I think of Susan Sontag when I’m in the bathroom. The mirror is high enough that I have to tiptoe to see my lower belly, which is where the cannula goes; the river mouth of my insulin pump, that has kept me alive for the wondrously long time of exactly three days. I need to change it now, to rip it out of my left side and shoot a new one into my right; every three days there’s a new cartridge, a new tube, a new cannula, a new spot in my abdomen that takes the hit. And when the needle makes its way into me and leaves a hole, and when the tube clicks and the slow stream of insulin is forced inside, I think of Susan. I think of Susan and her essay, “Illness as Metaphor”; I think of how she describes illness as “ the night-side of life, a more onerous citizenship ” . The kingdom of the well, the realm of the sick: a double passport situation. And sometimes, unfortunately, we’re obliged, at least for a while, to travel to the underworld and identify ourselves as citizens of that “other” place. Say, then: what if that other place came to you? What if you had to live there? It’s tricky to talk about chronicity in illness, because it’s not a generalized, shared human experience. Almost all of us can revel in our feelings of love, longing, loneliness; we can wonder at the natural world and share in our curiosity for it. We can whisper about our fear of death. But how can someone with rheumatoid arthritis explain to you what it is to live in constant, searing joint pain? My mother cannot clap: her hands, now deformed, cannot be straightened enough to be put together. I don’t know how that feels. Chronicity is tricky.

Every single waking moment of my life I’m thinking about my glucose levels. It’s an open tab on the browser of my brain, forever. It doesn’t rest. Even my sleep is thin, vaporous, like a white sheet caught in a breeze; my ears are primed and alert for the beeping of my glucose monitor, which would mean a drop in my sugar levels; I’d need to get up quickly and drink some orange juice or take a glucose pill. If I don’t, sleep can turn into a coma. I sleep with my insulin pump connected to my body; the tube is only 40 cm long, so there’s a lot of tugging and tangling around. The first thing I do when I wake up is inject insulin, because my metabolism, like everybody else’s, is waking up too, which includes secreting glucocorticoids: emphasis on gluco. This is why breakfast is generally not recommended for diabetics, especially the classic and insidious high-sugary ones, with juices and pancakes and cereal. Here comes chronicity again: I analyze every single thing I put in my mouth, because I need to know how many carbohydrates it has. I benefit immensely from planning my days, from knowing exactly what and when I’m eating; the when is crucial too. My insulin pump is programmed, by me and my endocrinologist, based on the time of day and the number of insulin units needed to compensate for the grams of carbohydrate I’m taking in . I need less insulin at noon, my ratio is higher in the evening. My body changes every hour, my mind does too; my emotional state will impact my glucose levels. Long hours of work mean more insulin. Have I woken up too early? More insulin. Am I stressed this week? That’s cortisol, that’s a glucocorticoid: more insulin. The inverse is true too: what if I’m suddenly scared or taken aback? My mother calls me, her pain is worse; my friend argues with me; my partner leaves me: panicking makes my glucose levels drop. An overthinking brain uses up too much fuel: cut the insulin, please. These ups and downs happen all the time, often on top of each other, simultaneously. That’s chronicity. Our organisms are in constant communication with our environment and our fellow human beings: if your organism happens to be chronically ill, you’re going to have to add that factor to absolutely everything.

That makes me think of Susan again. Am I a permanent resident of sick-city? Do I even have a “ healthy ” passport anymore? Can I cross the border? It doesn’t seem like I can. But then again, Susan, I’m also immediately suspicious of binary responses to questions: you’re either healthy or sick, sick for a time, then back to healthy? I like Lina Meruane’s approach better: she’s a brilliant Chilean author who also happens to be diabetic, and she talks about illness as “normality”. She turns the binary to a spectrum, and builds a huge space for all the little shades of grey to live in. There are degrees of illness, degrees of health. One traverses the spectrum constantly; one doesn’t just stand around a pole forever. I’m healthier than a lot of people I know, in a lot of ways. You can be emotionally healthier, for example. Would you rather a toxic, chronic marriage or an insulin pump? Both can kill you. Comparisons like this are silly, which is exactly my point; illness, health and human beings are extremely complex and varied, very difficult to categorize. There’s a lot of normality in my diabetes. If I look at it that way, it helps me communicate and connect with other people’s varying degrees of health and sickness. It opens up a space; it allows me to identify as something other than just “chronically ill”.

And then again, these are just words.

And then again, the way we speak to ourselves is important. The way we narrate the situations we’re in ends up changing them, and us. We attach meanings to reality, and reality is transformed accordingly. So hey, use your words but use them wisely.

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)
Web image generated by Gemini AI

What could it be like to have dementia? We can’t know. But the arts can imagine what people with dementia could be going through, and many works have been produced for that purpose. We feature a literary novel (The Wilderness), and a play (The Father) and its movie adaptation, offering sophisticated renderings of dementia for consideration. In the course of our conversation about these works and how they imagine dementia, we include: how an illusionist was part of the creative team in The Father to produce a sense of disorientation among audience members; how the metaphor of “the wilderness” is used in the novel and more broadly in various texts from the beginning of civilization; and how well the psalm used in the novel worked and builds on the place of psalms as texts for understanding how people react when threatened by significant life events.

Featured Content Sources:
• The Wilderness, by Samantha Harvey, Anchor Books, 2009.
• The Father (play), Florian Zeller playwright, Doug Hughes director, Christopher Hampton translator, NYC Broadway 2016 + tour sites, London West End 2015 + tour sites.
• The Father (movie), Florian Zeller screenwriter and director, Christopher Hampton translator, Trademark Films, release date US – 2/26/21, available through many streaming services. 

Links:
Russell Teagarden’s associated blog pieces at According to the Arts: 
• The Wilderness: the novel and literary excerpts compared with biomedical text
• The Father: the play and the movie

Russell Teagarden’s review of The Father (movie) in the journal, The Pharos.
Podcast episode 6, which features dementia related to Parkinson’s disease and expressed through the poetry (sonnets) of Micheal O’Siadhail is here.
Background information on development of Alzheimer’s disease as an obscure and rare disease to a broad categorization of dementia: 
Claudia Chaufan, Brooke Hollister, Jennifer Nazareno, Patrick Fox. Medical ideology as a double-edged sword: The politics of cure and care in the making of Alzheimer’s disease. Soc Sci Med 2012;74:788-795.
Patrick Fox.  From Senility to Alzheimer’s Disease: The Rise of the Alzheimer’s Disease Movement. The Milbank Quarterly 1989; 67:58-102.

Feature image by Margarida CSilva