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.

Tuner follows Niki White (played by Leo Woodall), the apprentice of piano tuner Harry Horowitz (Dustin Hoffman), and a tragic genius. Once a gifted pianist, Niki developed hyperacusis—an increased sensitivity to sound that prevents him from playing the piano and requires him to wear hearing protection at all times. After Harry forgets the combination to his safe, Niki teaches himself to open it by listening to the lock’s subtle sounds. When Harry is later hospitalized, Niki begins cracking safes to pay off his mentor’s mounting medical debt.

By the film’s second act, Niki’s increasingly dangerous work jeopardizes both his safety and his relationship with his girlfriend Ruthie (Havana Rose Liu), leaving him to confront the consequences of his actions. When Niki makes amends in the third act, Uri (Lior Raz), the leader of the criminal group in which he has become entangled, viciously beats him. The injury costs him part of his hearing but enables his return to the piano.

Tuner is engaging, beautifully constructed, and emotionally resonant. At the same time, it turns disability into a plot device. Marking director and co-writer Daniel Roher’s fiction debut, the film fully embraces the artistic license afforded by the genre, casting hyperacusis as a superpower rather than focusing on the condition’s often debilitating effects.

To be fair, Niki mentions that, at one point, even the sound of his own voice was agonizing. He is constantly on guard against potentially harmful sounds. When confronted with barking dogs, smoke alarms, air horns, and gunshots, he winces and clutches his ringing ears.

But the impact is fleeting. In real life, exposure to noises like these can permanently worsen hyperacusis. Furthermore, the hearing disorder is not a “superhuman” tool; many individuals with hyperacusis show normal hearing thresholds. For those with milder cases, everyday sounds like a running dishwasher can cause significant discomfort. In more severe cases, even near silence can be excruciatingly painful. One wonders how Niki could tolerate the clicks, clacks, and whirs of piano keys and combination locks (another creative liberty: modern safes are designed to thwart auditory decoding).

As disability studies scholar Rebecca Garden argues, there are “tensions between the lived experience of illness… and the conventions that shape the representations of those experiences in published narratives.” [1] In other words, the demand for drama often precludes verisimilitude, instead favoring a happy ending of triumph over adversity. Niki’s liberation from his condition is narratively satisfying; another, if less commercially successful, film might depict a similar character learning to live with it.

In his seminal text The Wounded Storyteller: Body, Illness, and Ethics (2013), sociologist Arthur Frank enumerates three types of illness stories: restitution, chaos, and quest. The restitution narrative “has the basic storyline: ‘Yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again,’” the chaos narrative “imagines life never getting better,” and the quest narrative “accept[s] illness and seek[s] to use it.”

Tuner follows a kind of restitution storyline: Yesterday Niki was a healthy prodigy, today he cannot perform because he is sick with an exploitable “superpower,” but tomorrow a thief will effectively cure him by rupturing his eardrums. The film also features aspects of the quest narrative; to quote Frank, Niki “returns as one who is no longer ill but remains marked by illness”—that is, no longer hyperacusic but partially deaf. Niki is figuratively reborn with a new purpose, embodying the film’s Spider-Mannish moral logic: “With great power comes great responsibility.”

Despite these quest elements, Niki’s story remains fundamentally a restitution narrative. Frank notes that such narratives are “culturally preferred” and calls for “an enhanced tolerance for chaos.” To that end, future films might engage more directly with the lived experience of hyperacusis. Ultimately, however, Roher’s approach is understandable and even commendable, using the possibilities of cinema to draw attention to some of the challenges of a rare, if romanticized, disability.

[1] Garden, Rebecca. “Telling Stories about Illness and Disability: The Limits and Lessons of Narrative.” Perspectives in Biology and Medicine, vol. 53, no. 1, 2010, pp. 121–135.

Photo credit: Black Bear

A Most Unexpected Path Laid by a Most Unexpected Disease

Dr. Ross Slotten chose family medicine to serve patients from cradle to grave. But, as he was entering practice, the AIDS virus was entering the community where his practice was situated, and he found himself serving patients much closer to the grave than the cradle. 

In June 1981, a few weeks before I began my internship in family practice [at Saint Joseph Hospital in Chicago], the Center for Disease Control in Atlanta had published the first report of a strange lethal infection among a cohort of gay men in Los Angeles. I had no clue then that the disease would soon kill friends, former lovers, colleagues, and patients; devastate tens of millions of people and their families worldwide; and consume my entire professional life and more than half my chronological one. (p.14)

From both the circumstance of time and place he found himself in, and the sense of necessity and compassion that claimed him, Slotten’s professional trajectory unexpectedly shifted away from traditional family medicine towards specializing in AIDS. His interest in AIDS, however, extended to personal considerations, because as a gay man, he was part of the population at risk, and harbored the same anxieties and fears he saw in his patients and throughout his social circles. His patients were principally gay men because of his geographic location in an established gay community and the resulting referral patterns. The book chronicles both his experiences as a physician taking care of gay men with AIDS, and his experiences as a gay man at risk for AIDS. For Slotten, these experiences were not independent of one another, which makes for rich insights on the complexities of both. 

Slotten spent a lot of time at Saint Joseph Hospital because his patients required intense medical support and specialized services. He tells how he and his practice partner pushed for establishing a specialized AIDS unit in the hospital. They bumped up against usual bureaucratic obstacles, plus a few more concerning issues specific to AIDS patients, but they ultimately prevailed. Slotten “was to spend the next fifteen years there, often heartbroken, occasionally inspired.” (p. 109) In contrast to his commitment, he recounts how some specialists he called for help with particular patients refused when told they had AIDS. Those occurrences stuck with him: “I couldn’t forgive those other physicians for abandoning me and my patients in the hours of our greatest need.” (p. 108)

With whatever little time he had left for volunteer and advocacy work, Slotten stayed local. He talks about the volunteer-run health clinics where he worked (e.g., the famed Howard Brown Clinic), and the housing facility he helped set up for homeless people with AIDS. He left protesting at the Food and Drug Administration, the National Institutes of Health, and the annual International AIDS Conference to others while he focused on his patients, his studies, his volunteer work, and his own safety.

The 2020s are approaching when Slotten writes about the preceding three-and-a-half decades. As he finishes the book he is still caring for people with HIV, but the horrible complications of AIDS are now infrequent since the availability of effective medications. His practice had been reliably stable and predictable for some time, a circumstance he could only dream of when he first started. That dream ended abruptly just as the book was released on July 15, 2020: Covid was surging.

Moments of Horror, Relief, Calm, and Then…

Slotten’s perspectives correspond with the trajectory of AIDS over the thirty-five years his memoir spans. Particular periods are discernable, beginning when gay men were presenting with illnesses associated with profound immunodeficiency of unknown cause. Another is the time of peak AIDS death and destruction represented by the moment in 1992 when Slotten hears from the Chicago Board of Health, “that no one had signed more death certificates in Chicago than I had.” (p. 122) The next moment arrives at the turning point when highly active antiretroviral treatment (HAART) became available, transforming HIV/AIDS for him “from a universally fatal disease…into a chronic one like diabetes…it was almost beyond belief.” (p. 186) Then the prolonged period of relative calm when AIDS became controllable—even preventable—with Slotten noting during a moment in 2016 that, “It had been almost a decade since I’d cared for someone with advanced HIV infection, and I hadn’t lost a patient to AIDS since 2004.” (p. 202)

The AIDS epidemic is known for and measured by the number of deaths that occurred. Slotten wants us to remember the misery the disease causes.

For those who didn’t experience that terrible time, or who’ve forgotten how terrible it was, let my chapters serve as a warning to the complacent and the ignorant: untreated HIV is as ruthless as any terrorist and as destructive as a nuclear device. (p. 3)

He drives this point home when he recounts the stories of individual patients tortured by Pneumocystis carinii pneumonia, Kaposi’s sarcoma, cytomegalovirus retinitis, herpes simplex infections, cryptosporidium dysentery, AIDS wasting syndrome, AIDS dementia complex, and progressive multifocal leukoencephalopathy among other medical horrors, and who often suffer many at the same time. And, all the while, he had little to offer but his wits and his compassion. 

Both attributes would be called upon again in 2020 as Covid struck. Though those with Covid did not produce nearly the fatality rate of AIDS, not nearly the severe comorbidities of AIDS, not nearly the stigma and prejudice as AIDS, and not any of the governmental insouciance seen with AIDS, it still caused a lot of death, suffering, grief, and misinformation at a time when only supportive care was available. Like AIDS, though, the Covid pandemic was transformed into a manageable syndrome with the availability of an effective vaccine, new antiviral agents, and better clinical management regimens.

Complacency remains a threat to the reemergence of any infectious disease. Indeed, AIDS is reportedly rising in poor and developing countries in 2026 as funding for AIDS treatment and prevention programs has been withdrawn from donor countries, mostly that from the United States. Lessons from Slotten’s book may thus be called upon again.

Notes

Book citation:
Slotten, Ross A. Plague Years: A Doctor’s Journey through the AIDS Crisis. University of Chicago Press, 2020. 224 pages

Plague Years is a good companion to the documentary film, 5B, which reports on how San Francisco General Hospital coped during the early years of the AIDS epidemic, and Rebecca Makkai’s novel, The Great Believers which features the stories of a group of gay men in Chicago also during the early years of the AIDS epidemic.

Dr. Slotten was a guest on an episode of The Clinic & The Person podcast to discuss his experiences during AIDS epidemic as he reported them in his book, and how well they match up with what we see in 5B and read in The Great Believers.

Web image by Medhum.org

Out of the gay rights activism in the 1970s came AIDS activism in the early 1980s. By then, the incidence and severity of AIDS had become evident and caused enough fear to generate social backlash against those with the disease. This, along with federal government insouciance at the time, made it necessary for gay rights activists to extend their remit into advocacy for health care specialization and research advancements for AIDS. The expanded activism was visible on the streets and at governmental research institutions (e.g., National Institutes of Health). Where it was also taking place, and not in such an obvious way, was within certain hospitals.  

San Francisco General Hospital answered the call first in 1983 when it created a special unit for the care of people with AIDS in “Ward 5B.” The unit was in operation through its move in 1986 into Ward 5A to accommodate more patients, and until 2003 when advances in antiretroviral treatment of AIDS made the unit no longer necessary. But throughout, the struggle to maintain and advance the unit medically, socially, and politically persisted. The documentary film, aptly named “5B,” covers the struggles, successes, and failures of the unit, and the activism required of the staff and advocates for its creation and ongoing viability.  

From the Inside 

The story is told from various perspectives through interviews with key figures in the unit’s development and operation, and with archival footage of the unit and AIDS activism in the community. The most prominent among the key figures is Cliff Morrison, a clinical nurse specialist who spearheaded the idea for the unit and then managed it. Several other nurses who served in staff and supervisory positions are also featured. Participating physicians include Paul Volberding, an oncologist at the time who became pivotal in the development of effective HIV treatments, and Julie Gerberding, a physician treating patients on the unit who later became the Director of the Centers for Disease Control (CDC). Lorraine Day, the chief of orthopedic surgery at the hospital when the unit opened, is heard often as an opposing voice. Hank Plante, a local television news reporter, also appears frequently to offer his perspectives on many of the social and political issues swirling around the unit. Among other participants are AIDS activists, volunteers, and family members of unit patients. 

Several storylines frame the documentary including how nurses drove the unit’s inception and then were instrumental in running it. “Nurses were in charge,” said Volberding, admiringly. Interwoven throughout the film are the experiences of the patients and individual nurses, including one nurse who was infected with HIV from a needle stick. “Those nurses were the real heroes,” said one activist.    

Rare is the story, though, about heroes who aren’t confronted with daunting challenges, and thus this documentary includes a storyline involving attacks the unit nurses encountered from inside the hospital. The nurses of this unit practiced in ways they considered safe but not in such a manner that would preclude them from touching patients or require them to don so much protective gear they become unseeable. Nurses and clinicians from other units objected and did not want to be compelled to adopt practices they thought endangered them on the occasions they took care of AIDS patients. The film follows this story through union grievances and public debates to their conclusion, which sided with the unit nurses and their advocates. The spirit of activism among the unit staff was pivotal in fending off the many challenges they faced. 

Keeping in Touch 

The documentary reveals stark juxtapositions that can manifest in the midst of an infectious epidemic, and in particular when an epidemic selects an identifiable group that is unwelcome in mainstream society. Two juxtapositions that stand out are the emotion of love with that of fear, and those who are deemed worthy with those who are considered disreputable. 

No treatments for the HIV infection or for the many horrid and lethal diseases resulting from AIDS were available when the unit opened—it was “a very, very unpleasant death” as one nurse put it. The nurses saw a big part of their role as offering love: “Here you were allowed to love your patients.” They offered it through human touch. Morrison’s view was, “If we can’t save these folks, we’re going to touch them.” To touch the patients in this way required that they balance it with the risk of exposure to infection and still comply with universal precautions. Nevertheless, fear was prevalent—some people were “truly hysterical” according to Gerberding—and it touched off conflict among the health care staff. “People were afraid…we found ourselves attacking each other…everyone was so stressed,” is how Volberding described the situation. This balance is one that is continuously negotiated in health care settings, but it was more pronounced during the early years of the AIDS epidemic, and at San Francisco General, it had to be mediated by hospital and union officials. 

At the time unit opened, and for a long while after, people with AIDS were scorned. The gay lifestyle was linked to the disease and so a view held by many was that the gay community deserved to be struck down by this plague. They were not worthy of all the human resources, technology, and money the disease required. The documentary brings this sentiment to life by showing the actions some people took to prevent getting these patients help, and the actions governments didn’t take to help them. Also shown, however, was how the activism of health care professionals and others in Ward 5B helped to overcome these obstacles. Without it in the case of the unit in Ward 5B, the activism in the streets outside the hospital alone may not have been enough.  

But Then 

These fevers abated some when medical advances produced treatments that obviated the need for AIDS units, and changes in societal attitudes led to more acceptance of gay lifestyles. The next epidemic that targeted marginalized and susceptible groups would determine whether lessons learned from the time of this unit had been incorporated in response protocols. That opportunity came the year this documentary was released in 2019 when Covid struck elderly people first and hardest, and especially those in communal living arrangements.  

Note: 

The documentary was featured on the podcast episode, How Terrible It Was: Three Takes on the AIDS Crisis with Dr. Ross Slotten, which can be accessed here on medhum. In addition to the documentary, the podcast episode included the novel, The Great Believers, and the memoir, The Plague Years: A Doctor’s Journey through the AIDS Crisis were discussed. The author of the memoir, Dr. Ross Slotten, joined the podcast as a guest. 

Title image credit: 
James Steakley, CC BY-SA 4.0 <https://creativecommons.org/licenses/by-sa/4.0>, via Wikimedia Commons 

Documentary information: 
Film title: 5B
Directors: Paul Haggis, Dan Krauss 
Studio: Vertical Entertainment 
Viewing source: Amazon Prime 
U.S. release date: June, 2019 
Run time: 134 minutes  

Trailers from 5B Film

Herein I argue not only that video games are an epistemically valid artform but also that the health humanities should actively incorporate them into critical discussions. As any diligent qualitative researcher would say, such arguments must position the writer, so I’ll begin by briefly describing how I came to this topic.  

At the time of writing, I am a resident in psychiatry in New York City. I grew up and completed my formal education in the Middle Atlantic region, and video games have been a part of my life the entire way. As a child, I was fortunate enough to play both handheld (e.g., Nintendo Game Boy) and console (e.g., PlayStation) systems. I gravitated toward role-playing games (RPGs), those in which the player acts as a particular character to live through ​​that character’s narrative (often a hero’s journey). I especially loved fantasy and science fiction RPGs, which mirrored my passions in literature. Aesthetically, they transported me to rich worlds with stunning visuals. Practically, they taught me skills I didn’t realize I was learning (e.g., map reading, orientation in a digital space, manual dexterity). Emotionally, they carried me through incredibly challenging moments, providing a mentally stimulating escape when my child and adolescent brain needed time to process.  

The messaging had always been clear: if you want to do nothing with your life, then go ahead and play video games in your parents’ basement. Whenever I heard this, I became smaller. Despite my life aspirations and dreams of being a physician, I couldn’t help remembering that I was indeed the child living in his parents’ basement playing video games. I felt I was one step away from failure at any moment. I still enjoyed my games immensely, but I constantly created timelines for when I would “give them up.” Video games became a vice, a tumor that I needed to excise lest it devour me. 

But I couldn’t.  

Every time I attempted to leave video games in my past, something brought them back: the newest installation in my favorite series, a need for variation in my leisure activities, an offer to play a collaborative game remotely with new friends, a need for active escape. Still, I kept it secret. I talked about it with my closest friends, but only if they too struggled with the same addiction.  

Until one day I stopped. I made the active choice to talk about it with my peers, co-residents, and supervisors if it naturally presented itself. And, miraculously, the shame started to ease. I realized that video games nourish my life in ways that other activities do not. In some respects, they offer the narrative of literature, the visuals of movies, and the interactivity of board games all wrapped in one beautiful image. I started to question why I could spend countless hours reading or watching shows without concern but immediately felt guilty when I played a game. This piece, and subsequent series, seeks to challenge this socialized notion that video games are a waste of life force.  

Just like other forms of media, video games both comment on and transform the human experience. Video games have expanded into innumerable genres and formats. Gone are the days when you needed a desktop computer or a gaming system to play; the size and pervasiveness of the mobile game market is near incomprehensible. Video games have become a part of mainstream culture. It’s time we change our viewpoint on them and treat them like the critical pieces of media they are. Through MedHum, we will join in rewriting this narrative, highlighting the value of video games within the health humanities. First on our docket is an open-world game called Forspoken, a game with a bit of controversy in its reception. Stay plugged in to read it soon! 

Web image by Aditya Sethia

The phenomenon sometimes referred to as “baby blues,” a mild transient state affecting as many as 80% of new mothers, had been recognized early on. In his influential 1946 book on baby care Dr. Benjamin Spock advised that one could snap out of it by just going “to a movie, or to the beauty parlor, or [getting] yourself a new hat or dress” (p. 29). If a new dress did not do the trick, the implication in that era was that you were a defective woman. In the 1962 edition, Spock still repeated the same advice verbatim. The notion there could be a persistent mood disorder requiring treatment required far longer to catch on. In her book, Moran elucidates some of the factors that rendered it difficult to accept the existence of postpartum depression and explain why persistent advocacy was necessary.  

One such factor involved organized psychiatry. While early editions of the DSM (the Diagnostic and Statistical Manual of Mental Disorders) had proposed psychodynamic causes for mental illnesses, in an attempt to be neutral about their origins the DSM-III did not include postpartum disorders as discrete entities. One implication of this was that there was no code to use to get health insurance to reimburse for medical care. The result, according to James Alexander Hamilton, a psychiatrist who had written the first modern monograph on postpartum mental illness, was that “many thousands of very sick women [were] very badly treated” (p. 67). It took several editions of the DSM until this was addressed. And even in DSM-V, postpartum depression would still be coded as Major Depressive Disorder with peripartum onset.  

Eventually the idea there was something more serious than” baby blues” yet still relatively common took root in the public consciousness. One began to hear about it on television talk shows. Yet these appearances often featured extreme cases such as that of Andrea Yates who had drowned her five children: “Tragedy and insanity got ratings. This still allowed advocates a chance to raise awareness on a massive national platform. But it also made postpartum depression frightening and unclear” (p. 166). It took celebrities such as Brooke Shields to come out about their experiences to change the national conversation. After publishing a memoir about her postpartum depression, in 2005 the actress went on the Today Show where she was criticized by Tom Cruise for using antidepressants. When the public rallied behind Shields, this proved to be a turning point for the movement. 

When national bipartisan legislation was proposed to increase awareness and to fund research for postpartum depression, the issue became a political football. Anti-abortion activists coined a brand new “disorder” they called “post-abortion syndrome” and would not consider supporting one without the other. It was not until the passage of the Affordable Care Act that the MOTHERS act went through, and not even then without the concession to abortion politics.  

If Moran’s book breezes through the science behind postpartum depression somewhat rapidly, its chronicle of an important advocacy movement for women’s health makes it worthwhile, and its extensive use of oral histories within the context of the author’s own history ensures it is an interesting read.  

Blue
Rachel Louise Moran
University of Chicago Press, 2024, 304 pages

Web image by Alexander Grey 

See https://www.postpartum.net/ for information about Postpartum Support International, one of the advocacy groups profiled in Blue.  

This is my third trip to Naggalama.

In the summer of 2016, I flew to Entebbe with the doctors to direct a documentary about the US-Ugandan palliative care team. I wanted to explore how the Americans fared in a place lacking the diagnostic tools and tests they depend on in the US, and whether people in the villages, many of whom rely on traditional healers, were receptive to their care. 

Access to healthcare remains a major problem in these areas. The people visited by the team are often in the advanced stages of their disease and need the liquid morphine provided by the government to ease their pain and suffering. Many of the villagers we visited had no idea of their diagnosis and what they could expect as their condition progressed.  

With the footage from earlier trips, we created a video about cancer and what to expect when diagnosed. The video will be shown on mobile phones by Village Health workers to the people they visit in their districts. The purpose of this trip was to produce translated versions of the program.    

There are more than 40 languages spoken in Uganda. English, an official language of the country, and Luganda are the most widely spoken, but to reach a broader audience, including the rural population, we had to produce other versions. On this trip, we spent a week in Kampala at Stone Age Pictures filming in Kiswahili, French, sign language and Luo, a language mostly spoken in northern Uganda. The plan is to record more versions once these are successfully piloted.

Ali Musoke is the head of Stone Age Pictures in Kampala and was the Director of Photography on my documentary film, Oli Otya? Life & Lost in Rural Uganda, in 2017. Travel to and from Stone Age from our guest house averaged 20 minutes door to door. We drove alongside women and men carrying all sorts of items balanced on their heads even an open suitcase displaying pieces of jewelry.   We passed roadside markets and goats nibbling grass on the side of the road. Traffic was heavier than I remember with government and army vehicles speeding down the middle of the road. Public transportation is either by boda boda motorcycles or buses, really no bigger than vans, that stop along the roads to pick up and drop off passengers. There were so many boda bodas to dodge,  at times I felt I was an avatar in a video game, dodging incoming traffic.   

Ali, his crew and I worked in the studio for six days. Together we directed and edited the new versions. To avoid having to re-edit the video for each language, on-camera actors- two nurses and three professional actors- had to read to time while watching the finely cut scenes in the video. For example, in the section about how cancer is diagnosed, we show techs examining scans then processing a blood sample, The translations of the scripts were handled by a professional translation service in Kampala. Because the translated versions were uniformly longer than the English one, we had the translators on the set to make any last-minute adjustments to the text and to ensure that the reading was accurate. Cultural differences quickly surfaced. For example, biopsy is not a commonly used word, and it was necessary to use a description of the procedure. Similarly, the phrase “palliative care” is not widely known, and not simple to translate. We used the English phrase but showed the team in the field talking to a patient and delivering medicine. Images played a key role throughout the video. For the sign language version, we split the screen evenly between the program and the accompanying signing so that people viewing the video on their mobile phones would be able to see the woman signing. 

Once we finished the studio work, we set out for Naggalama to meet up with the team at St. Francis hospital and head out to the villages to visit women who have breast cancer. The next project is a video to help destigmatize a breast cancer diagnosis.

As I drove with my crew along the red dirt, rough, and deeply rutted roads to the women’s homes, I couldn’t imagine how women in this area could cope with breast cancer, that is if they were able to be evaluated once they suspected they had an abnormality. Village Health Workers play a key role in connecting women to health centers. But evaluation and treatment is costly and require many trips to the Uganda Cancer Center in Kampala, a trip that can take two hours or more.   

In this area, many people rely on traditional healers. Szozzi, our soundperson, grew up in one of the villages we drove through, and we stopped to say a quick hello to his family. He told me that the healers have a placebo effect, using talk to soothe their patients even when the herbs they offer have little effect on their physical illness. Sometimes, Szozzi said, people lack the language to express how they feel at vulnerable points in their lives. How a question is asked can make all the difference. And sometimes, they believe that by giving voice to what they feel can make the illness worse.

On this morning in Naggalama, we pack our bags and prepare for the trip in the hospital van to the Entebbe airport. The doctors and I take a final walk around the hospital grounds. Much is unchanged since my last visit. The hospital now offers CAT scans, and there is a new building with private rooms.  We drop in on the maternity ward to say goodbye to Immy, a nurse and the spiritual leader of the palliative care team, who is caring for her new granddaughter born at the hospital the day we arrived.  

I leave with mixed feelings, overwhelmed by the needs of the population and grateful for the dedication of the health care workers. I will miss you, Naggalama.

For readers interested in the art of translation, I recommend Is That a Fish in Your Ear, Translation and the Meaning of Everything by David Bellos 

We explore two paintings, each rendering one of two different perspectives on tuberculosis (TB). We first take a close look at Alice Neel’s 1940 painting, T.B. Harlem, and focus on how it depicts the suffering and destruction TB caused, and reveals some of the social determinants of TB at the time. We then examine Thomas Lawrence’s 1794 painting, Portrait of Catherine Rebecca Grey, Lady Manners, and work through how it conveys the convergence of TB clinical manifestations with beauty ideals at the time.

Links:
Here are the links for the paintings we discuss:
T.B. Harlem, Alice Neel, 1940, oil on canvas
Portrait of Catherine Rebecca Grey, Lady Manners, Thomas Lawrence (1794), oil on canvas
The Sick Child, Edvard Munch, 1907, oil on canvas 

Background sources:
JAMA issue featuring cover with Alice Neel painting, T.B. Harlem, and William Barclay commentary.
Russell Teagarden’s According to the Arts blog piece on T.B. Harlem.
Hoban P. Alice Neel: The Art of Not Sitting Pretty. New York, St. Martin’s Press, 2010. Day, C. Consumptive Chic. London, Bloomsbury Visual Art; 2017, 189 pages.
Russell Teagarden’s According to the Arts blog piece on Carolyn Day’s book, Consumptive Chic.
Day C, Rauser A. Thomas Lawrence’s Consumptive Chic: Reinterpreting Lady Manners’s Hectic Flush in 1794, Eighteenth-Century Studies, vol. 49, no. 4 (2016) pp. 455–74. (Not open access)
Russell Teagarden’s According to the Arts blog pieces on The Sick Child, and on Munch’s approach to his painting, and podcast episode with Øystein Ustvedt, curator and Munch expert on Munch’s paintings rendering illness, suffering, and grief.
Here’s an image representative of the 1990s fashion trend known as “Heroin Chic” that we referred to during the podcast.

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

Feature image by Bia W. A.