Shame is the capacity to suffer under the gaze of the other. The other can be anyone, even oneself; we’re perfectly able to feel wounded by our own perceptions. There’s also a certain pride in shame—as proof of moral rectitude, of earnestness, or of competence. A patient learns that he will eventually go blind; it takes a year for him to confess this news to his family. He feels ashamed, and at the same time, he feels proud to suffer in silence. Shared emotion brings relief to the afflicted, yet it propagates his suffering; and by what right do I pass on my pain to my loved ones?

I think about this on a park bench, with a bottle of pineapple juice on one hand and no intention of calling my family. Not wanting to propagate my suffering is an excuse; if I die, my family’s pain will be far greater.

It’s the loser’s shame, then. If I pass out, I lose. Who am I if I can’t keep my blood sugar under control? You shouldn’t have eaten that bowl of ramen. It’s your responsibility. There’s this dog lying on a patch of grass in front of me, and he’s still yawning, and I desperately want to pet it. I want to tend to a garden. I haven’t been able to get out of the city yet; I’d love to go for a hike, to lose myself on some trail, to be part of a nature-driven epiphany that makes me understand how the world works and calms me down and makes me accepting of my illness, turns me into a placid, kind-eyed monk.

But I’m sitting on this bench and I can’t feel my legs, I’m sweating and panting and I can barely see. How am I supposed to play cool independent adventurer in the woods? I hear there are bears. I picture a bear yawning, and I hoist my two-liter bottle of juice to take another swig.

An illness is also a healing balm, an unguent—especially if it is socially accepted. It serves as fertile ground; it mothers your identity; it bears fruit and takes root. One benefits immensely from one’s illness; indeed, some are so eager to have one that they craft their own. They build slowly, with care. They decorate. They perform. To be ill is to be a victim, and that notion proves delightfully relaxing. Guilt is drawn out of you and replaced by a certain calmness that feels as protective as it feels alienating.

My diabetes is my greatest, most beloved excuse. It never fails. My diabetes removes me from the equation, cancels me out. My diabetes drops me inside a limbo, a liminal space. Why do I call it mine? It punishes and rewards me. It’s my biggest bet against shame; whenever the dreaded feeling bubbles up, I can use my glucose levels to run and hide, to defend myself, to set up a smokescreen.

It’s part of the intricate fabric of my body-mind, perhaps even of my soul. Yet there was a time, nebulous and distant, when I was not diabetic. I barely remember it. Was that truly me back then? Have I been two different people? I’d feel naked without my glucose monitor and my insulin pump. Every shift within my mind, every movement of my body, every lighting up of every neuron affects my illness, and my illness, in turn, influences every cell that thinks and feels. I cannot exist separately from my hypoglycemia.

Even worse so: will I ever be able to exist without shame? Shame precedes even my autoimmunity; shame has always been there. If everything’s interconnected, then I’m forced to admit that shame played a defining role in the development of my illness. It’s also playing a role in my losing consciousness; it gives and takes away.

I drink and stare at the dog. I think I’d like him to be the last thing I see. It’s a good final image. But then… what if I’m exaggerating? Maybe this is nothing and I’m making a complete fool of myself for believing I’m about to drop dead and miss out on all the beauty of life—oh, the tragedy!—and maybe this yawning dog is just a dog and not my last impression of the world and the epitome of tender simplicity.

Those who are ashamed are very good at being victims, but they will also try their best to be caregivers. Helping another wounded soul proves I’m not quite so miserable myself. Service to others is a weapon I can wield; to fight against the meaninglessness of my existence and to show I have a right to be here. My diabetes grants me the people’s pity, and unlocks a new perspective, that of the chronically ill: a vantage point to which the majority have no access. Illness touches us all, just as life does; yet autoimmunity and degenerative ailments, inevitable and relentless, are not, fortunately, a shared experience for our species. This means that there are certain things, certain feelings or ways of coping, that only us, the permanently sick, can understand. Cold comfort, I know. But to carry the bodily wisdom of a chronic ailment, to feel it, deeply and daily, carving and scarring, should also make me capable of great empathy, of great compassion.

It does not. I’d be a wonderful caregiver if I wasn’t wholly corrupted by the urge, the desperate desire to exist solely within the gaze of others. The image in their minds is more powerful than the present moment in which I live, and stronger than the reality I could build for myself. Shame is the guiding factor in all this; it turns real people into members of an audience, and one cannot fail in front of an audience. One cannot show oneself, one needs to win approval. To really care for someone includes, necessarily, that you be vulnerable and open, genuine and honest. If what I want is for others to perceive me as a caregiver, then I’ll never actually become one.

Once again, the problem lies in my inability to step outside myself.

Web image by Riley Revell 

Narrative

Isles

José Luis Marín Aznárez 05.11.26

Illness, emotion, story, and the interconnectedness of it all; a meditation on a park bench, on the verge of death

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

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

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

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

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

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

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

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

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

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

I remember having done that several times.

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

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

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

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

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

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

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

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

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

Web image from Wiki Commons.

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

Apollo On Call

In this episode of Apollo on Call, Dave is joined by Luki Danukarjanto to discuss Atul Gawande’s book on end-of-life care, as well as relate it to their aging parents and their own experience getting older. They also examine the medical perspective to the situation is well-being or survival the goal of end-of-life care?

Check out Dave’s Substack for more! https://davidmhsu.substack.com/

Web image by Age Cymru 

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The collection opens with a poem, “Dedication” (p.1), dedicating the poems that follow to those “dear friends” who share, and so understand, the sufferings of ongoing illness. The implication is that healthy people cannot, yet, truly enter that world and, in fact, “fear” those who must live there. Yet Silver’s poems are a way into that universe. Tender and fierce, the poems in this collection seem to arise fully formed from the deepest part of Silver’s existence. The poems in section I present us with the harsh realities of illness and the anticipation of loss. In the acknowledgements, (p.72), the author notes that the poems in this section are “in honor of my sisters with inflammatory and advanced breast cancer.” In “Advent, First Frost,” she likens that “feathered prophecy” to “a bowl of frozen tears” (p.6) and in “Stage IV,” she writes that she is “taboo, now,” that she and others use words that once embarrassed them, “courage, prayer, miracle.” Even so, she is aware that “Our passports have been stamped– / our wrists and collar bones have been marked” (p.7). In a lovely prose poem on page 11, she writes in memory of her friend, Susan: “Ulysses will sail the storms till he dies. And so, my dear ones, will we” (p.11), combining, as she often does, the reality of approaching death with hope, dignity, and strength. In “Leaving the Hospital” (p.23) and “On a Line from Virginia Woolf’s Diary,” Silver celebrates the return, even if temporary, to life: “And the day takes my body back simply, / the way a mother dresses her child” (p.14). For me, the most moving poem in this section is the title poem, “I Watched You Disappear” (p. 22-23). It is a litany of regret, loss, anger, and pain, related not in poetic images but in plain and deeply human language: “I hate spring, its prettiness. / Your heart kept beating. Why didn’t it just stop?” 

Section II consists of seven, short one-stanza poems based on images from Grimms’ fairy tales. It seems that the first two lines of each poem serve as metaphorical statements about the realities of advanced breast cancer. “Owl Maiden” begins “No transformation’s instant. / Her hair fell out first, replaced by quills” (p.29). “Strawberries in Snow” begins “Belief comes easily to the ill. / Miracles fall from their lips like gems” (p.31). And “The Flowered Skull” offers these opening lines: “The magician finds them, young or old, / mothers, maidens–to him–no matter–” (p.34). The final poem in this section is a tale told to her son, Noah. In “The Hazel Tree,” Silver is the mother who “died and grew into a tree,” “each nut a word she’d grown to tell her son / now that her speaking human voice was gone” (p.35).  

In Section III, she turns, as she did in her first collection, to poems about her family. She visits again the (actual) doors of her life (“Doors” p.39), expresses regret at being impatient with her son, “Ubi Caritas Deus Ibi Est” (p.41), and in other poems examines moments of her family life, especially those shared with her son, father, sister, and husband. This section’s poems rarely mention illness, yet as they share family stories, they hint at the inevitability of loss. The final poem in this section, “Sea Glass,” ends with lines that could be applied as well to the way poems might be born from the wages of a life: “Something salvaged, sunlit, / gem-like. Something saved / from the grinding into grit” (p.55).  

Section IV, like section II, contains only seven poems, three of them commentaries on paintings and, through those commentaries, observations on illness and suffering as well. “Late Renoir” speaks of how the artist painted to “smudge away doubt” and to submerge “the mutilations of war, his dead wife, / the black he banished from his palette” (p.59). The long poem “Valentine Gode-Darel (1873-1915)” is a reflection on the five paintings by Ferdinand Hodler that captured his lover’s sickness, decline, and death (p.60). “Portraits in the Country,” (page 63), offers a glimpse into the poet’s resignation and acceptance of death, a mindset supported by her faith in both the human and the holy: “But I will not rush to put down my sash. / Instead, I will turn the leaf of my book. See with what gentle gravity God / lets it hover, in balance, then fall to its side.” The book’s last poem, “The Firebird,” suggests that words, especially poems, might hold truths that sound louder than the approach of death: “The bell ringing in your throat will drown / out the train’s slow grieving” (p.67). 

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. For me, dealing with the reality of an aggressive breast cancer afflicting someone I love, these poems provide a window into an experience I can only observe from a distance, even if that distance is only an embrace away. These poems provide a portal into the emotions, fears, regrets, and pleas that might be hiding behind a patient’s or a loved one’s exterior of cheerful optimism and determination. We can’t walk the path that a woman with advanced breast cancer is traveling. But these poems help us be companions on the way. 

Miscellaneous 
“Strawberries in Snow” was first published in the Bellevue Literary Review (V12N1).  

Publisher Louisiana State University Press 
Place Published Baton Rouge 
Edition 2014 
Page Count 73 

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

Commonly argued among readers is whether fiction or nonfiction brings the most value to understanding any particular issue. These arguments sometimes end with one interlocutor saying, “I only read nonfiction,” and the other saying, “I only read fiction.” Choosing either one alone, however, can deprive readers of valuable knowledge and perspectives that only both together can provide. Such is the case when reading Laura Spinny’s history, Pale Rider: The Spanish Flu of 1918 and How it Changed the World, and Kathryn Anne Porter’s “short novel”—as she insisted it be called—Pale Horse, Pale Rider. Spinny researches the effects the pandemic had on exposed populations and Porter conjures the effects it had on infected individuals.

The titles for both Spiney’s book and Porter’s story draw from the the Four Horsemen of the Apocalypse in the Book of Revelation (6:8) in the New Testament, and one of the horsemen in particular.

And I looked, and behold, a pale horse! And its rider’s name was Death, and Hades followed him. And they were given authority over a fourth of the earth, to kill with sword and with famine and with pestilence and by wild beasts of the earth.

Both books speak of death, not as the natural course of human life, but resulting from an apocalypse of a biblical scale, of a vengeful god, and of a plague in form. Spinney applies the apocalypse metaphor to peoples and Porter to persons.  

Spinny’s account focuses on how the 1918 flu pandemic altered history.

The flu resculpted human populations more radically than anything since the Black Death. It influenced the course of the First World War and, arguably, contributed to the Second. It pushed India closer to independence, South Africa to Apartheid, and Switzerland to the brink of civil war. (p. 8)

She also describes how national public health and global health organizations reorganized and generated momentum towards today’s more sophisticated agencies. She suggests further that the flu pandemic affected literature and art as well, and speculates about why it’s not remembered in any way like the two world wars of the same century. The bulk of the book, though, describes what happened to populations, and how this pandemic could be considered an apocalypse.

The number of dead could have been as high as 100 million—a number so big and so round that it seems to glide past any notion of human suffering without even snagging on it. It’s not possible to imagine the mystery contained within that train of zeroes. All we can do is compare it to other trains of zeroes—notably, the death tolls of the First and Second World Wars—and by reducing the problem to one of maths, conclude that it might have been the greatest demographic disaster of the twentieth century, possibly of any century.(p. 171)

This is where Porter’s literary contribution to capturing “any notion of human suffering” comes in—the personal apocalypse. Based to a degree on her own experience surviving a case of the 1918 flu, her short novel follows Miranda, a reporter for a local newspaper in Denver, Colorado, during a time when she is early in a courtship with Adam, a soldier on leave from camp but who is soon to be shipped overseas to the battlegrounds of WWI. Together they start to see the flu engulf the area.

“I wonder,” said Miranda. “How did you manage to get an extension of leave?”
“They just gave it,” said Adam, for no reason. The men are dying like flies out   there, anyway. This funny new disease. Simply knocks you into a cocked hat.”
“It seems to be a plague,” said Miranda, “something out of the Middle Ages. Did you ever see so many funerals, ever?” (p. 281)

Then, the flu engulfs Miranda, and Porter helps us imagine what a personal apocalypse could be like when an individual succumbs to it. She imagines the Pale Rider pulling her away from her physical moorings on Earth.

I must give up, I can’t hold out any longer. There was only that pain, only that room, and only Adam. There were no longer any multiple planes of living, no tough filaments of memory and hope pulling taut backwards and forwards holding her upright between them. There was only this one moment and it was a dream of time, and Adam’s face, very near hers, eyes still and intent, was a shadow, and there was to be nothing more… (p. 304)

Eventually the Pale Rider tries to pull her away from even any vestige of her corporeal being itself, and were it for a mere particle of life force would have done just that.

Silenced she sank easily through deeps under deeps of darkness until she lay like a stone at the farthest bottom of life, knowing herself to be blind, deaf, speechless, no longer aware of the members of her own body, entirely withdrawn from all human concerns, yet alive with a peculiar lucidity and coherence; all notions of the mind, the reasonable inquiries of doubt, all ties of blood and the desires of the heart, dissolved and fell away from her, and there remained of her only a minute fiercely burning particle of being that knew itself alone, that relied upon nothing beyond itself for its strength; not susceptible to any appeal or inducement, being itself composed entirely of one single motive, the stubborn will to live. This fiery motionless particle set itself unaided to resist destruction, to survive and to be in its own madness of being, motiveless and planes beyond the one essential end. Trust me, the hard unwinking angry point of light said. Trust me. I stay. (p. 311)

Many published histories of the 1918 flu pandemic concentrate on the devastation visited upon nations and populations. Most stop at the individual, because historians rely on tangible and verifiable facts, but literary fiction writers can turn personal narratives into stories that render pictures of what individuals could experience with particular illnesses. These two books referencing Pale Horse, Pale Rider in their titles—one a nonfiction history and the other a literary fiction—work well in combination to capture the experiences and consequences of this flu on both populations and individuals. Further, these two books show why fiction and nonfiction accounts of particular subjects should not be considered a choice, but rather as opportunities to get fuller accounts of diseases on populations and individuals.

Revelation 6:8, English Standard Version (ESV). © 2001 by Crossway; text edition: 2025.
‘Pale Horse, Pale Rider’ In The Collected Stories of Katherine Anne Porter, Harvest, 1979.
Spinney L. Pale Rider: The Spanish Flu of 1918 and How it Changed the World. New York; Public Affairs, 2017)
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In this poem of high irony, 21 stanzas of couplets brilliantly spin out stereotypes of Indigenous people promulgated by white American culture. Among the stereotypes that Alexie develops: the tragic Indian; Indian women as sexual objects for white men; Indian men secretly desirable to white women; Indians as violent, alcoholic, childlike, mystical,” and members of a “horse culture.” But in addition, Alexie emphasizes how American whites have co-opted Indian culture: “white people must carry an Indian deep inside themselves” until finally, “all of the white people will be Indians and all of the Indians will be ghosts.” The poem is a painful reminder of how the United States has at one and the same time decimated indigenous people and their culture while exploiting those people and that culture for its own gain. It is a commentary on stereotyping, loss of identity, and loss of a people.

Sherman Alexie is a poet, novelist, short story writer, essayist, and film writer. He is a Spokane/Coeur d’Alene Indigenous person and grew up on a reservation in Washington state. His work focuses on relationships between Indigenous people and white Americans and on life within a white power structure. Alexie’s writing is consistently humorous and ironic.

How to Write the Great American Indian Novel
Sherman Alexie
https://fallsapart.com

Source The Summer of Black Widows, pp. 94-95
Publisher Hanging Loose Press
Edition 1996
Place Published Brooklyn, New York
Alternate Source Native American Songs and Poems, pp. 28-29
Alternate Publisher Dover Thrift Editions
Alternate Edition 1996
Alternate Editors Brian Swann
Place Published New York

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database (Litmed).
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When he arrives, he finds that the hospital is an expropriated village church overrun by rats and ravaged by typhus, and he is the only physician. The hospital is run by a nun, Sister Margarete, assisted only by orderlies, and the patient load runs the gamut from fractures and gunshot wounds to gangrenous legs and massive head trauma. The front is only a few kilometers away, and the wounded arrive continuously; the quiet and formal Sister Margarete confidently and unobtrusively guides him through rounds, surgeries, and battlefield medicine. Lucius is initially wary of her, perhaps a bit awed by her, and ultimately falls in love with her.  

The transforming event is the arrival of the “winter soldier,” Jozsef Horvath, brought in from the snow mute and shell-shocked, but with no visible wounds. For Lucius, who is fascinated by diseases of the brain and mind, this patient presents a tremendous challenge. Lucius is sure that Horvath has “war neurosis,” what the British physicians of the time were calling shell shock and what we today would call PTSD, and he is determined to understand and heal him. Lucius and Margarete make slow progress with their patient, but his attempts to care for the patient have unintended effects, and Lucius must then deal with the consequences of his actions.

The war, and the hospital routine, go on. One day, while Lucius and Margarete are relaxing in the woods, Margarete runs off; Lucius returns to the village, but Margarete is not there. While Lucius and the staff search for her, Lucius gets lost; he stumbles onto a battlefield and is dragooned into service with a regiment of the Austrian infantry. He ultimately escapes and tries to make his way back to the field hospital, and to Margarete, but Lemnowice has fallen to the Russians. The hospital has been evacuated—and Margarete has disappeared.  Lucius’ search for her will take him across the war-torn remnant of the Empire.

The Winter Soldier is a war story, a doctor story, and a romance, and it also poses a wrenching question of medical ethics. This is a lot to ask of any novel, but Mason pulls it off with aplomb. The writing is lyrical; the author’s descriptions of the variation of the seasons in the Carpathian forests are poetic and beautifully detailed, and his characterizations are finely drawn. We can not only clearly see, but also feel that we know, these people, not only the major figures of the doctor and the nurse, but also the orderlies, the Austrian soldiers, Lucius’ somewhat bemused Professor Zimmer, and Lucius’ parents (who are marvels of characterization: the retired military officer father who lives on past glory and cannot see his son for who he is, and the controlling, clever, acid-tongued society grande dame mother who can only see her son for who she thinks he should be). Lucius and Margarete feel real, and their interaction feels real…and complicated. The historical setting comes alive with detail, and the reader truly feels that they are in that place at that time, whether at a formal dinner in a Viennese mansion or treating war casualties in a Galician backwater. And the medical details are correct, not just the medical terms but even the way in which they are used in dialogue, which is not surprising, as Mason is a physician; it isn’t always easy to get this right, but Mason does.  

But the true heart of the medical story here is the ethical quandary in which Lucius finds himself—the complex nature of the doctor-patient relationship, the motivations which drive it, and the decisions we make. Although this takes up a relatively short page count, its repercussions continue throughout the novel.

The novel has a particular, though minor, resonance for the time of COVID-19 (though it was released two years before the pandemic occurred). The action of the novel is set in motion when, due to a war-induced doctor shortage, medical schools decided to allow upper-level students like Lucius to graduate early and become doctors, and then immediately posted them, often with little practical experience, to field hospitals near the front lines.  Several American medical schools took a superficially similar action in Spring 2020 when doctors were desperately needed to help staff hospital units during the coronavirus pandemic, although this only applied to fourth-years who were but a few months short of graduation and would have already had the clinical experience which Lucius lacked. So while the situations aren’t entirely analogous, the concept of students opting into a trial by fire is.

The Winter Soldier can be appreciated for its historical perspective, its story of human relationships, the ethical dilemma it poses, and the beauty of its prose. Or enjoyed for what it is—a great read.

The Winter Soldier
Daniel Mason
New York, Little Brown & Co., 2018; 318 pp.

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

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

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

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

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

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

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database. 
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As The Ghost Road begins, Prior has been cured of shell shock and is preparing to return to the front in France. Rivers takes care of his patients and his invalid sister, amid memories of his experience ten years earlier on an anthropological expedition to Melanesia (Eddystone Island). He befriended Nijiru, the local priest-healer who took Rivers on his rounds to see sick villagers and also to the island’s sacred Place of the Skulls.

Rivers entertains very un-British thoughts about the morality of these headhunting people, and about the power of symbolic healing. As these thoughts intrude upon his consciousness, Rivers is himself in the process of curing by suggestion a soldier with hysterical paralysis. Meanwhile, Billy Prior returns to the front. It is the autumn of 1918 and the last inhuman spasms of the war are in progress. In a futile battle that takes place a few days before the Armistice, Billy and his friend Wilfred Owen are killed.

To me The Ghost Road, which won the Booker Prize in 1995, is the most gripping and fastest paced of Pat Barker’s trilogy. The first two novels are Regeneration (1991) and The Eye in the Door (1993). As W. H. R. Rivers reflects on the culture of death on Eddystone Island, World War I, a culmination of the culture of death in Europe, grinds to a close, taking with it the poet Wilfred Owen. Of course, the characters in The Ghost Road are unaware of the new heights (or depths) that the culture of death will attain later in the 20th Century.

The Ghost Road
Pat Barker
Dutton, 1995
New York, 256 pages

Web image by  Claudio Carrozzo 

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