,” the poem’s last lines lift, as do many of Silver’s poems, into hope and faith: “and my molecules will vault, emerging. / From darkening days, the light will surge and flee.” Section I begins with poems of memory–“Summers in Vermont” with her family (pg. 5)–and “Coincidence,” when her sister’s child is born on the same day that Silver holds her breath and presses her “shorn chest” to an X-ray machine (pg. 7). The memories here are of family moments, both the joyful and those tinged with such “darkening days.” In “Luzerne,” she recalls when time was “consigning” her to such darkness, but two things saved her: her son, the poet’s hand touching his “damp blond hair,” and poetry, “offering itself like a pair of velvet shoes” (pg.13). Silver develops the idea of poetry as a special entity, a gift that enables her to walk forward in her journey, in “Raven” (pg. 15). She imagines a raven lifting her, holding her, and then setting her down in her home, where, she says, “dawn drove a pen into my hand.” This sense of urgency and necessity pervades all of Silver’s poems, as if she has been commanded to write her story.  

Section II begins in “Anguish” (pg. 19) a stunning poem about the loss of her first child, a daughter, but the section ends in joy with “After a Favorable PET Scan” (pg. 38). It might be difficult to find another poem by any author that offers such resounding relief and happiness. This poem, especially, speaks to how terrible every test is for those who are suffering, for those whose test results might mean more medication, more surgery, or less time to live. The celebratory release felt by patients when results bring good news must be a special kind of joy: “Oh world, I will give you all my love. / I will race like a child through the fields, / I will chase off the unkindness of ravens. / My words will grow thick as marshes, / sheltering nests in salty steams.” The poems in Section II are some of the most beautiful and moving poems in this collection. See especially “Tenebrae” (pg. 21), a plea for life; “Poise” (pg. 26), a rant against giving in to cancer; “Snow White” (pg. 30), a poem of mourning for self and others; and “Four Prayers for Forgiveness” (pg. 34-35), a poem that turns illness into beauty: “–the scattered lumps in my lungs / become church domes roofed in green mosaics, / my bones’ fissures fill in with grass-green yarn. / . . . I open my eyes and all is golden.” 

Section III seems to present a corrective reaction to the joy expressed in the final poem in Section II. The poems in this last section are short, mostly one stanza, a catalog of things that are broken, cracked, ripped, or chipped. The warning that nothing lasts forever is implied in poems such as “Partings” (pg. 44) and “Woman with a Hole in Her Stocking” (pg. 45), in “Red Never Lasts” (pg. 47) and “Autumn” (pg. 57). Yet, as always in Silver’s poems, the warning is tempered by the beauty of her words and the depth of her insight into what it is to suffer over the course of an illness that has remissions and recurrences, that sees the body changed and relationships altered. In “Ideal Speech” (pg. 58), she writes “Listen to the Holy Ghost. She blows through you, / she blows her poems right through you.” Even when days seem darkest, the ideal speech for Silver is poetry, and she is the “you” through which the Holy Ghost speaks these auricles. In the book’s final poem, “Three Roses” (pg. 59), the author once again works her spell, turning illness into beauty and despair into hope. “Where only my scar line remains, a red rose blooms. / Luscious, full, so open that if it dropped a single petal, / it would not be as lovely as it is this very moment.” And in the poem’s final lines, “Lay her hands on my chest–here, I give it to you. / Feel your palm on my skin heat and spark,” What is the “it” she gives us? I believe that Silver invites us, as Whitman did, to merge with her and to live within her words, which are her flesh, the poems she writes and then gives us to read and ponder.  

Miscellaneous 

In my annotation of Silver’s second collection, “I Watched You Disappear,” I wrote that her poems might be difficult for some to read: “These poems are beautifully crafted, often primal, and they touch the deepest reaches of personal illness and the shadow of mortality. Readers who have breast cancer or who have family or friends living with breast cancer, might find these poems difficult to read–others under the same circumstances might find them difficult and yet, at the same time, essential.” The poems in this collection can be as raw as they are hauntingly beautiful. But, as do her other books, this one again opens to us a world apart, one we cannot enter unless we share this author’s diagnosis and illness trajectory. If we are caregivers or care receivers, if we suffer or we watch loved ones suffer, these poems plunge us into emotions that we ignore at our peril.  

Publisher Louisiana State University Press 
Place Published Baton Rouge 
Edition 2016 
Page Count 65 

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

Among the scores of essays Montaigne wrote, while occasionally serving in various government roles, are accounts and commentaries concerning many of his infirmities. Kidney stone attacks in particular plagued Montaigne, and so they became subject matter for several essays. His focus on “the stone,” as he called this condition, generally concerned the physical and mental suffering acute attacks caused him, his work at reconciling a life with intermittent attacks, and from these two features, the profit his attacks afforded him. (N.B. I have drawn Montaigne’s words from the Everyman’s Library collection of Montaigne’s essays.)

Attack of The Stone

Pain from acute kidney stone attacks always ranks amongst the worst humans suffer from diseases, injuries, or various conditions. Montaigne’s vivid and horrifying descriptions of his kidney stone attacks lend credibility to these rankings: “I am at grips with the worst of all maladies, the most sudden, the most painful, the most mortal, and the most irremediable.” (p. 698)

To others looking on during one of his attacks, Montaigne says: “They see you sweat in agony, turn pale, turn red, tremble, vomit your very blood, suffer strange contractions and convulsions, sometimes shed great tears from your eyes, discharge thick, black, and frightful urine…” (p. 1019) No observer could doubt the intensity of pain kidney stone attacks produce after reading Montaigne’s accounts; no current sufferer would contradict them. 

A Life Accommodated

The pain and agony kidney stones inflict are never forgotten. And, the fear of knowing they will strike again is ever present, with good reason; they often return time after time. Indeed, this threat is a form of suffering of its own. Montaigne was cognizant of this reality, and writes about how he learned to live with the inevitability of a next attack. 

In the eighteen months or thereabouts that I have been in this unpleasant state, I have already learned to adapt myself to it. I am already growing reconciled to this colicky life; I find in it food for consolation and hope. So bewitched are men by their wretched existence, that there is no condition so harsh that they will not accept it to keep alive. (p. 697).

His primary approach was adopting a mentality allowing him to maintain as much function as possible while under frequent sieges of the stone: “I have kept my mind, up to now, in such a state that, provided I can hold fast, I find myself in a considerably better condition of life than a thousand others, who have no fever illness but what they give themselves by the fault of their reasoning.” (p. 701) Montaigne advises these thousand others they would do well to adjust their reasoning because the problem “occupies in us only that much room as we give it.” (p. 47) As for how much room to give the stone, he says, “we have no cause for complaint about illnesses that divide the time fairly with health.” (p. 1020)

With his reconciliation of a life with the stone, Montaigne carries on as close to a normal life as possible and not being obsessed with his condition: “Do not expect me to go and amuse myself testing my pulse and my urine so as to take some bothersome precaution; I shall be in plenty of time when I feel the pain, without prolonging it by the pain of fear.” (p. 1023) 

Profitable Kidney Stones

“I have in [my] time become acquainted with the kidney stone through the liberality of the years. Familiarity and long acquaintance with them do not readily pass without some such fruit.” (p. 697) The fruit is the profits he gains with kidney stones. The profits derived mainly from lessening his fear of death, better appreciating the health he had, and getting on with his life more easily. As such he has profited from receiving benefits exceeding the costs he incurred through suffering. 

“I’m not dead yet.” Montaigne wrote that when the stone visited him, he felt he was “so far forward into death that it would have been madness to hope, or even to wish, to avoid it, in view of the cruel attacks that this condition brings.” (p. 771) He had come face to face with death on those occasions only to survive. What he gained from these encounters he eventually appreciated as a form of profit. 

I have at least this profit from the stone, that it will complete what I have still not been able to accomplish in myself and reconcile and familiarize me completely with death: for the more my illness oppresses and bothers me, the less will death be something for me to fear. (p. 698) 

“What a feeling.” The perception of good health is created mostly either by various metrics like physical fitness standards (e.g., weight, strength, endurance), medical diagnoses, and other empiric findings, or by contrasts to states of bad health. Montaigne claimed great profit because his kidney stones reminded him how good his health is generally when he’s not in the midst of an attack. 

But is there anything so sweet as that sudden change, when from extreme pain, by the voiding of my stone, I come to recover as if by lightning the beautiful light of health, so free and so full, as happens in our sudden and sharpest attacks of colic? Is there anything in this pain we suffer that can be said to counterbalance the pleasure of such sudden improvement? How much more beautiful health seems to me after the illness, when they are so near and contiguous that I can recognize them in each other’s presence in their proudest array, when they vie with each other, as if to oppose each other squarely! (p. 1021)

Montaigne also perceived profit from the finite nature of kidney stone attacks. He points to the abrupt resolution of an attack followed by a quick return to good health in contrast to other diseases causing their victims continuous suffering: “My sickness has this privilege, that it carries itself clean off, whereas the other always leave some imprint and change for the worse that makes the body susceptible to a new disease.” (p. 1022)

“Brush off the clouds and cheer up.” To Montaigne, kidney stone attacks are gruesome and can make the sufferer wish to die. But, by their nature, and as a form of profit, they can make life better between attacks than it would be otherwise. Montaigne sees this profit in the certainty that any attack will end and lives can go on as planned, because the stone is “a disease in which we have little to guess about. We are freed from the worry into which other diseases cast us by the uncertainty of their causes and conditions and progress—an infinitely painful worry.” (p. 1023) This means for Montaigne, that the stone “almost plays its game by itself and lets me play mine. (p. 1022)

The idea that there can be profit or any form of benefit from having kidney stones is likely preposterous to modern day sufferers, especially when effective analgesics and surgical techniques for acute attacks and methods for preventing them are available. Many people, however, still struggle with chronic kidney stones making Montaigne’s observations and advice relevant yet. Drawing from a cultural analog, he might tell them to look for the profit kidney stones generate, and when found, they will see that gray skies are going to clear up, so put on a happy face. Alas, his admonition would likely be met with stony silence. 

Kidney stone image from the gallery at KidneyStoners.
Title image credit: Three Kidney Stones Highlighted in Red. Sanderlewis, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0, via Wikimedia Commons

On September 9, 1982, on her 25th birthday, Julie Ridge became the 242nd person to swim from England to France. On April 11, 1991, Ridge was hospitalized for 21 days and unceremoniously received a diagnosis of bipolar disorder I. Julie’s one-woman show Bipolar & The English Channel tells the story of how a casual mile-a-day pool swimmer became an English Channel swimmer in nine short months and her 17-hour, 55-minute zig-zag journey across those grey murky seas. It also tells the less glamorous story of a world-record holding endurance athlete who wakes up one not-so-fine day floridly manic, locked down on an unforgiving New York City psychiatric ward – and her arduous journey back to sanity and a fulfilling life.  

On March 26, The College of Physicians of Philadelphia presented a performance of Julie Ridge’s one-woman show: https://collegeofphysicians.org/events/bipolar-english-channel-one-woman-show In advance of the event, Guy Glass has had the pleasure of speaking with writer and performer Julie Ridge about her work. 

Guy: Julie, I had the privilege of seeing your show Bipolar and the English Channel a couple of years ago in New York. It was informative, entertaining, and inspirational. As you know, I help arrange programming for the College of Physicians of Philadelphia. As a psychiatrist and playwright, theatrical representations of mental health issues are right up my alley. I am so glad it is working out to have you bring it to the College! 

The very striking title of your piece brings together two images that seem completely unrelated, but you fuse them together so convincingly. Can you say something about your background that sheds some light on the title, about your life as a swimmer, and then your discovery of your diagnosis? 

Julie: With the title, I’ve tried to conjure the image of how my life with bipolar disorder and my unlikely swim across the English Channel run parallel to each other and are symbiotically intertwined. My decision to the swim the English Channel came on as spontaneously as a manic episode. I tell the full story in the show, but the germ was planted when a friend who swam two miles-a-day broke his wrist, and I doubled my casual one mile a day in empathy for his mandatory pool abstinence. At the time, I was an actress performing in my first Broadway show and swam for peace of mind and to stay in shape. The story of learning I had bipolar disorder is the subject of the second act of the show – so, I ask your readers to come see it to hear the tale. 

Guy: Can you tell us how and why you decided to turn your story into a show? What is it like for you to perform? What has the reaction to the show been like, especially from the mental health community? 

Julie: After my diagnosis in 1991, I went back to school to get my master’s degree and became a psychiatric social worker. Over time, I’d developed a seminar that told the story of my English Channel swim and bipolar diagnosis. The decision to turn the informal seminar into a show first arose when I discovered I was a single hour shy of collecting my Actor’s Equity pension. I asked all my friends who were still in the theater if they could write me into a contract show, maybe as a person lying behind a couch or something, even just for the first act of one show, and I’d refund them my salary – I just needed that single hour to collect a lifetime pension. A couple of years went by, no offers were made, I was getting closer and closer to 65, so I decided to do it myself. I wasn’t going to lose my pension over one measly hour.  

On the 5th Anniversary of the non-profit organization I founded in memory of my dad, I pulled together the least expensive Actor’s Equity contract possible that would get me that hour. That contract was four staged readings at the Studio Theater on Theater Row off Broadway in New York City. It was the first time I’d disclosed my bipolar disorder publicly and, frankly, I was terrified. But community members, family, buddies from high school and college, and colleagues were incredibly warm and receptive.  

That four-day run led to performances in the United Solo Festival off Broadway for two consecutive years. A performance at my sister’s temple outside of Boston was seen by a friend with connections to the Sedona Festival, which led to another gig at the JCC in Hartford Ct and so on. It’s my hope that I will be able to perform the show each year in venues across the country.  

As for how it is to perform it – I actually have acute social phobia and get terribly anxious every time I perform the show. It’s odd, because performing when I was an actress was easy and highly enjoyable. But those shows were written by other people and not about my life. Doing something so intimate and personal is quite different. I never know how it’s going to land and be received.  

Guy: I see that in addition to Bipolar & The English Channel, there is a documentary film about you. Can you say something about how this came about?  

Julie: Seems there’s a story behind everything! Zac Norrington, a film student at the New School in New York City needed a subject for his Capstone project senior year. Long distance swimming and cold-water swimming was something of personal interest to him because of a near-death experience his grandfather had. Zac brilliantly thought to contact Ned Dennison, the Director of the International Marathon Swimming Hall of Fame (IMSHOF) for recommendations on swimmers he might interview in New York. Turns out that swims I’d done in 1983 and 1985 put me in the record books. My athletic resume in the 1980s was out of the ordinary, and to my amazement, I was inducted into IMSHOF in 1985.  

Ned recommended me and a couple of other swimmers. Zac interviewed a few of us, showed his preliminary work to his class and professor and they all said “forget about the other swimmers. Focus on Julie’s story.” He did. His short documentary BREATHE, is about the intersection of my double swim around Manhattan Island and my bipolar disorder. He submitted the doc to several festivals, we got showings at many of them, including the prestigious ReelAbilities Film Festival. At our last festival, The Greenwich Village Film Festival, we won Best Short Documentary. Zac was a wonderful director, cameraman, editor and producer. He completed the entire movie during the pandemic. I’m very impressed with the work he did culling together our interviews, still photos and archival footage. It’s been an honor attending talk backs to represent the film. 

Guy: Can you tell us about the organization you founded, the Frank Ridge Foundation? What its mission is, why you decided to start it, and about some the foundation’s projects?  

Julie: Ah, the subject nearest and dearest to my heart. Thanks for asking. Frank Ridge is my dad – one of the kindest and most loving dads a girl can be fortunate enough to have. Dad died in 2013 after 90 full years, rich with adventure, and community involvement. Pops supported everything I ever did, unquestioningly and unconditionally. He was by my side stroke after boring stoke for all of my swims, was in Hawaii melting in the heat with me when I completed the Ironman Triathlon and rode side-by-side with me as we biked 3,700+ miles across America. Dad was also a pretty smart businessman, and he left me and my sisters some money. I’ve never had much money – I chose lucrative fields like acting, writing and social work – so what he left felt like a fortune. I took almost half of my inheritance and founded a non-profit in his honor, the Frank Ridge Memorial Foundation, Inc. (frankridgememorialfoundation.org), dedicated to living well with mental health conditions through awareness and understanding. Our primary work is:  

• Creating and facilitating resource-rich topical seminars, using accurate compassionate movies as the springboard for conversation, for community members and mental health practitioners required NY continuing education.  

• Maintaining our resource-rich website. 

• Providing meaningful part-time employment for individuals living well with mental health conditions.  

• And performing Bipolar & The English Channel whenever the opportunity arises. 

I’ve loved working for myself running this organization for the past 12 years and hope to keep on for as long as I am able! 

BREATHE TRAILER: 

VIEW THE FILM HERE: 

https://www.docnyc.net/film/doc-nyc-u-life-in-the-big-apple/breathe/

In “Mandatory Evacuation Zone,” Felice Aull has gathered 63 beautifully crafted poems in which she examines the intricacies of language and loss, of grief and healing.  Each of the book’s five sections considers these themes in slightly different ways, always in language that is understated, vivid, and exact.  In Section I, we read poems that focus on the author’s complicated family history and her early loss of homeland.  In “Tracings” (page 15), an unknown relative (thanks to online genealogy searches) reaches the narrator and wants to meet her.  She, however, only wishes to learn “. . . how my parents / and my infant self / made our tortuous way out . . . . ” Brought in infancy from Germany to America, the author suffers the loss of both native homeland and native language (“Notes from an Alpine Vacation” page 16).  She searches photos of her mother and ponders museum note cards illustrated by Holocaust survivors (“Museum Notecards” page 18), imagining what she can’t quite know and yet can’t quite forget.  

Section II finds the narrator as a young woman in American, awakening to sexuality (“Gay Blades,” “Camp Counselors Make Out,”  “On the Staircase” pages 29-31), becoming a wife and mother, and then a grandmother.  A grandchild’s birth is both joyful and yet another “slipping toward / the edge of separation” (“Daughter in her Eighth Month” page 37). 

In Section III, the author turns her gaze to observations of the world around her, around us, aware of how many come to loss and death.  “Be prepare to mourn,” she tells us in “Disaster in October” (page 49), and in the moving poem, “I Saw the Smoke,” re-visions September 11th in words stripped of sentimentality and therefore made more powerful. 

Sections IV and V confront bodily loss through aging and illness, noting how, in so many ways, we try both to capture and to let go: “You snap photo upon photo / hoping to grasp and preserve / what cannot be grasped” (Capturing Alaska” page 66).  We learn of the most personal losses in poems of biopsies, surgeries, and chemotherapy.  When facing the unknown, every event might seem to hold a prediction.  In “Stunning Blows,” a doorman stuns a mouse, claims that it’s dead.  But the narrator, aware of the wages of time, writes, “But I still see it, like death, / moving toward me” (page 81).  At the book’s end, we return to language, how it too can leave us (“Forget That” page 90).  Yet in the collection’s final, gentle poems, the poet is “able, finally / to walk past the park’s redbud tree / without weeping” (“Immunity” page 96).

Although there are many poems that confront loss both recalled and experienced. grief for self and others, illness and the unknown in this collection, there are also poems of great acceptance and ultimate joy: “These gifts and losses, every year, mine” (“The Key to Gramercy Park” page 98).  The poems in “Mandatory Evacuation Zone,” show us how poetry can help us to “declutter” (see “Divesture” page 99) and release, and at the same time, hold on to and embrace.

Kelsay Books, California 2017: 100 pages

Felice’s website: https://www.feliceaull.com/

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

There is nothing to read on the psych unit but a bulletin board listing the daily activities and some magazines. This makes Chihaya think about her relationship to books, which is a complex one. She muses that “it is every writer’s fear that our books will be the death of us” (p. 11) and humorously writes about how she once had a bookshelf that was so wobbly she worried it would topple over on her. However, the real damage that books inflict may be insidious. The author first began to read as an escape from her unhappy childhood, but she fears she now “love[s] books to a dangerous degree” (p. 20).  They have become her life to the extent that she does not know if she “would be anyone at all” (p.12) without them. A feature of her depression is that she has completely lost interest in reading. She half-seriously coins the diagnosis “bibliophobia” to describe her condition. It will take just the right book to cure her, and when she finds it, she begins to read again, and to heal.  

Over the course of Bibliophobia Chihaya tells us about the books that have been of vital importance to her, many of which she associates with relationships or with stages in her life. Eventually, she reads the DSM about her own psychiatric diagnosis, and she reads books that other people have written about their depression. Working with a therapist, she realizes she needs to move on, and she lets go of her academic career. By the end of Bibliophobia we learn that Chihaya has finally written a book, but it is not the one she was expecting to write. It is Bibliophobia.

Bibliophobia is an unusual hybrid of a book that is part literary criticism part memoir. The author has been influenced by numerous mental health memoirs including recent celebrated works by Donald Antrim, Esmé Weijun Wang, and George Scialabba.

The first chapter, the subsequent emotional journey of the author, and her conclusions all captured my attention. I must confess that much of the rest of this book interested me less for the simple reason that I had not read any of the books the author discusses in detail. I do not even think we have the same taste in literature. However, this may not prove to be a stumbling block to potential readers who are fans of Toni Morrison, Anne Carson or Anne of Green Gables, or who just love reading about books.

According to the American Psychiatric Association, stigma around mental health is common in Asian American communities. One praiseworthy attribute of Bibliophilia is how it calls attention to the challenges that these groups experience in accessing care. Chihaya, was raised by a Japanese father and a Japanese Canadian mother who “did not believe in the concept of mental health; everyone was either fine or just complaining” (p. 49). Growing up with the message that depression is “not for the children of immigrants [but] something that happen[s] to white people in independent films” (p. 7) it goes without saying that Chihaya cannot bring her symptoms to her parents’ attention. Filled with shame, it takes her many years until she can no longer ignore them. Fortunately, Chihaya has given us a book filled with insights that one hopes will inspire others to seek help.

Bibliophobia
Sarah Chihaya
Random House, New York, 2025, 214 pages

References:
https://www.psychiatry.org/psychiatrists/diversity/education/asian-american-patients
Web image from Wikicommons.