The Strange Terrain of Chronic Illness
The Strange Terrain of Chronic Illness
Jack Kubinec
On Ross Douthat, Piranesi & Illness
I was calling my mother to say I’d tested positive for Covid when I spotted a black speck on my thigh. Prodding with my finger, I realized a deer tick bit me. I pried the insect off with tweezers and set the tick on my desk.
In the weeks before my Covid-and-tick combination, I had been reading up on chronic illness after realizing several of my favorite authors suffered from chronic diseases. It was a mental exercise I was happily detached from, using my research as small talk fodder.
“Did you know Laura Hillenbrand couldn’t get out of bed for like a decade because of Chronic Fatigue?”
“Like the Unbroken writer?”
“Yeah, crazy right?”
Staring down at the deer tick and Covid antigen test in front of me, I began to dread developing Lyme disease or Long Covid. I offered a frantic prayer to fend off the diseases, hoping God hadn’t piqued my interest in chronic illness to prepare me for the real thing.
*
Illness usually has a predictable trajectory—pain, diagnosis, treatment, recovery. Modern medicine has built a floor beneath this cycle, giving patients a foundation to plant their feet on. When illnesses confound our medical system and evade treatments, a hole is blasted in the floor.
Chronic Lyme disease plunges Ross Douthat through the floor of modern medicine in his memoir The Deep Places. Beneath the floor, “you’re groping with your hands, feeling weird shapes in the half darkness, looking for the ladders but not sure whether they take you back up to normalcy or somewhere else entirely.” With no official diagnosis and no proven cure for his illness, Douthat spends much of his memoir in medical darkness.
Long Covid is the latest sickness to defy the diagnosis-to-cure pipeline. Sufferers will not find answers to their pain in peer-reviewed journals, but two bestselling authors with vastly different politics and approaches recently took the topic on—Douthat in his memoir and Susanna Clarke in her novel Piranesi. Both authors suffer from chronic illnesses, and their work gives shape to diseases that seem formless to much of the public.
Ross Douthat was a winner of the meritocracy—a Harvard graduate and New York Times columnist—and The Deep Places begins with the author selling his D.C. beltway home and fulfilling a lifelong dream of moving back home to Connecticut.
Set against the backdrop of his pastoral Connecticut home, Douthat spends most of his memoir racked by an illness with unpredictable symptoms and no traceable presence in his body. When meeting with doctors, Douthat learned to code switch—playing the reasonable, educated patient who knows his symptoms sound crazy but could possibly be helped by a round of antibiotics.
The first half of the memoir reads like a horror novel. Post-pandemic readers are used to a narrative of illness where some patients recover and others tragically don’t. There is a comfort in the familiarity of this process. The trajectory of Douthat’s sickness doesn’t look like an arc so much as a smudgy blob.
Increasing numbers of Americans will be familiar with Douthat’s experience of indefinite sickness. Studies estimate 10-30% of Covid-19 patients will wind up afflicted by Long Covid, a Frankenstein’s monster of a disease with symptoms ranging from fatigue to changing menstrual cycles to depression and anxiety.
Chronic illness is made worse by disbelief from doctors and friends. Douthat described the chronic sufferer stereotype: “attention seekers, self-dramatizers, menopausal women scripting more melodramatic versions of their own ordinary lives.”
Long Covid sufferers attract similar stigmatization in some circles. Early New York City Covid casualties were shoved into refrigerated trucks. The effects of Long Covid cannot be so viscerally seen. To some, Long Covid represents the media’s latest attempt to extend pandemic fears.
Gaslighting aside, chronic illnesses cause pain that is very real. Douthat describes chronic pain ebbing through different parts of the body—a wave of pain in the shoulder gives way to heartburn which becomes a migraine and so on. He sees the body not as a “machine” to be fixed with medical tinkering but a “landscape in which many things take root.”
Susanna Clarke creates a world exploring the chronically ill body as a natural landscape in Piranesi. The 2020 bestseller opens with the novel’s titular protagonist clutching a statue in a large hall as waves pour in from every direction.
“I thought that I was going to die; or else that I would be swept away to Unknown Halls,” Piranesi laments, but “just as suddenly as it began, it was over.” Chronic pain also comes in overwhelming waves before unpredictably shifting.
Laura Miller chronicled for The New Yorker how Clarke’s novel was influenced by her own sickness. Clarke published a promising first novel in 2004 before she began battling Chronic Fatigue Syndrome and spent much of the past fifteen years overcome by tiredness and brain fog before finally publishing Piranesi in 2020. “Her illness … cast her into a fallen version of Piranesi’s contented seclusion.”
From the fog of illness, Clarke wrote Piranesi, a trim fantasy novel whose protagonist lives in a mystical series of statue-lined rooms he calls “The House.” Piranesi spends the thrilling back half of the novel unraveling the sinister mystery that brought him to The House.
Piranesi is not a novel for the impatient. The protagonist spends the first hundred-plus pages of the book exploring The House and mapping its contents. But it is Piranesi’s explorations more than his sleuthing that make the novel a must-read—he points out beauty in even unremarkable details about The House, like a parallel universe’s Annie Dillard.
The book brims with connections to chronic illness. Piranesi spends much of his time wandering through a difficult-to-describe landscape. The House is empty save for an occasional visitor named The Other, so Piranesi is usually alone. When he meets new people, they regard him with pity or contempt. Like a patient who just won’t get better, Piranesi is frustratingly slow to solve the book’s mystery.
Chronic illness tosses people into parallel worlds they can’t escape—shedding weight and friends, sufferers experience interior worlds of pain that even the most empathetic cannot enter. Piranesi is trapped in The House but doesn’t mind. “The Beauty of the House is immeasurable; its Kindness infinite” is the book’s central refrain.
Clarke feels similarly about CFS. “Illness becomes a sort of protection against the world after a while,” she told The New Yorker.
Piranesi has a low view of expert opinion. Academics find their way to Piranesi’s world but cannot see the house as anything but a “means to an end.” Scientific authority is arguably the book’s antagonist. Piranesi resents academics’ (wildly wrong) ruminations on how his world works.
Douthat battled scientific authority in his own world of chronic pain. Mainstream experts promised “that modern medicine knows what it’s doing, [and] that anyone too far outside the system is either seduced by pseudoscience or culpably exploiting people.” Doctor after doctor insisted that Douthat’s pain would soon subside, or he should see a psychologist.
The pain failed to subside and therapists found nothing wrong, so Douthat turned to internet forums and crack science to treat himself. Douthat believes he found the best course of action for treating chronic illness—tossing medical consensus out the window, throwing any and every treatment against the wall, and seeing what sticks.
Clarke spoke about her own use of alternative treatments with The New Yorker: ‘“You’ll see people saying, ‘Oh, you shouldn’t go off on these alternative-medicine treatments. You should stick to proper science.’” But such critics failed to grasp that “nobody was doing the science—it was only the alternative people who were offering anything at all.”’
Public health experts spent much of the past two years urging Americans to “follow the science,” but chronic illness blows a hole in that aphorism. Sometimes bodies function in indecipherable ways, and the light of science becomes too dim for following. How do you follow the science when Science says your illness doesn’t exist?
You climb on a Rife machine, as Douthat does, or dabble in homeopathy, as Clarke does, or convince yourself the academics are wrong and your experiences are meaningful, like Piranesi does. When people get sick and doctors can’t help, it makes sense they would seek treatments that doctors don’t prescribe. That is why Long Covid patients are skipping breakfast and popping Zinc pills.
*
The air conditioner whirred as I sat waiting for the bullseye rash to show or brain fog to move in. I pictured myself like Ross Douthat — racked by pain outside of my doctor’s reach — and I realized how powerless I was. Medicine can create a false security in our understanding of our health. When something goes wrong with our bodies, a doctor diagnoses and fixes the problem.
My lungs and leg recovered without lingering symptoms. Statistically, my odds of chronic illness were low enough that my momentary anxiety seemed hysterical. But chronic disease is uniquely terrifying because it shatters our illusion of control.
There are no magical pills to thwart chronic diseases. They work unpredictably, often untraceably, and beyond rational explanation.
*
For Douthat, shapeless illness makes religious belief “feel essential to your survival, no matter how much you may doubt God’s goodness.” Douthat never unwinds the question of how a good God can allow suffering in The Deep Places, but he makes a pretty compelling case for why sufferers would turn to providence.
Douthat’s early illness followed no narrative. The writer suffered through formless days filled with unchanging pain. But as a Christian, Douthat could situate himself in a much larger story than his own, a story where God promises redemption, the mending of broken things. The story’s protagonist is no stranger to pain.
He was despised and rejected by mankind,
a man of suffering, and familiar with pain.
Clarke is also a Christian. In her novel, Piranesi imparts his theology of suffering after he unravels a painful thread of the book’s mystery and questions why The House allows him to suffer.
“It does not matter that you do not understand the reason. You are the Beloved Child of the House. Be comforted.
And I am comforted.”
Jack Kubinec
Writer & Student
Jack is the Editor in Chief of Cornell Claritas, an opinion columnist for the Cornell Daily Sun, and a crypto reporter at Blockworks. You can find him on Twitter.
Photography by Esteban Chinchilla