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Tyler squints at his reflection in the mirror. It’s been weeks since he looked — really looked — at himself in the mirror. He’s armored himself with Josh’s hoodie still warm from the dryer and still smelling like Josh: like sunshine, herbs on the windowsill and cotton candy. Yet there’s still that old, deep sense of unease trapped inside his body. Inside his bones, waterlogged with grief.
He feels squeamish, queasy, as if he was looking at something abject, indecent, forbidding. As if he was witnessing an accident in the making, eyes locked on a body torn to shreds — and he can’t stop looking.
Can’t stop seeing. Can’t stop taking it all in.
His throat burns.
His skin itches.
His bones feel a size too small.
He regards his image in silence.
There used to be meaty bruising on his left cheek, that’s healed now. A cut above his right eyebrow — Tyler slipped while brushing his teeth, his head colliding with the porcelain basin in his parents’ house. (Hard surfaces always win when you crash right into them: shower cubicles, bathtubs, glass tables. The stone floor in his parents’ scullery.) Everything else has healed: the broken collarbone, the dislocated shoulder, and the bruises the size of dinner plates. His body — a punching bag for everyone to see. To stare at. To judge.
His neurologists’s voice rings in his ears: Epilepsy is an unkind disease. And I'd say it's particularly unkind to Tyler.
Refractor temporal lobe epilepsy. What started as a diagnosis now feels like a verdict with no parole. All that stands between him and the disintegration of reality is a paper-thin membrane in your brain, bruised by the slightest trigger — until there’s nothing left except trembling hands and eyes rolled upwards. His tongue chewed to pieces. Muscles shivering with exhaustion. Or worse — the vacant goggle eyes he hates most. Eyelids fluttering like the wings of a trapped, terrified hummingbird as a generalized spike-wave complex engulfs his skull.
He doesn’t remember the seizures.
Not really.
What he remembers is the aftermath, worse than a hangover. Sneering and laughter. Embarrassment and shame. At school. At the restaurant he used to work. On the street right in front of his parents’ house.
I guess the lights are on but nobody’s home
(I can hear the laughs
When they find I've fallen down again
I can hear the laughs
And it hurts so bad I have to smile)
Sneering, laughter, and videos of him having seizures posted online. A thousand hits.
This isn’t the aftermath of a car crash or a fire, a horrific event that changes your life forever in an instant. Not the kind of tragedy that buys you viral sympathy.
No GoFundMe.
No strangers leaving flowers outside your house.
The cataclysm of catastrophic epilepsy is silent.
Quiet, eerily so.
It’s a thousand storms brewing beneath your skull. It’s tectonic plates shifting inside your mind, inching ever closer. It’s the floor upending underneath your feet. It’s sparks igniting your bones. It’s your brain, on fire.
Misfiring electrons, ripples on a pond.
But there’s nothing to see except his eyes rolling upward, his arms and legs stiffening, wrists and ankles bending at odd angles. Or perhaps he just feels a little off — until he can’t feel anything at all. Tyler used to fear that nothing more than anything else. Terrifying lapses in time, blank and faceless like a prairie, when his body moved and acted without him. His body an empty shell, a marionette jerked by tangled and knotted strings. Now, he welcomes unconsciousness — that inevitable, irrevocable fall into the abyss. The brain, after all, cannot feeling pain. Let his seizure-ridden, epileptic, misfiring brain deal with it all then if the wretched thing can’t feel anything after all. Let it handle the physical suffering — the bruising, the unpredictable side effects from medications. Let it manage endless appointments with doctors, physiotherapists, social workers and his psychiatrist all telling him the same. The jury has reached a verdict: It finds the defendant guilty.
The anger when a new medication inevitably fails. His neurologist lecturing him once again about the grim statistics of refractory, treatment resistant, severe epilepsy, his voice ringing into the hospital room.
Let his brain cope then — with entire days punctuated by rest as Tyler crawls and climbs through each day, gnawing his way home through seizure after seizure, until he falls unconscious at the end of it. He doesn’t fall asleep — that’s too soft a word, too hush. No, he falls unconscious like a body flung from a high, ragged cliff towards a hungry, unruly, violent sea waiting just underneath his bed.
Let it cope with quiet morphing into silence, silence into loneliness. Loneliness, the soot of his soul, eating away at him on the inside. A dark creature with razor-sharp wings, flapping against his chest — ripping cutting chewing hurting until he gets a break from being, from knowing. From feeling.
Let it cope with his his seizing body flopping on the floor like a dying animal you’re supposed to shoot in the head.
He hasn’t told Josh this but there are nights when he sits in bed, trying with all his might to induce a seizure. He’ll sit slumped against the wall, whispering come on now let’s get this over with as if he were summoning a demon in the bathroom mirror. There’s nothing — literally nothing — like the fear of going to bed at night and not knowing where and in which state he’ll wake up. In a hospital bed, unable to remember how he got there? An oxygen tube under his nose, his throat dry, his voice hoarse, every single muscle in his body screaming? Or in his own bed, feeling like he hasn’t slept at all, his head pounding, an empty syringe of buccal midazolam lying right beside the bed table?)
Tyler sniffs, his fingers wandering automatically to the stitches above his right eyebrow. Helmets and cool packs. X-rays, stitches, casts. His body patched up and pushed into the world, a world that’s threatening to overwhelm and kill him at any second, anywhere.
"It's going to be okay, Ty."
Josh's voice — soft and steady — inside his ear. His hand on the small of Tyler’s back. Warmth spreads into Tyler’s fingertips. Butterflies in his stomach, just like the first time.
"I don't know, Josh."
(But I want it to be true, I really do)
„Look, everything’s packed and ready,“ Josh replies matter-of-factly, showing him a large rucksack as if they were about to go on a roadtrip and not just the cinema round the corner. It’s their roomiest bag — a black Nike rucksack, ordinary to anyone else. Inside: enough rescue medication to sedate a horse, backup meds, a change of clothes, an ambu bag, a portable pulse oximeter and a laminated medical ID card listing Tyler’s diagnoses, emergency contacts (Josh Dun/Kelly Joseph) and red alerts for specific drugs (NO VPA, NO DIAZEPAM).
His very own portable ICU. Just what he needed for a date night with his boyfriend. With the epilepsy helmet strapped to his head, he might as well arrive at the cinema to a fanfare of trumpets blaring: HEY LOOK AT ME I'M DISABLED.
„I mean, we can always …“
Tyler pulls the sleeves of his hoodie over his thumbs. His eyes flock towards the couch — that horrible, faux leather monstrosity which came with the apartment. A silent witness to countless days, sometimes even weeks, curled up underneath his blanket, drifting in and out of consciousness. Empty takeaway boxes and medication bottles cluttering the table. A rented movie plays silently in the background, forgotten.
Before all this — before refractory temporal lobe epilepsy gatecrashed his body and bulldozed his brain — he hadn't know how small, how microscopic a life could become when you can’t trust your own head (or the world around you).
He used to be a shy kid, his introversion finally compromised, compartmentalized as he started to perform music in his late teens, his songs ascending from his parents’ basement to find their way into the world. He used to hide out in that basement, amplifiers screaming with holy noise, microphone crackling.
I need something to kill me / I’m tired of taking my own life
Well, issue solved then, Tyler thinks sourly, narrowing his eyes at his reflection, his social worker’s voice playing in his head.
If you don’t take your medications as prescribed, Tyler, your epilepsy could be fatal.
Josh tracking him taking pill after pill until he’s back on liquid meds — much more difficult to cheek. He used to chase death. He dreamt about hanging by his shoelaces, gasoline on his hands.
Now, death has wound, wormed itself into his life. In forced hospitalizations, supervised meds, locked windows. In shoes without laces. In silence as thick as a frozen lake in the dead of winter. Slabs of frozen ice where memories — where life — had been. This isn’t hiding or hibernating in a basement. This is death, waiting at his doorstep.
Now he rarely leaves the house at all. His world having shrunk to the walls of his apartment and the limits of his body.
Freedom used to mean roaming the streets with his brother Zack, right by the creek.
Freedom used to mean starring in one basketball game after the other and still having the time and energy to write songs and record an entire album before he graduated high school.
Now being free means nothing.
A memory at best. A malediction at worst.
He only knows days spent on the couch, in bed or outside — always supervised. By Josh, his mom or his social worker. Exactly what every guy in his mid-20s dreams of: having a babysitter for grown-ups.
"… stay inside." Josh finishes the thought for him, cutting across Tyler’s thoughts, his hand still on Tyler’s back. „Sure. We can do this any other day. No pressure, Ty. I’m treating you. This is my treat, okay?“
Tyler fumbles with his medical ID bracelet and his rubber band hanging loosely from his wrist. He doesn’t say anything, and the silence stretches on. His fingers twist and turn, pluck and twitch.
"The cinema’s just 15 minutes away and we'll take the car. I know who's on call at the neurology ward tonight.“
"Yeah? Who's on call? The rubbish neurologist who tried to inject VPA the last time I had a status seizure and you had a shouting match with him in the ER?"
Tyler fires up at once, his voice sharp. Anger prickles beneath his skin, his bones coated in lava. He despises his petulance — a toddler throwing a tantrum. And yet he can’t help it — it’s the stupid, stupid Keppra.
"No," Josh replies calmly.“It’s Dr F— , he's on call tonight."
Tyler raises his eyebrows. "How do you know this?"
Josh hoists the rucksack over his shoulder. „Gym buddy. He just started as an intern and apparently, he’s got the whole rota memorized.“
"Dr F—," Tyler ruminates, trying to feign nonchalance and ignore Josh’s gym buddy. Dr F—, whose last name neither of them could pronounce because of that weird German diphthong, has been Tyler’s neurologist for years. A large, beefy man with a military haircut, his white coat pulled tight across his chest. He looks like he could strangle me with his bare hands, Tyler had whispered to Josh when he first saw him. His smile, the kind that makes the eyes crinkle, and his unwavering approach to Tyler’s epilepsy made all the difference. A specialist in treating refractory types of epilepsy, he was always searching for a new angle, a new treatment to improve Tyler’s quality of life. He was the one who delivered the bad news during Tyler’s last catastrophic, two-week-long Video EEG. He’d pulled his chair close to the electric bed Tyler had been fenced into, and he hadn’t flinched or looked away in embarrassment when Tyler started to cry.
We were able to localize the seizures in your brain. The epileptogenic zone is still in your left temporal lobe, that’s where the seizures begin before they generalize. However, the MRI shows a malformation in the hippocampus on both sides and this complicates surgical options. I’m afraid at this point we cannot safely recommend a temporal resection due to the risks of further cognitive decline. We also don’t recommend implanting a VNS due to previous psychotic episodes.
Which means going back home to seizure after seizure. Going back to being himself. To being suicidal at best, himself at worst
But no one’s giving up on you, Tyler, okay? We’ll try Levetiracetam for a second time, starting with a lower dose and increasing it slowly and carefully. No, it won’t be like the last time. Yes, we’ll keep Lacosamide and Topiramate as your baseline. I want you or Josh to call me when you’re feeling depressed, okay? You have my number. The two of you are not alone in this.
"Okay then," Tyler agrees quietly. He reaches Josh’s hand and squeezes it tightly.
"We’ll go.“
...
They step outside. Their breath forms clouds in the cold, glistening night air. When he was little, Tyler used to pretend he was a dragon spitting fire and smoke into the night sky. He inhales deeply. The frozen air hits his lungs immediately, making his bronchi spasm slightly. Tyler holds his breath — one, two, three, four — before letting it out through his mouth. The frozen air curls in front of his face like smoke from a fuse. He may be older now, but he can still breathe fire. He can still set the world ablaze within the blink of an eye.
"Ty?"
Josh unlocks the car with and opens the passenger door for him. Tyler, coming out of his reverie, blinks and stumbles toward Josh’s car parked right in front of their apartment — their designated parking space for once not blocked by ignorant drivers. Slowly, he folds himself into the passenger seat, his rucksack and helmet wedged between his legs. He can’t remember the last time he sat in this car lucid and conscious. He usually takes the bus, the stress and chaos of public transport in Columbus his last shred of independence. (Plus, having a seizure on the bus is strangely more comfortable than having one in a car in the middle of rush hour traffic. There’s room to actually fall and let your brain do its thing instead of being cramped into the passenger seat, cars honking left, right and center.)
Tyler licks his lips and presses his fingernails into his palms. He can feel the weight of a car crash pressing on his stomach, in his temples, on his bones.
"Let me just … before we start …"
Josh fumbles with the car radio. A tinny voice comes from the speakers. Sufjan Stevens, an old cover of The Innocence Mission song Lakes of Canada. Tyler leans into the seat and takes a deep breath. Sufjan’s voice fills him up, lifts him up. He may as well rest right here, in this unparalleled, cramped, sacred space. Him and Josh, tearing through the mammoth nothing of the night.
Softly, he sings along. Josh drums on the steering wheel and — for just a moment — the world feels like something his shaking hands can hold.
...
Suddenly, the car slows down. Tyler doesn’t recognize the place but deep down, he’s just glad that Josh has chosen what looks like the smallest, most obscure cinema in all of Columbus. The building glows dull orange in the dark, letters half-burnt out on the sign. Tyler can already smell buttered popcorn and old, worn-down carpet.
He kneads his fingers in his lap, a cocktail of nerves, excitement and foreboding swirling inside his stomach. It’s been months, no, years since he’s last been to the cinema. He can’t even remember who he went with. Former friends, old classmates. Faces, names — entire people erased. Chronic illness makes for a strange kind of education. Tyler can navigate the massive university teaching hospital in the city without a second thought, threading through endless, faceless hallways. Even the chaotic bustle of the ER has a certain charm when you’re off your face on sedatives.
But a cinema? He might as well be standing at the gates of Moria.
Do people still eat buttered popcorn? Or is it salty now? Where do people sit these days? Right in the middle, fully immersed and swallowed whole by the screen (and virtually impossible to get out of unnoticed)? Up front, way too close, your neck muscles stretched taut as you start to feel sick by the second reel? Or right at the back, near the exit, like they were never meant to be there in the first place?
Tyler tugs at his hair, Sufjan’s voice still in his mind.
Look for me another day
I feel that I could change
I feel that I could change
They circle a nearby parking lot. It’s crowded for an evening on a random Wednesday. Slowly, they pass a disabled parking space conveniently located near the entrance of the cinema.
"Just saying, we could use your —"
"No. No way," Tyler cuts across him. "I can walk. It’s fine. I’m fine."
Josh shrugs, not wanting to get into an argument just now.
They finally land on a parking space at the far end. While Tyler exits the car and fumbles with his helmet, Josh quietly calculates how long it’ll take to get back to the car in an emergency, when Tyler’s disoriented, barely coherent and unable to walk. The parking lot is large and jam-packed. Cars upon cars, their metal gleaming faintly in the dark. That’s an entire crowd of people, of strangers staring. The unwashed masses who’ve never seen a seizure outside of a medical drama. Someone always misjudges the situation, no matter how many times Josh explains yes, this is an epileptic seizure, yes, we are fine, no, we don’t need an ambulance thank you very much.
(He vividly remembers one time Tyler had a complex-partial seizure in public. He’d wandered off, body and brain on faulty auto-pilot, and someone called the cops because there’s a junkie out here shouting nonsense. It had taken a heated argument with two policemen and a paramedic to finally bring Tyler back home).
It’s a ten-minute walk to the cinema. Post-seizure it’ll be a minimum of twenty minutes. Closer to thirty. That’s at least half an hour of them stumbling through the dark, surrounded by cars rushing by, the threat of grubby concrete right underneath their feet. (Funny how he used to worry about potholes when it’s the tar that’s the real threat — jumping into Tyler’s face and clawing the skin right off). Josh takes a deep breath and massages his temples.
One, two, three, four.
In through his nose, out through his mouth.
Steady.
Steady.
Steady.
"Josh?"
Tyler turns around to look at him, his fingers tugging absently at the chinstrap of his helmet. A wave of tenderness shoots right through Josh. Tyler in his army parka, his hoodie peeking out, its straps tied into a bow. Thin black jeans and vans in the middle of winter. He wants to hold Tyler close and pound every inch of this rotten parking lot with his bare knuckles until they’re scratched raw. He wants to pound every inch of cement back into the earth until there’s nothing left but softness. A stillness growing like moss.
"Coming!“
Josh grabs a blanket from the backseat and stuffs it unceremoniously into the rucksack. Better be safe than sorry.
...
They enter the cinema. The warm air hits them immediately. It smells just like Tyler imagined — dusty but in a good way, like a cozy library on a cold winter afternoon. A rich, earthy aroma of old wood mixed with the scent of aged velvet on the walls. A faint scent of warm butter hangs over it all.
The lights are dimmed and there’s classical music playing quietly the background. There’s no one around except a teenage girl behind the popcorn machine and an elderly, somewhat grumpy looking man behind the counter reading a book, a fat tabby cat sleeping next to him on a chair. Two women in their 50s, their tickets in their hands, make a beeline for the drinks. Tyler eyes the glossy posters blue-tacked to the wall, all advertising movies he’s never heard of. They look like they belong in a different time, in a different life.
He turns to Josh, bright-eyes and bushy-tailed.
"How did you find this place?"
Josh grins. "I saw it on my way to work the other day. Had to take a detour and discovered it tucked away here."
Tyler smiles back. Everything becomes lighter all of a sudden.
"Shall we?" Josh gestures towards the tickets. Tyler nods and takes Josh’s hand as they make their way to the man.
"Two tickets for the sneak preview?" He huffs, not looking up from his novel.
Josh nods. Tyler peeks at the book. A dog-eared copy of Virginia Woolf, Mrs Dalloway.
Of course.
The cat looks at Tyler, closes its eyes and starts to purr.
"Here you go," the man throws two ticket stubs on the counter, not letting go of his novel. With one hand, he gestures vaguely towards the popcorn machine. "Food and drink is over there. No, Harald. You stay here."
The cat meows once, its green eyes following Tyler and Josh as they make their way to the snack bar.
They order — one bag of popcorn (buttered), a ginger ale for Tyler and a coffee for Josh.
"That guy belongs in a Dickens novel," Tyler giggles, excitement bubbling inside him as they make their way to the cinema hall. I swear I’ve never seen someone so—"
He stops abruptly. A group of people pushes into the hallway — laughing, talking animatedly, a couple of beers in their hands. Sweat starts to prickle on Tyler’s forehead. The leather inlet of his helmet itches. He can feel his face flushing beet red.
It’s his old basketball team — faces and names he couldn’t forget, not even amongst all the rubble. People he used to play with in high school, now all grown up up with women besides them. Wives or fiancées probably. They look like they could have kids, too. Kids as old as Tyler’s niece who thinks every animal is a cat. Who only knows him as uncle Ty who falls asleep on the floor a lot.
He used to play basketball with them. His dad coached the entire team. He grew up with them. No, they grew up, while Tyler hid in the the ruins or his mind.
They were the first.
They were the first to witness seizures on the field. Full blown, nasty grand mal seizures.
And someone — Tyler never found out who — made a video and posted it on to YouTube for the entire school to see.
A laugh, long forgotten now.
They don’t know that Tyler saved the video. They don’t know that during nights when he feels particularly vengeful, he still watches it. Over and over again. Hating himself quietly.
(Ten long years inside of this bubblе
Haha, look at him struggle
Fuck my mouth and feed me your knuckles)
Tyler freezes mid-movement, his breath coming out in shallow, ragged breaths. Josh places his hand around Tyler’s parka, not saying anything. Just waiting, silently.
The group pushes past them. No one stares openly. There’s one, no, two people sneaking curious glances at him, but everyone else is too engrossed in their laughter to even notice.
Tyler exhales and sniffs. They didn’t even recognize him. He might as well just be some disabled guy taken out to see a movie on a Wednesday evening.
He might as well be invisible.
He might as well be no one.
He hovers in the entrance to the cinema hall. To his surprise, there are no rows of seats — just a potpourri of well-worn, second-hand armchairs and sofas scattered loosely around the room.
The two women settle into a pair of armchairs, two glasses of rosé on a small wooden table between them, glimmering faintly in the warm light.
The group claims the biggest, comfiest looking sofa — petrol velvet, Biedermeier-style — right at the back.
Tyler picks at the cuticles on his fingers. His bottle of ginger ale feels warm and slippery in his sweaty hands. It feels entirely pointless to have ordered something at all — something a child might drink.
"The sofa right here looks good, don’t you think?"
Josh’s voice pulls him back. Josh, who enters the room, balancing his coffee, their popcorn and Tyler’s rucksack as if nothing had happened. As if they deserve to belong, too.
Tyler nods quietly. They settle on the sofa right near the exit. Tyler sinks right into the soft corduroy cushions. He drapes his parka around his body before turning around to scan the room, eyes wide like a deer’s.
"There you go…"
Slowly, methodically, Josh pulls a table close to him. He puts the bag of popcorn right between them and stows the rucksack discreetly at their feet. For a few seconds they say nothing. Then, the laughter at the back finally stops. The lights dim. Josh nestles into the sofa and puts his arm around Tyler, his thumbs stroking Tyler’s upper arm. Without thinking twice, Tyler leans his head against his shoulder, his face as close to Josh’s chest as he can manage with the helmet on. He’s breathing him in.
Sunshine. Herbs on the windowsill. Cotton candy.
This is it, then.
Watching a movie and not remembering a second of it. Not because he blacked out and had a seizure right in the middle.
Because he fell asleep leaning against Josh's shoulder. Skeletally intertwined, two bodies brought together by a universe light years away.
Hold these moments close, something inside him whispers.
(Fear no more, says the heart.)
Fear no more.
Hold them close, these shreds of normalcy.
Popcorn, ginger ale and coffee.
Small, conquerable worries.
A burden he can carry
from a consuming blaze.
A little life.