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Harrison Scott Key| Longreads | October 3, 2023 | 14 minutes (4,055 words)

In 2014, the National Rail Passenger Corporation, best known as Amtrak, pulled off one of the epic marketing coups of U.S. railroad history—granted, there haven’t been many of late—when they announced the Amtrak Residency for Writers, where they would send 24 writers on cross-country trips, meals and beds gratis, to write the Great American Novel. The announcement of this perfect marriage of two beloved dinosaurs—trains and publishing!—set Twitter aflame, like hearing Panasonic and Oldsmobile had teamed up to launch a new line of gas-powered fax machines. 

Around the same time, evil scientist Elon Musk announced his plan for the Hyperloop, a high-speed transport system where humans would be jammed into cans like Vienna sausages and shipped across the nation via pneumatic mail; meanwhile, Astronerd Jeff Bezos and his Amazonian Savings Monster continued to strip-mine the foundations of the literary ecosystem. So this little PR stunt by Amtrak, the desktop PC of the global travel industry, a national embarrassment to hide from your European friends, smelled of quiet revolution. Together, trains and writers would lay siege to the behemoth of late-stage capitalism. 

Attention was paid. MacDowell, the celebrated New Hampshire residency, receives 4,000 applications a year. Amtrak received 16,000, including mine. Having just landed my first book deal, I was in urgent need of somewhere quiet to finish the manuscript, and when I think “quiet,” I think “trains.”

I knew just which one I wanted to ride. I was born hardly a mile from Central Station in Memphis, Tennessee, midpoint for that fabled locomotive of song, Amtrak’s City of New Orleans. As a boy, this train called me awake at my grandmother’s house in Greenwood, Mississippi, its sonorous horn summoning me to a day of biscuits and books. As a young man, the same train clattered over a derelict coffee house in Jackson, Mississippi, where I loafed on allergenic chesterfields and first dreamed my name onto a title page. As a grad student in Illinois, attempting to finish at least one story that would not induce suicidal ideation, I watched the City of New Orleans roll past the windows of another coffee shop, slow and steady. How perfect to ride this train while actually finishing a manuscript. I applied with gusto.

But alas, Amtrak did not pick me, and I was forced to finish that book at a residency in the Hamptons, like a peasant. Two years later, I applied once again, but the Amtrak Residency for Writers, that hope of insolvent rail barons and writers everywhere, had already disappeared without a trace. Subsequent books I wrote in my driveway in Savannah, Georgia, tortured by the sound of other Amtrak trains—the Silver Star or the Palmetto—while the City of New Orleans was out there somewhere, heaving its way through natal lands.

And so, earlier this year, with the idea for a TV pilot rattling through my brain, I decided it was time, finally, to ride the train that ran through the landscape of my young imagination. As an American author whose books command upwards of $3.09 on eBay, I could fund my own residency.

“Where will you sleep?” my wife asked when I announced this plan. 

“I have no idea.”

“Will you poop on the train?” she asked, troubled at the thought.

“I assume so, in the designated areas.”

“It doesn’t seem safe.” 

I’ve wandered solo across three continents, from Cannes to Kowloon, but maybe she was right. When I travel solo, I can lose my grip a little—neglecting hygiene and ordering Caesar salads nonstop. Generally spiraling. So I texted Mark, my oldest friend.

Mark and I met in ninth grade in Star, Mississippi, and have been best friends now for nearly 35 years, though we’re opposites in almost every way. I come from a tortured nuclear family of farm chores and football, while Mark was a peripatetic child of divorce, shipped from Mississippi to California and back again, an underage drinker lost in books and skipping school. I once discovered in his bedroom a waterlogged library copy of Plutarch’s Lives, three years overdue.

“You should return this,” I said.

“What are they going to do, arrest me?” he said.

His insouciance toward authority shocked my young soul. Senior year, I broke into the guidance counselor’s office and forged his school records, just so he could graduate. 

“Thanks, I guess,” he said. He had the highest IQ in school.

After graduation, I took the academic track across six different states, covering my steamer trunk in diplomas and achievement, while Mark lit out for the horizon on the City of Neverland to guide raft trips, work in secluded mountain resorts, and play his guitar up and down river gorges for women who couldn’t easily run away, due to the gorges. 

I wanted to write stories. Mark wanted to live them. I’ve never stopped seeking achievement and he’s never stopped seeking places to go, the Peter Pan to my Wendy. He even married a flight attendant, mostly for love, but also for the free plane tickets that allow him to join me for book festivals, readings, talks, and conferences across the nation. If I’ve got a king mattress booked, paid for by someone else, Mark’s there. He flies standby and always shows.

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Normally when we travel, I spend much of my free time back in the room, writing, while Mark wanders the city. A few years ago, though, I began to notice that whenever I got stuck on a story, Mark always had the answer, a suggestion that broke the block and carried me through. He had become a kind of muse, a talisman. I write better when he’s around, so much so that we’ve even collaborated on a script or two over the years, with Mark shouting ideas from a jacuzzi while I type. Maybe we could write something together on this train.

“Congratulations,” I texted Mark. “You’ve just been selected for the Amtrak Residency for Writers. Also, you owe me $350.”

“I don’t think I’ve ever ridden a train,” he said.

“It’ll be an adventure.”

“What’s the food like?” 

The only thing Mark loves more than a trip is cheap, delicious grub—hamburgers most of all—and his grail is the burger at Port of Call, a tiny Polynesian-themed food chuck wagon on Esplanade Avenue in New Orleans. Mark’s a wayfaring evangelist in the Church of Saturated Fat, confronting heterodox servers about the origins of their meat and fearlessly contesting Yelp reviews that reek of heresy (“Best burger in town my ass!”). To paraphrase a meme making the rounds: the energy Taylor Swift fans have for her music, Mark has for Hebrew National chili dogs. 

“We can start with pizza in Chicago and end with a burger in New Orleans,” I said.

“Can we bring our own food?”

“This is Amtrak. We can probably bring our own livestock.”

A month later, in June, we stand in the breezy colonnade of Chicago’s Union Station, a neoclassical block of limestone that makes most train stations look like a garden shed. 

“This place is amazing,” I say, fondling a frigid column for inspiration.

“It’s so cold,” Mark says.

The most interesting part of this particular summer’s day in Chicago is that it’s actually winter. I fully expect to see narwhals nosing bergs in the river below us. We’re warmed only by the two Giordano’s pizzas we now carry, so heavy that they, too, seem fashioned of limestone. We picked them up minutes ago, along with six packs of smokes, two bottles of wine, assorted chip selections, candy, gum, and a case of beer for hydration. 

Mark is almost 50 and I’m not far behind, but that’s the thing about traveling with old friends. You become young idiots again. Soon, we duck inside and behold Union Station’s palatial interior, two middle-aged Pinocchios inside a Gilded Age whale, and make our way to the Metropolitan Lounge, where Mark raids the complimentary snacks, adding Sun Chips and Sprites to our growing pile of foodstuffs. 

“A writer cannot have too many powdered donuts,” he says, handing me a sleeve.

When the call comes, we heave our provisions into a rumbling underground cavern, where the City of New Orleans awaits us. Up close, she’s a mammoth prehistoric beast with a head nearly two stories high. We breathe in the heady fumes. Around the world, 75% of rail transport is sustainably electrified, but here on Amtrak, we burn old dinosaur bones. The fragrance of discovery! Diesel vapors loosen the circuits in my brain, preparing my mind for miles of collaborative writing and toxic hallucination. 

“Remind me, what are we going to write?” Mark asks.

“I have a hundred bad pilot ideas,” I say. “We’ll get settled and hash it out.”

“I believe in you,” he says, though I can see he’s talking to the pizza.

A woman in a fun conductor’s cap studies our tickets and with a jerk of the neck sends us aboard the sleeper, whereupon we discover a hobbit-sized vault called a “roomette,” where we, two full-sized creatures of the race of men, will have to eat, sleep, write, and breathe in fraternal disharmony for a thousand miles. I fall forward into my seat as Mark falls into his, for there is nowhere else to fall. Our kneecaps greet one another with a holy kiss and soon we creep backward into Chicago dusk. The seats may seem small, but on Delta, they’d be business class.

“So, the TV show,” I say, but I’m interrupted by Ricky, our car captain. 

“Dinner time!” says Ricky, handing us two menus.

“We have pizza,” I say.

“I’ll have the braised ribs in a cabernet reduction,” says Mark.

I cave, opting for the Thai red curry with “plant-based meatballs.”

While waiting for dinner to arrive, we have dinner. The pizzas defy Mark’s highest expectations. We crack open beers and make merry. Ricky soon returns with two additional beers and a pair of brown paper tote bags, marked “Beef” and “Vegan.” Mark winces through his salty entrée, while my plant-based meatballs taste like neither meat nor plants, but a secret third flavor profile you simply cannot find on faster, better trains.

“Okay, the script,” Mark says, as we scoot silently through the heartland. I begin to conjure possible scenes when Ricky interrupts again to announce that breakfast is at six.

“Would you like to eat here or take your meal upstairs?”

“The dining car will be fine,” Mark says, like a monocled tycoon. He cracks another cold one and I pour a cup of pinot. I would like to write, but the blood required in my brain is rerouted to my core to deal with my plant-based decisions.

“Let’s explore,” Mark says, and I agree, hoping that movement will aid digestion.

We climb up the narrow stairs to make our way aft. The gangway is steely and bright, very Death Star, with knobs and fat buttons that open the doors with a deep rattling swish. 

In the dining car, we discover an elongated series of Waffle House booths and I make a note for us to return here with my laptop. Moving on to coach, dimmed now, we see a Grizzly Adams type, big as a Kodiak, snoring through his beard, dreaming of pelts. Through the windows, the landscape now gone dark, I see that we’re passing some small prairie village. We stroll through more cars, quiet fathers and sleeping sons in Cubs apparel, a klatch of women in hijabs. The snack bar car features a concession stand serving hot dogs and nachos. Mark wants a wiener, I can tell, though I’m not sure where in his body he plans to put it.

Back in our room, we’re sleepy. Together we attempt to transform the roomette into a pair of bunk beds, but the gallons of beer and wine we’ve poured into our livers have made such large puzzles difficult. Eventually, Mark claims the top bunk and climbs up. 

“We’ve got all day tomorrow to write,” I say. “The morning is better anyway.” 

“Let’s do it.”

Mark is always a let’s-do-it kind of friend, but it’s possible he was not listening, because I can now hear him snoring. Generally, though, I could propose we paddle a tandem kayak to Bora Bora and he’d consider it. His Neverland lifestyle is highly flex. He now sells life insurance over the phone, a remote job he can hate from anywhere.

As he sleeps, I find a notebook and prepare for the thrill of night writing as we juke through the fruited plains. Around two in the morning, my pen lost in the endless crevices of the world’s tiniest escape room, I awaken. We are stopped. 

“What the hell?” Mark moans, above.

“Carbondale,” I say.

We step barefoot out onto the moonlit trackside pavement of this village where I once composed many plays, now mercifully decomposing in nearby landfills. In the dark, Amtrak employees wait patiently for the few stirring passengers to finish inhaling the heavier night air. The South creeps up on you. Home’s getting closer. The idling staff seem somehow both familiar and strange. Large people mostly, tall and rotund, not at all like the fastidious attendants of British Airways. This lot seems capable of throwing human bodies off the train. 

Soon, we are back in our berth and dead to the world. At dawn, the train eases us awake as we hum through hills and trees that crowd closer, set to a yellowy fire by a low Southern sun. My notebook remains empty.

“Man, this is beautiful,” I say.

“What’s beautiful?” says Mark, above.

“The landscape.”

“I see nothing but a wall. I’m trapped.”

Central Station in Memphis, an instrument in delivering our nation’s musical genetic code from the Deep South to the world, has now, more than 100 years after its construction, petered out to a single track. But when you stand on the lonely platform at seven on a clear summer’s morn and look over the city, you can see why some bluesmen said to hell with everywhere else and stayed. I was born here, lived here for many years, and have never seen Memphis so pretty.

“Say, can you boys watch the door for me?” says car captain Ricky.

“What’d he say?” says Mark.

“He deputized us. Guard the door.”

Mark and I ensure no tramps hop aboard (yet another charm of the rails), and soon we are moving again. The next four hours we’ll chug through the Mississippi Delta. To prepare for a solid stretch of writing through this flat-earther’s paradise of swamps and soybeans, I gather a change of clothes and step gingerly to the bathing closet to revive my tired body. In seconds, I am covered in a rich lather and warmish water coughs its way onto my flesh as I’m lovingly thrown from wall to wall with each new curve. Refreshed, I return to find Mark eating the last gelid slice of Giordano’s as curly-headed Hereford cattle rocket sideways past the window, followed by an announcement encouraging passengers to flush.

“That reminds me. We should eat,” says Mark.

“We need to write.”

“Definitely.”

In the dining car, a server in Amtrak uniform—with the slight costume addition of an apron—takes our order, quickly presenting us with an omelet and pancakes that taste of motor oil, along with meat-based meat in both link and patty form. We don’t finish the food but appreciate the speed and friendliness with which it was presented. But the real luxury here is what we see through the windows: Swamp. Farm. Weeds. Cotton. Cow. Meth addict. Miles disappear, and so does our motivation. This view’s too good not to sit and stare, the way campfires make you do. Something about the endless movement invites easy contemplation.

“Greenwood! Greenwood!” comes the announcement an hour later. Porters run through cars like captains of the 82nd Airborne, rousing the paratroopers. 

“Next stop, Greenwood!” 

We disembark briefly to see the town where I first heard the siren call of this old train.

“This is a very historic place?” a blonde giant asks.

“Yes.”

He studies the sad little station, looking around for something to photograph, an old courthouse or one of bluesman Robert Johnson’s dozens of possible graves. We can see nothing from here but a ramshackle depot that looks like it hasn’t seen a train since Bob Dylan sang freedom songs at the voter push in ’63.

“Where are you from?” I ask.

“Norway,” he says. “Where is your home?”

“Here, sort of,” I say. “My grandmother’s buried past those trees.”

The Norwegian Goliath looks past the trees, disappointed. Not even he can see that far.

Back aboard, we move to the observation car—a long-windowed box optimized for viewing the bountiful emptiness all around us—where a shindig has broken out. We’ve picked up many new travelers, ready to party in their Saints jerseys, cowboy hats, and shiny boots fashioned from the hides of slithering swamp creatures. Not much quietude for writing, but plenty of action for research. I count at least three Bluetooth speakers playing music at a full crackling roar—musica ranchera and Bobby Caldwell and Tina Turner. I see cans of beer, purple sacks of Crown Royal, and a woman with nails long enough to get her cast in the Wolverine franchise watching a cattle auction on her phone while eating Corn Nuts. 

“I didn’t know they still made Corn Nuts,” says Mark. 

“How many stomachs do you have?”

“I’m a complicated man.”

We haul out what’s left of our warm beer and pound a few in good fun. A multiethnic church group in matching T-shirts enters the car to pass out free candy and speak blessings upon us all. 

An hour or so later, just past Yazoo City—where I was married—we climb up Loess Bluff and into deep, dark, dripping woods, where, with a great juddering jolt, the party train stops. Fallen power lines sizzle across the track up ahead, we’re told, as well as a few large trees for good measure. 

“Could be an hour or two,” the engineer explains over the P.A. “Get comfortable.”

The passengers opt instead to mutiny. 

“What the hell?”

“Where we at?”

“A reminder to flush the toilets!” comes a second aggrieved announcement.

“Y’all better be flushing them toilets!” says a passenger to everyone in the car.

The delay affords precious stolen hours to write, and we scoot forward to the hushed Waffle House car—empty—where I pull out my laptop and portable charger. Mark ducks out and returns with a cartoonish hot dog large enough to require its own ticket, setting to work on the massive link with knife and fork. 

“How do you not weigh five hundred pounds?”

“This dog’s no good,” he says, finishing it.

Maddening silence descends. For all the green around us, we could be awaiting bandits in a Panamanian jungle. Minutes go by. Mark eats the last of the powdered donuts wistfully. He is out of food and I am out of inspiration, which has rattled on down the tracks without us. We sit in silence inside this hulking old beast, hardly a murmur from man or machine. I return to my screen, wondering at the emptiness before me. How many hours, how many lifetimes, have I sat across a booth from this strange and beautiful man in faraway places—from the frigid glacial shores of Wyoming’s Colter Bay to the briny paradise of South Beach—and tried to write? I’ll never stop trying to fill my days with words. I will die at a table like this, the cursor waiting for a new thought that will never come. I long for Mark’s ability just to sit with food and moan gratefully. 

“I’ve got nothing,” I say, closing my computer. 

“That’s cool, whatever,” he says.

I pull out the last bottle of red and, after fetching two coffee cups from the galley, pour us a drink. Writers need time, and Amtrak, it would appear, has all the time in the world. But maybe they ended the residency program for the same reasons Mark and I have written nothing on this train: There’s just too much else to do and see. America changing shape before your eyes. 

“I love you, dork,” I say, the wine turning me watery-eyed. I’m spiraling.

“I love you, too,” he says.

We unload feelings on each other, the way near-drunk men will, grateful, meaning every wincing word. I talk of my darker days, which he and others brightened with love and care. He shares much of the same. What a gift, to have someone who knows everything about you and loves you anyway. I have so many people in my life demanding things from me: pages, rewrites, interviews, blurbs, money, mowed lawns, answers, food, water.

Mark is one of the few who requires only my presence—and my occasional thoughts about food. If he’s taught me anything, it’s that doing nothing, asking nothing, expecting nothing, is a precious skill to be mastered in a life well lived. Sometimes you have to do, but sometimes you can stop and just be, like this man. Like the City of New Orleans.

We lurch forward two hours later, the bottle empty, along with Mark’s four stomachs and the Microsoft Word document. We soon roll through Jackson and then plummet through the Piney Woods that stretch from here to the Gulf. The party car is quieter now, everyone dozing away their liquor. It begins to rain. We amble toward coach. I choose my place of rest among the many open seats as we lumber toward the Gulf. It’s been slow going, but that’s the point of Amtrak.

Planes always put me in a bad mood. They herd you like slaughterhouse fodder, compel you to undress among strangers, pat your crotch with gloved hands, gouge you for a club sandwich, shame you for bringing luggage, park you on overheated runways, dare you to hate your fellow man. Humanity is stolen in exchange for speed. Sure, you get there quicker. But who are you when you arrive? 

We could’ve flown from Chicago to New Orleans in a remarkable 144 minutes. Mark and I will have managed the same journey in a little under 24 hours, counting delays, but you know what? Nobody yelled at me for bringing my own water. And while the roomette was indeed small, I was allowed to walk freely about the length of this wondrous machine and escape every so often to breathe in new air from some new town, while discussing my grandmother’s burial place with a Viking. They even let us bring a case of beer and three bottles of wine. Try that on United.

They say we’re on the “cusp of a passenger rail revolution,” thanks to a new $1.2 trillion infrastructure bill, which includes “an unprecedented $170 billion for improving railroads,” which I can only assume includes meat-based meatballs and improved wieners, in addition to speed and convenience, though maybe we’ve got enough of both already. Maybe we need to slow the hell down.

I awaken from a nap to one of the dreamiest visions I have ever seen out a window: an ocean planet beyond the glass, placid water stretching as far as the eye can see, gray and wet as the sky—the Lake Pontchartrain Causeway, the longest bridge in the world. New Orleans materializes across the expanse, high-rises pushing up out of the water. Sublime is the word. Alien, though I’ve seen this inland sea a thousand times. 

We slide quietly through estuary marsh and into the heart of downtown under the brutalist concrete arcs of I-10 and come, finally, to the station. The clouds break and the sun shines down hot as we step down off the train into the city that gave her its name. 

A rotund man follows us down, and, tangled in his many bags, tumbles and somersaults onto the platform to great laughter and applause, hopping upright and with a fat smile declaring, “I feel blessed!”

“Port of call,” Mark says. 

“I could eat,” I say.

We didn’t write a word, but I don’t mind. I’ve achieved enough for now. Mark and I have done something far more important on this old train: nothing. It was lovely.

Harrison Scott Key is the author of three nonfiction books, including How to Stay Married: The Most Insane Love Story Ever Told, Congratulations Who Are You Again, and The World’s Largest Man. He lives in Savannah, Georgia.

Editor: Carolyn Wells
Copyeditor: Peter Rubin

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Max Olesker| Longreads | July 13, 2023 | 15 minutes (4,199 words)

When I walk into the room, it is the enormous minotaur head that first catches my eye—its vast gaping concrete mouth containing the grate of a fireplace, its wide eyes staring back at me. Above the minotaur, ancient Greek tragedians are painted on the wall—Euripides, Sophocles, Aeschylus. Surrounding the minotaur on one side is an array of handmade military paraphernalia: shields, tabards, helmets, and weapons. Dismembered human body parts sculpted from newspaper adorn the other, limbs, torsos, and heads all aimlessly scattered near the bay windows.

It’s a cold February morning, and I’ve come to Birkenhead, just outside Liverpool, to visit the former home of a man named Ron Gittins, a property affectionately known as Ron’s Place. Over the course of 33 years, Gittins painstakingly transformed almost every surface of this flat with a series of artworks in a variety of styles and mediums, from friezes on the walls of his living room to a Roman altar in his kitchen and enormous, ambitious fireplaces (yes, multiple). It’s a singlehanded labor of love. But, because Gittins was renting the flat—with no right to modify the property to this extent—it’s also illegal. As a result, the work was created almost entirely in secret. It was only after Gittins’death at age 79 that word gradually began to trickle out about the existence of this strange cave of wonders.

It was in Koh Samui, Thailand, that I encountered my first “outsider environment.” Away from the bustling hubbub of the beaches and tourist strips, partway up a mountain, in a secluded grove surrounded by waterfalls and greenery, lies the Secret Buddha garden. It’s full of large, intricate stone sculptures—angels, snakes, musicians, and Buddha figures—in a world sprung entirely from the imagination of a man named Nim Thongsuk. A retired durian fruit farmer, Thongsuk started his project at the age of 77, constructing a vast, complex environment that even included his own tomb. Exploring the garden, I became taken by this industrious, audacious expression of something deeply personal. 

“Outsider art,” “folk art,” and “art brut” are designations frequently applied to artists—often untrained—who work outside the classical tradition (and frequently the law). If the work is a large-scale installation, permanent or semi-permanent, it might be deemed an “outsider environment” or “visionary environment.” Outside Madrid, a former monk named Justo Gallego Martínez spent 60 years singlehandedly building his own cathedral, working on it daily until he passed away in 2021. In Westbourne Grove, London, retired postal porter and factory worker Gerry Dalton, an “Irishman and self-proclaimed gardener” according to his site’s Instagram bio, created a series of remarkable outdoor sculptures along the Grand Union Canal, in a collection he dubbed Gerry’s Pompeii. In South Africa’s Eastern Cape, Helen Martins, who lived from 1897 to 1976, created The Owl House, which features over 300 sculptures made from concrete and ground glass. And there are many, many more across the globe, each with its own infinitely rich backstory.

I am partly drawn to these works because of my parents. My mother trained in visual arts and works with community groups, teaching thousands of people her skills and techniques; whenever she sits somewhere for more than a few minutes, sketches and illustrations emerge. Every birthday card she’s ever given me has been a wondrous one-off—illustrated, painted, or screen-printed—and accompanied by a poem from my father, a writer, poet, and word-obsessive from whom I’ve inherited my own compulsions. Both my parents have amassed vast bodies of work, unseen by galleries or collectors. Perhaps they too are outsider artists. And perhaps, via her teaching, my mother has even inspired the work of other outsider artists as well. 

Upon entering Ron’s Place for the first time, I’m unprepared for the feeling of being subsumed by a man’s imagination. The flat is dusty, strange, and wonderful.  

The central corridor is painted floor-to-ceiling with ancient Egyptian iconography—profiles of Horus the falcon-headed god and Osiris, Lord of the Underworld, beneath life-size depictions of a Cleopatra-esque pharaoh and impressionistic signs and sigils. On the left is the Minotaur Room, its cavernous mouth the focal point. Next is the bathroom, entirely aquatic-themed, with manta rays, hammerhead sharks, and all manner of other painted sea life swimming across the walls. The Georgian Room is filled with portraits of naval figures and the first fireplace Gittins created (a comparatively low-key affair, with fish for feet). Across the hall is the Lion Room, which features trompe-l’oeil friezes, including an area of faux chipped stone and a cheekily smiling horse, which faces Gittins’s technical masterpiece: a vast lion fireplace, spectacularly and carefully rendered. 

Throughout the flat are half-finished sculptures of busty women, bags of papers, books, bric-a-brac, passable (from a distance) replicas of military uniforms; miscellaneous items gathered and hoarded for some future use. Whatever task Gittins’ magpie mind focused on, he seems to have worked on it feverishly and industriously. Many of the paintings are naive. The painting on the high ceiling of the Georgian Room is particularly crude—the makeshift ladder and extra-long extended paintbrush he used clearly not affording him the detail he might have wished for. But the fireplaces, particularly the lion, are astonishing. And the totality, the experience of it all, is what Ron’s Place is about. Not one painting, not the model of the weirdly muscly cherub, nor the vast pile of notes seemingly devised to help Gittins remember entire history books (“TAASB; The American Army Surrounds Boston” “HLOTB; Heavy Losses of the British”), but everything, all together—that’s what makes this special. Taken as a whole, it’s an endlessly fascinating space; a window into a man’s life, into his mind. Although the flat is cold and musty, it’s a dreamlike place where time slips away. The experience is all-encompassing and leaves me feeling disoriented. 

“It’s all quite powerful, isn’t it?” says Martin Wallace, as he shows me around the flat. Wallace, 55, is a warm, articulate Scouser and BAFTA-nominated filmmaker who frequently collaborates with Jarvis Cocker, the frontman of ’90s Britpop band Pulp. Together, they made a documentary series, Journeys Into the Outside, traveling the planet to investigate extraordinary places built by regular people. Wallace, who lives nearby, is now working on a feature-length documentary about Gittins, and in the process has become inexorably drawn into the orbit of Ron’s Place. Initially, this only involved helping cover the flat’s rent—as a trustee—after Gittins passed, and thinking of a long-term strategy to preserve the unique interior. But it’s rapidly become far more problematic. Ron’s Place is under threat: After months of stasis, the landlord and owner, Salisbury Management Services, has finally decided enough is enough. The building is to be sold at auction.

The front door flies open and Jan Williams and Chris Teasdale hurry in. They huddle with Wallace in the Egyptian corridor; urgent crisis talks begin. Jan Williams, 61, is Gittins’ niece. Together with her partner, Teasdale, 71, they work as artists under the name The Caravan Gallery. Along with Wallace, they have now dedicated themselves to preserving Gittins’ legacy. The current discussions, hushed and frantic, are about potential investors who might work with them—but they don’t sound promising. One man claiming to have the money also had quite a lot of snot on his jumper. The housing associations who expressed interest the previous summer have all gone quiet, the occasional sympathetic voice inevitably getting lost in the mundane realities of running a large business. In order to be eligible to apply for funding, the trio has created a legal entity, The Wirral Arts and Culture Community Land Trust. But, with time now of the essence, it’s not clear how that will save the property. 

At one point, we all stand together in the Georgian Room. “What would you do?” Williams asks me. It’s hard to answer. It’s also hard to countenance the environment I am standing in being destroyed. Could an art gallery step in? Could the council? Could the Lottery? 

“Couldn’t Paul McCartney just buy it?” says Williams, exasperated. 

Ronald Geoffrey Gittins was born in 1939, the middle child between two sisters, and grew up in a small terraced house that was later destroyed as part of Liverpool’s slum clearances. His father, James, a navy man, worked on the docks, and his mother, Alice, worked in service for a wealthy family. In their small, ramshackle yard, where his father kept ducks, there was an outside toilet. Here Gittins would sequester himself away, training his voice by reciting Shakespeare, frequently Richard III’s opening monologue:

“There were theories that he was on some sort of spectrum,” says Williams. “At school, teachers didn’t know how to handle him. He was obviously really bright—but he didn’t know how to fit in.” 

“He was known as your mad uncle Ronny,” Teasdale says gently. 

After school, his employment was patchy. In the 1960s, he trained as a Methodist minister at a theological college in Derbyshire. “He became a sort of freelance preacher,” says Williams, “causing havoc and being a pain in the ass!” For a while, he became a white goods inspector, where he was known for being overly officious and invariably siding with the management, rather than the employees.

While the interior of his flat was a closely-guarded secret, Gittins himself was a well-known flamboyant local figure. He wore bright handmade suits and wigs—sometimes more than one at a time. He would take his guitar to the local bank and serenade the staff. “It’s kind of what we might call eccentricities, in a euphemistic way,” says Wallace. “Mental health problems, looking at it another way, of course.” He was sectioned on a number of occasions, following bouts of erratic behavior, and later in life shared his belief that he was a spy, intercepting articles hidden in newspaper articles. “People sort of enjoyed what he’d do, but also othered him quite a lot,” says Wallace.

But he was also clearly extremely bright and capable, fascinated with the world, and generous with his time. Christopher Lee-Power, a Liverpool-based actor, met Gittins in a chance encounter on a college bus and credits him with launching his professional career. “Ron took me under his wing and began refining my voice while teaching me drama, life skills, and art,” says Lee-Power. “We visited several art galleries, where he shared his knowledge of the great artists, and he even encouraged me to read aloud from a book to boost my confidence. As the years passed, I honed my acting skills and voice under his tutelage.”

And as an artist, Gittins wasn’t totally untrained—he took an art foundation at the Laird College of Art and at one point set up a logo business called Minstrel Enterprises, naming the company after a Bible quote in which King Solomon summons a musician to play. 

What’s more, Ron’s Place wasn’t the first home in which Gittins expressed his art; he had transformed properties twice before. He did it in his parents’ rented home:
pictures of pompeii help put ron to sleep reads the headline on a mid-’70s article in The Liverpool Echo, alongside a photo of a 35-year-old mustachioed Gittins sitting in his childhood bedroom and gesturing proudly at the space he has transformed. Later, he secretly recreated the Sistine Chapel’s ceiling on the ceiling of his rented room. But it wasn’t until 1986 that he found his true muse—the little flat where he would live for the rest of his life—and begin his greatest creative endeavor.

In the days after I return to London, Williams, Teasdale, and Wallace continue to tirelessly publicize their cause. A GoFundMe is set up, and donations trickle in. The public is enthusiastic, but the pledges are generally on the order of £10 and £20, and their target—£350,000—seems futile. 

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The precarity associated with Ron’s Place is not uncommon when it comes to outsider environments, which are often created without any long-term planning. This has led to some mixed legacies. After Justo Gallego Martínez’s death, Spanish officials deemed his junk cathedral unsanitary and refused to honor his wish of being buried in the crypt; the cathedral itself faced the prospect of demolition before eventually being preserved by a charity. Gerry’s Pompeii, though “saved” after a mass crowdfunding push, had a number of its artifacts removed by a relative, only surviving in a diminished, depleted form. But Helen Martins’ Owl House was declared a “provisional National Monument” in 1989, keeping her glass (and concrete) menagerie safe.

Discussions around the fate of these environments invariably prompt questions. What is art? What is valuable? But part of the joy and power of environments like these is that they are generally, almost obstinately, uncommodifiable. In this, they feel like the polar opposite of NFTs—they are not joyless, arid things, designed solely for the marketplace; they are not scalable. Instead, they speak to something inner. This is My World reads the sign that Helen Martins placed on the grounds of Owl House. “I will not be ignored” was Ron Gittins’ passionate mantra, often repeated to his brother-in-law Henry. 

But the defiantly impractical nature of visionary environments certainly doesn’t make them any easier to preserve or protect. “If Ron had made prints or T-shirts, everyone would want one,” says Wallace. “But what do you do with a minotaur fireplace?”

What do you do with a minotaur fireplace?

As the auction to sell the flat approaches, the atmosphere in Gittin’s camp oscillates between panicky, resigned, and frustrated. Appeals to the press are made: Articles appear in The Guardian and local papers; Williams speaks on BBC Radio 4.

Serious buyers begin to emerge but with no plans to preserve the unique ground floor space. Sensing a bargain, a builder draws up plans to gut the building and remodel it as a home for his family. The unthinkable—the destruction of Ron’s Place—now seems the most likely outcome.

In a last-ditch effort to keep bidders at bay, the team submits a listing to Historic England, infuriating the landlord and property manager. “The owners were absolutely furious, and said we’d stabbed them in the back after everything they’d done,” says Williams, “Which is a bit luxurious because we’d been paying the rent and we kept our side of the bargain.”

In life, Gittin’s relationship with his landlords was equally contentious. “He didn’t have water for many years because of a dispute,” says Wallace. “Originally his rent included water. Then the landlord was bought out by another landlord, and the second landlord said, ‘I’m not paying your fucking water rates.’ And Ron said, ‘Oh, yes, you are. And let’s go to court about it because it’s in my contract.’ Eventually, it was found against Ron—but he disputed that. So he’d walk miles for a standing tap.” 

With his penchant for high-handed letter writing, Gittins escalated things to the inevitable level. “Dear Mr. Gittins,” reads a letter dated January 16, 1996, “Thank you for your recent letter to the Prime Minister about your liability for paying water charges to North West Water. Your letter has been passed to his Department for reply.” When Gittins eventually did get water access, he would leave his water on constantly. “I don’t know whether he was trying to retrospectively get his money’s worth,” says Wallace, “or whether it was just so cold that he didn’t want the taps to freeze.”

The Gittins of my imagination reminds me a little of Johnny Rooster Byron, the central figure in Jez Butterworth’s play Jerusalem. A local drug dealer, retired stuntman, and teller of tall tales, Byron is a self-created creature of fantasy. He is set against his nemesis, the local council—a bureaucratic, clipboard-toting symbol of mundanity. He’s a romantic, creating art from the mythic history that surrounds him and the detritus of his life. Byron is a deeply flawed figure, but his impassioned fist-waving at authority has a certain power to it, a certain magic. He rails against the quotidian bean counters until the last, but you feel the walls closing in, and sense his world can’t last forever.

Yet, bizarrely, despite his outsider status, Gittins wasn’t just anti-authority; he clearly identified with the establishment. His journey through life was shaped by a testy, complicated relationship with the powers that be: part fascination, part frustration. An ardent monarchist and an enthusiastic Thatcherite, in 1973 he even ran unsuccessfully for Conservative councilor in Bevington. He became almost a tribute to authority, from his preoccupation with spycraft and military history to dabbling with organized religion and his prodigious, litigious, letter-writing. (He tended to begin his letters with the words “Without prejudice,” a phrase Williams feels reflects his positive outlook on the world, but Wallace suspects to be more a highfalutin means of being able to sound off with impunity.) 

And, though Gittins created all of his work outside of institutions, that wasn’t entirely by choice: In 1998 he submitted a piece of work to the Royal Academy. When I visit the flat, I see the piece—a bust of Alexander the Great, created in newspaper and glue. It wasn’t accepted. But he never seemed fazed by rejection, Williams explaining that he’d invariably see it as their loss, shrug, and continue work on his latest project. Perhaps he didn’t require the approval of the establishment because, in his own flat, he was the establishment. Gittins had created a visionary environment: A place where he rubbed shoulders with kings and commanders and beautiful women, where he dressed in the smartest of uniforms and corresponded with the highest offices in the land, and they with him.

In February, a final burst of creativity sets in at the flat. Local music students come to play there and Wallace films them. Andy McCluskey, the lead singer of the band Orchestral Manoeuvres in the Dark, drops by. Paul Griffiths, the Birkenhead Poet, performs spoken word. But it’s a last hurrah; at 4.30 p.m. on February 28, the day before the auction, their license runs out. The keys to Ron’s Place are handed back. 

The next morning, however, Williams receives an email: “Just heard [the flat] is up for auction today. I would like to loan you the money needed.”

Tamsin Wimhurst is a 57-year-old history and heritage professional from Cambridge with a passion for rescuing unusual properties. In 2014, she and her husband, Mike, became the saviors of David Parr House, a Cambridge terraced house filled with beautifully preserved, intricately patterned interiors from the Arts & Crafts movement. Wimhurst was sat at breakfast flicking through a day-old Guardian when she read about Ron’s Place being put up for auction later that day. She sprang into action. “I rang my husband who was away to say we had to save this place, and made contact with Ron’s Place whilst also trying to catch a train to London,” says Wimhurst, “but I had to act quickly, as the auction was at midday.” 

The morning of the auction becomes a whirlwind. Gittins’ camp had the assurance of funds from Wimhurst, but, with mere hours to the auction, no actual money had changed hands. The Wirral Arts and Culture Community Land Trust they’d set up doesn’t even have a bank account yet. With the clock ticking, Martin Wallace takes a giant plunge. He offers to use his own credit card to secure the deposit. 

“It was all, you know, completely risky,” says Williams. “We were all in our van driving over to Ron’s, and Martin was saying ‘Should I? I’m gonna do it now. Are you okay with that?’” 

He places the bid.

Gittins seemingly never stopped having grand plans. When his parents needed a wall outside their house, he volunteered, promptly beginning a hugely ambitious Roman wall, the construction of which rendered the garden completely unusable for 12 months. Towards the end of his mother’s life, Gittins would wheel her out of her nursing home and take her to spend the night in his flat. His siblings were horrified, but Gittins didn’t seem to care—and, by all accounts, Alice seemed delighted. But it was worrying, wearying behavior.  

His family became frustrated. His sister Pat was able to retain an affection for her brother, but Pat’s husband, Henry, eventually washed his hands of Ron—and still can’t bring himself to talk about him. “Henry hasn’t got any interest—very little interest,” says Pat. “He [Ron] really had a detrimental effect on our family life, many times.”

The last time Pat saw Ron, there was none of the fire and brimstone of his more combative moments. They shared an avocado sandwich, and Ron ate a kiwi fruit. “We just chatted generally about different things,” says Pat, “nothing of any great significance. Before he left, he said, ’Can I say a little prayer with you?’ I said ‘fine.’ And he sounded quite reasonable and rational.”

But years of living in an unheated flat eventually took their toll: Gittins became ill. A local friend tried to put him in contact with social services and Age Concern, but Ron played down his illness and pretended he could look after himself, only allowing a head teacher from a local school to check in on him and deliver essentials. By this point, he had begun sleeping on the floor behind his front door, as though guarding the flat. It was here, on September 2, 2019, that Ron Gittins’ body was found—and the fight for the legacy of his extraordinary home began.

As the auction plays out, the atmosphere in the van is unbearably tense. But there is only one counteroffer—likely the landlord attempting to boost the bidding price—otherwise, the team’s listing of the property with Historic England works in warding off other bidders. At 12.40 p.m., a notification pings up on Williams’ phone. Their bid has won. 

Euphoric, they pull up to Ron’s Place. Outside, sitting in his car, is the property manager who had recently berated them for the Historic England registration. They knock on his window; when he rolls it down to tell them that the house has been sold, they say “We know—we’ve just bought it!” The issue was always knowing what to do with a space that wilfully ignored the rules of the world, and instead, chaotically, gleefully, created its own. The property management company was never some vindictive captain of industry; it just hadn’t signed up for a Roman altar to be created in one of its buildings. The bland, indifferent machinery of business was simply seeking to tame something strange and wild—to turn it into another cell on a spreadsheet. Or, as Williams put it: “The notion of a developer gutting the amazing art environment created by Ron Gittins over 33 years is like deciding to gut a pyramid to create a new branch of Primark.”

Tamsin Wimhurst proved to be true to her word, providing funds from the Muller-Wimhurst Trust to ensure the ongoing survival of Ron’s Place (and Wallace’s credit rating). The home had found a benefactor who sees value in the chaos. “It is unique and quirky, with the passion of one man’s life laid bare on the walls of his home. It immediately gets your mind whirring—how, why, who, what, when?” says Wimhurst. “I just thought, ‘How could it not be saved?’”

Jarvis Cocker succinctly summed up Ron’s Place in his statement to the press: “With environments like these, you get a complete work of art that somebody is living in and that they’ve established the rules. It’s like a personal universe.” Adding, with beautiful understatement, “Everybody decorates their house in some way, Ron has just gone that extra mile.”

On March 29, the day after the sale finally goes through, I speak to Williams. She is elated: “Miracles do happen!”

There’s more work to be done. Having fought tooth and nail to preserve the dilapidated house that contains Ron’s Place, Williams, Teasdale, and Wallace are now faced with the challenge of what to do with it. 

Further fundraising is beginning, with the aim of renovating the property and making it safe to welcome the public. But there’s now the sense of being at the start of a new chapter, rather than the closing of an old one. 

“Ron’s Place will thrive as it has a group of passionate people behind it who have worked so hard to conserve it,” says Wimhurst. “I don’t mind what it becomes—that is for Ron’s Place to decide—but I know that the community, wellbeing, and creativity for all will be at the heart of it.” 

“We want to make the house really beautiful, just make it a really fantastic place,” says Williams. Their Community Land Trust now has ambitions beyond Ron’s Place, too—to take on other old buildings and transform them into creative spaces. 

I ask Williams what Gittins would have thought of the drama surrounding his old flat.“Oh, he’d have been absolutely over the moon,” she says. “He always said, ‘I will not be ignored.’ So it’s like he’s getting all the attention you could ever have wished for, even after he’s gone.”

And so, against the odds, the minotaur continues to roar. Ron’s Place—with all its grandiosity, impossible aspirations, outsized ambition, surprising accomplishments, exasperating complications, contradictions, and surprises—lives on. And so does Ron.

Ron’s place is being renovated before a grand reopening. In the meantime, you can tour Ron’s place online or find more information here.

Max Olesker is a London-based writer-performer, comedian, and Associate Editor at Esquire Magazine UK. His feature writing has also appeared in The Observer, Times, Telegraph, and Esquire’s many international editions, and he is the co-creator of the ITV sitcom Deep Heat. His radio sitcom, The Casebook of Max & Ivan, is available on BBC Sounds.

Editor: Carolyn Wells
Fact-checker: Julie Schwietert Collazo
Copy editor: Peter Rubin

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John Paul Scotto | Longreads | July 6, 2023 | 11 minutes (3,069 words)

Dad and I were tossing a football in my yard. I was pleasantly surprised that my arm muscles retained the memory of a flawless throwing motion. The ball practically leaped out of my hand. 

“It’s a shame Coach Mike didn’t give you more playing time,” Dad said. “You had such power to the opposite field.”

He was referencing my final baseball season, freshman year of high school, two decades earlier. 

“It’s all right,” I said, snagging his pass with one hand. “It was just JV baseball.”

“You could’ve started at third base, shortstop, or catcher.” 

I remembered allowing five consecutive passed balls as catcher. Berating myself for striking out. Eating obscene amounts of sunflower seeds while warming the bench. A teammate saying, “What’s the point of you even being here?”

My face flushed. For God’s sake. How could these ancient events still make me emotional? 

“Well, I hate competition,” I said, throwing a spiral. “I’m never going to compete again.” 

Dad caught the football, tucked it under his arm, and said, “Fine.”

The sonic rhythm of our catch gone, we stood in a screaming silence. Would we fill that silence? Would we talk about the chasm between us? The thing we’d never really been able to discuss? 

Hell no.

My senior year of high school, I was accepted into 11 colleges. My father was in consistent contact with the football coach at each school, talking to them on the phone, mailing them VHS footage of my games. Baseball hadn’t stuck, but playing quarterback had; Dad hoped I would continue doing so at a higher level. The summer before college officially began, I moved to campus for practice, intending to succeed at quarterback as a tuition-paying walk-on. 

But sleeping in the dorms proved impossible. There was a strange dude snoring on the bunk under me. The room smelled of industrial cleaning solutions. The mattress was made of squeaky plastic. I was sore and tired from practice. My body needed to shut off and recuperate, but my awareness of this need heightened my anxiety and kept me awake. 

After three nights, bleary from sleep deprivation, I called the team’s head coach from my cell phone. I was pacing in the dormitory’s common room, on the verge of hyperventilation.

“Why are you calling?” the coach said when he answered.

“I can’t play football anymore,” I said.

Then I began weeping uncontrollably. The coach said nothing as I offered half-coherent, slobbery apologies.

Finally, he said, “All right, all right. Just calm down. Jesus. It’s all right.” 

Dad drove me home from campus later that day. I stared out the passenger side window nonstop: trees behind guardrails, green mile markers, the smell of Dad’s Arrid XX spray-on deodorant. 

“I’m sorry I quit,” I said. “It was too hard.” 

“You have nothing to apologize for,” he said. We never talked about why it was so hard for me. 

That was our entire discussion of my college football career.

Freshman year of college, I loved my classes, since they introduced me to ideas I’d never encountered in my small, conservative town, but I was going mad from lonesomeness and insomnia. In the wee hours of the night, I’d aimlessly walk city streets, contemplating suicide and fantasizing—ludicrously—about transferring to another school, playing football, and going to the NFL. I’d often sit in a pew at a vacant Catholic church, begging for Jesus or Mary or God or anyone, really, to help me calm down and sleep. 

This was unsustainable. After freshman year, I moved back home and commuted 75 minutes each way to campus. While my peers were attending college parties and discovering themselves, I was glued to a laptop in my parents’ basement, playing Texas Hold ’em, my money spread across six tables in an internet casino. I had rigid rules for how to play, and I was able to consistently win money. 

My goal was for internet poker to pay off my growing student debts and ensure I’d never need a real job. This didn’t seem ridiculous. My high school football teammates and I were enmeshed in the poker craze of the early 2000s, and one guy from our town was already making a living as a card player. To this day, two decades out of high school, he’s never had a proper job, and he’s rich. He sits at the high stakes table in a casino and waits for “donkeys”—tourists, rich people, degenerates—to give him their chips. 

The difference between me and that guy was that he could control his emotions. I had meltdowns. I’d get heated about bad hands or I’d want to win faster. Then I’d break my betting rules, bluff hugely, and get called on it. I’d often spend weeks methodically earning thousands of dollars, and then, during a meltdown, I’d put all of my winnings on a single table and lose it in an instant. I couldn’t account for why I was doing this. Some nights—at the height of my addiction, which corresponded with periods of extreme social isolation—I’d try to stop gambling and sleep, but my arms and legs would flex and quake at the thought of playing cards, and I’d get out of bed and attach myself to the laptop until sunrise. 

I was in a long-term relationship with a woman I’d started dating at the end of high school. She attended a college two hours away, where she partied regularly and made friends. I had her Facebook page memorized, and when she posted a new picture, I scrutinized every person in it. Part of me was a jealous boyfriend. But mostly I envied her. I wanted a Facebook page full of people and fun. I wanted to be invited to parties. I wanted to dance and be free. Why couldn’t I? I wasn’t sure. I just knew that foreign, unpredictable circumstances drove me into myself, rendered me silent. As a kid, I’d always thought this shyness was something I’d grow out of, but in adult life, things became less structured and predictable and my shyness intensified. 

Eventually, my high school girlfriend and I broke up. We cried together and said that we had grown apart. I would struggle greatly with this loss, missing her for years after she’d moved on from me. But I knew our breakup was the right thing to happen. I was holding her back. I lived in a hole, and she lived above ground. I didn’t yet understand the nature of this pit I was in. It was too deep. 

When my gambling problem got harmfully expensive, I admitted to myself that I was a donkey, and refocused my addictive energy onto movies that I loved. During one phase, I watched Pirates of the Caribbean multiple times per day, every day, and I’d annoy my family with my bad Jack Sparrow impression. I also got hooked on Just Like Heaven, a romantic comedy about a man falling in love with a woman’s ghost who lives in his apartment. I liked fantasizing about living with a ghost. I wanted a human spirit to witness my private, friendless life, and to fall in love with me.  

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Because I tended to get obsessed with movies that weren’t very good, I often wondered if I was an idiot. The most pronounced example of suspected idiocy occurred after I wrote a letter to Keira Knightley and dropped it in the out-of-town mailbox at the post office. The moment the mailbox rattled shut, I got queasy, and I saw myself with a harsh and sudden clarity: I was a 21-year-old man who’d written a love letter to a celebrity, and the person who would ultimately read the letter—not Keira, of course, I realized in my new clarity—might think it had been written by a child. 

I stopped rewatching Knightley’s movies after that. Even my beloved Pirates. It scared me that I could get sucked into a black hole of obsession. My brain perpetually wanted something to latch onto and compulsively think about, but I had no idea why. 

I became obsessed with another movie: Eternal Sunshine of the Spotless Mind. I liked that critics considered the movie “good;” this made my compulsive rewatching feel slightly less idiotic than usual. 

I was especially moved by the scene in which Kirsten Dunst speaks the movie’s title. She quotes a passage from Alexander Pope’s “Eloisa to Abelard”:

The “vestal” is an ideal—forgotten, forgetting, innocent, safe—that the speaker wishes they could become, which of course they can’t. Because the speaker is not an ideal. The speaker is a human spirit cursed with a human memory. Like I am. Like you are. And no matter how much we try to erase our worst memories, they remain etched into us. 

Toward the end of college, I’d go to bars alone, sit in a corner, and watch how people behaved. I took mental notes of the social techniques that would be useful to me: how to buy a beer, how to nod and smile while listening, how to rest your elbows on a bar, how to navigate a dance floor with apparent ease. Once I had a working knowledge of traversing nightlife, I’d go out with my younger brother (he had a fake ID) or my former football teammates, to practice having fun with others. By the time I was 22, I trusted that I could socialize with peers, as long as there was alcohol involved, the lights were dim, and the noise was loud. In other words, as long as many forces were drowning out my social anxiety.

After undergrad, I bounced around. I did a master’s degree in New York City before becoming a well-intentioned, ineffectual high school teacher in Hartford, CT. Then I moved to Virginia to pursue an MFA. Each phase of life felt like a chance to finally become normal. My method of reinvention: lying. I tried to construct an image of myself that was socially competent, smart, and even charming. I talked as if I’d had friends in undergrad, as if I’d been to house parties and drunk beers from kegs. During my MFA, when I got invited to potlucks, I acted like they weren’t the first potlucks I’d ever attended. I talked about playing high school quarterback as if it were a purely positive experience, and I made no mention of the isolation and embarrassment of playing—as a shy and sensitive teenager—such a public role in a small town. 

In Eternal Sunshine, Joel hires a company to erase his ex-girlfriend Clementine from his memory. Most of the movie takes place in Joel’s mind, while scientists pinpoint and remove memories of Clementine. Throughout this process, the backdrops of Joel’s memories crumble and deteriorate. A powerful example: A house collapses into rubble, as if being demolished. 

I told lies about myself because I hoped that I could alter who I was to other people. I didn’t want to embarrass others—especially my dad—by being a strange man. Perhaps I could even alter who I was to myself, in my mind.  It was like I was perpetually demolishing a house inside me. And sometimes that demolition became literal in its violence: I would punch myself in the head, attempting to knock my embarrassing memories and bad feelings out of my skull.

But the house inside me would always reconstruct itself. 

It couldn’t be destroyed.  

After repeatedly failing at reinventing myself, I’d always give up my elaborate fabrications. I’d avoid social gatherings, and cling to a romantic partner or one great friend. This shift back into hiding always followed an embarrassment, usually involving alcohol. I’d drink too much. Then I’d puke or cry in front of people. 

Sometimes the embarrassment highlighted my dishonesty. For example, I frequently told my fellow high school teachers that I was friends with Snooki from The Jersey Shore. Snooki had grown up near me, and I played it as if I knew her before she was famous. 

Then, one day, my sister visited, and we ran into one of my colleagues at a bar. The colleague asked if my sister knew Snooki, too. My sister responded: “Too?” My face reddened, and, in a panic, I said to my colleague: “I’ve never met Snooki. I just pretended I used to party with her because I wanted to seem interesting.” My colleague changed the subject quickly, choosing not to linger on my lie or make fun of me, not because my lie wasn’t ridiculous or worth laughing about, but because only a weirdo would tell such a lie, and it would’ve been mean to tease a weirdo. 

Growing up, I knew I was different from other kids. Dad knew, too. But he didn’t want to think about it—perhaps because my obsessiveness and social problems were traits I’d inherited from him. I was taught not to whine about my insomnia or my emotional discomfort. One of the most common phrases I heard from my dad was “I don’t want to hear it.” He’d say this when I attempted to talk about an unpleasant feeling. So I kept my struggles to myself. Ground them up. Crushed them. 

This resulted in a lifetime of compulsive behaviors. Compulsive movie viewing. Compulsive weightlifting. Compulsive eating. Compulsive gambling. Compulsive self-harm, porn watching, chess playing, fiction writing, sexting, weed smoking, lying. Most of all, compulsive drinking. Anything to distract my mind from what it contained. 

For years, my wife encouraged me to see a doctor about my social, emotional, and addictive issues, making it clear that she loved me because I was weird, that I had nothing to be ashamed of. She stressed that I needed to explain everything, even the embarrassing stuff. Like the head punching. The strange obsessions. The rocking and humming when I was overstimulated at night. That this had all been going on since I was a little boy. Eventually, when I was 35, I told a psychiatrist everything and was diagnosed as autistic. This news, though difficult to deal with at first, has allowed me to forgive myself for the strangeness I’ve always wanted to erase. 

Forgiveness has softened my writing style. Before I knew I was autistic, the tone of my writing was vicious. I explicitly hated myself, and it was unpleasant to read. It was also reductive, as hatred always is.

From this softer perspective, I’ve felt safe to explore things I’d spent years attempting to eradicate from my head. Toxic friendships. Repressed queerness. Severe social problems. My complex love for my father. These are the stories I was supposed to have been writing all along, and I no longer feel, while writing, like I’m grasping around in the dark. Instead, I’m sitting in a sunlit room and simply naming what I see. 

Finally bearing witness to my own life has been significantly more healing than medications or therapy. Every prescribed medication has had unendurable side effects. Therapy gives me brutal anxiety. But that’s okay. I’m finding peace just by envisioning myself through a forgiving lens. 

At the beginning of Eternal Sunshine, the memories of Clementine being erased from Joel’s brain were the types of memories we’d all like to erase: toxic moments; fights; ugliness. But then—and here is where Joel realizes he wants to call the whole thing off—the memories become tender, sweet, warm, good. I’ve always taken comfort in this idea: that bad aspects of the past are intrinsically linked to good aspects, and that to erase one would be to erase the other. Eternal Sunshine suggests that the ugly and the beautiful are parts of a whole, and that love—for yourself, for your partner, for your friends, for your family—requires you to acknowledge and embrace the ugly, so that you might also acknowledge and embrace the beauty. 

I used to be frustrated with how firmly difficult memories of my father remained implanted in my head. But now I’m glad they’ve stayed. If I had erased them, I would have erased Dad, and with that erasure, I would have lost memories I’d never want to forget. Like that time in high school when, mostly thanks to my talented teammates, I led our offense down the field and threw a game-winning touchdown with no time left on the clock, and Dad—along with the rest of the crowd—stormed the field, found me in the fray, punched me lovingly in the chest, and said, with tears streaming down his face, “You clutch mother son of a gun, you.” A combination of words I’ve never encountered elsewhere, which translate, in the world of my head, to this: I can’t believe you pulled this off even though it’s all so hard for you, John Paul.

Or the time in college when I’d gambled away all my money and racked up a few grand in credit card debt, and Dad cracked open my bedroom door and said: “Listen, John Paul. If you don’t quit gambling cold turkey I’m going to get you professional help.” I said, “Okay,” and he said, “Okay.” Thanks to that tiny exchange, I was able to stop playing cards. All because Dad said aloud for the first time—and one of the only times—that he knew I had problems, and he wanted to help me. In the past, I resented how infrequently Dad would acknowledge my struggles. But now, post-diagnosis, I don’t want a single thing to be different about Dad. His brain contains something ineradicable and restrictive that makes intimate conversations with me incredibly difficult for him. He cannot help this, just as I cannot help so many things about myself. And therefore I forgive him. 

I’m also glad for the memories of being a socially stilted loner. An obsessive fan. A lying drunk. If I had erased these ugly things, I would have also erased what’s beautiful about me. Namely, this: I’m strong. I’ve managed colossal problems all by myself. I’ve stimmed through thousands of sleepless nights without understanding why my body was quaking. I’ve memorized how to carry myself through complex social situations so that my discomfort remains mostly hidden. I’ve learned to use my hyperactive mind to generate levity and happiness in others. I’ve developed the wherewithal to articulate my suffering in writing. And I’ve done all of this, until very recently, in the dark.

John Paul Scotto’s work has appeared or is forthcoming in The Sun Magazine, Gulf Coast, December, and elsewhere. You can contact him here. 

Editor: Carolyn Wells
Copy editor: Peter Rubin

This story was funded by our members. Join Longreads and help us to support more writers.

Adam Reiner | Longreads | June 13, 2023 | 4,992 words (17 minutes)

The hospital room is full of strangers. I do my best not to look worried and take a deep breath, inhaling the antiseptic odor that permeates the air—a sterile cologne of surgical masks, latex gloves, and industrial-grade cleaning solvents. Worry is the enemy of hope, and cancer spreads faster in the crevices where hope slips through.

My uncle Robert is propped upright in the hospital bed in the center of the room, leaning limply to one side like a resting marionette, awake, but looking like he hasn’t slept in days. Malignant tumors are blooming along his spine like mushrooms on a log, which makes lying on his back incredibly painful.

A square-shaped cake studded with plump, bright strawberries rests atop a tray stand at the foot of the bed. The generous layer of vanilla frosting reflects the fluorescent light above like a moonlit snowdrift. The longer I stare at it, the more the cake’s soft edges blend into the stark whiteness of the hospital walls. A tangle of shiny helium balloons sways on the nightstand.

It’s my uncle’s birthday. We’re all standing in a semicircle around him wearing adhesive identification tags from security. It feels awkward, like a company mixer. One of the strangers passes me a Styrofoam cup filled with tart sparkling cider. I wish there was alcohol in it.

A plush doll of Pope Francis lies on the blanket next to my uncle. The pontiff had recently traveled through Philadelphia—where the hospital is located—only the second papal visit in the city’s history. Robert was too weak to attend the procession but had wanted to go, a surprise given he wasn’t a particularly religious person, nor a Catholic. The souvenir was meant as a joke, but the doll never wandered from his bedside.

Robert’s cancer is rare, a soft tissue sarcoma that formed on the crown of his left ankle three years earlier. Doctors amputated his leg from the thigh down to stem the tide. He’d been in remission for months, but now the cancer is everywhere. Over the summer, he consulted sarcoma specialists at the Abramson Cancer Center, and after weeks of commuting from New York City for radiation treatment, he and my aunt Terri took refuge at the nearby Kimpton Hotel Monaco. 

The strangers in the hospital with us are hotel employees. They brought the cake and all the party favors. Kayla, the hotel’s front office director, flashes a cherubic smile. She has soft, bronze skin and round cheeks that dimple slightly like those of a mischievous toddler. Her voice is raspy with the deep timbre of a jazz singer. “Don’t worry, we take very good care of your uncle whenever he’s down in Philly,” Kayla says, winking at Robert. Terri gently adjusts the pillows behind Robert’s back, maneuvering his frail body into a more comfortable position. He winces a little then goes back to reading the pile of birthday cards that are strewn about the bed. 

I introduce myself to Roshid, the portly and affable concierge, and the bellman, Maurice, who they affectionately call Coach. Roshid puts his arm around Robert and sings a few bars of one of his favorite pick-me-up songs, “Games People Play” by The Spinners:

Roshid presents Robert with a special mixtape of his favorite soul and jazz music, along with a custom-printed photo book. Coach pulls a leather football out of his long black trench coat, signed by all the members of the bell staff. “I doubt I’d be much of a force on the gridiron in my current condition,” Robert says, catching the shovel pass from Coach and looking down at his missing appendage. “Definitely not the kicker.”

Before his illness, Robert had a full head of black curly hair, wound in tight, springy coils like a poodle. He’d lost all of it during chemo, but it had begun to grow back in sporadic, directionless threads like matted shag carpet. His face was gaunt and his cheeks sunken, but his smile still had the same paternal warmth. 

When I was a kid, my uncle’s visits were like holidays. My sisters and I would climb up on the green velvet couch by the bay window in the living room overlooking the driveway. As soon as we’d see him pull up, we’d run outside and bum-rush the car before he could turn the engine off. In the mornings, we’d barge into the guest room where he slept and violently wake him up by jumping all over his bed. He didn’t visit often, so we savored every moment. Seeing him lying there in the hospital, I felt the urge to vault onto his bed again, wishing I could somehow wake him up from this nightmare.

Kayla had arranged for the chef of the hotel’s restaurant to prepare a strip steak, one of Robert’s favorite items on the dinner menu. He devours it out of a cardboard takeout container while Kayla neatly divides the birthday cake into even slices. After an hour or so, we share warm hugs and say our goodbyes. Although the thought lingered in the back of all our minds that day, none of us knew that it would be my uncle’s last birthday.

The Hotel Monaco opened in 2012, an opulent 268-room hotel located in the historic Lafayette Building overlooking Independence Hall, a stone’s throw from the Liberty Bell in the heart of Philadelphia’s Old City. The 11-story Greek Revival-inspired tower was built in 1907 by the estate of the late financier and philanthropist Stephen Girard and named after his friend Gilbert du Motier, the Marquis de Lafayette.

The facility served as office space for over a century, but after sitting vacant for several years, Kimpton transformed the building into a luxury hotel. The interior is accented with nautical elements—a giant crystal galleon in the entrance, compass-themed carpeting, and porthole-shaped mirrors inside the elevators—an homage to Girard’s seafaring days. The hotel painstakingly restored the façade, preserving many of the building’s original architectural elements, like the towering Corinthian columns that guard the entrance and the stone gargoyles ensconced in the cornices.

Terri and Robert discovered the Monaco after visiting several other hotels in the area on foot, my uncle hobbling on crutches in the scorching late summer heat. With medical bills piling up, the hotel was more extravagant than they could afford, but they needed accommodation for two weeks while he started a new round of radiation. When they arrived, Kayla welcomed them graciously from behind the front desk and checked them into a handicap-accessible room.

The next morning, Terri took the elevator down to the lobby for the complimentary coffee service. The urns had already been dismantled, so she approached the front desk to see if it was possible to have someone deliver coffee to the room. Kayla recognized Terri from check-in and said she would send someone up right away.

As she did with many new guests, Kayla asked why they were visiting Philadelphia. “My husband has cancer,” Terri said. “We came here to start radiation treatment.” After a long silence, they locked eyes. “Is he going to be all right?” Kayla asked. “I don’t know,” Terri said, with a tear in her eye. “I really don’t know.”

Terri explained their commute to consult with specialists at the Abramson Center and the arduous schedule of medical appointments ahead. The travel was taking its toll on Robert. Their room was comfortable, but he hadn’t slept at all the night before because of debilitating back pain.

When they returned later that day, the bed was covered with brand-new pillows. Kayla had been to a local department store and purchased a variety of head and neck pillows with her own money. She had also arranged for room service to deliver a basket of wine and cheeses. A valet left a selection of relaxing bath products for Terri and installed a coffee machine, so they wouldn’t have to worry about missing the morning coffee downstairs again. Personalized notes from staff were scattered around the desk wishing Robert a restful stay and a speedy recovery.

As word of my uncle’s tragic circumstances spread, everyone who worked in the hotel knew their story. The doormen greeted them with hugs every time they returned from doctor’s appointments, always inquiring with genuine concern about my uncle’s health. “Those hugs from the doormen gave me the inspiration to get through the next day,” Terri told me recently.

When they returned in mid-September for another round of radiation, checking back into the hotel felt like a family reunion. Kayla upgraded them to room 601, a much more spacious suite. They only expected to be in town for a few days, but an MRI revealed the source of his excruciating back pain—new tumors on Robert’s thoracic spine—forcing them to extend their stay.

Roshid, the concierge, caught wind that they were running out of clean clothes and snuck a pair of my uncle’s pants out of his closet to check his size. He bought three extra pairs of khakis from a nearby Old Navy store—again with his own money—and had the pants hemmed and altered to remove the left leg to suit Robert’s amputation. Before they returned to the hotel, and without a word to anyone, Roshid hung the altered pants in his closet.

“At that point, I didn’t even see him as a hotel guest anymore. I saw him as my friend, somebody who needed help,” Roshid says of my uncle. “It humbled me to know that someone like him was walking the earth. He was a genuinely good man.” Robert and Terri returned to the room later that day, flabbergasted to find the closet filled with the new tailored pants. 

In late October, after the staff threw Robert’s hospital birthday party, Terri asked to meet with James, the hotel’s general manager. James is a man of very few words, but he chooses them carefully. As a point of pride, he prefers to operate in the background, mindful not to upstage his team. Terri was concerned that she wasn’t doing enough to show the staff appreciation. She hoped that James might have some insight into how she could reciprocate their generosity. Should she be tipping them more? James listened intently, nodding along without answering until Terri finished speaking.

“How do you like your room?” James asked with a sheepish smile. “I love it,” Terri said. “It’s bigger than our apartment in New York City.” It wasn’t true, but she wanted James to know how much she appreciated being upgraded to a larger suite. As Robert’s condition deteriorated, Terri hadn’t been able to teach as many yoga classes, so financing their trips to Philadelphia was becoming burdensome.

“It’s yours for as long as you need it,” James said. The next day, he notified Kayla that the hotel would stop billing room 601, effective immediately. The Monaco would also extend heavily discounted room rates to family members so that Robert would be surrounded by loved ones whenever support was needed.

Kayla couldn’t wait to share the news with Terri. “I started crying,” Kayla says. “I called Terri, and we both started crying.”

I questioned James about his decision over the phone recently, wondering if it caused any controversy. “The financial piece didn’t matter anymore, so why should they have to worry about it?” he said, not wasting any words. “We decided to just make that go away.” From that day on, Robert and Terri never received another bill from the Monaco. The hotel established a standing reservation for room 601 under their name to ensure that the suite would be available to them at a moment’s notice.

The joy of staying in a hotel lies in absolving yourself of the responsibility for maintaining order and cleanliness. Every time you return to your room, your messes are untangled by an invisible hand like sorcery. Linens are always fresh. Hand soap and tiny shampoo bottles regenerate like magic.

All humans are born with a deep, primal anxiety about self-care that begins the moment we’re jettisoned from the womb and detached from the umbilical cord. The world’s finest hotels quell these anxieties effortlessly. They dote on us like devoted mothers, with staff that anticipates our needs and makes everyone feel at home.

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Truly great service demands profound selflessness and integrity. That isn’t teachable. Money affords luxury, but even the most obsequious service rarely makes guests feel seen. That’s because transcendent hospitality is a more profound connection, earned through mutual respect and an equitable exchange of sacrifice for appreciation. 

The etymology of the word hospitality is the Latin hospitalitas—or the English hospital. Checking into a hospital is, obviously, far less luxurious than an overnight stay in a five-star hotel, but it can be 10 times more expensive. According to a 2022 report by The Commonwealth Fund—which conducts independent research on health policy—the United States spends more than twice as much on medical care compared with 38 other high-income nations. Meanwhile, we boast the worst outcomes, the highest rate of citizens with multiple chronic diseases, and the greatest likelihood of dying prematurely from avoidable causes.

The prohibitive cost of health care leads Americans to routinely neglect preventative care and leave grave illnesses untreated. Extended hospital stays are one of the most common causes of bankruptcy. Yet, despite the cost, service in medical facilities can be perfunctory, rote at best. The choice between dying in a foreboding hospital room or a luxury hotel suite is an easy one, but, of course, most never have that luxury. 

Robert spent Thanksgiving confined to an inpatient rehab facility. A life-threatening surgery to remove spinal tumors—requiring hours on the operating table and multiple blood transfusions—meant weeks of physical therapy to regain his strength. 

The day after Thanksgiving, Roshid’s mother sent him with a care package of leftovers: turkey, mac and cheese, and other holiday trimmings. “She told me: ‘Now, you tell that man that we season our food here,’” Roshid says, adding, “Unless he was a good liar, he tore that food up.”

By December, their trips to Philadelphia grew longer. Terri and Kayla would often convalesce in the hotel bar over a glass of wine and a cocktail at the end of a long day. Kayla was managing personal trauma of her own, shuttling back and forth to Delaware to care for her ailing father, a military veteran living on a modest pension, who was battling alcoholism and early-onset dementia. 

Early the next morning, Kayla met with James in his office to discuss a contingency plan—installing a hospital bed inside room 601, so that Robert could spend his final days in the hotel. No one dared say the quiet part out loud: What would happen if he died in the room? But they all knew it was a possibility.

The engineering team removed the king-size mattress and box spring from their bedroom and replaced it with a rented hospital bed. The adjacent common area had a fold-out couch that could accommodate attending medical staff. By the time Robert returned to the hotel, the suite had been transformed into a hospital room. Terri hired nurse practitioners to monitor Robert’s health during off hours when she needed to rest. 

I took the train down from New York that week to visit him. He’d lost so much weight that his body seemed hollow, like paper-mache. He didn’t speak much, and his gaze was dull. At times, I couldn’t tell if he recognized me. He had a tube threaded through his nostrils to a nearby oxygen tank and was heavily sedated on morphine. Some days I would sit in silence for hours while he slept. If he was awake in the evening, he watched episodes of The Voice. I wondered how a frivolous reality show competition could matter to someone so close to death, but I suppose he welcomed the distraction.

One night, near the end, Robert and Terri watched a movie together in the bedroom. Terri lay down next to him on a rolling cot pushed flush against the edge of his hospital bed. She was happy that there were no machines creating distance between them. They watched in silence, holding hands in the dark. When the movie ended, Robert told her he didn’t want to eat anymore. “It’s okay,” Terri said, “you don’t have to eat.” The next day, his condition severely worsened, and Terri called an ambulance to transfer him back to the hospital.

Kayla remembers seeing their hands clasped through the rails of his hospital bed. “I saw what I felt was the purest form of love that I had ever seen,” she tells me. “Watching them in that moment, it was like nothing else mattered.” She remembered Terri telling her about meeting Robert on the beach. How their love affair was kismet. Fate brought them together, and fate tore them apart. Though their relationship was fleeting, everyone around them could feel the deep spiritual energy they shared and were drawn to it. Robert privately described their relationship as his version of Eat Pray Love. The kind of romance you only read about in novels.

Back in 2010, Robert was healthy and practiced yoga regularly. He had never been to Tulum, never even heard of it, in fact—but a friend suggested it as a tranquil getaway where he could refresh and clear his head during a contentious divorce (that was costing him his sanity and thousands of dollars in lawyers’ fees every month). He’d given up on the idea until, sitting in a coffee shop, he overheard a random couple mention how much they loved the Tulum beaches. It must be a sign, he thought. He booked a last-minute flight, driving miles out of state to renew his expired passport.

Terri adored Tulum. She’d attended yoga teacher training seminars there but never alone, always with work colleagues or friends. Her family typically gathered in Florida for the holidays, but this year they celebrated early. So she decided to spend a week in Tulum by herself to focus on her yoga practice.

They both arrived at the yoga studio at dawn, unsure which room the class was being held in that day. After a brief conversation outside, they went in and set down their belongings next to each other. Robert laid out his mat and assumed a headstand, a pose he’d recently mastered. Terri assumed he was showing off, but she still thought he was cute.

After class, they continued the conversation. Robert was staying at a hotel nearby, and Terri mentioned how much she loved the restaurant there. “Would you like to join me for lunch?” he asked. “Okay, what time?” Terri said. Robert looked at an imaginary watch on his wrist. “How about noon?” They ate lunch overlooking the beach, chatting the day away as the frothy waves disappeared into the parched sand, exhaling a briny mist into the air. As the tide ebbed, the sun hovered above the shoreline, casting a blanket of warm shimmering topaz across the horizon. They met again for dinner and spent the night walking along the ocean under the stars. Terri likes to say that the lunch never ended. 

While they soaked in Tulum’s majesty, a massive snowstorm shut down all the airports along the Eastern seaboard, rendering air travel nearly impossible. When Robert was notified that his flight was canceled, he immediately texted Terri that he needed to stay in Mexico for a few more days. It was late, so she texted back her room number and said she’d leave the light on for him. They spent the remaining days and nights together as though their time had never been interrupted until Robert was finally able to book a return flight home. 

When they said farewell, Terri doubted she’d ever see him again. Robert was still anxious about his divorce. But they continued to talk over the phone every day. Robert flew to Cleveland to see Terri just two weeks after leaving Tulum. They traveled back and forth to each others’ cities over the ensuing months before Terri eventually moved to New York to be with Robert permanently. They found an apartment in a quiet neighborhood in Brooklyn, and she found a job teaching yoga in Tribeca.

His cancer diagnosis interrupted the fairy tale two years later, but by then their bond had grown stronger. In March 2015, between debilitating rounds of chemo, Robert married Terri in a quiet ceremony inside the office of the city clerk in lower Manhattan. He looked handsome in a black tuxedo with a red rose boutonniere and a backward black Kangol hat concealing his hair loss. Terri looked angelic in a flowing silk wedding gown with a white faux-fur shawl she borrowed from her sister and strappy blue suede heels. For a moment, when they kissed, the cancer disappeared. As sick as he was, it was one of the happiest days of his life.

On Christmas Eve, my cell phone rang. I was on my way to my restaurant job and didn’t even need to look at the screen to know who it was. Terri had warned me that Robert might not make it through the night. The sidewalks were icy, and the coarse salt scattered on the sidewalk was crunching under the soles of my shoes.

“He can hear you,” Terri said softly. “But he can’t answer.” It was hard to concentrate over the rumbling garbage trucks and police sirens wailing in the distance. Terri’s voice wavered a bit, but the cadence of her words was soothing. “I’ll put the phone up to his ear in case there’s anything you’d like to say,” Terri said. I could hear his oxygen tank wheezing in the background.

I cobbled together a few sentences but struggled to find the right words. My uncle was my hero, my rock, my brother. After my mother died when I was 17, he became a surrogate parent. My sisters and I nicknamed him “LG”—short for legal guardian. “I love you, LG,” I told him, covering my other ear to drown out the traffic.

I hung up feeling like I’d failed an audition. I broke down crying on the street corner, wishing I could transport myself to his bedside. There was so much more to say. I never told him how scared I was of losing him because I didn’t want to burden him with my fear. He never wanted to burden me with his either.

Robert passed away quietly in his hospital bed later that evening, leaving behind his wife and 10-year-old daughter from his previous marriage. He was 57 years old.

We often mischaracterize cancer as a test of will—a battle with tangible wins and losses. Before his illness, Robert was much physically fitter than me, even though he was 16 years my senior. Unlike most life-threatening diseases, cancer doesn’t need to exploit a person’s deficient health. It destroys life indiscriminately.

“I’m not a doctor, but I’m pretty sure if you die, the cancer dies at the same time,” the late comedian Norm Macdonald once famously noted. “That’s not a loss, that’s a draw.” Macdonald, who would eventually succumb to cancer himself in 2021, understood how naïve it is to assume that living or dying of cancer is determined by one’s will to live. Cancer’s violence lies in its willingness to leverage its own survival to destroy its host. It isn’t a fair fight.

Millions of people across the world quietly suffer from cancer every day, their families and their doctors befuddled and powerless to cure them. From the sidelines, we goad victims to fight harder. We tell them: You got this! But then we remand them to sterilized, underfunded medical facilities that provide little comfort to the sick, nor empathy for their survivors. My uncle was one of the lucky ones who, in a new city, found community and love from people outside the medical complex—people who had no reason to provide it other than the purity of their hearts.

A month after Robert died, we held a memorial service at a local church in Brooklyn. He’d befriended the church’s pastor, finding comfort in her counsel. On sunny afternoons, he lounged in the gardens of the church’s courtyard for hours. 

Kayla, Roshid, and Sean—one of the hotel’s doormen—took Amtrak up from Philadelphia together to pay their respects. In front of the congregants and mourners, I shared a passage from one of my uncle’s favorite books, Siddhartha by Herman Hesse. In it, a young Siddhartha stands along the banks of a flowing river, contemplating its secrets: “[Siddhartha] saw that the water continually flowed and flowed and yet it was always there; it was always the same and yet every moment it was new.”

Even without the physical presence of our loved ones, I told those assembled, life’s current pulls us forward like a rushing river, always the same and always new. When I finished speaking, I looked over to see Kayla wiping away tears.

Robert asked for his body to be cremated. He wanted his ashes spread in three places: The first set in an urn at a gravesite in a cemetery upstate where his parents were buried; the second in the flower beds around the courtyard of the church where the sun soothed him. Terri promised to return to Tulum to scatter the rest of Robert’s ashes in the infinite, crystal-blue waters of the Caribbean, along the beaches where they first met—his final dying wish.

To show her appreciation for the hotel’s generosity, Terri developed a mindfulness and meditation workshop for the Hotel Monaco staff, that she could offer for free to all who wanted to attend. The following spring, she returned to Philadelphia for the first time since Robert died.

Addressing a room full of Kimpton employees, Terri recounted her emotional story. She spoke about the stages of grief. How suffering begins as a gaping wound. “According to Rumi, the wound is the place that light enters you,” Terri said. “Our light-infused wounds can become beacons for helping others to heal.” When we let love and light into these wounds, she told them, they become scabs and then, eventually, scars. “In Sanskrit, a remnant of unliberated past experiences is called samskara, an impression or imprint. We carry these scars with us until we learn to liberate their foundation.”

She peered out at the faces of all the maintenance workers, housekeepers, restaurant staff, and management who’d offered strength in her darkest moments and helped assuage her suffering. She was grateful for the opportunity to replenish their strength and resilience as they had done for her. “I’ve learned that part of the healing process is that even though the scar remains, the wound can heal,” Terri said. “I carry that scar with me like a proud warrior.”

Years have passed, but the Monaco staff, both past and present, still hold my uncle’s memory near to their hearts. Kayla keeps a framed picture of her and Robert on her bookshelf at home, a reminder of life’s fragility. “It was a part of my mission to make sure the end of this chapter was peaceful for them,” Kayla says. “If these were his last moments, the only thing that mattered was helping them find the peace that they both deserved.” She works as a general manager for Equinox fitness clubs now and frequently shares the story with new team members to remind them about the power of hospitality.

James tells me that Robert’s passing felt like a death in the family, but the experience fundamentally changed how the hotel cares for guests with special needs. “Whenever a situation like this arises and we’re made aware of it, I always immediately think back to Terri and Robert’s time with us,” James says. “We certainly learned from that situation and utilize that in every decision we make for every family that comes here with these types of struggles.”

Roshid puts this knowledge into practice regularly. “There’s a 3-year-old staying in the hotel right now who has eye cancer that’s breaking my heart,” he says. When Roshid found out the boy’s favorite superhero is Spider-Man, he immediately sprang into action. “He and I have something in common because I love Spider-Man too,” Roshid says. “So, every time this kid comes in with his eye patch on, I have a tent waiting for him in the room with some Spider-Man goodies in there.”

He forwarded me an email Kayla sent to the Monaco staff in 2017, recounting my uncle’s heartbreaking story, almost two years after he passed away. She stressed how every guest interaction is not only an opportunity to improve someone’s day but also how those interactions can profoundly alter the trajectory of people’s lives. She changed Robert’s and Terri’s, and they changed hers. “Remember,” Kayla wrote, “there are a million Robert and Terri Barnetts walking around out there. You never know when one of them will walk through that door. So, keep making those moments.”

Adam Reiner is a food writer and editor of The Restaurant Manifesto. He is currently writing a book about dining culture for LSU Press and lives in New York City.

Editor: Carolyn Wells
Fact-checker: Julie Schwietert Collazo
Copy–editor: Cheri Lucas Rowlands

This story was funded by our members. Join Longreads and help us to support more writers.

Dan Musgrave | Longreads | May 4, 2023 | 21 minutes (6,022 words)

I had been volunteering at the ape house for four months before I was invited to meet Nathan. It was December and I’d just spent my first Christmas with the apes. Everyone but the director and I had left for the day. The night sky spilled over the glass-ceilinged, central atrium we called the greenhouse. Despite the snow outside, the greenhouse air was warm and ample. Moving toward the padlocked cage door, I felt light, as if I was about to float up into that dotted black expanse above me, rather than enter a room I’d cleaned feces and orange peels out of hours earlier.

I juggled my keys and the offering I’d brought with me — a tub of yogurt, a couple of bananas, Gatorade, and some blankets. With the two padlocks removed, I entered, sat, and arranged the gifts in an arc around me. Even though I was planted firmly on the glazed concrete floor, I swayed.

In the adjacent room, watching everything I did through the glass portion of a mechanical sliding door, was Nathan. Five years old to my 21. He was stout, wide-shouldered, with thick muscled arms, but almost twiggy legs. Nathan was, simply put, a cool little dude. We studied one another as we waited for my supervisor to turn the key and remove the barrier between us. His eyes were as big and soft as three-quarter moons, always holding a question. Though, more often than not, that question was really a dare.

Sitting in the greenhouse, everything in the world was in alignment. It was right that Nathan would be the first ape I ever truly met. While the adult males still made crashing displays of warning at me, and the adult females mostly ignored me or found me to be a mildly useful, but mostly superfluous, component of the building, Nathan had always welcomed me warmly. I was a new playmate, willing to run back and forth along his enclosure in games of chase, over-eager to please.

A racking ka-chunk filled the greenhouse as the mechanical door separating us was activated. It rocked and then jerked to the side in its steel track. The doors had been created for use in prisons, originally, and they were always jamming on us. The third or fourth time we called a repairman out, he’d said we needed to take it easier on them — they hadn’t been designed to open so often.

My breath stilled. I saw Nathan behind the door, then I saw the night sky. Nothing in between. I was on my back like some upturned turtle, my legs still crossed but now pointed at the stars. He was a heat-seeking missile. The impressions of both his feet were on my chest; the last breath I’d taken in a Homo-centric world evicted from my lungs. When I levered my body upright, I saw him waiting, peering at me from a foot or so away, head cocked. The air that rushed back into me was sweeter, lighter, than what had been there before.

“Hi,” I said, grinning.

I guess I passed the test. He plopped himself in the bowl of my still-crossed legs, plucked the lid from the yogurt, and began to pour the thickness down his throat. He peeped contentedly and put his spare hand around the back of my neck. Where everything had been so fast that I couldn’t take it in seconds before, now time was suspended. He smelled so clean, like construction paper and newly fallen leaves. We sat there, me running my fingers through the hair of his back, he slurping yogurt. Eventually, he pulled the blankets into a corner to construct his night nest. The director told me that meant it was bedtime. I told Nathan goodnight and we parted for the evening. 

I’d initially applied to the ape house because I believed in their stated scientific mission: to communicate across the species boundary and illuminate the nonhuman and human mind. I had been one of those children at the zoo that try to make the right sound to get the animals to speak back. Now I was that kind of adult.

Not long after meeting and warming to the eight bonobos who were essentially my bosses, the science became much more personal. I was having trouble at college. My small rural campus felt like my cage. Though the school marketed itself as a home for outcasts looking for their place, I never felt entirely welcome there. I was shy and anxious to the level of needing therapy and medication (not receiving either), but I looked like a jock. When I did venture beyond my dorm room on weekends, I usually drank until I could approach and socialize with others (read: too much). 

In the ape house, amongst the bonobos, I found the refuge my alma mater had promised to be. There, nothing rested on my ability to wrench words from my throat in front of my peers. In fact, my trend toward quiet was an asset while my athleticism was less intimidating than it was an invitation to play. For the first month, I tentatively hoped that the apes would have me. But after that month, had the humans offered me a room in one of the unused enclosures, I would have abandoned my degree and moved in with relief.

In my first weeks there, I asked my supervisor for tips on how to interact with them. “Just treat them like you treat me,” she said. “Speak to them, not about them. Assume they’re listening and can understand. They are and they can. These are people in nonhuman bodies and they know it.” I could handle that. I was familiar with the fallacy that bodies accurately matched the selves they contained.

Likewise, it was comforting to be a part of a project that sought the person in the ape, to whatever degree it was present, rather than force the transformation. My research into the field showed that other ape language experiments had not been so accepting or accommodating. In the majority, the test subjects were taken from their mothers as infants and placed in human homes or labs. This was considered scientific. Rigorous. Rearing was the independent variable. To allow these subjects to remain with their birth families would be a confound.

While that December evening was my first time crossing the divide between Pan and Homo, Nathan had already been doing it for years. He was the third generation and fourth individual entrant into this ape language experiment. His upbringing was unusually casual for an experimental subject, and he spent nearly equal time with both his ape and human family. On a cultural spectrum from wild-caught bonobo (his grandmother and father), to human-reared language apes (his mother and brother), to human experimenter, Nathan sat exactly at the midpoint. He was the fulcrum upon which worlds balanced. The hope for him was that, under the direct tutelage of his mother, and with frequent but unstructured interactions with humans, he would show just how self-sustaining ape symbol use could be across generations. The avoidance of structure was the scientific methodology.

As poetic as I found it that Nathan was my point of first contact, he was simply the logical choice. He was small enough to handle — even if he was already stronger than me — and young enough that it was unlikely he’d attack should I misstep. Culturally, he was also optimally situated to understand my inexperience. He was an interpreter, an emissary. He was my bridge into the ape world.

I got no more training for being with Nathan than that first night. For every meeting thereafter, the only suggestion the director gave me was that I should always use the symbols — easily quantified, discrete images. One per word. There were nouns, verbs, and even references to abstract concepts like time and feelings. The director thought maybe Nathan would help me learn them faster.

It seemed, at the time, that the only complication in Nathan’s life was his big brother, Star, who was so perfect it was offensive. Star was irritatingly handsome, with a smile that smoothed over any and every slight. He spit on me daily but blew kisses to all the female staff. Like many beautiful people, he was given credit for being smarter than he actually was and better behaved than he ever cared to be. Star’s shadow was long and hard to escape. So, if Star showed an interest or proclivity for anything, Nathan either dismissed the activity outright or tried to do it harder/faster/better/stronger than anyone had ever done it before. The symbols were one of these things.

Nathan used the symbols like my father uses text messages, infrequently, out of the blue, and with suspicious competency. I often caught Nathan in the corner of a room, his back to the door, symbol board in his lap. He’d be touching it, talking to himself. Thinking out loud, as it were. Other times, he’d saddle up before one of the touch-screen computer stations containing digital versions of the symbol board and rattle off a string of 20 or 30 symbols so fast the computer got bogged down in its processing and lagged in displaying them. I suspected he always meant exactly what he said, though I had no way of scientifically confirming this.

We ended up with a routine. I pretended that we were part of the experiment, doing important research, and he pretended not to understand what I was saying. A normal conversation between us using the symbols would look something like this:

Me: NATHAN YOU WANT FOOD, QUESTION?

Nathan somersaults into my lap, right over the symbol board.

Me (after extracting the board from under him): WANT FOOD, QUESTION?

Nathan pushes the board away. Hops up and runs away after biting me on my forearm. Playfully, but not without pain.

Me: I GET APPLES, QUESTION? GET CELERY, QUESTION? GET MILK, QUESTION? 

Nathan approaches, holds my gaze from under his robust brow. I put the symbol board on the floor between us. He gestures, finger crooked, knuckle between his teeth. [Bite.]

Me: “Nathan, can you use the keyboard please?” 

Nathan, hand snapping out: CHASE.

He springs away at full speed, a single fart helping propel him away down the hallway. 

Me, following: “Okay, but no fair using rocket boosters.”

I wasn’t as diligent with the keyboard as I could have been, in part because I never had difficulty simply talking to him. In terms of receptive, rather than productive, competence, Nathan could handle it all. The rub was that he only listened when he felt like it. I often talked to him as I would any other person, except I was more honest and open. I started, genuinely, to consider Nathan one of my best friends.

He helped me work with the other apes, too. I would lay out maneuvers for shifting the apes between rooms and he would facilitate. He’d lead his family, including his grandmother, Worry, and his half-brother, Momo, through the door I’d indicated, then slip back through at the last moment, separating them in the new room while he and I got space to interact. 

Me: “Okay, here’s the plan. Nathan, I want Worry and Momo to go to the greenhouse, but I want you to stay here so we can see each other and tickle and chase. Can you help me get them to move and you can stay here?”

Nathan peeps excitedly, and Worry and Momo echo him.

Me: “They will have really good blueberries and lettuce and Gatorade in the greenhouse. We can have some surprises over here. Ready to help me move them? Okay, here we go.”

Nathan sits by the door to the greenhouse, enthusiastic. He peeps to get the others interested. I operate the door and the others follow him into the transfer space between rooms. I start to close the door. At the last moment, Nathan slides through and sits alone in the room.

Me: “Nathan you did it. Great work, man.”

Nathan runs to the mesh for a tummy tickle.

This went both ways, as the other apes used his skills, too. It was hell on data collection. I can’t even count the number of times he ruined an experimental session because the non-language bonobos would drag him to the computer by the hand and wait while he performed their sets. He’d tap at the screen while they sat at the reward dispenser eating fruit chunk after fruit chunk produced for his correct answers.

One afternoon, after we had become full partners in crime, Nathan and I lounged in a pocket of space between the roof of the walk-in fridge and the kitchen ceiling. Sunlight floated lazily through the kitchen windows, warming the stainless steel of the countertops and cabinets, making the room toasty and our eyelids heavy. It was late spring, months since we’d first met, though it felt longer. Something about being with the apes made time less distinct.

When it was me and Nathan together, I could forget I was an employee and Nathan essentially my work. Our relationship had grown through months of one-on-one encounters. With each visit, we gained new privileges until there was hardly an inch of the building not available to us, so long as it wasn’t occupied. It could just be me and my friend. He, a boy, and me, his cool but slightly irresponsible guardian. Gone were my problems at college. Gone were the impenetrable complexities of human relationships. My anxiety around humans was inversely proportional to my comfort in the cage with the bonobos. Apes made so much more sense to me, Nathan most of all. It eventually got to the point where I stopped going to school, seven credits short of a degree, to work with the apes full-time.

Between us in our nest atop the fridge was a pile of empty Diet Coke bottles, Go-GURT tubes, and half a bag of plump, red grapes. There were plenty of vegetables in the fridge under us, but they held little appeal. When Nathan and I went to the kitchen, we were raiders. We descended like locusts and went straight for the good stuff.

The kitchen was our favorite place to go. It held not just food, but choice. There, Nathan could eat whatever he wanted, not what was brought to him by a caretaker. However, the kitchen was, ultimately, a human place, and as a result, I wasn’t able to fully relax. There were all these reminders of how human spaces were not made to accommodate us. Blenders with stainless steel blades, kitchen knives, toxic cleaning agents, gas stove burners. Dangers everywhere.

Nathan dropped the last Diet Coke bottle between us and burped. I retrieved a paper board with the symbols on it. “Nathan,” I asked, pointing to symbols to accompany my words.

WANT MORE COKE? WANT APPLE? 

He pushed the board away, then pulled me in for a hug and tickle. If anything, Nathan taught me how impossible the science of ape language was to perform. His whole body was an instrument of expression. He manipulated the space between us like prose, varying the pressure of his teeth on my skin to change the tone of a message, his every touch held its own grammar as questions and statements. Nathan didn’t perform language in a way that would be easy to parse and study, he embodied it. He performed it in the way of a dancer. He lived it.

Nathan preferred gestures. Words filled him up and he had to expel their captive energy through his limbs in a way the symbols couldn’t facilitate. Crooked index finger between his teeth: Bite me. Point at keys hanging from my belt loop on a carabiner: [Keys/Open]. Crooked middle finger twisting at a door: [Open/Unlock]. Hand raised to his neck, motioning as if to let steam out of an Oxford shirt: [Collar].

If he gestured for a collar, I’d ask, “You want to go outside?” Or “You want to go to the kitchen?” He would vocalize in response, then sit with his chin raised to expedite the process. I didn’t really like the collar, but whenever I could, I looped the thick nylon strap around his neck and locked the full-sized padlock that secured it. The heavy pendant hung between the ends of his collarbones. He inspected it with his fingers, adjusting to its heft. The thing was incongruous with this person, this child. 

He asked for it every day I saw him. Often repeatedly. Switching between that gesture and the one asking for my keys. He wanted, more than just about anything else, to traverse the boundaries between ape and human space. For every step I took into his world, he was equally desperate — more so, even — to take one into mine. Every time I successfully begged, cajoled, and (sometimes) argued with humans for the opportunity to enter his world, he would greet me by asking for me to take him back to where I’d come from. Get me out of this place, he seemed to say.

So, I traded my discomfort with the collar for the chance to make him happy. He traded the cage he lived in for the one he wore around his neck. The easiest days were the ones when I didn’t have to say “no” to him. When he asked for keys or a collar and I could say “Of course” and we would go gorge ourselves and loiter on top of the walk-in fridge. 

I lived for those days of forgetting. The times when we found the right balance between the demands of our worlds and our own desires, but I was lucky if there was enough staff to accommodate us having half the building once every few weeks or so.

Though Nathan had been raised to be both bonobo and human, his was a secondary type of personhood. Not like that of a human child. He could enter the kitchen, but only on a leash. He was taught, but could not go to school. He had the language to ask to go outside, but he could never venture beyond the walls of the facility. I kept trying to find ways to make up for that disconnect, but, as a frustratingly junior member of staff, I couldn’t.

One day we lazed on top of the fridge until Nathan stirred and descended. My thoughts came slow in the sun-warmed room. I thought he wanted a different kind of snack until he moved toward the sink. His head disappeared as he ducked under with his leash dragging behind him.

“Nathan, c’mon man,” I said. “Nothing good down there.”

I scrambled down, imagining a montage of him ingesting jugs of cleaning solvents or blinding his eyes with toxic sprays. I approached but before I could reach him, Nathan hung from the sink lip, reared back, and kicked the garbage disposal with all his considerable muscle. He planted several rocking blows to it before I got him turned around. 

The spell he cast that made me forget the human world dissipated with the thuds of his feet against metal. I was a human and, worse, an employee. He was an ape then. It hurt to be reminded of that.

I didn’t want to get in trouble. I couldn’t afford to replace the garbage disposal. Worse, I couldn’t afford to have my time with Nathan revoked or reduced to less than it already was. But even more than that, I wanted to prove that we had something. That our connection was real and tangible. I knew he was special, but I wanted us to be special too.

I pulled him away from the sink, my ears hot. He’d never been so blatantly destructive around me before. 

“What’s wrong with you?” I used the voice I give to my dogs when they misbehave. “No!”

Nathan didn’t meet my eyes. He squirmed away only to plant another rocking blow on the disposal. I pulled him back into position with firm hands on his shoulders.

“No, Nathan. No! That’s bad.” I was near to shouting.

Nathan’s eyes were hard at the corners. He tested my hold once more, paused, then opened his mouth and screamed. He wailed long strings of ear-splitting EEEs. The whole ape house heard him. They barked, sharp, in response. He screamed so hard and so much that within minutes all his skin had broken out in half-dollar-sized hives. I unhanded him and he left my side to go sulk in a corner, screaming all the while.

The director, who’d heard the commotion, joined us after a few minutes. Nathan sprang into her arms and hugged her close, looking at me the whole time. Using his proximity to her and distance from me to express his displeasure. She soothed him and I explained the situation. Before she returned him to his ape family with a dose of liquid grape children’s Benadryl in him, I apologized. I gave him some M&M’s and a special juice box and, after a pause, he offered his back for a tickle. He would accept my offering, but he wanted me to be sorry for longer.

“Disagreements,” the director said after returning him, “are part of having language.”

The hives were no surprise to her. Nathan often got so worked up that his body rebelled. As if his emotions, same as his words, were too strong for their little container and pushed against his skin to escape.

They were the main reason why we didn’t notice when he got actually sick.

The study of ape language is a field of broken promises. Its history is littered with the allegedly well-meaning intentions of seemingly caring people and the tragic, too early passings of their charges. Their failures are made all the more devastating in that, despite what they call the apes — subjects, participants, entrants — they are the failures of parents toward their children.

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Ape language research, at its heart, seeks to investigate the age-old question of nature versus nurture. Since raising human infants in a context removed from all human influence is ethically impossible, they performed the inverse: raising apes in entirely human environments. That has historically not met the same ethical barriers, despite infants being involved in each case.

Take Gua, adopted by a pair of psychologists, the Kelloggs, who had recently given birth to their first child, Donald. The Kelloggs stressed that for any co-rearing experiment to work, the ape must be treated as human in all regards, to avoid bias. As such, Gua lived in the Kelloggs’ house, ate at the table, and generally did everything with Donald. They were inseparable, like twins, and they developed at almost identical rates in everything but their speech. 

Winthrop Kellogg’s original hypothesis, that Gua would develop aspects of human behavior, proved true. What he did not anticipate, however, was that this cultural blending would be a two-way exchange; the spectrum between Pan and Homo traversed in both directions. While Gua grew more human, Donald also took on some of Gua’s apeness, such as extensive biting. The two children met in the middle, the primary contributor to the end of the experiment.

In each ape language study, there is one overriding and unspoken promise — we will give you a new family if you become sufficiently like us (but not if our children become like you). Unlike Gua and others, Nathan kept his ape family. Still, the promise of his life was the same, if the terms slightly altered. It all boiled down to this: We will make you one of us.

No study has yet been able to make good on that promise. No matter what the shape, be it a collar, a mesh enclosure, or a house, there is always a cage around the apes involved. They are never truly welcomed into human society. The humans, meanwhile, get to go home at the end of the day. 

Of the approximately 100 years of other ape language studies, hardly any of the apes had Nathan’s freedom. These apes were almost all taken from their mothers as infants, some as young as 2 days old, and placed in human homes or labs. Nearly all lived short, tragic lives compared to the potential 60-70 years available to them naturally. As if a stark contrast between the mental and physical self invariably tempts tragedy. Kellogg’s Gua was returned to a research center after nine months in their home (pneumonia, 3); Ladygina-Kohts’ Joni ate paint from the walls of her home (lead poisoning, 3); Hayes’ Viki fell sick during the study period (viral meningitis, 7); Temerlin’s Lucy was released back into the wild after living in a human home in Oklahoma for years (suspected poaching, 23); and Nim Chimpsky was “retired” to a research lab, which sold him into biomedical research, from which he was rescued by an animal sanctuary to live as their sole chimpanzee (heart attack, 26). So many either didn’t survive their studies or barely did. The handful of language apes, like Washoe, Koko, and Kanzi who have lived into and beyond their third decade are rare exceptions.

Several months after the garbage disposal disagreement, factors outside our control interrupted our time together. In the human half of the building, new leadership took over, stiffening the rules about contact with apes. Months passed. Then, just as we were about to renew our one-on-ones, Nathan got sick. I saw him daily during this time but it was always through the mesh of the cage. I pushed so far through it to touch and tickle him that it hurt the web of skin between my fingers.

It came out of nowhere. One day his face just swelled up. His eyes shrank to crescents between his puffy brow and cheeks. No one had any answers for it, not even the vet. Every morning I came in, Nathan looked like he had been in a boxing match the night before. We gave him Benadryl and Claritin over and over. It made him groggy, but it didn’t seem to help his swelling. Nothing seemed to help. We eliminated potential allergens. Changed cleaning solutions, avoided wheat gluten, and banned food with certain dyes. All to no effect.

As the sickness swept through him, he maintained a front of normalcy. When he chose to talk using symbols, it still came out in torrents. When he wanted to chase, he ran as fast as he could, even if the run was more of a tumble and the game didn’t last as long as usual. The vet, whose practice focused primarily on Iowa farm animals, visited often. She did her best, but Nathan was a boy, not a horse.

It didn’t go away. I asked that he see a different doctor, a human one. But in this, he was not human enough. There were ape-specific risks of a more thorough workup and, it was assumed, they outweighed the benefits given his symptoms. A full workup would require sedation and transportation and more. Nathan’s father had died two years earlier from complications with anesthesia for an elective procedure and his loss was still fresh in everyone’s heart. 

Over the course of half a year, Nathan’s swelling receded as mysteriously as it had arisen. By the time spring rolled around, he was almost normal, though his hair was a little wirier and his arms had lost some of their beef. His eyes also drooped at the outside, making him look eternally tired. But he was nearly his old self, if more subdued.

By May, with the fields outside bursting with purple, orange, and yellow wildflowers, I finally got the supervisor’s approval to go in again with Nathan. I’d been requesting it for months. Just after I got the green light, however, Nathan stopped eating and our reunion was put on hold. It didn’t matter the meal, he took a couple of bites and set it aside. Then his breathing became labored. He wheezed and coughed so loud I could hear it throughout the building. His energy gone, he spent most of his time napping. I knew I had to see him, so I did.

Nathan was dozing when I entered his room for the first time in over a year. It was late morning. I didn’t ask permission, I simply told the other caretakers that I would need that half of the building.

“Hi, Nathan,” I said as I entered. He was lying on a pile of blankets. He didn’t move at the sound of the door, but as I spoke, he lifted himself and approached. The slump of his shoulders told me just how uncomfortable he was. His swagger was gone. I didn’t think anything could take the strut out of his walk. Now, he was deflated. He hadn’t eaten more than a couple of bites in days.

And yet, he didn’t miss a beat. He hugged me about the legs, slapped my thighs, and sprung away awkwardly. Just like we normally greeted one another, only in slow motion. Now his sprint was more of a lope. I shuffled so I didn’t overtake him. We did one round of this before he led me back to his bed, laid down, and asked me to tickle him. As my fingers probed his ribs, he grunted a laugh that became wheezing and quickly turned into a racking cough. It passed, and he looked at me with his mouth hanging slightly agape as if all the strength required to close it was concentrated at the corners of his wincing eyes. I began to tickle him again, this time softly, but he brushed my hands away.

I shouldn’t have let so much time go by, I thought as we sat there, my back to one wall and Nathan inert across my thighs. It used to take hours before he’d slow down enough that we could relax like this. Today it took barely a minute.

My fingers tentatively massaged him. They met bone much easier than before. The curving mounds of his muscles were reduced, his skin slack. During the worst of his sickness, when the swelling and itching were at their highest, he’d pulled most of his arm hair out. The baldness highlighted his new angularity. I ran my fingers over his bare forehead. His sideburns were plucked clean and what hair was left was brittle stubble, bending and snapping like sun-bleached grass.

Someone brought a scale to get Nathan’s weight for the vet. He didn’t want to move and threatened to bite me when I suggested it. I waited a minute for him to doze off again, then picked him up and carried him to the scale. He’d lost over 20 pounds in under three months.

We spent the remainder of the day resting. With me running my hand over his skin, and him in a near-constant adjustment of his position. Intermittently, I’d leave to get him a popsicle or some juice. I took one of his bare feet in my hand and nibbled on his toes. He huffed one laugh as if to humor me, but nothing more. I brought him M&M’s, but these were too hard for him to eat and he set them aside.

That night, I entered his cage with fresh blankets and a bowl of yogurt, an echo of our first meeting. He tried a bit of yogurt, then put the bowl down next to his bed. I’d been asked to get a blood oxygen reading for the vet with a clip that went on the end of Nathan’s finger. I moved to his side while he slipped in and out of an uneasy sleep and took his hand in mine. A coworker threaded the sensor through the mesh. Before I could clamp the device on his index finger, he woke, lunging and snapping at me. He didn’t get me, but the anger in his movements stung as much as a bite would have. 

I felt like I was betraying him, putting human obligations above his very clear refusal. He let me hold his hand again. This time I just held it. When he seemed to be fully asleep, I tried again. Once it got a reading, I unclamped it quickly, whispered good night, and slunk out of his room.

Eight hours later, he was carried out of the building on a blanket, finally breaking free of its walls, to get a full medical workup. During the night he had briefly gone into respiratory arrest. The risks of getting him checked out were now outweighed by the seriousness of his condition. They carried him by me, sleeping, but with his hands curled and ready, thumbs against the ends of his drawn index and middle fingers. I saw the potential in them. They were poised as if ready to ask for his Collar or my Keys at the very instant he woke.

In the years since I have often wondered what we accomplished in the ape house. What exactly was it that I was a part of? Did those in charge really believe all that they were saying? I thought we were doing it better, in knowing no one ever needed to tear infant apes from their mothers to learn about the limits of language. The other ape language studies had got the question wrong, I thought. They all asked whether an ape could talk if we made them sufficiently in our image. I thought we were asking if we could understand each other as equals. The true test not being in the apes’ ability to speak but in our capacity to listen.

I thought we were different. Better. But, we were not, our bonobos no more equal than the charges of any other study. Our cages and facilities were simply nicer; our methods softer.

So much of my understanding of language, and its limits, came from Nathan. His silences especially. Language is messy and incomplete and variable and profound and decidedly unscientific. There is no single, controllable, independent variable. After all, there are so many things that are beyond the ability of words to express. So much meaning outside that which is merely spoken.  

For example: There was no symbol for CANCER on the symbol keyboard. No one had ever needed to say LYMPHOMA. The lexicon was limited, but HURT was there, and I had never once seen Nathan use it. It wasn’t that he didn’t understand, it was that he would never admit such a thing. He had too big a chip on his shoulder.

For example: The way my coworker’s voice caught on the phone, starting several utterances until “He didn’t make it” could escape, and I had already known what he had to tell me. And the way I made the same stutter stop code of not-quite-shock and not-yet-loss before managing “I’m on my way” in response,  and he had already known that as well.

For example: How the people I passed as I walked through the ape house, hood over my head, made soft, unintelligible noises at me. Emitting contributions to the pall over the building. I kept moving, unsure of whether a response was expected. Unable to make one if it was. I just continued walking toward the van that had taken him to the hospital and back, parked at the other end of the facility.

For example: In the van — the gray — the interior gray — sky gray — world gray — the cold of his hand — he — splayed — the coolness of his forehead — kissing the stubble of his forehead — kissing and muttering — same three syllables — waiting for warmth to return.

For example: The stillness of the building as he was carried in and laid before the glass of the greenhouse where his family waited, pressed against the window, shoulders one against another, crowding together. The silence as deep and absolute as the understanding in his mother’s eyes.

Dan Musgrave was raised by animals in rural Kansas. He is a writer and photographer with a particular interest in the intersections of the human and animal world. For nearly seven years, he did linguistic, cognitive, and behavioral research with captive bonobos while they trained him in the art of being a better person.

Editor: Carolyn Wells

Copy editor: Cheri Lucas Rowlands

This story was funded by our members. Join Longreads and help us to support more writers.

Jessica L. Pavia | Longreads | February 21, 2023 | 20 minutes (5,721 words)

I spent most of my time in his room. Every day the same routine: 15 minutes before the bell rang, 45 at the end of the day. My excuse at first was that I didn’t have many friends. Good friends. But that wasn’t true. Entirely.

When I found myself in his class, the side effects of several friendless, depressive years still clung to my skin. The pull of his bright room, the shining praise he left on my papers, called to the deep aches within me. So I made up excuses for seeing T., my English teacher.

It was my junior year and I was trying to figure out what I wanted, and how to get it. In the mornings, T. and I talked about our previous days, the books we were reading, or the upcoming lesson. I’d meander around his room, glance at photos hanging on his wall, and ask about inside jokes from previous classes written on torn paper pierced onto cork boards. I found out he sang and played guitar in a band with another English teacher, and I made an internal promise to stumble into the bar they played in once I turned 21. We’d glance at each other from across the room, me cradling an emptying beer to prove my age, and we would know: Time had caught up, we could be together.

I wore knee-high socks and short plaid skirts, having stumbled around Tumblr the night before, beginning to idolize Lana Del Rey, Lolita, and nymphs; beginning to follow every blog tagged #teachercrushcommunity or #tcc, accounts with names like youaremyfavoritesubject, teachercrush-tcc, teachersthough.

I read students from around the world recounting their school day, or writing fantasy stories about themselves and their teacher crush. I saw GIFs of teachers smiling down at students chewing on pencils. One user commented: “THIS IS HOW BEN AND I HAVE EYE CONTACT MOST OF THE TIME WHEN HE’S IN FRONT OF CLASS SITTING DOWN.”

Sometimes, I considered writing about T.

My closest friend at the time was Kayla*. We had met years ago, at the snack shop while our brothers played baseball in the background, but I never remembered that. I knew her from eighth grade when we shared English, creative writing, and art classes together. The latter where we talked about Once Upon A Time and doodled hearts around our names alongside the characters’. Creative writing where we wrote into each other’s stories, each other’s universes.

By junior year, she had a deep crush on M., another English teacher up the stairs from T. She talked about him ceaselessly — at lunch, during rehearsal, all night over the phone.

At first, I thought she was deluding herself. The whole thing a disgusting fantasy. I could barely stand, in fact, sitting through lunch period with her going on about M.’s eyes or the way he stood next to her in the hallway.

But she was persistent, and eventually, I bought into it.

I bought into it because I liked having a secret, and loved having a crush. I reveled in the weight of it all, in how risky this business was. I enjoyed the game of seducing T. — the only way I knew how as a junior: Be kind, be interested, be smart. But the biggest reason was T.’s affirmations, which I sucked up like a sponge, how he made me feel smart and seen. He had a soft face and body; he talked about things I liked.

So now, when lunch came, we rushed through the crowd to nestle together at our table and share updates. Kayla was always more open than me, not even looking around the cafeteria to see who could be listening, never checking to make sure M. wasn’t lunch monitor that day, never bothering to use the code names we created.

We obsessed over stolen glances. The moments when T., sitting at his desk — brown hair and stubbly chin, his broad shoulders hunched over his laptop — would suddenly look up and catch my eye from across the room. How I would smile slightly, foot bouncing up and down beneath my desk.

Kayla and I swore up and down that M. and T. could read our minds, knew how infatuated we were, knew we were different, were artists.

We were being so obvious. Speaking with our eyes, our bodies. If they hadn’t said anything, hadn’t turned us down by now, it meant they definitely liked us back. They knew we were different — some invisible pulsation moving from their hearts to ours, begging us to recognize their deafening love, their painful lust, their desire to know us deeper than we knew ourselves. We relished that silence. But I’m not sure how harmless it was.

Our reading partnership began with me giving T. creative pieces I was working on — essays or poems I scribbled into notebooks and called art — while our class was preoccupied with The Great Gatsby, Macbeth, and The Stranger. At that point, I was in a separate creative writing class, but I reserved certain bits just for him.

And he did the same, for me.

Staying after, besides a few students coming in and out to ask questions about their next class, it was just us. I always started in my seat on the opposite side of the room, but without fail I would begin wandering around, making it seem aimless and random. Tilting my head to the side, acting as if something got my attention. Only to land at the table and chair just inches from his desk.

T. would return a piece of mine, something about a boy who didn’t exist, or a boy who was secretly him. He usually took a few days to read and leave notes, sometimes just a night. The days we got to talk about my work were my favorite. Instead of me taking up his time and space, T. invited me to his room after the final bell. There, I’d pull my chair up beside his large dark desk as he pulled in tight around the corner, his body leaning over the pages in front of him, a red pen in hand. I basked in the time, the effort, the generosity he spent on each line, each scene, each metaphor. He was so purposeful in what he said and how he said it. I knew he really meant it — had taken the time because my writing was worthy of it. I was worthy.

“I have something for you to look at,” he told me once. “But it’s really rough.”

My heart started racing with ideas of what it could be. Half-formed thoughts of a short story where we end up together. Maybe a poem or two about some mysterious woman with short brown hair and dark eyes.

Instead, he talked about his novel, following two brothers from a mining town beginning to cave in on itself. Set years after the gold rush, the brothers find some artifact in an old building, and then the story bounced between two timelines: that of the boys in their town sinking to the core of the earth, and the artifact, a throwback to the town’s most glorious days.

He swiveled on his desk chair and pulled out the thick manuscript, bound together with the largest paperclip I had ever seen. When he handed it to me, I expected the pages to fall heavily into my palm. Instead, I felt our fingers brush past each other as the weight transferred from his large hands into mine, my skin tingling at the contact that proved it was possible to get more. I wanted more. I was hungry for more.

My friendship with Kayla was often subconsciously performative. We based our personalities on images of Lana Del Rey; the short white dresses, the dirty knees, the angled liner, the ruffled white socks. When Kayla came over to my house we put on red lipstick and sucked red lollipops. We opened one of the windows in my bedroom and sat on the roof outside. She grabbed my Polaroid camera as I placed the Born to Die album on my 2014 record player. We sang about loving older men who were addicted to drugs but held us gently. Who would die for us. We growled out lyrics begging these men to kiss us hard in the pouring rain, toying with them, saying they like their girls insane. Kayla and I turned to Tumblr to find others like us, sent each other images of gauzy dresses revealing high-rise white panties, found poems about fucking in apple orchards, and reveled in them.

Out on my roof, our bright lips developed first on the Polaroids, then our tongues, red from the candy. We put our hair in pigtails. Kayla picked out quotes from Lolita, a book we hadn’t even read yet, and recited them like gospel: “You have to be an artist and a madman … in order to discern at once, by ineffable signs … the little deadly demon among the wholesome children; she stands unrecognized by them and unconscious herself of her fantastic power.”

Kayla told me we were artists, that we had fantastic power; that we were deadly demons among our peers. That we knew more about romance and those delicious tremors of grown-up life. And she said that T. and M. were artists, too.

When the clock hit 2:15 p.m., I found my way back into his room. Every once in a while, T. took advantage of my presence, keeping me busy organizing books or helping with lesson plans. Once, when restacking, I stumbled upon a dirty white cover with colorful lines slashing up the left corner, The Catcher in the Rye. Pages were beginning to fall out and become oxidized, but I recognized the title from somewhere deep down in my body.

I was bringing the book over to my desk when another student walked in. T. had left to return books to a teacher upstairs. I looked at this student as she told me about a poetry quiz; T. had said some students might be coming in and told me where the quizzes were. I nodded my head, told her to sit, shuffled through the white pages until we found the right one. I gave it to her and sat down in the front of the room.

Then other students started coming in to grab summer reads. I told them to sign out the books on a sheet. When the student was done with her quiz, I put it on a new pile on T.’s desk. I kept signing out books and handing out quizzes, waiting for him to return. At the same time, a new confidence in myself — in my leadership — peeked out from the shadows.

When everyone left, I took back Catcher and plopped on top of his tall spinning chair, feeling proud of myself. Finally, he returned, apologizing profusely for taking so long. I explained all that happened and he looked at me, in his gray Friday crew neck shirt — a favorite because it was thin and I got to see lines and mounds and turns underneath — and said: “Well aren’t you like my little secretary.”

I stopped spinning on the chair. I got warm and fuzzy inside and felt something sort of tighten beneath my skirt. Just the day before he had called me to his desk and told me I knew how to write, to stop freaking out about it. 

“You’re like a little woodland creature that feels isolated, scared sometimes, and overthinks too much. But you shouldn’t, because you’re good at writing. You should be confident,” he told me. 

Later that night, I wrote everything down. And suddenly, because I couldn’t help myself, I ran away with it, writing: “He makes me so happy, but there’s so much danger attached to being with him. And I really don’t want to ruin his life. More than anything, I just really enjoy having someone to talk to, who enjoys my company. And I just really, really want to hug him and feel his caring and understanding hands around my back, feeling my entire body go warm in his grasp.”

The next day, back in his room, I asked T. if he ever read Catcher in the Rye. He shrugged, said it was overrated. Even still, he walked over to the bookshelves and grabbed the same off-white paperback. “Maybe you’ll get something from it that I didn’t,” he said. But as I read it, I too didn’t like it. I kept thinking I was missing something, not reading it right. Holden was dull and apathetic — the language boring, lacking lyricism and poetry, every word landing with a thump. No tidy ending wrapped up with a bow.

I felt so much all the time, was preoccupied with everything meaning something, but Holden just walked. And seemed to never stop. He carried his past with him, on and on, wherever he went. It was the last thing I wanted to see. At some point between giving me Catcher and before I slogged through it, T. asked to talk after class. When the bell rang, I headed to his desk. “I read your essay,” he said. He meant a short story I wrote about a young girl with an eating disorder who’d been hospitalized, sick from obsessing over the way she could escape her body and mind. My anxiety and depression were known to only ever come out in my writing, infiltrating my themes and settings, notebooks of scrawled poetry about wanting to die. Even when I hesitated to reveal how dark things had gotten to myself, I couldn’t hide it on paper. Without meaning to, I manifested these neuroses into something more tangible, physical.

I thanked him.

“It was very well done but I have to ask, is everything okay?”

I wanted to say yes and no. No, things aren’t okay. I cry in the shower every night, my parents don’t care. Yes, because I have you, and having you means I have a reason to write, to feel good about myself, to feel good about my writing, to keep coming to school. I wanted to say I did everything to please him.

But instead, I told him it was inspired by a television show. I couldn’t shatter the fantasy I’d built around us by admitting no, actually, something was broken in me. “Everything’s fine,” I told him. 

I still have a few of the emails T. and I exchanged. Most, if not all, I sent using my personal email, hoping it would offer a veil of anonymity.  I had seen it work in Molly Maxwell, a Canadian film I steadily became obsessed with. I don’t think I ever realized he used his school one.

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Going through the emails again, I’m both appalled and embarrassed by myself. My tone drips with desire for his approval. I sent him three messages in a row explaining how I pretended to die after my journalism teacher said I shouldn’t have used personal pronouns in my final’s essay. Then in a separate email, he said that from what he had heard, I had the 100 percent in the bag — which I took to mean he was thinking about me on his own, asking for my grades without instigation. In the next email, I am ecstatic, writing in all caps and thanking him profusely.

One still makes my heart flutter, my pulse quicken. It’s from March 14, 2015, at 12:53 p.m. It reads: “I should be done with your story by the last bell if you want to talk about it — you should be very proud.”

Though he never took advantage of my lead, he played his part, too. He never told me to stop. Never told me I was being inappropriate in my advances, in my clear obsession. I finally see he loved the attention, too.

Last day of classes, junior year, I couldn’t bring myself to leave his room. While other students barely held their excitement together, skin itching for summer break, all I thought about was how I wouldn’t be able to use our lesson, or an upcoming vocab quiz, as an excuse for retreating into his classroom. I studied his broad shoulders and towering height, his pressed blue-checked button-downs and light beige khaki pants, his brown belt, and breaking sneakers — soon to no longer be in my daily vision — and felt a deep emptiness inside. I wondered if he felt the same. If that day held as much dread for him as it did for me.

I asked T. to sign my yearbook. Deep down I expected a proclamation of love, having convinced myself the only reason why he hadn’t reciprocated my gestures was that I was his student. I wondered, now that I would be a senior, would he be free to say what he wanted? I hoped what he wanted was me.

As I waited for him to scribble something romantic, I plopped myself on the spinning stool behind his podium and looked out to where I normally sat: second row, two desks in from the left-side windows. I thought of all the times I bit the end of my pen, toyed with him, tried to get him to blush and maybe even get hard. Begged him to notice me, see me, love me. I thought of slowly crossing my legs in my short skirts, raising my hand after every question, thinking I was proving my maturity despite my age.

He finished my yearbook and walked over to me. Rotating back and forth, back and forth, left and right on the stool, I imagined him pulling me in for a kiss, me touching the small of his back, him removing me from the stool and pushing me up against the wall. Instead, he grabbed a whiteboard eraser and began removing any last remnant of the year. But he was so close to me as I turned left and right, left and right; each nudge moved me closer and closer to where he stood behind me. I could nearly feel his hair in the wind I created, pushing the stool as far as it could go, knowing I could brush his arm if I got over far enough. And he didn’t move away; he didn’t do anything. His back faced me, but he was so close I could smell him. Later that night, alone in my room, I opened my yearbook. On the entirely blank page I had left for his words, I found a small note, barely taking up the left-hand corner. 

“You were a great student this semester,” he wrote. “Make sure to come visit!”

I read over the minuscule text again and again, searching for what wasn’t there. That’s it? I asked myself. Even if he didn’t love me back, surely I deserved more recognition than that. Didn’t I?

Senior year, Kayla and I were in the same advanced English class. We spent most of our time talking about the way M. looked at her differently yesterday. About how his request for her to water his plants was obviously a declaration of his trust in her, a trust beyond teacher and student. (“He wouldn’t ask just anyone!”) We ignored the immature giggles at lunch coming from Anthony and Claire, saying that M. was gay and Kayla was wasting her time. Sometimes when he monitored lunch, Kayla and I were convinced he stood near our table on purpose.

A favorite topic was the day Kayla sat on top of a desk in M.’s class after school, leaning over toward him behind the podium. She kicked her feet lazily while I watched from behind the door, ready to inform her of every stolen glance she missed once their meeting ended. When she walked out, we clasped hands and ran down the hall, singing praises of how well she seduced him, had captured his attention.

In class, we were assigned to write about a book turned into a movie. We scoured the internet for age-gap films, which wasn’t hard, and stumbled onto The Babysitter (1995), An Education (2009), Palo Alto (2013), Magic in the Moonlight (2014), and Pretty Baby (1978). We idolized the relationship between Ezra, a high school English teacher, and Aria Montgomery, his student, in Pretty Little Liars, asking the universe what we had to do for that to happen to us.

Unsurprisingly, we decided to write our essay on Lolita for the assignment. The first step: getting our hands on the book, which felt dangerous, maybe even wrong. Dressed in our most darling outfits we made our way to the bookstore. With the sweet taste of doing something salacious, we snuck around the shelves, nearly begging one of the male clerks to ask us what we were looking for. After half an hour of searching, we were about to give up before finding that iconic cover of baby-soft pink lips nestled next to other “Summer Beach Reads.” We found this incredibly funny, made jokes about it for weeks to come: “Ah, yes, my favorite beach read, young girl has an affair with an older man, who is also her stepfather. Sounds like my ideal summer read.”

We watched the film together, more than once. I began to find myself no longer romanticizing the story and felt nervous to tell Kayla. She was still holding onto the love story and it felt dangerous to admit I wasn’t. Here was the one person who understood me. Was I really going to isolate the both of us? We were artists, after all. Like Humbert said: Together against the world.

But something in the film didn’t hit right. That final scene, maybe. Or when Dolores finds out her mother has died and her sobs ricochet through the motel walls; retainer in, oversized pajamas, hair falling out of cloth-rolled curls. Her face twisted and unrecognizable she doesn’t look like a kid anymore, but she certainly doesn’t look like a woman. Perhaps the turning point was in Humbert’s narration, “You see, she had absolutely nowhere else to go.” Or later on, when he says she died in childbirth — a child she would never have had if he hadn’t stolen her, never molested her. Because he never gave her a choice. Those scenes were switches. 

My final essay focused on how Humbert created a Dolores he wanted us, as readers and jury, to believe in. A Lo that desired his love and advances. We never actually know what she wants in the book because we can’t see her. Humbert is able to hide her behind the words on the page, behind her silence. But the movie gives us clarity through her physicality — the sadness in her face, the bags under her eyes, all the moments she pushes him away only to come back. A young girl without a mother, in need of even a false safety.

Whenever Kayla asked me about the paper, I made it sound less condemning. But inside, I knew I didn’t want this story for myself anymore. I watched the movie and felt a dip in my stomach. I saw Dolores for who she truly was: a 14-year-old girl. A scared girl. A kidnapped girl. I didn’t want to be lied to, stolen, raped, abused. I wanted independence and autonomy.

And yet I still snuck into T.’s classroom, still spun into his doorway with a big Barbie smile plastered on my face. How could both things be true? 

Maybe the answer’s in Molly Maxwell. In the film, we follow Molly, a young girl at a school for gifted children, and a new teacher in town, Ben, whose rock band only recently disbanded. Molly and Ben stumble their way into an independent photography study and later a relationship. They “run” into each other on buses — Molly having seen Ben get on from down the street, rushing to meet up with the closing doors — and catch each other at a bar downtown.

One of the first photos Molly takes is of her feet, adorned in green socks, floating below her room’s chandelier. I began taking my heavy, clunky film camera to school. And with each new roll of film, the first picture was always my feet sticking up in the air, dangling below the crystals.

I ripped out a page from a magazine and scribbled my favorite lines from the film on it:

“You’re something else, Molly Maxwell.”

“Is that a good thing?”

“No. You’re like a hand grenade.”

I daydreamed about running into T. around town and going on a secret jaunt to an island as Ben and Molly do. I wondered what we’d talk about, spinning around in some dizzying abandoned top ride. I wondered if he would take my film camera, like Ben does with Molly’s, and gently pull my sweatshirt hood down, his big hands hesitating to tuck the hair flying around my face behind my ears. I wondered if he’d get angry if I said, “Do not bother, waste of film.” I wondered how we’d look at each other after the photo was taken, sitting in the silence of rushing waves and whispering wind.

In one scene, Molly takes her clothes off slowly in front of Ben. I told myself it was because she wanted to and because she was a woman, not a kid, and they could both see it. Molly stares at Ben who says, “You know you’re a real godsend.” She takes her hair out of its ponytail, stands up, unbuttons her shirt. She pulls her skirt and gray tights down, her shirt off. She’s standing in green underwear and a silver bra. Ben walks over to her, closing the space between them, hands linger over her arms, her skin, like one touch might hurt her. 

Kayla and I went through phases of watching this movie: as high school students, freshmen, then juniors in college, and first years in graduate programs. Watching the movie in high school, the relationship between Molly and Ben felt so distinctive from Dolores and Humbert’s. Molly spends the entire film convincing Ben of her maturity. And she does it so well, that I believed her, too. So when their relationship starts, it does feel more consensual than Lolita. That’s the trick.

In the book Stolen by Lucy Christopher, a young woman is kidnapped by a man who’s been watching her. He attempts to convince her of his love, and eventually, with the onset of Stockholm syndrome, he does. But the book wants its readers to feel the same way. It’s moving and upsetting and successful because you, ostensibly, develop the syndrome, too.

Narratives like Molly Maxwell, like Stolen, are meant to make us question the ease with which we start to accept inappropriate relationships. But when you’re young and looking for approval, you don’t have the tools to analyze these subtleties at play. All to say, it took me until my early 20s to see the movie in a new light. And when I did, Molly sounded young, felt young, was young. I finally saw it.

I brought T. my college essay more to read than to edit, but I guess I didn’t explain that well enough. He asked me to come by after school so we could go through what he thought of it, and given any excuse to sit beside his desk once more, I agreed. But when I got there, other students were in his room, too. For some reason, I thought it would be just us; a special meeting closed to the outside world.

He gestured for me to pull up a chair. I scooched in as close as I could, tried to touch my leg to his, so close I could tell the fabric blend of his pants. T. started going through his notes and I saw my paper was riddled with red pen marks. My cheeks flamed, pulse quickened: He hates it, he hates it, he hates it, he hates me.

Half listening, my ears filled with blood as he went through each grammar change he thought I should make, each wrong sentence. At one point he called over to the other students in the room, peers of mine, and asked what they thought of a line. That was the ultimate betrayal.

I didn’t listen to them. I just stared into his eyes, my whole face hardening. How could you do this? My writing is just for you. Why are you asking them? What role do they play in this?

I seethed so much that I thought he would feel my body radiating heat. At the end, I snatched the paper out of his hands, tears forming in my eyes, and stalked out of the room.

When I got home I stormed up to my room, chucking my backpack onto the floor. I grabbed my black notebook out of my bag and wrote: “Today, I grew up. Today, I realized I don’t need, nor want, T. by my side. He was rude to me in a way that showed me he doesn’t care in the way I thought. And I’m honestly very happy I had this revelation.”

“I needed it.”

“I deserve bigger and better things.”

We run through the halls, blue dresses with gray cardigans, Kayla’s big purple backpack dwarfing her height despite the three-inch wedges she always wore in spring. Our small girl laughs ting off the metal lockers as we race against the clock. Just a few more steps and then his door. Just a few more steps and one last goodbye, maybe finally a hug, a kiss, or an admission of love. But as we turn left, manifesting M.’s door swinging wide open at the sight of her, it’s shut and locked.

Kayla backs away and lightly slams her head into the locker behind her. My laughter starts to roll and cannot stop. I snap a photo as we both laugh at ourselves, sinking down to our knees, stomachs hurting, abs forming.

“Well I guess that’s it,” she says.

We join hands once more, but there’s something more final to it this time. The door to the outside world, to our cars and the road, is right down the hall. We head over.

Part of me has let T. go. Another part, the ugly part, knows I would be jealous if it came out that T. took advantage of a student that wasn’t me. That I’d interpret as him saying I was never good enough. There is so much silence in all of this. In the stories of girls abused and groomed by their teachers; in the stories of girls aching for attention, and teachers relishing in it. I workshopped this essay once and the professor — an older white female writer — thanked me for telling it from this perspective. “People don’t believe me when I say some of these young women are asking for it,” she told me. “That they sexualize male teachers.” Her comment broke me. Made me feel completely misunderstood. That’s not what I’m trying to say, I wanted to yell.

Kayla and I used to watch the movie Beautiful Girls for Natalie Portman’s character and her neighbor Willie, an older man visiting his hometown. In one scene, Willie leaves his buddies ice fishing in a red shed and walks over to where he’s seen Natalie Portman’s character, Marty, skating with other children. He wears a trench coat and hoodie. She has on overalls and a white fair isle sweater. A green hat on her head, mittens to cover her small hands. 

She asks what he’s doing there. He tells her. He asks about her crush from school: “So where’s Scooter? Uh, what’s his name. Billy? Tiger? Pookie?” She’s not into him anymore.

“So you got someone new?” 

She does a small jump on the ice. For the first time, she’s quiet. Then she smiles, licks her lips a bit: “Yep, you.” 

Willie laughs, a smile crosses his face and his breath turns to smoke in the cold air. He’s happy with this reveal. “What?”

“You. You’re my new boyfriend Willie. You up to it? Oh, I feel faint!”

She falls into his arms, and in the background, one of Willie’s old friends, now skating with his own kids, falters. He’s heard about her one drunken night when Willie said he thinks he loves her.

Marty asks if Willie will wait for her. She says, “We can walk through this world together.”

Young girls are desperate for validation. We crave recognition so badly from older male figures that sometimes we mistake innocent need for emotional desire. That impulse is misguided, sure, but we are children. We are young and pubescent and desperate for someone, anyone, to see us and say everything will be alright. That we are alright. And it’s easy to misconstrue love when you have access to bits of culture that romanticize those relationships, imbuing sensuality within the hush of forbidden love.

Only recently have we begun the uncomfortable conversations. Memoirs like Alisson Wood’s Being Lolita and Cheryl Nichols’ four-part Hulu docuseries, Keep This Between Us, expose what they describe as an “epidemic” of inappropriate relationships between students and teachers, and the silence from administration, peers, and adults that enables the behavior. 

There is no situation in which the student is to blame, ever. Even if they “ask for it,” even if they seduce and flirt and beg. Certain teachers, often narcissistic, relish the spotlight we give them. Some may never act but remain complicit in their silence. For something so pervasive amongst young women — so much so that entire communities online used to exist in support of it, and probably still do — we should all be much louder.

I once took T.’s quietude for admission. If he only spoke, if he only acted like an adult and broke the mirage, where would my energy have then gone? All the time I spent molding myself into his perfect student. Focused on pleasing him and only him. I’d like to think it’d go somewhere progressive. I’d like to think I would have poured it into myself.

Jessica L. Pavia is a Pushcart Prize-nominated creative nonfiction writer whose work has appeared in Catapult, Roxane Gay’s The Audacity, and the Columbia Journal, among others. She is a columnist for Write or Die Magazine based in Rochester, NY. 

Editor: Carolyn Wells

Copy-editor: Krista Stevens

This story was funded by our members. Join Longreads and help us to support more writers.

Christy Tending | Longreads | February 2, 2023 | 14 minutes (3,768 words)

There are things that able me. A chair. One person speaking to me at a time. Shoes that are not cute, but spare me nerve pain. A hot bath with epsom salts: so hot it would scald most, but my skin is like Kevlar. It craves the heat and wishes for it to dig deeper. These are simple but necessary things that make my life more livable.

They do not “enable,” marking conspiracy in a habit I am trying to quit; I am not done yet with my propensity for being alive in the world and I’m not ashamed of what these things offer. They able me. They render me capable of basic participation in my life in its myriad and fantastical forms: watching my child play soccer; eating dinner with my family; browsing through my favorite bookstore; coordinating a protest; hiking with my friends.

These accommodations — and others I require but have not named — are not merely comfortable, but necessary, an antidote to the ways the world, as it is, dis-ables me. The way the world tries to tell me that simple pleasures do not belong to me. Due to the burdensome inefficiencies of my body, I deserve exclusion.

When I train activists in street protests and direct action, which is my avocation in this lifetime, one of my rules is “One Diva, One Mic,” which is to say, “Please shut the fuck up when someone else is talking because my brain cannot process multiple sounds at once.” I talk about how a motorized scooter can make for an excellent blockade tool. Disability is not the same as vulnerability; I have been deemed broken, but am not fragile. And when I raise my voice in service of my needs, I am teaching others to do the same. When we meet our needs together, we are building the world we want to live in.

Translation and interpretation take many forms. Sometimes, to make someone able and free to participate is simply to speak in a language they can understand. Sometimes, when my husband and son are both talking to me at the same time, I put up both hands and say, “Chotto matte, kudasai,” which means, “Please wait a moment” in Japanese (which means I am serious; when the white person starts snapping at them in Japanese, they know it’s serious). Auditory overwhelm means I need quiet and accommodation from my own family.

My son brings me a pillow for my back, and then climbs into my lap. I am cushioned and I am cushion. This is how care happens.

If my life were a cheesy ’80s movie, it would open in freeze frame: me, lying on a field, trapped underneath a pony who crashed to the ground with me as his only buffer; my exasperated voiceover saying, “You may be wondering how I got here.” I was 12, about to enter the seventh grade.

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In the film (as it was in life), the pony stands up on my left femur, righting itself. I have a concussion and a broken nose and a horseshoe print on my thigh. I am taken, in cervical collar, away in an ambulance. The horseshoe bruise is so thick I can’t fully zip up my chaps for a couple of weeks. The film speeds up, hurtling me through time. I cannot tell you when the pain began, but underneath the pony is a good time to start.

At 12, I did not have the context or the language to understand what I was becoming or, more specifically, what was becoming of me. It took years, decades of working with and through disability justice frameworks to fully give myself over to incorporating disability as a part of my identity and to understand how disability colors my life and my self-perception.

When I did, it became easy to catalog: scoliosis, clinical depression, complex post-traumatic stress disorder, generalized anxiety, chronic headaches, auditory processing issues, ADHD. This is not exhaustive, but the rough sketch of things. This list does not account for my humanity — the person experiencing all of this — only how I am failing to measure up to the demands of capitalism. People want to know, without putting it quite this way, how I am compensating for these shortcomings. They very nearly ask for an apology that is not coming.

More than once, someone has told me they couldn’t “live like that.”

I have finally gained the fluency I needed to recognize and appreciate and celebrate myself as disabled. I do not embrace the term for having accomplished or overcome anything, and not as a signal of defeat (although there are plenty of people who love to see it that way), and certainly not as a beacon of “inspiration,” but as a loving gesture toward myself. To see myself as disabled is the entrypoint to access what some call self-care, but I call compassion.

Disability is not a sign of failure to care properly for myself, but as the beginning of meeting myself with the tenderness I require to move through the world. It is still a radical statement to meet your own needs without prerequisite, without means-testing your efficiency under capitalism. Acknowledging myself as disabled means I can then work to subvert the forces disabling me. Which begins with my worth and what goodness means. When I tell people, “I’m disabled,” they cock their heads to one side and frown. “Don’t say that,” they respond, bottom lip plump. I know I am supposed to comfort them, to take it all back, to smooth things over. Disability shames us both: the witness and the showgirl. Their embarrassment tells me I have subverted the unspoken contract. I do not want to soothe them; I am worth knowing myself.

At 12, all I knew was that other kids my age did not talk about pain in the way I did. Pain did not interfere with their experience of being 12. The other kids seemed limitless. I felt limitless in other ways: to ride bareback through the streams and ponds and fields and forests and hills of Maryland, without adult supervision, is the closest thing to pure, uncut freedom I can imagine for a middle-schooler.

The hardest thing is standing still. There is something about being upright, stuck in place, that is agony for my spine, my hips, my feet, my knees. Any arch support will ultimately fail if I am forced to be in one place without a chair for long. It feels like my brain is melting. I cannot form sentences and my peripheral vision grows dark.

Which is not to say in horseback riding I was immune to injury or consequence, but for a time, I was exempt from the force of gravity on my joints. I could find freedom in my partner. Together, we could fly. Part of freedom was the knowledge that our problems were ours to own, to fix or fumble.

In hindsight, it is difficult to untangle, like a well-plied yarn, what was chronic injury and what was the insidious beginning of chronic pain. When I was recovering from multiple concussions from horseback riding, I assumed if I simply stopped injuring myself, I would stop hurting. People would jokingly say, “Wait until you get to be my age!” As though pain is the exclusive domain of those over 40. As though I could not know agony at 12 or 14 or 16. I could. I thought, I am, right now. This kind of gaslighting is obviously harmful, when you say it out loud. Our society is so skilled at telling children not to trust themselves: to ignore their bodies’ signals, to focus on a body’s aesthetics, and to only value its abilities.

When my son says he is finished with dinner, I tell him the same thing each time: Thank you for listening to your body, no matter whether he’s had a fourth helping or eaten three bites. The quantity of food he consumes is not a goal in itself. I don’t care if he didn’t want to try the new thing I offered. What could be less my business than what another person eats?

***

Pain exhausts my mind. Stress and anxiety and depression exacerbate the pain. My disability keeps me so busy that I meet myself coming and going, like in the Dunkin’ Donuts commercial. It is both time to make the donuts; and I have already made the donuts.

What counts as disabled? (This is the same question I have been asking about my queerness since I knew enough shame to wonder: What is enough to count? To be worthy of being seen? To be real in the world?) I couldn’t tell you the answer, nor am I interested in policing anyone else’s experience of disability. I don’t really care anymore, if I’m honest, because I cannot know by looking at someone, and neither can you. What I do know is inquiry and identity give us access: to ourselves, to language, and finally to the accommodations that might actually grant us access. Identifying as disabled means I stand a chance of getting what I need. Much the way my pain is not static, being disabled is not a fixed position, necessarily. What if our needs were met? What if our unique way of being was honored?

I have never felt like enough. Not queer enough or disabled enough or mentally ill enough or enough like a mother, to qualify. It is not my reluctance, but my fear of taking someone else’s place, someone truly worthy. Someone who is enough. It is not internalized ableism, but my fear of claiming who I am as someone else decides I am a fraud; a heartbreak beyond words. There is stigma, of course. If I claim my disability, will it be turned against me? Like the boy in fifth grade, years after I knew I liked girls but years before I claimed a queer identity, who called me a dyke as though that’s a bad thing. I avoided getting sober for years because I wasn’t enough of a drunk; I hadn’t properly suffered.

I never reached the bottom. Or maybe there is no bottom — not really. At 40, I know who I am. Disabled, queer, mad as hell. Sober.

When I was still riding, I was often asked to ride other people’s horses and, for lack of a better phrase, “Show them who was boss.” My father’s horse was an enormous black Trakehner, an East Prussian warmblood who did not always do what my father asked of him. So sometimes I, at 16 weighing 100 pounds, would hop aboard. Patrick would turn his head toward me, I would pet his nose, and then we would fly. Patrick would do whatever I asked. He was capable and athletic, and he knew despite my tiny size, I wasn’t going to take no for an answer. He also knew I wouldn’t ask him for anything he couldn’t do. I couldn’t muscle my way into making horses do what I wanted, but they learned to trust me all the same. I had a pony once who loved me so much he would come running across the field at the sound of my voice. I didn’t need to use a halter and lead-shank: He would heel like an overgrown golden retriever, eager to please. He would follow me to the barn, with his enormous head against my hip. He’d stand and rub his face against my rib cage as I tacked him up.

This is all to say my riding skill didn’t rest on authoritarianism or brute force. It was my intuition, compassion, and trust. It was a mutual effort. Horses, like most prey animals, can be tightly wound. My senses also had a hair trigger. One false move, and the muscles around my spine would spasm. Together, we could process an overwhelming amount of sensory input and turn it into something graceful and harmonious. In the face of the pain of daily life, this was my solace: working in tandem with another being, often just as terrified by the threat of disaster as I was.

Show-jumping has a steady rhythm: short outside lines, long diagonals. There are flower-boxes and soft dirt, birds in the rafters, a cool breeze, and an early sunset when you’re showing in October. Heels down, hands soft. Sometimes, you can walk the course with big strides, marking your lead change with a heel: a little hop to ease you around the corners.

I could read the subtle energy in my body more easily than my peers who hadn’t had to wonder why they woke up with neuropathy in their shoulder or why their spines sounded like breakfast cereal when they bent over. But those neural pathways also gave me information: Dig your heels in here, lift your hips now — and when I did, my pony would sail over the jump, lifting us both. Riding doled out injury and served as a balm for my more ordinary chronic pain.

My body gave its lessons early. This is not forever. For better or worse, this will not last.

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When I say I am disabled, this is what I mean: I am tired of not getting my needs met. I am tired of basic human needs being an afterthought. If I am “giving up,” the only thing I am truly sacrificing is the illusion of exceptionalism and individualism that got me into this mess in the first place. I am burning down the myth of self-sufficiency — or the idea that self-sufficiency should be a goal unto itself. I am surrendering the idea that I am a burden for having needs. I am demanding to be a part of the team and to be honored for what I bring to it.

It is expensive and time-consuming to be disabled. While I am not afraid to have my needs met, it is exhausting to have to advocate for myself every waking minute. It takes so much more time and energy and support to get what I need. It takes thought and preparation and resources to move through the world. Being disabled is also tremendously boring: Sometimes the days stretch out into weeks or months when I wish I were doing something besides my healing slog. I know the words will be back; I know one day my body will endure sitting at a desk again. Or maybe it won’t, and I will ponder that when it comes. There is no way to account for how I spend my days during those phases of necessary interiority.

For years, the person-first identity was pervasive. “People with disabilities,” they would say. But my disability is not luggage, separate from myself. And there is a kernel of truth inside me: Had the values of capitalism, white supremacy, and colonialism not crept so pervasively into our collective consciousness, I would not have been rendered disabled in the same way. If we, collectively, engaged in mutual aid in more than fits and starts, then perhaps insisting on having my needs met would not seem so anachronistic. Instead, I am seen as entitled when I meet my needs, and yet pitied for having needs at all. How pathetic, they seem to say. How cringe.

When they tell us we’re people first — that we shouldn’t say “disabled people” — it feels as though they are worried that one day we will implicate who has disabled us and who continues to poison and maim us as we try to heal. Their brand of capitalism is the same one that demands endless growth, even from those of us who do best lying fallow in the afternoons. The ones who insist on ceaseless cheerfulness. I have pulled myself up by more bootstraps than I can count. But I know this: After you have pulled yourself up, the horse carries you.

Part of the trouble with invisible disabilities is that you keep having to explain yourself. I’m not lazy, I want to say. And yet, in certain contexts, I am, in turns, “a hearie,” “a walkie,” and so on. In those moments it is my turn to be a facilitator: to make space, to create connections, to meet needs where I can, to help patch the way between here and access. This means knowing who needs to leave at what time so they can make it to work; who needs to be on the left side of the stage to hear; or who might need the Advil or Clif Bar or extra pair of socks I have stashed in my bag. I move as deftly as I can, remembering to create for others the conditions for getting their needs met, one cell in the body of a complex organism. This is what community care can look like. Sometimes it means giving and other times, receiving. Sometimes, it simply means making sure that everyone in the group knows where I am and where to find me so that I can troubleshoot. At the very least, my work is to help create an atmosphere where those who have needs know they belong. All good activism, even street protests, begin with consent; people should be able to move back or away or into a different mode at any moment, without shame. The group’s work is to respond with care to the needs of its individuals, even when those needs shift.

I am still learning, fucking up, apologizing, fumbling forward. If inquiry offers me the gift of understanding myself as someone who has been disabled in certain contexts, it also yields this knowledge: In other contexts, I am not. And in those cases, I have the obligation to tear down barriers that, while not an issue for me personally, oppress others. While my disabilities’ invisibility in some contexts robs me of being taken seriously, at times being able to be covert, to fly under the radar, lends me a certain kind of power. It comes with responsibility.

Some of my favorite protests are the ones where I can play a specific role, one that feels well-worn and comfortable for me, without having to do the heavy lifting of organizing. Let me block traffic or wrangle reporters or talk to the cops, things that might feel scary for younger activists, without the actual, real work of logistics and getting people to show up. Often at protests, I feel like something between a camp counselor and a firefighter, spending my time handing out Clif Bars and extinguishing conflicts before they can overtake the group (and the message we’re trying to send).

In the summer of 2019, a coalition of groups staged protests outside of the ICE building — to protest family separation at the border and Trump’s draconian immigration policies — in downtown San Francisco every day during August, with a different group “adopting” a day during the month. I went to six or seven events. My favorite was when I was asked to be the police liaison for a coalition of disability justice groups who had committed to anchoring the action. I find freedom in being somewhat mercenary.

I am not big or scary, but I have a set of skills. I know how to talk a security guard out of messing with our equipment. I know how to move the larger group to protect a higher-risk few. I know when a tense situation can be dissolved with singing or when to raise the energy of the group with a chant. I know how to watch the police and to recognize their gear. I can translate what they’re wearing into an understanding of how they are reading our action. Do they read us as a threat? Should we read them that way? I have learned to do this so that those who should be at the center can focus on the message. I am fluent enough in these to “Show them who’s boss.” I’m there to do my job invisibly: decentering myself and using my skills as a crowbar. My work in those moments is to leverage my experience and my credibility to create ease, a feeling of safety, and ample space, so the organizers can do their real work of delivering the message, rather than worrying about the cops.

The message is this: No body is disposable. No one is illegal. Migrant justice is inextricable from disability justice.

In the middle of the action, things are calm. What I know is activism in San Francisco is safer than most other places — especially places where they aren’t used to it. I’ve done actions in rural logging towns and in smaller cities like Charlotte, North Carolina, and Minneapolis, Minnesota, and I’ve learned: It’s more dangerous when the police are scared or surprised or don’t know what to expect. It’s riskier when they are excited to get to try out all their pretty, shiny toys on you, not knowing how they really work. Boring is the best case scenario. Everyone knew their role. I, as a “walkie,” roamed the crowd, to watch the police, communicate with them when necessary, translate information back to the group and keep folks from coloring too far outside the lines. Sometimes that means honoring our shared action agreements not just to protect ourselves from becoming targets, but protecting the more vulnerable folks we’re working with. Acting as a beacon and a deterrent.

Afterward, I went home and spent the next couple of days lying down as much as possible, feeling the impact of my heels on the asphalt radiating up into my lower back, the exhaustion of holding myself upright and alert. The residual adrenaline I feel from my PTSD needs time to dissipate, no matter how chill the cops are. Sometimes, this healing is private, but built-in recovery time is a necessary part of my activism. I am not as elastic as others.

If reminding people I am disabled is what it takes to let people know I have needs or they should quit being ableist, then so be it. If I have to out myself — to tattle on my chronic pain — to get a chair, fine. I will never apologize for it or undermine myself again. I will never downplay what I feel or what I need. I am worth getting my needs met, with or without a disability. I am worth taking up space. And, I have learned, if I do not take up space in the places I fear I am not enough, there will be no space for me at all.

***

Christy Tending (she/they) is an activist, writer, and mama living in Oakland, California. Her work has been published or is forthcoming in Catapult, Electric Literature, Permafrost Magazine, Newsweek, and Insider, among many others. Her first book, High Priestess of the Apocalypse, is forthcoming from ELJ Editions. You can learn more about her work at www.christytending.com or follow Christy on Twitter @christytending.

Editor: Krista Stevens

Copy editor: Cheri Lucas Rowlands

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Devin Kelly | Longreads | January 2023 | 17 minutes (4,692 words)

In late November, I am standing near the front of the church at my fiance’s grandfather’s funeral. I am not feeling great, I would say. Earlier that morning, I woke up a little achy and anxious about the achiness. I am wearing the suit I will get married in and standing next to the person I will marry, and, halfway into service, I kneel down as part of the ceremony, feel something go wonky in my head and my mouth and my body, think nope nope nope, and collapse sideways into the arms of my fiance. I wish I could say I remember something about that infinite blackness of not-being-with-it, that space of the unconscious, but it feels, in the moment, only like giving oneself over without permission, and then waking into a sea of faces. The mass goes on; somewhere to my right the priest still speaks. I say sorry. I say sorry again and again. In this way, I am reminded that this is life, that I am alive. I say sorry and people look at me with worry. I say sorry and people look at me with love. 

My wrist is held by my fiance’s aunt, a cardiac nurse. She talks to me, gives me sips of water. I think of the people seeing me and wonder how long it takes for an image of someone to undo itself from your mind. I say sorry to myself because I know I will think about this forever. I say sorry again to anyone who will hear. I say yes to a question asked by a cop who is somehow between the pews, and then to an EMT with red cheeks and a Red Sox hat. I want to get up. I want to undo. I want to be in my own head for a little bit and have the people go away. But more people come. Another EMT, then another. I am embarrassed; I am thinking only of myself. I am walked to the back of the church; I am placed on a stretcher, wheeled into an ambulance. The man inside it calls me buddy. I smile. It feels good to be called buddy. It makes me think that I am a kid, that I could be a little bit of a kid forever. I smile and nod. When they put the IV needle in me, and I feel the rush of something cool injected into my body, I pass out again. They are worried when I awake. The man says buddy but with more urgency. He holds me by the shoulder as I am wheeled into the ER. He says something about my heart, something about a pacemaker. I think okay, okay, remember this — the red brick of the building, the one green leaf amidst the others long since gone to gold, the 10 feet of brushed gray concrete between the ambulance and the electric doors, the bench without a person, the cold air against my wet chest, the person I love holding my jacket. 

Twenty years ago, my brother nearly passed out in a church in Rochester. I remember the heater on the ground beneath the pew, and how it looked like a fire alarm bell. I remember the men in the back of the church, with their puffy Buffalo Bills jackets, and I remember the abrupt and almost-comforting cold coming from over the lake, and how it slapped and shattered the skin of my young cheek when we opened the door to take my brother outside. He recovered. We walked back inside and left after mass — it was midnight on Christmas Eve — to sit at my grandmother’s small kitchen table in her small kitchen two blocks from the shore of Lake Ontario, where we ate Entenmann’s coffee cake with our dad before we went to bed. Before my grandmother died, I sat with her at that same kitchen table, watching her refuse to eat a spoonful of peas. My dad asked her to eat them, in what was perhaps the gentlest act I’d ever seen him perform. I’d never heard him whisper until that moment. He asked her softly, and she refused. She was small then, just barely taller than four feet. Life had made her stubborn, then tender, then stubborn again. That is my last memory of seeing her alive. Her face, just above the table’s edge. Like a moon gone down to earth. 

***

You can use the word faint — or its almost-homophone, feign — in a myriad of ways. You can say I fainted. You can say that some tasks are not for the faint-hearted. You can describe the faint light of dusk as the sun descends beneath the horizon and turns what once was gold to purple as everything moves closer to shadow. You can hold a faint hope in your heart. You can hold that hope forever; it can perhaps burn faintly inside you — just enough to keep going. You can feign courage even if you are faint-hearted. You can feign so much: your life, your expertise, your sorrow, your joy. You can speak faintly, so softly that someone might say speak up, the same way they might ask — then yell — for you to get up if and when you faint.

***

There are no windows in the emergency room. There are wires coming out of my body. I close my eyes. I open them. I say to myself: I will say thank you to anyone who touches me. I don’t know then that some of the touches will be difficult, that I will be pricked and poked, will feel the somewhat gross and mostly uncomfortable sensation of the thick and blue rubber band pulled taut around my arm. The blood gone from me again and again. The TV airing reruns of Friends. In between, my fiance and I look at islands we might visit when all of this is over. We want there to be hydrangeas — 10 million hydrangeas. A sun to shine on them. A doctor comes in and says it might be Lyme. He says you never know. He says the word test a thousand times. I am struck, while waiting, of how horrible it feels to wait. A child cries next door, in his own windowless room. My fiance takes a balloon from my room and walks it over to his. I watch her leave and think if I am allowed to decide to love someone for the rest of my life, and then I know that I am allowed, and that I do.

I am worried about my heart because everyone is worried about my heart. They say I will stay overnight in cardiology. They say they will move me when a room opens up. My fiance fits into the bed with me. We are both small. We watch Friends and eat Goldfish. Because no one will tell me how worried I should be, and because there is so much time in between the scary things that people tell me and the less-scary moments of those same people telling me not to be afraid of the scary thing they said hours before, I make a list of what I need to become okay with. I do it in my head. At the very top, I say that if I have to be okay with dying, I will become okay with dying. I say that if I have to be okay with someone opening up my body, I will become okay with someone opening up my body. I say that if I have to be okay with never being able to run again, I will become okay with never being able to run again. At the very bottom of the list is my body in the bed, making a list of all I might have to become okay with, the anxiety and worry of wondering about the self, and the only thing I think I know at the time: that I feel like I will hold my worry forever.

***

In his long, romantic book Rome, Naples, and Florence, Stendhal describes what later became known as Stendhal Syndrome. By his account, Stendhal is walking through Florence on the 22nd of some long-ago January, his heart “leaping wildly” within him at the prospect of viewing art. So much art. With memories “crowding and jostling” within him, he finds himself, by his own admission, “incapable of rational thought.” I think of his honesty with such compassion; he is so vulnerable, so innocent, so unrestrained in his willingness to be transfixed and transformed. He wants so badly to be moved. And soon, he is. Standing in front of Volterrano’s Sybils, he undergoes “the profoundest experience of ecstasy” and, leaving the Basilica of Santa Croce, he feels a “fierce palpitation of the heart” and walks “in constant fear of falling to the ground.” 

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Stendhal Syndrome takes that description as a kind of origin story, and, though unverified by scientific evidence as a true psychosomatic condition, posits that people can experience moments of lightheadedness, heightened anxiety, syncope, and more as a result of exposure to beautiful art. The Italian psychiatrist Dr. Graziella Magherini documented 106 cases of this, which she published in her book, La Sindrome di Stendhal. In an interview in Metropolis, she describes a man, Kamil, who visited Florence, took in a great deal of art, and, in almost the same spot as Stendhal, “felt like he was suffocating.” Magherini says that he “had to leave the church and lay down on the church steps, and that he was “able to collect himself only when he managed to imagine himself at home, in his bed in Prague.”

On the internet, I move back and forth between articles about Stendhal Syndrome and Magherini and Paris Syndrome — a term for people who visit Paris and experience a sense of extreme disappointment (which manifests as lightheadedness, tachycardia, and more) because the city is not what they expect it to be. It is perhaps the opposite of Stendhal Syndrome — a bodily response not to overwhelming beauty but to overwhelming mundanity. I am drawn to these descriptions of episodes and syndromes because they feel romantic — deeply symbolic and metaphorical. Reading about some of Magherini’s cases, I find myself thinking that they seem outlandish and absurd, true in their experience but only potentially true in their diagnosis. Perhaps Kamil was not really overcome by the beauty of art; perhaps he was tired from all the traveling and walking. Perhaps he was anxious about something in his life — some lost love, some unresolved desire — and the expectation of beauty (more than its reality) made him terrified, made him long for somewhere safe. His home, maybe. His bed in Prague. But I am no psychiatrist. I only know that, in the ambulance, when the EMT put the shock pads on my chest, worried that he might have to use them, I felt wildly calm. I saw the blue sky through the little window, felt the faintest rush of cool air, and thought this is real, this is here, and here is where I am. I wanted to make that little world safe. I breathed into it.  

***

They wake us both at two in the morning, and they make my fiance leave. I am wheeled through the dark emergency room, where the child — I hope — sleeps, and where a drunk man leans over his gurney, body heaving in some in-between state. He is left there in the hallway to recover, like a ragged doll of a wet fish. I wonder about what it must be like to work through this darkness, not knowing who or what is going to come. When I wake up again, I am in my own room, and there is a soft light — maybe even faint — spreading all orange above the trees, as if the sky is a blanket under-lit by a flashlight. Later that morning, after a nurse tells me the remaining tests they have to run, they wheel in an older man next to me, and slide a divider between us. He coughs. He coughs as if coughing is his breath. He had heart surgery months before; he thinks something is wrong with his heart again. He keeps asking if they will have to slide a catheter into his vein until it pokes up and around his heart. When his doctor comes in, the man coughs. He coughs and coughs again. 

In between each cough, he tells his doctor the story of a friend he had, a friend who called him on the phone to tell him he was about to take his life, that he had the gun right there. He talks about his friend with something that sounds like honor and is almost definitely dignity. He has respect for his friend, still, even though his friend used the gun. He says that: even though he used the gun. He tells the story for a long time. He coughs while he tells it. He does not raise his voice. He speaks with the flatness of a thick, wooden board. I don’t know how much hurt this man holds in his body and in his heart. He says that sometimes it is the only decision to be made. I want to cry, hearing the story. I have been separated from someone I love. I am alone in this room with the soft light that I want to get softer, and with a body that feels not quite mine, and I don’t know what to do with this story. I think: There is loss and there is only loss, which means that life is what we make of loss, which is an impossible task, to make something of loss, so life must simply be how we live, and continue to live, amidst the unthinkably unmakeable. It is, every day, so deeply humbling to take each and every breath. If I don’t hold onto that, I know I will let it go. 

***

Around the time of my parent’s divorce, I felt — for months — a gnawing pain in my chest. I was 10, 11 years old when it started. The pain would manifest as a short, sometimes intense sensation. I would feel it, frown, rub my chest, and get scared. I didn’t tell anyone about it. I didn’t tell anyone about it for a very long time. I remember sitting in Mr. G’s fifth grade English class, laughing too loud at the word bosom in Shakespeare, and thinking to myself — each time the pain shocked me out of nowhere — that I wouldn’t live to see the next day, or the day after that. I did that for a long time, this silent planning for a non-future, coming to terms with how my refusal to ask for help would probably lead to the end of my life. It felt grown up at the time, like I was handling a grown-up problem in a grown-up way. Now, thinking back on it, it seems so lonely, and sad. I think of that younger me, sitting in the midst of so many other young people, trying to become okay with dying and not telling anybody. I want to reach back into that past, and hold that child. Hold him tight. I want to say you can open your mouth. I want to say you can admit it. And then listen. Listen and hold. Hold and listen.

It took me almost a year to spit out my anxiety and worry and pain to my dad in a long, speedily spoken sentence. I remember how calm he seemed. We were in the car. He told me it would be okay, and a few days later he sat next to me in a room somewhere off a highway as a man rubbed a gooey, cool liquid all over my chest and my heart lit up — all electric — on a screen. The diagnosis had nothing to do with my heart. I was young; I was growing; these things happen. I would be okay. 

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There is something about the heart I cannot shake. I don’t mean about feeling. There will always be something about feeling I cannot shake, or even begin to describe. But there is something about the heart — my heart, and maybe yours — that looms over me each day. I think this is because I cannot control it. Right now, as I type this, I am breathing slowly, breathing deeply through my nose, and I feel my heart beat less frequently as a result. But even here, I am not controlling the actual beating of my heart, just its frequency. No. There is something about the heart. It beats until it doesn’t. I don’t give or withhold permission. To live my life is to accept — in this one, life-giving ongoingness that occurs right at the heart of me — that I am not the center of this story.

***

You can use the word heart in a myriad of ways. You can speak of the heart and its four chambers. You can speak of the heart as a muscle. You can say the heart is the size of a fist. You can talk about the fairyfly, only .2 millimeters long, and you can say you need a microscope to see its heart. You can say he doesn’t have any heart, which doesn’t literally mean that the person doesn’t have a heart, only that whoever you are speaking of lacks some sort of courage or resilience. You can be heartened. You can be disheartened. You can cross your heart. You can have a change of heart. You can have a heart of gold. You can believe in someone, and even love someone. You can do this with your whole heart. You can do something for that someone in a heartbeat. You can — always, and sadly — break their heart. Your heart has a bottom. You can speak from this place, the same way that you can bare your soul. Your heart has strings, too. They can be pulled. They can be tugged. I don’t know if they can be tied. I imagine they can. It sounds lighthearted, I know, but you can also have a heavy heart. I think of this often. How heavy is your heart? Do you wear your heart on your sleeve? Would you like help carrying it? I know you carry it every day.

***

In the daylight, a nurse takes my blood for the fourth time in my hospital stay. I watch soccer. I get lonely until my fiance comes. I don’t know what to do with my worry. I don’t know what to do with the time in between not knowing and knowing, which seems to be an entire lifetime, where I am left next to the coughing man whose friend put a gun to his head. I think a hospital is a hard place to get better, even if it is filled with people who do the job of helping you get better. I think a hospital is a terrible place to worry. My worry becomes a balloon filled; it takes up the whole room. It occupies a place next to the window and blocks out the light. My worry becomes my whole self, scared to tell a soul what is happening out of fear that it will make what is happening a reality. My worry becomes a silent thing. I put it somewhere in my body and let it fester. I close the door to that room. I wish that there were plants. I wish there was something other than the steady hum of machinery and the electric rhythm of my heart filtered through a monitor, which I turn to sometimes to make sure I am alive.

In the early afternoon, two nurses come to wheel me to a different floor, where, for the second time in my life, I sit in a room as a man rubs a cold and gooey liquid over my chest and takes a recording of my heart. We are so close, the two of us, in that elongated moment. We are so close in that dark room. It feels intimate; it doesn’t feel intimate; I want it to feel intimate. I want the man to talk to me about this moment, to acknowledge the two of us in this room together, to ask me about my body, to let me tell him what happened, to share something — a story, a kindness — in this room together while we are together. I want us to be unlike men. I want to lean into intimacy. I would kiss his hand if he offered it to me, the way people do in old novels upon arriving at the other’s door. Instead, there is just the cold feeling against my chest and the sound that sometimes erupts from the monitor as something — a frequency, perhaps — switches, and I hear my heart as if my heart were alien to me, this blooping thing that fills the room.

I am okay. I am diagnosed with vasovagal syncope — a fairly common syndrome brought on by various triggers, in my case, the dehydration most likely caused by the stomach virus manifesting itself in my gut — and I leave the hospital with a heart rate monitor glued to my shaved chest. It feels odd, standing in the hospital’s lobby, trying to rethink the 30-something hours, as if I had existed somewhere else. But I hadn’t. I sat in my body in a bed, and was moved around — from floor to floor — and attended to. There is a lump underneath my hoodie where the monitor sticks out. I feel as if I failed somehow — at life, at dignity, at anything of worth. I know that’s not true. You can tell me that’s not true. It doesn’t change the feeling.

***

In medicine, the term syncope refers to a loss of consciousness brought upon by a reduction of blood flow to the brain. Causes can be serious or benign. It can be related to a condition of the heart. In linguistics, the term syncope refers to a moment when a letter — typically a vowel — is omitted in the pronunciation of a word. This happens all the time in common speech. You say op’ra instead of opera, cam’ra instead of camera. A letter is devalued, made to seem empty, and is left out of the spoken word. When you experience syncope, you feel yourself left out of the language of common life. You come to, and the world has spoken a word and the very letter of you has been omitted. The word has been spoken; there is no going back. D’vin. D’in. D’n. D’. ‘’. If you say it aloud, only the emptiness echoes.

In music, the term syncopated refers to a moment when the offbeats of a song are stressed or accented. When you are listening to a song that is heavily syncopated, it disrupts your expectations of normal rhythms and patterns, and, though you are listening in that state of disruption, the hope is that such disruption makes you keep listening. My favorite example of this is the song “Fake Empire,” by The National, which introduces a piano melody that occurs in 3/4 time while the song is sung in 4/4 time. This is conflict, yes, but I enjoy this conflict. Your heart, however, should not beat consistently in a syncopated fashion. This is called an arrhythmia, an irregular heartbeat. You could have tachycardia, your heart beating too fast. You could have bradycardia, your heart beating too slow. Too fast. Too slow. It’s hard to know that something has to be just right. 

What to make of this disruption? This staggering anxiety in the everydayness of life? That fear of omittance, of a disrupted rhythm, of coming-to and not knowing? The desire to be just right? The worry of being left out? The longing for safety? The longing to be moved? The beauty of the painting? The letdown of the city? The  hand reaching out in that moment just before falling? And if there’s no hand? And if you can’t reach? What to make of this? Of life? Of what you can choose and what you can’t? Of wishing it were the other way around? Of giving over control? Of holding on too tight? Of the hurt we hold in the body and the heart? And of the heart — there it is, on the monitor, liquid blue and electric, like something underwater, do you see it, and can you see the scarring; it’s there, it’s there, I didn’t know it could be there, but it’s there, what we’ve caused to one another, what we hold and keep holding, not knowing any other way until we don’t know any longer — yes, of the heart, what of it?

***

I have tricks now for when I feel faint. I can cross my legs, push them out against each other. I can place my hands together and press them real hard. For weeks now, walking through the city, going to work, taking the subway — I think to myself: What would be the worst place to pass out? I worry about it constantly, find myself pressing each hand to the other in a preventative way, stemming off even the possibility of something happening. I see it all the time: my life moving ahead of me in small, missed moments. I see a glitch in the future. I am running with a child in a stroller, and then the child disappears, and there is only an empty stroller. I finish a book and immediately forget everyone’s name. I am holding out flowers; I am saying here, these flowers are for you, and in that moment right before I give them, the flowers disappear, and I only have an empty hand. 

I think that, in these moments, what I am really saying to myself is what would be the worst place to be left out? I don’t want to be elided. I don’t want to be omitted. I don’t want my heart to skip a beat, to beat too slow, to beat too fast. I think that what I am really saying to myself is that I am scared — terrified, actually — of frailty and its limits, of knowing that there is something about presentness — about being here, in that space where nothing can be left out, because it is happening now, and now, and now — that I am still learning.

And so I speak in the present tense. And so I press my hands together each day and tell myself that it is like prayer. Please let me be here; let me stay. And so I count the yellow windows in the black night from the moving train. And so I lose count and start again. And so I tell the one I love that the river from my childhood reminds me of the river in Joni Mitchell’s song. And so I run my hands along things: chain link fences, triple-painted gates, countertops, and bars. And so I anthropomorphize the animals, call the fly inside the apartment my little guy and click my tongue and wish him well. And so I order the sage-butter tortellini one day, chicken fingers the next. And so I say so what, it’s date night at the diner. And so I remember to laugh. And so I do: I laugh even when it’s hard. And so I remember that it’s this moment I want, before it becomes the next, where anything could happen and anything could not. I don’t remember that, the not. When I awoke, I remember I saw your face. 

***

Devin Kelly is the author of In This Quiet Church of Night, I Say Amen (published by Civil Coping Mechanisms) and the co-host of the Dead Rabbits Reading Series. He is the winner of a Best of the Net Prize, and his writing has appeared or is forthcoming in The Guardian, LitHub, Catapult, DIAGRAM, Redivider, and more. He lives and teaches high school in New York City.

***

Editor: Krista Stevens

Copy editor: Cheri Lucas Rowlands

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Before he sits down to write, Pravesh Bhardwaj looks for inspiration. Nearly every day, he reads a short story freely available online and shares it on his Twitter thread. Each year he chooses his 10 favorites to share with Longreads readers.

“In Flux” by Jonathan Escoffery (Passages North)

Jonathan Escoffery’s If I Survive You is a collection of interlinked short stories following a Jamaican family living in Miami. “In Flux” is excerpted from this collection.

“Why does your mother talk so funny?” your neighbor insists.

Your mother calls to you from the front porch, has called from this perch overlooking the sloping yard time and time again since you were allowed to join the neighborhood kids in play. Always, this signals that playtime is over, only now, shame has latched itself to the ritual.

Perhaps you’d hoped no one would ever notice. Perhaps you’d never quite noticed it yourself. Perhaps you ask in shallow protest, “What do you mean, ‘What language?’” Maybe you only think it. Ultimately, you mutter, “English. She’s speaking English,” before heading inside, head tucked in embarrassment.

In this moment, and for the first time, you are ashamed of your mother, and you are ashamed of yourself for not further defending her. More so than to be cowardly and disloyal, though, it’s shameful to be foreign. If you’ve learned anything in your short time on earth, you’ve learned this.

“To Sunland” by Lauren Groff (The New Yorker)

Two grieving siblings must take a road journey in this dark and complex story by Lauren Groff.

He woke to an angry house and darkness in the windows. Aunt Maisie had packed his suitcase the night before and left it near the front door, and so he dressed himself without turning on the light and came out and dropped the pajamas on top of the suitcase. She was in the kitchen, banging the pans around.

Buddy, she said when she saw him, set yourself down and get some of this food in you. Her eyes were funny, all red and puffy, and he didn’t like to see them like that. When he sat down, she came up behind him and hugged his head so hard it hurt, and her hands smelled like soap and cigarettes and grease, and he pulled away.

He ate her eggs, which were like his mother’s eggs, though her biscuit was not like his mother’s biscuit; it was too dry, and there was no tomato jam. When he was finished, she took his plate and fork and washed them.

“Thoughts and Prayers” by Ken Liu (Slate)

Ken Liu’s disturbing story is told by the family members of a young woman killed in a mass shooting. The story is included in Ken Liu’s collection The Hidden Girl and Other Stories.

So you want to know about Hayley.

No, I’m used to it, or at least I should be by now. People only want to hear about my sister.

It was a dreary, rainy Friday in October, the smell of fresh fallen leaves in the air. The black tupelos lining the field hockey pitch had turned bright red, like a trail of bloody footprints left by a giant.

I had a quiz in French II and planned a week’s worth of vegan meals for a family of four in family and consumer science. Around noon, Hayley messaged me from California.

Skipped class. Q and I are driving to the festival right now!!!

I ignored her. She delighted in taunting me with the freedoms of her college life. I was envious, but didn’t want to give her the satisfaction of showing it.

In the afternoon, Mom messaged me.

Have you heard from Hayley?

No. The sisterly code of silence was sacred. Her secret boyfriend was safe with me.

“If you do, call me right away.”

I put the phone away. Mom was the helicopter type.

As soon as I got home from field hockey, I knew something was wrong. Mom’s car was in the driveway, and she never left work this early.

The TV was on in the basement.

Mom’s face was ashen. In a voice that sounded strangled, she said, “Hayley’s RA called. She went to a music festival. There’s been a shooting.”

“In a Jar” by Morgan Talty (Granta)

“In a Jar” comes from Morgan Talty’s collection Night of the Living Rez. The story is set in Maine on the Penobscot Indian reservation where young David finds a jar of teeth which might be a curse left by someone wishing David’s family ill.  

On those steps I wasn’t playing for too long before I lost one of my men to a gap between the stairs and the door. It was a red alien guy, and although he wasn’t my favorite, I still cared enough about him to go get him. Looking behind the steps, my knees were wet when I knelt in the snow, and my hands were cold and muddy when I pulled myself up. The sun warmed my neck, and a sliver of sunlight also shone behind the concrete steps, right at the perfect angle, and in the light I thought I saw my toy man. But when I reached into the slush I grabbed hold of something hard and round instead. I pulled it out.

It was a glass jar filled with hair and corn and teeth. The teeth were white with a tint of yellow at the root. The hair was gray and thin and loose. And the corn was kind of like the teeth, white and yellow and looked hard.

‘Mumma,’ I said. ‘What is this?’

‘David,’ she said from inside the shed. ‘Can you wait? Please, honey.’

I said nothing, waited, and examined the jar. My hand was slightly red from either the hot glass sitting in the sun all afternoon or from the cold snow I crawled on.

Mom came out of the shed, squinting in the bright light.

‘What’s what, gwus?’ she said. Little boy, she meant.

I held the jar to her and she took it. I watched her look at it, her head tilted and brown eyes wide as the jar. And then she dropped it into the snow and mud and told me to pack up my toys. ‘No, no, never mind,’ she said. ‘Leave the toys. Come on, let’s go inside.’

She got on the phone and called somebody, whose voice on the other end I could hear and sounded familiar. ‘I’ll be by,’ he said. ‘I can get there soon. Don’t touch it, and don’t let him touch anything.’

“Ringa Ringa Roses” by Maithreyi Karnoor (The Bombay Literary Magazine)

Karnoor, a poet, translator, and novelist writes some memorable women characters in this short story.  

Rituparna had been an ideal student. She hung on to Sameer’s every word and spent long hours with him in the studio. She was also a good guest – she not only helped with the chores but took on some of the household responsibilities upon herself and was always thanking Aruna for allowing her to stay. ‘This is not an internship, this is the continuation of the guru-shishya tradition,’ she would say and jokingly call Aruna her ‘guru-ma.’ After this, there was no way Aruna could have been threatened by the proximity of her husband to this sultry, curly-haired woman nearly 15 years their junior. Moreover, Aruna was herself every bit the shade of monsoon clouds with a cascade of ringlets like the falling of nights that held the promise of laughter in them. She had turned many a head in her time and though slightly heavier under the chin now and with some grey peeking out at the temples, she was aware of her charm. That’s why she noticed nothing when a month later, stylishly unkempt Sameer began paying special attention to his grooming. And that’s why she noticed nothing when guru and disciple began going on long walks into the hills to discuss art history. She was just happy to have the house to herself and enjoy the peace of solitude. She noticed nothing when something furtive crept into Sameer’s behaviour and Rituparna began avoiding eye contact. That’s why it took her a couple of hours before realizing something was amiss when one day she came home from shopping for supplies to find them both missing and his car gone.

“Wisteria” by Mieko Kawakami (Astra Magazine) (Translated from the Japanese by Hitomi Yoshio)

Mieko Kawakami’s novel Heaven was short-listed for the International Booker Prize in 2022.

It took only thirty minutes to cut down the wisteria tree. Its roots, abandoned on the dirt, resembled arms that grasped at something in midair. The excavator crushed everything, mixing the laundry pole, the flowerpots, and the stones. It trampled the porch and bulldozed through the house, mercilessly clawing through the furniture and screen doors. So that’s how you destroy a house, I thought, half-amused and impressed. The old two-story house that had stood majestically in the corner lot diagonally across the road was being destroyed, and I was watching the spectacle from my second-floor kitchen window.

An old woman had lived there. I would sometimes see her. When we moved into the neighborhood six years ago, we tried to pay a visit to the house a few times, but no one ever answered the door. Every once in a while, I would pass the old woman on the street as she walked slowly around the house in the morning and evening hours, leaning against a cart. We never exchanged greetings, and yet I felt strangely serene in those moments. She always wore a black blouse with a black cardigan draped over her shoulders, and in the spring evenings, I would see her walking slowly out of the rusted gate onto the sidewalk with a broom and dustpan in her hands. When the wisteria tree shed its flowers, the gray asphalt would be covered in shades of white and pale purple, and every time the wind blew, the petals would dance in the air. The old woman would spend a long time sweeping up those petals from one corner of the road to the other. The petals fell even on seemingly windless nights, and the following day, the old woman would emerge slowly with her broom and dustpan again. This would continue until the flowers were gone. But I had not seen her recently. When was the last time I saw her?

“Just a Little Fever” by Sheila Heti (The New Yorker)

A bank teller falls in love with an easygoing older customer who doesn’t want to have an exclusive relationship.

“What is your name, dear?” he asked carefully, pulling out his wallet and putting it down on the counter.

“Angela,” she said.

“Angela, my name is Thomas.” He handed over his bank card. “Could I please have three hundred dollars in cash from my savings account?”

She rolled her eyes slightly, but as soon as she did she regretted it. She liked the man, and even if this was something that could have been done at the A.T.M. she shouldn’t have rolled her eyes. She was simply so used to disliking her customers, and she immediately apologized. “I’m sorry I rolled my eyes. It’s just habit.”

“A lot of things are habit,” he agreed, and didn’t seem offended.

“I have lots of bad habits,” she said.

“I do, too,” he said. “It takes a lifetime to get rid of them, and even then that is not enough time.”

As she counted out his money, she asked, “What habits have you overcome and which do you still have?”

“I no longer smoke or drink, but I tell little white lies. In fact, I do smoke and drink sometimes. No, I guess I haven’t overcome any.”

“I forget to exercise, and I eat junk food all the time.”

“It doesn’t matter,” he said. “Your body knows what it needs better than you do, better than all the magazines do, better than the doctors do, better than your girlfriends do. You just keep eating your junk food and lazing around.”

“Thank you,” she said. “No one has ever said that.”

“You do whatever you want. It really doesn’t matter.”

“Tumble” by Sidik Fofana (Electric Lit)

When her promising career is halted by the betrayal of a childhood friend, a young woman finds it difficult to reconcile her new situation or with the childhood friend who faces eviction. “Tumble” is one of eight interlinked stories in Sidik Fofana’s debut collection Stories From the Tenants Downstairs.

Usually, they give you time. You might see a notice on someone’s door for the whole year. Now, several units were getting one on the same day. 

So less than a week into my time as a building liaison, Emeraldine hands me a printout of Banneker tenants who got notices in the past month—twentysome in all. She does it with this attitude like she’s waiting for me to object, but I just take the list and act like the new worker who’s happy to get work. 

We gonna start setting those folks up with the Citizens Legal Fund, she goes. 

I hold up the list doing my best to murmur the names. Michelle Sutton, Darius Kite, Verona Dallas. Then I get to one that cold knocks me out. I move it close to my face to make sure it’s not a mistake. Kya Rhodes. 

“The Americanization of Kambili” by Tochi Eze (Catapult)

Tochi Eze’s story about two sisters announces the arrival of another promising writer from Nigeria.

I was six years old when Kambili was pink and soft. Dad and Mum were loud with their joy—after five years of trying again, waiting again, Kambili was their prize at the end of those frantic years. Daddy’s trophy. Mummy’s answered prayer. Mine to watch and care for.

Mummy had returned from the hospital that Sunday after mass while Daddy fried yams and egg sauce in the kitchen. I could still taste the hot honeyed Lipton tea stinging my mouth when Daddy waltzed out to the parlor, swaying to highlife music from Oliver De Coque, his happiness hung on his neck and lips, on the bridge of his nose. I wanted to pull his neck to my chest, hear his laugh close to me, tickling me till I was bouncing and laughing too. I reached out, my arms wide open in their endless regard for him, wanting, even at six, to be picked up and lifted in the air. But then the gate rattled, the car honked, and Daddy and I knew that Mummy was back. She stepped out of Baba Kunle’s yellow taxi, with grandmama behind her, both of them smelling of white powder and fresh baby.

When Kambili was five months old, I snuck into her room as Mummy fried akara in the kitchen and I pierced her tiny baby shoulder with a razor. I watched her baby blood spurt into the sheets, and I screamed, and she screamed, and I ran to fetch Mummy.

“Happy Family” by William Pei Shih (Ursa Story)

Ursa Story Company, helmed by Dawnie Walton, Mark Armstrong*, and Deesha Philyaw, offers audio and web versions of their stories. “Happy Family” is set in a Chinatown restaurant in a bygone era.

When the real estate business was failing, and my parents’ marriage was also failing, my mother and my stepfather took out a second mortgage and opened a restaurant. This was on Grand Street, on the other side of Chinatown. My parents christened it “Ga Hing” for “Happy Family,” which didn’t make sense to me at the time because we were barely a family, and nowhere near happy. My stepfather wasn’t happy because he played mahjong, and had accumulated the kind of debt that was so impossible to pay off, he was convinced that turning back to the game could save him. My mother wasn’t happy because she said that she already knew what it was like to be poor, and that being poor again was worse because it was now entangled with bitterness and regret. I wasn’t happy because I somehow understood, even then, that there were things that I would never be able to get back. I was fourteen; I was about to start high school. In short, it was the end of my childhood. 

It was expected of me to work at Ga Hing, to contribute for the good of the family. And while my classmates could spend their afternoons at the Ice Cream Factory, or roam the halls of Elizabeth Center for anime action figures and keychains and fancy pens, I had to work at the restaurant, and at most, wish that I could be elsewhere. One wouldn’t think that at such a young age, I could learn how to take orders, serve dishes, or even work the register. But when push came to shove, I found that I could learn rather quickly. 

***

Looking for more?
Here’s the Twitter thread Pravesh uses to collect and share short stories. Be sure to check out Pravesh’s story picks from 2022, 2021, 2020, 2019, 2018, 2017, 2016 and 2015.

Pravesh Bhardway wrote and directed “Baby Doll” an Audible Original podcast in Hindi (featuring Richa Chadha and Jaideep Ahlawat).

*Mark Armstrong (emeritus) is the founder of Longreads.

This story was funded by our members. Join Longreads and help us to support more writers.

Heather Lanier | Longreads | January 10, 2023 | 24 minutes (6,652 words)

Left Atrium

Blood enters the left atrium, a thin-walled upper room in the house of the heart, through the pulmonary veins, and you enter the Heart Wing through a southern-facing door engraved with a health insurance logo. You step into a tall, red-ceilinged room with crown molding where giant blood molecules float across beige walls and children dart hummingbird-like between stations. Blood enters the left atrium rich in oxygen because it just came from the lungs, and you — if you’re me — enter the museum’s Heart Wing well-fueled because you’ve just dined on a packed lunch in a courtyard outside. 

A spiral of life-sized plastic hearts rotates at the center of one station. The hearts are in ascending order, from smallest to largest. The heart at the bottom is the width of an M&M. It’s the heart of a woodpecker. Someone could pop it in their mouth and use it for a tooth implant. Your own heart — or one roughly the size of people like you — is midway up the spiral, just beneath “ostrich” and above “large dog.” 

Near the spiral, an unassuming gray rubber bulb is at waist level. Shaped like a joystick, it invites you to take hold and squeeze. Above the rubber bulb, a fake heart sits in a Plexiglass box. Can you keep up with your heart? a screen beneath the fake heart asks. Can your hand mimic the heart’s pace for even a minute? Seventy-four squeezes of the bulb?

One, two, three … With each beat, the heart in the Plexiglass box glows pink at its base, illuminating raised coronary veins. The screen keeps tab: How well is your hand mimicking the cardiac rhythm? At 12, you’re a beat behind. At 37, you’re two beats off, and your forearm kind of aches. At 47, the bulb is so squeezed of air that it won’t re-inflate, but you get the point: Your heart is the muscle that never stops. It beats 100,000 times a day, says the display. While you fret about your bank account, your forehead wrinkles, or that person who hasn’t replied to your email, the heart — your heart — just keeps on keeping on in a way no other muscle could.

And this is what, if you are me, you might learn early on and can’t quite shake in the Heart Wing of Philadelphia’s Franklin Institute: The heart is an overworked organ. It’s the muscle that never unionized. You are in a daunting codependent relationship with an organ that, if it were a person, should file a lawsuit against you, should summon the ACLU. The heart needs a vacation, a chaise lounge by the sea, and a mai tai with an umbrella. 

Nobody should be drinking mai tais though, at least not according to the section of the Heart Wing that I’ll call The Corner of Guilt and Doom. At its center, a clear column pushes plastic discs through water. They’re meant to be platelets but they resemble cinnamon red-hots or valentine candies, swirling up and down several feet in the clear cylinder. Their cheeriness is misleading. Beneath them, at eye level, a pair of stony-gray wings stands to the left of a photo of similar wings, leathery pink. Except they’re not wings. Plastinated human lungs, reads the sign. Quit smoking, reads a larger one. Preemptive strike, I think, knowing the median target age of the museum visitor is 10. 

Another station invites you to toss bean bags onto a scale. Are You at Risk for a Heart Attack? Do you drink alcohol? Have high cholesterol? A family history of heart disease? Yes? Then toss red bean bags onto the side of the scale marked “high-risk.” Watch the bean bags pile up like pillows at a dolls’ slumber party. (Here’s something the museum omits from its advertising: Glean your chances for the nation’s top cause of expiry!) Do you exercise? Maintain a low-to-average weight? Have no family history of heart disease? Toss green bean bags onto the low-risk side of the scale. Imagine, as I do, a Barbie doll lying upon them, her plastic life never sending her into cardiac arrest. 

I’ve recently entered the age where I get screened for colon cancer. I’ve recently received a call from my doctor that my cholesterol is alarmingly high and I should go on medication, despite running and eating whole grains and having whatever body-size markers the medical industry deems “low-risk.” It’s the oldest story in the book: I’m mortal, and somehow surprised by it. Inching further into my 40s, the collagen-full curve of my chin has been replaced by what some might, accurately, call “jowls.” A cartoonish number 11 sits between my eyes in Zoom meetings whether I’m troubled by the budgetary changes or not. 

A few weeks ago, the heart of a friend stopped inexplicably in his sleep and didn’t restart. He was 42. A year younger than me.

In his essay, “Joyas Voladaros,” the late Brian Doyle tells us that each species gets roughly the same number of heartbeats in its lifetime. Both the hummingbird and the giant tortoise have an equal number of ticks. And tocks. Doyle says that number is about two billion. The heart-as-clock is a cliché the Heart Wing does not entertain.

My heart has beaten approximately one billion, 500 hundred million times in its lifetime, which happens to also be my lifetime. It beat 150 more times while I calculated that fact. Your heart has either beaten more or less than mine, depending on your age. If your heart has beaten less than mine, you are statistically less likely to meditate on the finitude of your heartbeats. 

I can’t help myself: I throw the bean bags. I watch the little pillows pile onto both sides of the metal scale. Like nearly every human who plays the game, I have risk. The scale cannot reassure me that I will not die tomorrow. The surest way to live with zero risk is to not be alive. But then we couldn’t stand in a crowded room of ornate crown molding and toss bean bags foretelling our chances of death.  

Left Ventricle

Blood is continuously moving through arteries and veins and capillaries that measure 60,000 miles long. Where do you mark the start of a daily circuitous trip that stretches the length of the globe twice over? Blood might symbolize life, but it’s not like life: It doesn’t have a clear entry point the way my kale salad entered my body hours ago in the courtyard, or the way the baby version of you entered this world slippery and wailing, at the start of your story. 

But if you begin the life cycle of blood in the left atrium, the next room it visits is the thicker-walled, larger room below it, the left ventricle. It’s the most powerful room in the heart. And if you start the Heart Wing in the room that contains the heart-in-a-Plexiglass-box, the next room you flow into displays the museum’s most iconic feature: a walk-through replica of the human heart.

Two stories tall, 100 times the width of my heart and yours, the giant heart looks alien. It consumes half the room. Its bulbous red self is gripped claw-like by raised blue veins and red arteries. A red aorta emerges from its top. A blue vena cava hugs its right side like the trunk of a ghastly Seussian-blue tree. These vessels ascending from and extending into different parts of the Heart Wing suggest that the entire museum is somehow subsumed by the circulatory system of a giant. The museum says this heart befits someone 220 feet tall. 

You can enter the giant heart. You can let proportion shrink you to the size of a blood molecule and traverse the four chambers, through tricuspid, pulmonary, mitral, and aortic valves. That is, you can do so if you aren’t in a wheelchair or don’t need handrails to manage steep steps. And you might do so if you aren’t yet menopausal like one of my museum guests and aren’t sent into raging hot flashes — because the giant heart is warm as blood and stuffy as a concert port-a-potty. Bipedal and of (albeit waning) reproductive years, I round the back of the 28-foot-wide organ, walk along a muddy-pink wall that’s lumpy and gently marbleized and meant, I’m assuming, to evoke the unsettling aliveness of human flesh. I duck beneath a big blue artery. The drumming gets louder. 

I have not yet said this: The entire Heart Wing throbs with a nonstop lub-dub, lub-dub. Deep as a bass drum, pulsing about once per second, it’s the constant auditory reminder that the organ in your chest can’t stop, can’t stop, can’t stop. This means that, if you’re like me, the zone under your ribs — just slightly left of your sternum — starts to ache.

Brian Doyle titled a book about the heart The Wet Engine, but this giant non-ADA-compliant heart is dry, made of fiberglass and paint. When you step into it, you meet the glowing blue cave of the right atrium. You climb a few steps, then descend a few more into the right ventricle, where the wall’s white ridges evoke a whale’s palate. A kid shouts, Ew, gross, and you ascend uneven red steps. You arrive at a coverless bridge that serves as a brief reprieve from the cardiac claustrophobia, then reenter the heart through beigey-pink hallways, crawling with fake capillaries and fluffy white bronchi. You’re in the lungs, a sign says, and the lub-dub is louder. When you head into the left atrium, you might glisten with sweat. A sign says you’re fully oxygenated. You descend red steps into the left ventricle, head out the heart through another narrow stairway labeled aorta, and pour out of a flesh-painted wall and back onto the museum’s bluish carpet, your own heart now quickened. 

“I remember rushing into it as a kid and then getting a queasy feeling … and bolting to the exit,” wrote journalist Greg Robb on Twitter, when the Philadelphia Inquirer asked for memories of the iconic giant heart. “Couldn’t wait to do it again and again,” he added. This afternoon, kids run into the vena cava entrance, pop out the flesh-walled exit, then round the bulbous veiny beast to enter it again, like the giant heart is a playground slide and they want another turn. They’re giddy and panting. They have all the time in the world and none of the patience for it. I ran around the same giant heart 30-some years ago. Studies prove it: The older you get, the faster the days and weeks seem to pass. Or, as another person responded about the heart, but could have easily written about time: “The older I got, the more it got tighter.” Because the stairways are narrow and the clearances are sometimes under five feet, the giant heart seems designed for children — people with zero face wrinkles and very few reminders that we’re not immortal. That we’re not permanent fixtures on this planet. That we have endpoints. 

The giant heart was never meant to be permanent. Originally constructed in 1953 of paper maché, chicken wire, and lumber, it was the brainchild of Dr. Mildred Pfeiffer, a physician who traveled Pennsylvania, lecturing on cardiovascular health. Popularity kept the heart alive, as have reconstructions and upgrades — “surgeries,” the museum calls them. The version I walked through had a distinct but unplaceable smell, built up from years of heat and sweat and the occasional puking kid. This heart does not smell. Its most recent upgrade involved a paint job and a brand-new beat. 

The old pulse — the one I heard, the one that sent journalist Greg Robb bolting in panic — was synthetic. Now, the lub-dub is drawn from a database of real human hearts. Now, a bunch of heartbeats have been recorded and mish-mashed to stay alive long past their owners.

My friend whose heart stopped was a spiritual seeker and adventurer. He had what some would call a big heart, although not made of fiberglass, and probably not any bigger than yours or mine. His face held a bright-eyed wonder usually reserved for toddlers. His eyes lit in awe at the stick figures my children drew or the dandelions they plucked. He was mostly my husband’s friend, which is how he became my friend, too. They had been Trappist monks at the same monastery, at different times. They’d experienced the same tender wisdom, gentle correction, and odiferous flatulence from elder brothers in long robes who prayed the Psalms six times a day. 

Each time he stayed with us, it felt like we were hosting a beloved brother who we rarely saw but wished lived closer. At night, he sat on our living room rug cross-legged, telling us stories of miracles he traveled to see: a monk who could walk through walls, another who could hide a candle behind his back and reveal the flame by turning his skin and organs transparent. He traveled widely, our friend, our citizen of the world, to places like Mexico and Ireland, and Bhutan. He interviewed Christian teachers and Buddhist masters with a tape recorder, searching for — for what? For the truth of things? For God? For who or what we really are? I can’t say for sure. If we, as he believed, can pass through walls, can render our skin and bones invisible — maybe we are more than flesh. Maybe we are citizens of a world even bigger than this one. 

When he left, I said, “Come back anytime” and meant it, snapping a photo of him with my children. In the picture, he’s kneeling at their level on the grass, smiling the unassuming, simple, luminescent smile of a man who is alive, truly alive, and therefore looks like he’ll be alive forever.

Aorta

Blood exits the left ventricle through the aorta, and the only way to exit the giant heart is to climb up the staircase labeled aorta, hang a left, and walk down the steps into the museum again. 

Just across from the giant heart is another reminder that, no matter how much you think you’re immortal, your body will meet its last moment. Heavy black rectangular slides sit inside a case taller than my body — and possibly yours. Grab a silver handle and you can yank a slide out of the case. I do. It shows the outline of a human body. The ovals and globules and blobs of someone’s innards float like islands inside a yellowy human-shaped ocean. The blobs are labeled: Brain, deltoid, lung. A plaque on the case explains what you’re looking at: razor-thin slices of a man who was frozen solid after he died. He donated his body to science. There are four more slides. I can’t draw them farther than a few inches before wanting to push them back with a thud.

Because he was so young, and his death so unexpected, an autopsy was performed on my friend’s body. Only his close friends and family know the answers, and if I knew them, I wouldn’t share them here. Some things should stay inside the body of a family. 

Slicing apart dead bodies was forbidden in many cultures, like Ancient Rome and Medieval India. The body was seen as too sacred, and necessary to preserve for the afterlife. But in 16th-century Hispaniola, when conjoined twins Joana and Melchiora Ballestero died, the Catholic Church ordered an autopsy. Did they have one soul or two? When two hearts were found, the girls were declared to have two separate souls. The soul, it was believed, resided in the heart. 

Here’s a miracle my friend would have liked: When 90-year-old Tibetan Chokpa Tenzin still felt warm several hours after her heart had stopped, her family postponed the funeral arrangements. Several days later, Chokpa’s skin was still supple. “She was no longer breathing,” wrote one journalist, “but she looked calm, her skin remained warm, as if she was in a deep, eternal sleep.” She stayed this way for seven days. 

And when the Dalai Lama’s tutor Geshe Lhundub Sopa died, Tricycle Magazine described him as “lean[ing] upright against a wall, his odorless body perfectly poised, his skin fresh as baked bread. He looked like he was meditating.” His heart had stopped three days before. He too remained this way for seven days.

According to Tibetans, these people had entered a rare post-death state called thukdam, when the body is clinically dead but the person doesn’t decompose for days, sometimes weeks. Tibetans say it’s because the person’s consciousness is engaged in a deep form of meditation called “clear light” meditation. When Tibetan monk Geshe Jampa Gyatso was in thukdam, a physicist measured his blood-oxygen level at 86, even though his heart hadn’t beaten in 10 days. 

Decades after Saint John Vianney of France died, he was exhumed and found to have a fully intact heart. Called the “incorrupt heart,” it now travels the world in a reliquary. The reliquary looks like a miniature castle, with glass walls, gold spires, and a gold-shingled roof. The heart sits on a red velvet cushion. It resembles a brown fossil or a stone valentine. Visitors say they can spot a bit of pink in its center. 

If the Heart Wing displayed Vianney’s heart, it would be the opposite of the heart-in-a-Plexiglass-box. Where one ticks away your seconds, reminding you of the countdown in your chest, the other stoically suggests that it never quite died — not the way things normally do.  

At secular-humanist funerals, people say the dead live on through our memories, which suggests that people really die not when their hearts stop beating but when ours do. This means that we don’t die until the people who remember us do. It’s meant to be comforting, but I find it a sad replacement for miracles or magic or actual immortality.

Septum

Between the left and right chambers of the heart is a muscular wall called the septum, and between the two major rooms of the Heart Wing are two giant severed arteries. If you’re a kid, you can crawl through them, as mine does. If you’re an adult, you’ll probably stand and watch, analyzing the layers of flesh in the arterial walls. Thanks to a layer of yellow clumps, one artery is significantly narrower than the other, crowding the kids with simulated fat until they can’t make it through. This artery probably warrants its owner to go on medication. There’s a hole at the top of both arteries, and if you’re a kid, you can poke your head out and wave to people, like your parents. You can wave to the people who gave you life, the people whose hearts — if you’re lucky — will stop beating before yours. Riley, look at Daddy, says a man to a toddler in the artery. She won’t quite put her face in the frame. Riley, stand up, look at Daddy. Smile, Riley. I snap a photo of my smiling daughter, her face framed by the fatty artery’s opening.

There’s a hole in my heart / That can only be filled by you. Those are the lyrics of a song I blasted when I was a ‘90s teen. Hole hearted, the large-mouthed, long-haired frontrunner sang over and over. This song is now played on oldies stations. The phrase, hole in my heart, suggests an emotional absence, a longing. A gaping need that begs to be filled.

Maybe that’s why it’s so dramatic to say my daughter once had a hole in her heart. This is what a cardiologist told me when she was a few months old. This hole was in her septum, the wall that separates the left chambers from the right ones. Because the oxygenated blood traveling from the lungs pours into the left chambers, and the deoxygenated blood flows into the right chambers, a hole in the septum means the two kinds of blood could get mixed — which is trouble. A hole in the heart speaks to the potentially unmet physical need for oxygen. “Look for blue lips,” a nurse told us on the phone. 

Her lips did not, thankfully, ever go blue. The hole in her heart eventually closed on its own. Called an atrial septal defect, it’s the most common cardiac anomaly. But doctors don’t say anomaly. They say defect, which always conjures in my mind a factory line — hearts spaced evenly apart on a conveyor belt, traveling toward inspection. Some are deemed defective. Some don’t fit industry standards. They get sent back, called out of order, subtracted from the bottom line. 

Because of my daughter’s heart condition, I spent a fair amount of time in the heart wings of children’s hospitals. They sometimes resemble art museums, with kid-created drawings of hearts, large heart sculptures, and even a lava-lamp-like installation with valentine-hearts floating inside. A painting in one exam room featured multicolored hearts in the sky, each with a set of wings. Hearts soaring to heaven. Hearts eternal. 

I’ve reasoned that all this art is because the heart is a high-profile organ. It elicits an emotional response. Tiny hearts inside tiny children who need big surgeries — this makes us bite our lips and donate.

But once when I arrived at the room to consult with the cardiologist about my daughter’s abnormal echocardiogram, he said this: The heart is just a pump. We like to sentimentalize it. But really, it’s nothing more than a pump. I nodded with my infant in my lap, which meant I held not just my love but my love’s heart and the hole that heart contained. 

I was being told: There is nothing magical about the heart. There is nothing mystical or meaningful. The heart is a machine in the factory of the body. The heart pumps, you live, it stops, you die, the end.

When my father died, I felt like I had a hole in my heart. Rather, I felt like the place where my heart was had become a hole. My chest ached. I thought it was a metaphorical ache. I called it the grief hole and imagined a cosmological black hole under my sternum, a thing made of nothing yet drawing absolutely everything into it. A gravity of grief.

Cardiologists now recognize a condition called takotsubo cardiomyopathy, or “broken heart syndrome.” After a big breakup or the death of a loved one, the heart weakens for an acute time. “The grieving heart,” says cardiologist Dr. Sandeep Jauhar, “appears stunned and frequently balloons into the distinctive shape of the takotsubo, a Japanese pot with a wide base and a narrow neck.” Patients with hearts in the shape of this pot are at greater risk of a heart attack. 

Two days after a teacher was killed in the Uvalde school shooting, her husband died of a heart attack.

Although I’ve known plenty of people who’ve died, I’ve never experienced “the grief hole” other than 20 years ago, when my father died. I did not, for instance, experience it when my friend died. 

But sometimes I think maybe I’ve just gotten used to living with something akin to it, because when I hear the highest note in Barber’s “Adagio for Strings,” or when I remember I’ll someday pick up my child and put her down and never pick her up again — either because she’s too heavy or I’m not here or (unthinkably) she’s not here — the place I can most accurately call “my heart” throbs unmistakably, and it feels like it’s reaching back to a moment when I lay in a cot beside my father’s deathbed and reached my arm across the space between our mattresses so I could slip my hand inside his still-alive hand. 

Before a man received the first heart transplant, his wife reportedly asked the doctor if he would still love her.

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Jauhar calls for a change in how medicine treats heart disease. He wants us to consider not just exercise and low-fat diets but love. He cites a study where two sets of rabbits are both fed high-cholesterol diets. Rabbits in one set are petted and held, talked to, and played with, while the other rabbits are left alone. The loved rabbits have 60% less aortic disease than the left-alone rabbits, even with similar blood pressure and cholesterol. “The heart may not originate our feelings,” Jauhar said, “but it is highly responsive to them. A record of our emotional lives is written on our hearts.”

Get yourselves a new heart and a new spirit, God tells the people of Israel.

Right Atrium

There are only two rooms in the Heart Wing, but four in the actual heart. Blood enters the right atrium oxygen-depleted, and I stroll back through the Heart Wing’s two rooms fatigued.

Heart valves are meant to be like one-way swinging doors — their closing is what makes the lub and dub. Tiny threads tether the flaps of the valves to the heart wall. If blood flows backward through the heart, the valves aren’t doing their job. You don’t want blood flowing in reverse. That’s called regurgitation.

Still, I keep reversing course in the Heart Wing, revisiting spots I’ve already seen. I pass the heart-in-a-Plexiglass-box. I pass the spiral of animal hearts. I pass a wall of plastic tubing meant to show me how hard my heart must work to pump the blood down my legs and up again. I look for beauty here, for the sense that I’m not doomed at any moment should a fist of muscle decide to stop. I look for an understanding that the heart is more than a belabored mechanism, that my body is more than a machine — one I need to try to keep alive forever, but never will. 

The museum is not coy about the fact that it views the body as a machine. The original heart exhibit from 1954 was called “The Engine of Life.” Today, the museum has an article on its website called “How Your Body is Like a Factory.” In a car factory, the article says, “One team might make steering wheels. Another team might make seats…. They all share a common goal: to make cars. Your body operates in much the same way … [with] the common goal of keeping you alive.” 

By equating staying alive with making cars, the museum echoes the priorities of late-stage capitalism. If you’re not making gadgets or deals or website content, who are you? Like a grinding factory of the Industrial Revolution, your worth is measured by your production — your bolted widgets or sent emails or new clients — which someone can then commoditize. 

In the years we didn’t know were his last, our friend took small troupes of spiritual seekers to Bhutan and met with Tibetan Buddhist monks there. Bhutan measures its progress, not by emphasizing its GDP, or Gross Domestic Product, but by measuring its GNH: Gross National Happiness. In other words, Bhutan has attempted to rearrange the measurement of a nation around the well-being of its citizens rather than their economic output. If you’re a resident, the Gross National Happiness Commission surveys you every five years, asking things like, How many hours do you sleep? How many hours do you work? How often do you quarrel with your family? Do you trust your neighbors? And because Bhutan is a Buddhist nation, it asks, How often do you meditate? How often do you pray? 

The survey takes several hours to complete. Participants receive a day’s wages. Their output for the day is a record of their well-being.

That the Heart Wing stresses me out is probably not good for my happiness index. But it’s also not good for my heart. “Fear … can cause profound cardiac injury,” says Jauhar. “Emotional stress … is often a matter of life and death.”

In the days after our friend’s death, I overheard my husband talking to different people on the phone. He repeated certain phrases. Forty-two. Died in his sleep. Funeral in a week. I know, man. I know. Light laughter. Heavy sigh. The conversations almost always drifted to this: He had a condition. A rare respiratory ailment that conventional western medicine couldn’t explain. 

This is what we do. We piece together the story of a death — and a life — the way we piece together a jigsaw puzzle. One picture that doesn’t make sense: dying at 42 in your sleep. Because a human heart has over two billion beats. And he didn’t get almost half of his. So the phrase, he had a condition, gets repeated into a receiver and changes the direction of the conversation, from shocked to somewhat pacified. As though any of our hearts couldn’t stop at any moment. As though all the beats are owed to us, not bestowed upon us, not graciously and mysteriously and troublingly given.

How can we all be machines, when the deaths of machines would never crush you the way the person you love most in this world will crush you when they leave it? Your heart might even balloon from the loss. Your heart might even stop.

Right Ventricle

It might not be until after you leave the Heart Wing, after you leave Philly entirely, once you’re settling into your home and yanking pots from cabinets for dinner, that you hash out to your beloved exactly why the museum made you feel drained. This is the person whose death — if it occurs before yours — would make your heart balloon into the shape of a Japanese pot. And that’s when your beloved could, as mine did, say to you: “Did you know the heart might not be a pump? Did you know they have no idea how blood actually moves through the body?” 

And your eyebrows, as mine did, might lift past the ceiling and your chin might, as mine did, fall through the floor, and you’ll tell your beloved: “No way.” You might even shake your head. The heart is a pump. You’ve been told as much for eternity, or since third grade. Then you might, if you’re me, spiral like a tower of spinning plastic hearts into research, where you learn that the heart-as-pump is not actually a fact. It’s a theory.

What’s the history of the heart-as-pump theory? When did we turn the circulatory system into a machine? Many credit 17th-century physician William Harvey, who discovered that blood moves in a circuit, from the heart and back to it. But Harvey never believed the heart’s mechanical function was the primary source of blood’s movement. He believed in a divine vital heat called calor innatus. This idea came from Aristotle, who said our vital heat is connected to something called pneuma, “the primal stuff of heavenly bodies.” Pneuma is an ancient Greek word for breath, but also for soul or spirit. 

In the fable that is the first book of Genesis, Adam comes to life when his Creator breathes into him. 

“I found the task so truly arduous,” wrote Harvey of his attempt to map circulation, “that I was almost tempted to think … that the motion of the heart was only to be comprehended by God.” 

The pump, gotta check the pump. My father-in-law repeats these words every summer when he aspires to a crystalline swimming pool. When I research how a pool pump works, in order to understand how people think the heart works, I land on a pool supply website. The first sentence reads: “The pump is essentially the heart of the swimming pool’s circulation system.” To try to understand the way an actual machine works, I’m pointed back to the body. 

Vascular anesthesiologist and professor Dr. Branko Furst cites a number of instances in which the heart, when intervened with during surgery, doesn’t behave at all like we’d expect if it were a pump. He and others also point out the heart’s relatively small size compared to the task for which it’s being credited. Less than a pound in weight, the heart must, over the course of an average 75-year life span, push 400 million liters of very sticky fluid that is made of molecules sometimes larger than the vessels through which the heart supposedly “pumps.” 

Admit it: You’ve made a fist and held it to your chest, just slightly to the left. You’ve marveled, maybe, as I have, at the size of the thing keeping you alive.

Furst says that as the field of cardiology advances, “the number of discrepancies between the observed phenomena and the constraints imposed by the existent circulation model is likely to increase.” In other words, as we intervene with circulation for treatment purposes, the heart will continue to behave in ways that make no sense if we think of it as a pump.

Years ago, I sat in a large meditation hall and listened to a teacher say over and over, “The heart is the organ of spiritual perception.” For the first two days of the five-day retreat, I thought she meant metaphorically. But after listening to her for a few days, I realized she meant literally. The heart is the organ of spiritual perception, she said, like the eyes are the instruments of sight, and the ears are the instruments of hearing. She was an Episcopal priest and meditation teacher, as well as a friend of our friend who died. The heart, she was saying, contains its own intelligence. 

In an experiment, participants were hooked up to a number of brain, skin, and heart monitors and shown 45 images on a screen. Two-thirds of the images were emotionally neutral: a tree, a cup. A third of the images were emotionally charged: a bloody corpse, a snake ready to strike. The images were shown at random — the participant had no way of predicting what kind of image would appear next. But approximately four-and-a-half seconds before an emotionally charged image appeared, the participants showed signs that their bodies somehow knew. Their reactions were physiologically detectable not in their brains, but in their hearts.

If, as Furst believes, the heart is not primarily responsible for the movement of the blood, then what is? He proposes that the heart interrupts the blood already in motion and that the blood possesses its own kinetic energy — a theory that harkens back to Harvey and Aristotle. In other words, maybe it’s not the heart that moves the blood. Maybe it’s the blood that moves the heart.

Maybe the heart, weighing less than a pound, is not an overworked organ meeting an unthinkable quota of labor. Maybe it simply supports something already in motion. Maybe we’re not walking around with doomed-to-stop clocks in our chests. Maybe we’ve just erroneously applied our Industrial Revolution work ethic to the organ that gives us our beat. Maybe we’re walking around with a miraculous, mysterious life force autonomously moving through us.

What makes your heart beat? asks a text box from the editor-in-chief of Pumps Magazine, a periodical put out by a technology company that makes pumps and motors. I expect a scientific answer involving electrical pulses and closing valves. But employees reply in their own text boxes: Old Hindi songs. Reaching high goals. Wild white horses. Travel. Pistachio ice cream.

Sometimes I’m comforted when we don’t fully understand things, when mysteries remain unsolved, and explanations are beyond our minds’ capacity to grasp them. Maybe that’s because when the mind releases a hard question — like why I’ll one day set my daughter down and never pick her up again, like why a 42-year-old friend died in his sleep — it drops that question down, finding answers in a place deeper than our minds, where a steady pulse still beats.

The heart, said the meditation teacher, is capable of living in spontaneous connection with something called the divine heart. And this intelligence of the divine heart, she said, is what lives beyond our death. “You begin to discover,” she said on day three of the retreat, “that the heart knows no death, and nothing is ever lost that has been held in love, if you know how to find it.” 

I think of the grown children of Chokpa Tenzin, placing a hand on their dead mother’s chest on a Wednesday, and still feeling heat on Thursday, Friday, Saturday. Thukdam, translated literally, means the mind in a deep meditative state. To date, no discernible brainwave activity has been detected from a person in thukdam. Mind in this case can’t mean the organ located inside the skull. It must point to a consciousness that exists somewhere else in our bodies. 

For a body in thukdam, the skin above the heart is what stays warmest. 

Pericardium

The pericardium is the sac in which the heart sits. It’s a fibrous membrane around the outside of the heart, providing protection. Without it, the heart could over-expand. The pericardium is the heart’s edge, its limit, its reminder to not go beyond its size.

The risk, of course, with an essay about the heart, is that it could go on forever. Expand to include every scientific fact, every mythic association. 

I haven’t, for instance, said that the heart of a blue whale weighs 1,000 pounds and beats just a few times per minute. 

I haven’t said that in 1673, a French nun reported that Jesus appeared to her with his heart on fire, visible outside of his chest. The sister said he spoke these words: My Sacred Heart is so intense in its love for humanity, and for you in particular, that not being able to contain within it the flames of its ardent charity, they must be transmitted through all means. Jesus’s heart, in other words, couldn’t be contained by his pericardium. 

Maybe we think of ourselves as machines because it’s been so long since we’ve seen miracles. Or maybe it’s hard to believe in miracles because we’ve thought so long of ourselves as machines. I want another night with my friend, telling stories of monks walking through walls and turning their intestines translucent.

Here’s something that borders on miraculous but that scientists in California confirm: The heart emits a magnetic field expanding outward in all directions and returning to the chest in a donut shape. One hundred times greater than the magnetic field emitted by the brain, it changes depending on our emotions. Anger, for instance, produces a markedly different magnetic field than appreciation. The field itself can be measured three feet from the body. Some believe the distance of three feet indicates, not the limits of the heart’s emissions, but the limits of the technology used to measure it. In other words, some suspect the heart might emit a magnetic field that extends much farther — possibly, however faintly, for infinity. 

Here’s what I’d like to see in the Heart Wing. Here’s what — as the editors of Pumps Magazine say — would make my heart beat:

A heart-shaped bag of fluid you can touch, heated to the precise temperature of Chokpa Tenzin’s chest a week after she stopped breathing.

The cells of Saint John Vianney’s “incorrupt” heart under a microscope. A graph revealing its chemical composition.

The heartbeat of the man who received the first heart transplant. His wife’s heartbeat when, after the operation, they reunited. A slideshow revealing all the things he enjoyed in the 112 more days that he lived.

A visual representation of my friend’s heart’s magnetic field, arcing like a donut around his body. 

And a platform that, when you stand on it, displays your own heart’s magnetic field. It would display whether you’re feeling anger or gratitude, grief or joy. Your heart’s magnetic field would project on the wall beside my friend’s, radiating three feet to touch his, radiating five feet past museum visitors, radiating twenty feet through the giant heart — radiating maybe even infinitely. 

Heather Lanier is an assistant professor of creative writing at Rowan University. Her memoir, Raising a Rare Girl, was a New York Times Book Review Editor’s Choice. Her poetry collection, Psalms of Unknowing, is forthcoming from Monkfish Publishing next year. You can find her on Instagram at @heatherklanier or at her newsletter, The Slow Take.

Editor: Carolyn Wells

Fact-checker: Julie Schwietert Collazo

Copy-editor: Krista Stevens