Archive of Our Own

The first thing that happens is the world goes black.

Blurry.

The first thing that happens is the world goes black.

A mush of sound and noise that grows louder and louder. Tyler can feel it in his stomach, that rising feeling. A sickness that comes from his toes and crawls all over his body.

“Tyler, are you okay?”

Josh’s voice.

Josh.

For the first time he’s thankful for wearing a mask on stage. Bones printed all over his body. No one has to know. No one has to know.

“Tyler…?”

A feeling that is all too familiar. Despair that tastes like old memory.

“Ty---?”

The world goes black.

...

The problem with epilepsy is knowing. It’s knowing you have it and knowing that you hate yourself for it. E-P-I-L-E-P-S-Y. Tyler hates those eight letters that are glued to his brain, to his core. He hates EEGs, the sticky gel that makes his hair look greasy (and takes forever to get out), the electrodes that make him look less like a human being and more like a humanoid. He hates those lines that are spiking up and down. A lumpy grey brain with a migraine. It was always about his forehead, one way or another.

...

The problem with epilepsy is being afraid. It’s being afraid of going out, leaving your room, the safety of your own four walls that have seen it all, know it all. Talk about performing music when you’ve got a brain like this. Being in constant fear of flickering lights, loud noise, anything that could flip that switch in your brain.

The constant fear of being seen. Like that.

Constant fear. A life on the brink, afraid of what lies underneath. It’s being afraid and hating yourself for it. Limbs tangled up in cobwebs and you want to scream with it all.

Tyler knows.

He knows. Knows ever since he’s been diagnosed as a teenager. His epilepsy started out with absence seizures at first, short staring spells where the world went black for a second or two and then he came back to it. It's probably nothing, just circulation problems, his GP concluded after Tyler had blacked out during dinner one night. He was still developing, still growing. And playing basketball, shooting 500 baskets every day? You have a bright future ahead of you, the GP told him. Let me prescribe you something and you’ll be fine.

It was probably nothing, Tyler told himself over and over again as it gradually got worse. His “staring spells” got more severe, with fluttering eyelids and rolling eyes, leaving him confused and groggy afterwards. No matter how many times he’d told himself it was probably nothing, that is was the weather, the moon phase, too much homework or gym practice, the nothing had a way of coming back to him, of reminding him that there were black holes inside his mind, blank spots that made him forget his name and where he was. It was like being born over and over again, his mind scrubbed clean, his history stole from him.

It was probably nothing.

One morning at school, Tyler blacked out for good and had his first grand mal seizure. Now he wasn’t the kid in gym shorts anymore. He was the kid who collapsed and wet himself in front of everyone. “Nothing” had a face and a name now, and it was his.

From that moment onwards, it wasn’t a simple “you’ll be fine” from his GP anymore. “Fine” turned into appointments with a neurologist who glued electrodes to his scalp. Tyler had a lot of these. He reclined on one of those nice EEG chairs neurologists have, quietly cursing himself and his brain. He knew it didn’t work but he always imagined that if only he could steer his brain into the right direction, he’d get a nice, normal EEG scan, a nice, normal, non-epileptic alpha rhythm. The stuff you wish for at Christmas, things you write on lists when you're too small to know that the world isn't revolving around you and your wishes. When you're too small to know what the word epilepsy means. Keep your eyes closed and your mouth slightly open, relax. He could feel his lungs filling but it wasn't water. Relax. It was fear, black and poisonous. Relax. He tried to focus on his brain his thoughts but they were too heavy to carry, to bear. Relax. He feels like he's thrown into the ocean with stones tied to his feet. Relax. He feels like he's behind a ship wheel, steering an empty vessel through dark waters.

After twenty minutes Tyler is done. His hair is greasy, his forehead dotted with three red marks. He staggers back to the waiting area, waiting for the doctor to return. The room is turning, spinning. He can feel his heartbeat hammering in his temples. He feels seasick. Tyler Joseph, please. He sees the result on the neurologist’s laptop before his parents do, the lines on his EEG, the spike waves and discharges. "Tyler has what looks like idiopathic generalized epilepsy," the neurologist explains, talking more to his laptop and the images of Tyler’s brain than to Tyler himself, "let me prescribe you an anticonvulsant and we'll see how Tyler responds."

“Fine” has different names now, names that are long and complicated. Lamotrigine. Levetiracetam. Valproate. Phenytoin. Oxcarbazepine. Carbamazepine. Lacosamide. Ethosuximide. Topimarate. Just looking at some of the options gives Tyler a headache. Who developed these drugs? Do they think that when you have epilepsy you also need to have a medication that you can’t pronounce, a name as ugly as the condition?

“This type of drug works fairly well,” his neurologist had promised when he handed Tyler a treatment plan for his first anticonvulsant, Lamotrigine. Even the name wasn’t too bad. “It’s usually well tolerated. I’ll see you in three months and please call if the seizures get worse.” Why do neurologist always assume it gets worse? He never saw things like “Get well soon, Tyler!”

This type of drug works fairly well.

Hope, a thing with feathers – or, in Tyler’s case, too many consonants.

…

Tyler takes the Lamotrigine as prescribed. His parents pin the package insert to the refrigerator, "just to be safe," they said. Tyler liked to think of it as a particularly bad joke, like a shopping list of all the things you don't want. Skin rash or redness. A sore mouth or eyes. A high temperature. Swelling around your face. Unexpected bleeding or bruising. A sore throat. Hallucinations. Confusion or agitation. In people who have epilepsy, seizures happening more often. Tyler takes the pills, after breakfast, after dinner. He feels the anxious glance of his parents. They're scanning his body for the signs of an oncoming seizure, he can feel it. He can feel their eyes all over his face. His skull is just a placeholder of flesh and skin, a placeholder for a brain, however broken it might be. He’s fine. I'm fine. I'm fine.

...

He takes the pills and gets side effects, expects them even. A sore mouth, probably. A sore throat. Nothing he couldn't live with. It'll be like having the flu.

He takes the pills and with every increase he can feel his brain getting emptier, more desolate. He stares for hours at the pages of an Arthur Miller play he’s supposed to study, unable to take the information in.

Ann, a little ashamed, but determined: No, I've never written to him. Neither has my brother. To Chris: Say, do you feel this way?

Chris: He murdered twenty-one pilots.

The words dissolve inside his brain. They melt into thick fog.

His mother brought home another book. Ever since Tyler got diagnosed, she read anything she could get her hands on, filling the Joseph family home with books and glossy brochures and leaflets. This time, it was Anne Fadiman’s The Spirit Catches You and You Fall Down. Intrigued by the title, Tyler picks up the book and learns that for the Hmong, epilepsy is called qaug dab peg and involves a soul-stealing spirit which causes “one to fall over with one’s roots still in the ground.” Now that wasn’t entirely correct, Tyler felt. The epilepsy, his continued seizures, and the Lamotrigine -- each on its own or in combination, he wasn’t sure -- uprooted him. The grand mal seizures robbed him of his history, erased his memory. He was floating in space, a body and brain frozen in fear. His mind felt like a rootless tree that keeps falling, the wood rotten and decayed.

He takes the pills.

Tyler also learns that the Hmong believe that when you have epilepsy, the illness is what makes your soul frightened and causes it to flee and become lost. That’s exactly how he felt. Lost. It was true, his soul had fallen through his toes, turning his body into an empty shell. Nothing has a name and a face now, and it was his. Sometimes he zones out and watch himself from afar. A body on auto-pilot. He watches himself from afar, his body, walking, talking, eating, sleeping. Complete disconnect.

He takes the pills.

“Fine” isn’t a simple word anymore. It’s a concept that can be stretched like elastic rubber, stretched way past its natural breaking point. Tyler never wears the medical bracelet the neurologist recommends. He wears a rubber band instead, twisting and snapping it whenever he can. He’s fine he tells his parents, the skin around his wrist covered in red marks and bruises. He’s just fine.

He takes the pills.

Gym practice and anticonvulsants don't go so well together. Tyler stumbles over his own feet. The Lamotrigine makes him forget how to move his body in space. He knows he has a body, knows he is a body, but he can’t coordinate all his muscles in time to make movement happen. It takes so much concentration, too much effort, and his brain is already running in the red. He pretends not to notice the face his coach makes, pretends not to feel the pangs of embarrassment as he shoots baskets and misses every single one of them.

He takes the pills.

Tyler's epilepsy – “your handicap” his school principal likes to enunciate as if the awkwardness needed extra syllables – is made public at his school as if high school alone wasn’t hell enough. He was also sent to the school counselor, a woman who wore funky, mismatched clothing and drank tons of green tea out of mugs that had cats on them. The first time he enters her office he’s taken aback. He was still wearing gym shorts – more out of routine than out of practicability, really – and the fact that they had sent him to a crazy cat lady that wore a pink sweater and magenta jeans irritated him beyond measure. How was this supposed to help? Curing epilepsy by sensory overload? But the worst was her voice that got really soft and high-pitched when she spoke to him, giving him advice even though she had no experience with epilepsy. And it was a thriving business, Tyler thought. She could sell fortune cookies with little slips of paper inside that said to “take things slow” (even though it wasn’t entirely clear what he was supposed to take slow and to which effect), “your health is top priority” (as if they were in a meeting and Tyler’s head was up for auction), and, worst of all, “you have a commitment to your health, Tyler.” Too bad health doesn’t have a commitment to me. Every time he sees a teacher watching him from afar like he's an accident waiting to happen he thinks back to the crazy cat lady and his stomach turns. He doesn’t have a commitment to his health. He has a lifelong subscription to a brain that wasn’t a brain but a bomb, one that could blow up any time.

Everyone wanted to work with Tyler for group projects and assignments and whatnot. Not because he had many friends – he hadn’t– or because he was known for his academics – he wasn’t. It was simply because they knew that teachers would cut them some slack because of Tyler and his issues. Funny how being disabled comes with a bucket load of shit to deal with but to other people, it’s all about the benefits. “I’m sorry we’re late on that group project but Tyler had a seizure” was the most popular excuse and Tyler didn’t know which was worse: the fact that he was working his ass off trying to meet deadlines, that he never used his epilepsy as an excuse or that teachers always responded with a high-pitched “Poor Tyler! I’m so sorry!”

Everyone always is.

If you think about it that way, Tyler was probably the most popular kid at school. But it’s not the right kind of popular, with the right kind of people. It's eating lunch by yourself in a bathroom stall because you’re too afraid of the noise triggering panic triggering a seizure. Because you’re afraid of other people seeing that you don't have anyone to sit with. Tyler made it a habit, flushing his lunch down the toilet and imagining what it would be like to flush his brain down the drain, that useless chunk of pulsing and throbbing meat. He fed his lunch to the toilet a lot. The meds made him nauseous anyway.

...

He takes the pills but the seizures don’t stop. First they decreased in frequency only to increase in duration. Now they seem milder but somewhat more frequent. Tyler never knows what to wish for.

One day, he steps out of the shower and a particular bad aura sneaks up on him out of the blue, without warning. Copper taste in the mouth, cold sweat on the forehead, confusion, inability to think, the full show. Out of the blue into the black. He's never been afraid of showers or sinks but with epilepsy hard things and wet things are your worst enemy.

[Head tilted down, knees on the ground]

Tyler's crouched on the floor. He’s shivering like an abandoned dog, water, tears, and snot everywhere. Seconds feel like hours when you wait for it to stop, beg for it. Wait for the aura to pass.

[This is all I can be]

Tyler rests his head on the tiles. He can feel his heartbeat hammering in his head, drilling the words into his bones.

[All that I can be]

He's falling out of time. A body and a brain frozen in fear.

[All I can be]

...

He takes the pills.

As soon as Tyler passes the 100mg line, the myoclonic jerks come. His neurologist had warned him that Lamotrigine can induce this specific type of seizure, "but since you don't have myoclonic epilepsy changes that this will happen are below zero."

Chances below zero. The jerks come anyway, epilepsy doesn't care about statistics. Tyler les awake night after night, his muscles hurting and trembling like those of a marathon runner's. It wasn't as bad as a full grown grand mal seizure or annoying like the absence seizures or frightening like the auras but bad enough. That's the principle he lived by now, assessing situations, thoughts, and feelings in terms of how bad they are, how bad they had been, and how bad they could get. He closes his eyes. It's too easy to imagine he just back from gym practice or a game when in fact he hadn’t been to the gym in weeks since his coach had him ordered to the sidelines and his teammates – his friends, he used to think – don’t even look him in the face. He closes his eyes and remembers how good he used to feel, the pain in his muscles a welcome reminder that he's still alive. He closes his eyes and remembers. He can feel himself getting carried away by the flood of memories, his body and the body of the sea one, until the next jerk comes, reminding him where he is, who he is. Don’t mix water and electricity, that’s something he learned in preschool. His right arm flies around, then his right shoulder, muscles twitching and jerking uncontrollably. Pins and needles inside him, all over, from his toes to his nose. He isn’t the kid in gym shorts anymore. Now he's just Tyler, mostly.

...

"You have to give the medication a chance. Lamotrigine is a great drug" the neurologist defended when Tyler complained about the side effects and the jerks. They tampered with the dosage a lot. It took him three months to get to his final dosage, three long months full of side effects and little else and now they were lowering it again “to see if things improve.”

They don’t.

Tyler buys a second rubber band.

The seizures don’t stop, either. Tyler has another grand mal seizure in the classroom. He had been homeschooled when he was younger and in this moment, when he regains consciousness enough to recognize the faces of his classmates acting out his seizure in front of him he desperately wishes for his room, the heavy blankets, the way sunlight pours through the window in the early morning. Now he's in a room, but it’s a different one. There are no walls, only faces. There are no faces, only walls of shrieking laughter. Someone had pulled out a phone and filmed the seizure from the back of the classroom, zooming in on Tyler’s body. Look, he peed himself. Ewwwwwww. Spazzer. His muscles are burning, the bright, sharp full body pain only a grand mal seizure can bring. His jeans, soaked with urine, clammy and cold against his skin. Tyler shivers. More laughter. He slowly makes his way to the school nurse, shivering and crying. No faces, only walls. It felt like he'd been ejected into hell.

...

Tyler takes the pills and lies awake, night after night. Fingers wrapped around his rubber bands, feet and spine on the minus sign. He's a brain and a body frozen in fear.

He lies awake, night after night, feet and spine on the minus sign, and wishes he was hanging by his shoelaces.

...

Having epilepsy is knowing that the slur “retarded” can hurt in a million different ways.

“I’m not wearing a helmet!” Tyler yells, his voice cracking.

He’s perched on a chair in a hospital room. Not the crappy benches or those awful folding chairs that screech when you move them but – for hospital standards – a really nice chair, with arms and a chair pad. Maybe that was the sign that his epilepsy has gotten worse, Tyler thinks, thoughts leaking through his mind. He was just about to change into his gym shorts when he blacked out and smashed his head against the wardrobe. Nothing out of the ordinary, nothing that couldn’t be treated with cool packs and a day in bed, Tyler felt, but at the first bang his parents had rushed upstairs, freaked out, and called an ambulance. He woke up in the hospital, merciless fluorescent lights and a searing migraine welcoming him back on planet earth.

“I understand that wearing a helmet can be worrying but you’ve got to see it this way, if you continue to have these types of seizures you will ––-“

And off he goes. This wasn’t the neurologist he usually saw but another doctor, one with a tanned face that said “two month vacation on the Bahamas” rather than “24 hour shift in the ER.” It was clear that this doctor knew nothing about Tyler and his epilepsy. Tyler leans back and lets the lecture, that wave of words wash over him. The chair was way too comfortable. They probably had a stash of these hidden somewhere, reserved for cases like him. The ones that came to the ER day after day, the ones that had to be lectured, bombarded with words that are anchored to nothing but squeaky linoleum floor, starched white coats, IV lines, and sticky EEG gel. Words that have no meaning outside a hospital room. Words like what type of epilepsy have you been diagnosed with and what medication are you on and have you taken your medication and we need to check your medication levels and why aren’t you wearing a medical bracelet and I think you will benefit from wearing a helmet to avoid situations like this.

Tyler presses an ice pack to his forehead. The ER neurologist switches over to his parents. I think he will benefit -- So do you think a helmet -- Yes, studies have shown -- Then we should -- But Tyler -- Tyler are you listening -- At the end of the day it’s choosing between a helmet or a concussion and worse. The bump on his is swelling rapidly, pulsing and throbbing like someone is trapped inside his skull, hammering and screaming to get out. A helmet or a concussion and worse. Tyler could feel three pair of eyes on him but he doesn’t look up. Just let me out. He knows the look on his parent’s face, knows the hushed conversations they will have once they’re out of here. He knows that his parents will take him home, him and a glossy catalogue with kids in helmets that come in all sorts of designs, colors, and materials (the helmets, not the kids. The kids are overwhelmingly white). Soft leather, soft shell, hard shell. The kids wearing the helmets are always smiling, that fake hey look at me I’m not really epileptic just for the photo buy this product here’s your bill smile of commodified health care. A medical supply store is the Ikea of disability land. They should give these helmets those weird unpronounceable Swedish names, like FYRKANTIG or DAGSTORP or SMÖRBOLL. That way the words would make as much sense as an epilepsy diagnosis: none.

...

Tyler graduates high school and goes back in time. While all his classmates work summer jobs, get ready for college or travel, Tyler stays home. His parents and his neurologist made the decision for him, taking it out of his hand and adding it to Tyler’s ever-growing medical file. Broken brains take time, nerves, and a lot of paper. Tyler swears that with every appointment his file is growing thicker with decisions about his life and his body. His neurologist even glued a photocopy of Tyler’s emergency card on the front of his file, like a sign that said WELCOME TO TYLER’S SKULL in words no one understood. At least his doctors had changed his emergency medication to a med which can be taken orally. If there’s one thing worse and impractical than having a seizure and going into status it’s rectal diazepam. It’s the one thing that made Tyler feel grateful for being unconscious during the big ones. He had the last long one – his first status seizure – on the street in front of his parent’s house. His parents had been given diazepam with instructions but Tyler was seizing heavily, his legs contracting and jerking with more and more intensity, making it impossible to get the clothes off. Around the five minute mark his dad called 911 with shaky fingers. By the time the ambulance came to a screeching halt in the driveway, neighbors had come out of their houses to witness the spectacle, conditioned to the sound of the siren like Pavlov’s dog. They all watched with a cringe as blue-gloved fingers turn Tyler on his side and pull his jeans and underwear down. They all agree, epilepsy is just terrible, truly terrible, that poor boy, but no one asks Tyler or feels for him as his body comes to a rest, finally, and is loaded into the ambulance. That poor body, they said. This isn’t living. This isn’t a life.

Tyler fought his parents. Ever since his status his neighbors had that horrible way of smiling at him, giving away grotesque fascination disguised behind a wall of well-meaning pity. Tyler fought his parents hard. He still had a life. It was his life and his decision and he was determined to claw a space for himself in this world, even if it meant clawing at quicksand. "I don't want you alone at home," his mom replied, pointing to the calendar they had taped to the fridge with a gesture that explained it all. A black "X" meant an absence or a myoclonic seizure or an aura, a double "XX" a grand mal. There were a lot of black crosses on that calendar. Sometimes there were more crosses than days. His siblings brought friends over and they'd stare at the calendar in disbelief. "Wow, you must have a lot of birthdays to celebrate," they said, not understanding the Joseph family's secret code of X, XX, and XXX (which was short for "hospital"). Tyler could hear the conversations and the little make-up lies they came up with.

"Yeah, we're just really busy. Helps us to remember."

More crosses than days. Days crossed out entirely, out of time, out of mind. July and August had always been his worst months seizure-wise, ever since he got diagnosed, and this summer had been an endless stream of hospital stays, visits to the ER, appointments with his neurologist, and changes to his medication. They had decided to phase out the Lamotrigine since Tyler had reached the maximal dosage and wasn't responding well (which is medical jargon for: congrats, you’ve reached the limit of the shit you can endure). Getting off Lamotrigine was just rough. He phased the drug out according to plan and with every step he took he descended deeper into a darkness there's no word for. As he decreased the dosage the jerks got better but the auras got worse. He could feel himself waking up, bits of his brain coming back to life that had been dulled by the drug, only to be pulled under again. He was shaken by one aura after another. They came in quick succession now, sometimes twice a week. One night he woke up feeling so sick he thought he was actually going to die. One night he woke up and believed his room was on fire, flames coming through the walls for him. Another night he woke up to colors and shadows melting on the walls, hallucinations worse than bad drug trips. Waking up after a night full of seizures and hallucinations is a grim affair. Tyler stumbled out of bed, muscles aching, trembling. His brain had emptied itself of color and life, leaving Tyler suspended in darkness during the day.

They weaned him off the Lamotrigine but the seizures didn’t stop, they changed, and so do his triggers. Being tired or concentrating too hard brings myoclonic jerks. Changes in his sleep routine, staying up too late or getting overexcited before he goes to bed brings auras, jerks, and every six weeks (down to the day, epilepsy doesn’t care about statistics but brains can be strangely punctual) a complex partial seizure at night. The absence and grand mal seizures usually came totally out of nowhere, without warning. The neurologist suspected the heat and dehydration, his parents suspected the medication (and Tyler not taking the pills as prescribed), and Tyler suspected God shouting BOO into his brain, getting a good laugh as his body trembled and shook in response.

His parents had gotten into the habit of recording his seizures to show them to his neurologist and he never knew what to do when he saw himself like that. He watched the videos anyway. He never knew what to do when he was forced to face that massive, unseen part of himself. The part that everyone could see except him. The drooling, his eyes gone, his limbs stiff and contorted, wrists bent at unnatural angles. The part that no one could see except him. The shame. The anger. The fury. He can hear his mother crying as she holds him during a grand mal seizure, the muffled sounds not enough to drown out the chocking and growling. He didn’t even sound human. He sounded … demonic. You're okay, sweetie. You're okay. His mother's voice is cut into half. Tyler pauses the video. He can't watch anymore. His brain is only one button away. Press. Play. Rewind. If only he could go back in time and rewind that tape. Rewind it until his falling body isn’t falling but getting back up again, waiting for a new day to begin.

...

Summer was over but it felt like an entire year had passed. Everyone had graduated, even Tyler, his grades reflecting only the teacher's prejudice and pity but none of the real efforts he had made to stay afloat during his senior year. Everyone had graduated, everyone had moved out, except Tyler. Everyone could see their future, their place in the world, it seemed, except Tyler. It was hard to ignore. He saw it on facebook, instagram, twitter. Even snapchat. The posting, the tagging, the bragging. Tyler felt his seizures robbed him not only of energy but also of a general will to live. Over the summer he had spent every waking hour scrutinizing his seizures and their unpredictability, analyzing every situation in detail, how tired or anxious or excited he had felt and how this might or might not have led to another seizure. As a consequence, his feelings had vanished, they had fled, leaving Tyler to a blank prairie, a desert, where he picked at his self-hatred like other people pick at scabs.

Tyler spends countless hours stalking his classmates online. He scrolls through pages and accounts, hating himself more and more with every click, every flicker. He sees the conversations his old friends have, about college campuses and roommates and boring summer jobs at the ice cream stand. He witnesses trips to Europe, couch surfing, road trips. A couple of his old teammates went to Lake Michigan and posted videos of them sitting on towels, eating tacos and drinking lemonade. They don’t mention Tyler. He hasn’t been to a single game since he got diagnosed. Tyler feels like he’s spying on them, his phone a keyhole to a door he isn’t supposed to open. At the sound of his old teammates laughing and complaining about the waves Tyler throws his phone at the wall but the screen doesn’t have the decency to break. He wants these stories. The tanned skin, the nights spent wide awake, talking about anything and everything. He wants beaches, even in Michigan where the waves suck. He wants words that can be dipped into the soft night sky like feet dipped into a lake on a hot summer day. He wants more than the hatred he felt for his own brain. He wants more but got nothing in return. He had tried to talk to his old friends. He didn’t hear back from the majority of them. The only response he ever got was a lukewarm "let's stay in touch” typed on a computer far away. If only he knew how. He wasn't staying in touch. He's fallen out of time and now he’s living his life backwards. His brain a broken cassette, the tape all twisted and wrong. His body falling, always.

...

Fall. He can see his parent's plans crumble in front of his eyes. He was supposed to go to college too, on a basketball scholarship. That was the plan, or at least a big part of the plan. The part his parents had hoisted on his shoulders, oblivious to the crack inside his brain.

"There are suitable and simple tasks for people like you," his GP said. "You could work bagging groceries at the supermarket." It seemed like a long time ago since he heard the words "you're going to be fine." Tyler wasn't fine anymore. Now he's just Tyler, mostly.

His parents tried, they really did. They looked into internships, community college, anything that would get their son out of the house. Tyler even had a part time job shelving books at the local library for a few weeks. The pay wasn't great but it was a job, and the library was as quiet and sacred as a church at night. Tyler even found the energy to read inbetween shifts, plucking books from shelves like other people pluck apples from trees. Tyler genuinely enjoyed the work, the juicy smell of new books, the quiet. It was only after he had taken up reading again that he realized how much he had missed the feeling of understanding something without struggling. He read and read and read. With his brain weaned off the Lamotrigine he was able to process information again and his mind was soaking stories. On the bus rides to and from the library, Tyler hugs his book bag and the books under the canvas shift like bones under skin.

...

Tyler spends more and more time at the library. He could feel a quietness and contentedness grow inside him, could feel words come alive like seeds thrown into dark soil. He was changing, he was growing. Maybe he was growing out of his epilepsy. Seizures sometimes disappear for no reason, his neurologist had admitted after Tyler had begged him to say the words. Tyler took home more and more books. He was changing. He was growing. Until the day he had a seizure and fell of a ladder. The library feared liability concerns and fired him immediately. It took weeks to recover from the fall.

...

When you’re suicidal you don’t feel real. You can’t see your place, can’t imagine a world in which you’re alive and you belong.

When you’re epileptic you get thrown back into this world, no matter how many times you leave the planet. Your consciousness always finds a way and it drags your body along.

When you’re suicidal and epileptic …. go figure.

...

Tyler is back home again. Since he had to leave his library job he felt he was left with questions but no answers. Questions that had no answers. Questions that weren't even questions, really. More like doors slammed shut in his face.

He could hear the hushed conversations his parents had behind closed doors, could see it in the exasperated expression of their faces as he yelled at them to leave him alone. He was on a new drug but he was still adjusting and the seizures weren't back under control. Ever since the library incident it was worse than ever. Inside his brain the neurons were firing excessively, relentlessly as if to warm up against the cold. Tyler could see his parents’ fears the way you can see your reflection in a window when the sun goes down: blurry at first but with every passing hour the absence of light begins to define your body more and more until your bones and eyes begin to glow in the dark.

"You can't be alone in the house right now, you know that, Tyler," his mother scolds him during one Saturday dinner, pointing his fork at him. Tyler could see his reflection in the big living room windows, staring back at him like a ghost. When he was little he loved those big windows, the way they turned their house into a lighthouse. Now Tyler squints at the brightness, the openness, the vastness. The impossibility of it all. He long stopped clinging to the image of the lighthouse, that one sign of safety when you’re out at sea. His legs tremble and jerk underneath the table.

"So, who's going to look after your brother?"

None of his siblings looks up. Zack pretends to dig through his pasta, Jay stares at the table and Maddy twirls her hair around her finger. It’s like gym class, that moment when they're picking teams and you're the last one. The kid no one wants on their team.

"Zack?"

Zack groans silently. "Mom, I have plans..."

"Then take your brother with you."

The look Zack gave his mother was enough to set Tyler over the edge. He could feel his body being tipped back into a flood of images as empty and desolate as the sea when the tide is way out and suddenly you see all the things that had been hidden underneath. Sea shells, old plastic bottles, the bones of memories that weren’t meant to surface back up. He's been out with Zack and his friends a couple of times now and it has always been a disaster. While Tyler enjoyed being out of the house Zack had made it clear that his parents had forced him to babysit his older brother and Zack's friends, young enough to be impressed what they heard about Tyler, the seizure boy, just stared him up and down. And Tyler tried, he really did. He took his medication, made sure he had slept enough, avoided all the triggers and yet it still happened. Somehow it always happened. He’d been out with Zack and his friends, they all wanted to see a movie at the cinema that evening and Tyler tagged along, dutifully. He tried to be Zack’s older brother, not more. Not less. He tried, and he even made it through the opening scenes when it suddenly hit him: he’d forgotten his meds. He dug through his bag, feeling suddenly light-headed, the room spinning fast. He was still in the transition period from one med to the next. He couldn’t afford to miss a dosage, he just couldn’t. It was two hours after dinner. He had stuffed a pack of pills inside his bag for emergencies but the darkness made it hard to see, he couldn’t see or feel a thing besides the images on the screen, a swirl of color and noise too bright and too close. His hands were shaking. When he finally found his emergency pill box he was so flooded with relief he spilled the tablets everywhere. Shame ran through him, hot and sticky down his spine as he pretended not to notice the way his body jerked and twisted in an endless series of myoclonic jerks during the movie. He kept his eyes glued to the screen, not really taking anything in except the people behind him laughing at “the weird guy with Tourette’s” and how Zack had shifted in his seat every time Tyler had another jerk and someone giggled. Eyes glued to the screen, pretending he’s someone else, someone living a life in color, without epilepsy. A life he could just switch off, rip it out and turn it into shreds, that broken tape, that broken body, that broken brain.

...

Tyler tried, he really did. He'd do anything, everything, to get out of his head. He even went to the support group his neurologist had recommended but the group always made him feel ashamed because he felt like he had it so easy compared to the majority of kids and they all seemed to be better equipped to deal with their brains than Tyler. There was a kid who had up to 100 seizures a week and didn't complain. There was a kid with Dravet syndrome whose helmet always matched the outfit he wore. There was a kid that was both autistic and epileptic, typing what he wanted to say during the meetings into a portable computer that read his words out loud. A real bummer, Tyler felt. You don't understand the world around you and you don't understand your brain either. (He liked the kid, though. He always listened, even when Tyler didn’t say anything, and tugged at his hair the way Tyler did). There were kids who had had to have brain surgery which worked for some and for some the seizures just migrated to other parts of the brain. And then there was Tyler, holding on to the plastic rims of this chair, knees drawn to his chin. His brain was still whole but the dark spots in his thoughts were growing, ripping and slicing through his mind. He never said a word. The chair wasn’t comfortable enough anyway.

And Tyler tried, but things weren’t right anymore. He wasn’t fine. The new made him feel just as horrible, even worse than horrible. A horror there’s no word for. Brand name Keppra, a drug with the delightful name Levetiracetam. The name slipped inside Tyler’s mouth the first time he tried to curl his tongue around the foreign sounding consonants and vowels and it just didn’t get better. If Tyler hadn’t been on Keppra he’d be upset. He’d be angry. He’d yell and pound at walls and hit himself in the head. He'd yell at his parents, probably. The new med made him angry but too wobbly and uncoordinated to storm out of the kitchen, too tired to yell and scream. He was stuck in pharmaceutical limbo.

He tried nonetheless.

He fills up his days with anything that doesn’t involve thinking about his epilepsy. He had tried to go to concerts but the flashing lights made it so he couldn’t go. He wasn’t photosensitive but with the heat, the excitement, and the dehydration one never knew. So he keeps to himself, to the walls of his parent’s basement. He found an old keyboard, a Christmas gift from what felt like a thousand years ago, back when he was playing basketball every day and just laughed at the idea of playing the piano. Tyler unwraps the keyboard and tries out some chords. Maybe it was meant for this moment. Maybe the music was meant to be, for a thousand years later, when everything you know about who you were and could have been is calcified into stone, the ground eroded and flat, leaving enough space for the music to grow into something leafy and green inside you.

He tries. He comes up with lines, constellation of words he didn’t know he had in his brain, an endless string of consonants and vowels. He keeps stumbling over the shoelaces inside his mind, thoughts like tiny knots that he can’t untie, the ends too twisted and frayed.

He tries nonetheless.

Words like a lifeline. Epilepsy is unknown territory. Surviving epilepsy is knowing you’re going to be okay. You anchor yourself to something stable. You descend. You can climb back up.

I'm taking over my body,

Back in control, no more shotty,

I bet a lot of me was lost,

Ts uncrossed and Is undotted,

I fought it a lot

And it seems a lot like flesh is all I got,

Not anymore, flesh out the door,

Swat

You can come back safely from that mountain range of your brain. Just don’t look back when you’re climbing up. Distance makes itself felt. Just breathe. You fall down. You can climb back up.

...

The occasional aura, a slip up, he tells himself and the four walls in his room. A slip up. Mostly at night, usually around the late hours. The occasional aura (not so occasional now). The familiar rising feeling but somewhat different. It’s still coming from his stomach but he doesn’t black out now. He vaguely remembers that seizures can change but decides to bury that knowledge and the fear that comes with it. Buries it deep inside where words calcify into stone.

...

The occasional aura. A few jerks. A few more. Mere slips. It can’t get bad again. It won’t get bad again. He’s slipping. He isn’t falling. Falling is forever, slipping is not.

...

Tyler spends more and more time in his parents’ basement. The darkness welcomes him. It’s never completely dark but dark enough to drown out the voices from above. His parents are caught in endless arguments which always start with the kind of small, mundane bickering that is the backbone of every marriage and always end with Tyler and (pick one: his seizures or the lack thereof, medications, medical bills, doctor’s appointments, and what is he doing in that basement anyway). His siblings, seemingly oblivious to it all. He can hear his mother talking to Zack and Jay, he can hear Maddy jumping up and down. They never argue, at least not the way Tyler argues with his parents. They live in a parallel universe, one level above the ground. Tyler sometimes pretends he’s an American version of Harry Potter living in a basement in Ohio instead of a cupboard under the stairs of 4 Privet Drive. But he isn't Harry Potter. If anything, he’d be Remus Lupin. Lupin, so frightfully depended on Wolfsbane Potion to live a normal life, a human life. Having epilepsy wasn’t all that different, Tyler thought. You take pill after pill after pill to keep your wolfish brain at bay. To live a normal life, a human life. It’s a full moon and Tyler is wide awake. Someone from his support group swore that their epilepsy gets worse when it’s a full moon. He always found it strange to imagine, the moon messing with the waves in the ocean and the waves inside your brain. But then it isn’t so different. Waves are waves after all. Tyler takes his medication and curls up under his heavy comforter as the moon traverses the night sky, rising and falling with every passing hour.

...

The occasional aura. Not so occasional now. He’s slipping, he tells himself. He isn’t falling. He doesn’t want to. Falling is forever. Slipping is not.

(The spirit catches you)

He isn’t falling. It’s only a few steps into the basement. A few steps that feel like a lot more when you have a grand mal seizure. Head cracked open on the stairway that separates the ground from the first floor. That bit of cement, that bit of broken brain.

(And you fall down)

...

Tyler is back inside his room. His body has moved to the second floor but the arguments have stayed downstairs, in the kitchen. Words like a centrifugal force. Tyler and his epilepsy. They are going round and round and round, like a really grotesque version of Matisse’s The Dance. We never had any problems with Tyler. Remember how easy it was with him. Remember remember remember. Going round and round and round and round.

...

(And you fall down)

...

My shadow tilts its head at me,
Spirits in the dark are waiting,
I will let the wind go quietly,
I will let the wind go quietly

...

Tyler decides to buy a skeleton costume. The comfort of wearing a mask. Reassuring to know that other people see what you’re seeing: A handful of bones printed on a body. I’m fine (so very far from fine). Just a little blurry around the edges.

…

The bliss of being seizure free, even if it’s only for a few days. To go outside and not wake up in an ambulance. To walk down the street, a face among many. To be somebody. To be nobody. The luxury of disappearing without really disappearing. The ability to trade one body for another, those bags of bones. The freedom of being able to choose among truths. Tyler walks into his favorite music store. He’s been experimenting with his keyboard and he’s finally feeling well enough to leave the house on his own. He can feel his mind coming alive again, raw and hungry for more. For music, for ideas, even talking to other people. He hasn’t left his room in weeks. His fingers slide over records. He’s been making weird eye contact with the cashier – a guy with funky yellow hair and a sympathetic smile– and the moment he’s mustered up enough courage to take his CDs to the counter the doorbell rings. The sound is everywhere, stopping Tyler in his tracks. Laughter, familiar, venomous. Tyler freezes immediately. It’s the nameless jock from high school, the one who called him spazzer and filmed him with his mobile during seizures. The guy who hated Tyler, first for his ability to shoot 500 baskets without missing a shot, for a body that was born to be athletic and then, when epilepsy happened and Tyler lost his spot on the team, hated Tyler simply for being Tyler, for a body that was born to be what ... broken? The laughter is coming nearer. He isn’t alone, Tyler can hear it, feel it in the footsteps and the murmur and the snickering. He’s with a bunch of people, friends from school or college or whatever he’s doing right now. Something something about a party on Friday. Tyler stays still, a deer caught in a thousand headlights. If he doesn’t move they won’t see him. If he doesn’t move they’ll go away. A flash of memory fluorescent bright in his mind. He prays. In his mind, on his knees. Please. Leave me alone. Leave me alone. Leave me alone.

“Hey, are you okay?”

Specks of color. Bright yellow, a color crisp and clear, like an early winter morning. The cashier guy is standing right in front of him, a puzzled look on his face. Tyler wants to say hi, knows he should say hi. Make conversation. That’s what they taught him in support group. Use your social skills, Tyler. He wishes he could. But he’s Tyler. A body and brain frozen in fear. Come on. Come on. Say something. Fear fear fear.

“...?”

Tyler can feel the cashier’s eyes on his face, his body, all over him. He knows that look. Don’t be concerned, he thinks, hoping for some magic telepathy. Please. Don’t. I’m fine. I’m fine. Leave me alone.

“LOOK! It’s Tyler!”

The group has found him. They circle Tyler like a group of hyenas, sniffing the air, taking it all in. The laughter becomes hysterical. Tyler closes his eyes. The memories come back, now all at once. The flash of a phone camera. Ewwww. The shock when Tyler found out that they had put him on youtube and facebook. That wall of faces. The video (“Epileptic kid does the Harlem shake”) has over 10K views. A couple of clicks are from Tyler, in the dark moments when his self-hatred became so overwhelming it came pouring out of his body, transforming from black liquid into something tangible, into shaky pictures of himself on a screen, images that were burned into his retina.

“TYLER!”

He can feel his face going beet red. His body starts to shake. Not seizure-shaking but anxiety, pure and simple. Fear oozes through his veins, black and poisonous.

“Hey, Tyler!”

A jock with sandy hair does a poor imitation of Tyler during a grand mal seizure, arms flailing, eyes rolled upwards, tongue lolling, a high-pitched screech coming from his mouth.

“SPAZZER!”

They all laugh and high-five each other as they stomp out of the store.

...

Josh puffs his cheeks, letting the air out of his lungs with a slow sigh. The day wasn’t even over and he already could feel a headache setting in. And it wasn’t even the I-hate-this-job-headache or lack-of-sleep-headache. It was a headache, pure and simple. He’ll never stop cursing that brain inside his head. Once the pain had begun setting in, there was no way back. And no way forward. He was stuck, behind the counter of a music store where he worked shifts as a cashier. And it wasn’t that he hated his job or the customers. He liked it. He loved to observe customers, guess their taste in music as if music was something you wore on your skin, your face. Something that you keep inside but that transcends, that needs to be felt and expressed inside your body, through your body. A joy that reaches out. He touches his tattoos instinctively, fingers drawn to the color like moths surrounding light. Josh wore his taste in music on his skin.

The bell rings. A customer comes in, the only one in an hour so far. Josh smiles at him, the usual, distant, not too friendly smile he taught himself after watching a lot of videos on youtube about cashiers and all sort of strategies to deal with the crap they had to put up with. A kid who looked like he’s fallen straight out of a college classroom makes eye contact, briefly. He reminds Josh of a hedgehog someone has released into the wild, the way he tugged at his short, spiky brown short hair and how jumped at each sound. No, he looks like a little kid on Christmas, eyes glistening as he marvels at CDs, studies the covers and even feels their plastic spine.

The doorbell rings again.

More customers. A bunch of college kids. Josh’s eyes flicker between them and the guy who is completely lost inside the music. Do they know each other? He would have guessed no, the skinny figure in black clothes a stark contrast to the guys who look like they spent all their time in the gym. At the sound of their voices the kid in black startles. Maybe they have classes together, Josh concludes. He can imagine the teasing, can see it in the way the kid’s body folds into itself. Josh has been there. He knows the instinct. The fear. He decides to keep an eye on him and them, just to be sure.

The group shuffles through a couple of CDs but the minute they recognize the kid the group changes. Laughter, snickering. Something about a video on youtube. I’m still getting hits on that one. Josh tenses, eyes on the figure in black. He knows a panic attack when he sees one. You don’t need youtube for that.

“Hey, are you okay?”

He tries to be quiet, calm. Reassuring. He knows how much he hates it when people make a big deal of his anxiety in public. The guy is trembling, shaking, his breathing shallow. Right when Josh decides to ask the group to leave they stomp out of the store. He can still feel his heartbeat, can feel the blood rushing through his body. He can’t get it out of his head, their laughter and the obscene gestures they made. What the hell was that?!

“Hey, it’s okay...”

The hedgehog kid is still shaking, his body curled up, spiky hair and all. Josh takes him to the break room, feeling that loud noise from the store will send him over the edge. And it helps. The quiet, the old, worn out chair. Tyler can still feel his cheeks glow with shame but the cashier doesn’t notice, or pretends not to notice. Instead, he tells him all about his favorite bands in a clear attempt to take Tyler’s mind somewhere else, somewhere where it’s quiet and warm and safe. Tyler can’t help smiling. The guy acted like a mother hen, taking him under his wing, bringing him tea and cookies that looked like they came from a Christmas ten years ago.

“What’s your name?”

The cashier settles down with a cup of tea as if they were supposed to meet here, in the break room of a music store in the middle of Columbus, Ohio.

“Tyler.”

Tyler recoils at the sound of his voice, of his name. It’s been a long time since he said those words. His name sounded so lame.

“Cool. Josh.”

“Your name is cool Josh?!”

The words leave his mouth before Tyler can think about it. Cool-Josh grins in response. Yeah. Cool Josh aka Yellow Hair aka Mother Hen. Tyler finds himself opening up. Calming down. The perpetual strangeness of quietude, of comfort, the specks of color when all you’re used to is a brain with a mind of its own, screaming at you from every possible angle darkness can take.

...

“Cool. Josh.”

“Your name is cool Josh?!”

Great, Josh thinks. Five minutes into the conversation and you’re already messing it up. But Tyler doesn’t notice or pretends not to. Instead he just smiles, leaving Josh to grin back. Cool Josh.

They talk and talk. About their favorite bands, music. Tyler murmurs something about a keyboard and Josh lights up. Minutes feel like hours until Josh has to get to the counter and Tyler has to get back to -- whatever it was that he did. Josh didn’t ask. He’s probably going to college. He can imagine Tyler going to concerts on the weekends, dressed in black. Getting drunk. Not having to worry about money or do shifts in a music store. They exchange email addresses. This is the beginning of something, he can feel it.

...

This is the end of something, Tyler can feel it. The end of his isolation. The hatred for himself. His epilepsy dictating every move he makes. Other people making decisions for him. Josh and he email back and forth, picking their conversation up where they left. It’s like they haven’t stopped at all. Tyler can still feel the atmosphere even as he lies on his parent’s sofa in postictal haze and reads Josh’s latest email on his phone, a comfort from what seems like another world. Where people have jobs and work shifts instead of lying on their parent’s sofa in the middle of the day, blissful that they’re fully oriented again. Another world where you can send an email at 2AM and mean it. Tyler felt incredibly self-conscious about the fact that he always sends his emails at 4 in the afternoon like a school kid that was done with his homework, while Josh wrote in what seemed to be the middle of the night. Tyler makes a mental note to schedule his next email to 1 AM to make it look like he’s just another college kid that spends too much time on the internet. He reaches for a tissue and wipes the drool off his chin. It was true, at least in a way. He was just a kid that spent too much time on the internet because he couldn’t get out of his head.

Hi Tyler, this is Josh...

Tyler smiles at the screen. A message from another world. Like a message in a bottle, a bottle that travelled dark waters. Words mingling with waves. For the first time in months, Tyler didn’t feel like he was drowning. He holds on to the screen, the smooth surface. This was the beginning of something.

...

A hundred emails later and they’re still talking. Navigating a friendship both online and offline wasn’t difficult, neither for Tyler and Josh, even though they both had different reasons. Josh because tried his best to make do with a minimum wage job that consumed almost all of his time and energy, Tyler because he tried to make do with seizures that sucked the life out of him. Nourishing a friendship when you have epilepsy is like playing hit the pot in a minefield. You never know when it’s going to blow up and vanish into thin air, the life you’re holding in your bare hands.

[2017-10-08, 02:01 AM, Tyler Joseph] yeah sorry, would love to come over but i have a migraine

[Josh Dun: Missed Call]

[2017- 11-01, 01: 33 AM] sorry josh, my mom had a car accident and i was in the hospital with her, had no reception, you know how shitty hospitals are

[2017- 11-20, 04:45 AM] hey what’s up? yeah i haven’t been around much, sorry about that, i think I’m coming down with the flu

[2017-11-22, 07:34 PM] i’m just really busy with school, can’t go to that concert but tell me how it was

[2017-11-22, 10:36 PM] dude, your hair looks sick

[Josh Dun: Missed Call]

[2017, 11-24, 10:06 AM] sorry, was at the hospital for the last two days, had no signal

[2017, 11-25, 04:30 PM] i’m feeling better, thanks, stomach flu again

[incoming phone call: Josh Dun]

[2017, 11-27, 07:00 PM] yeah, sure let’s meet up. saturday maybe? saturday night?

Tyler cringes at the word “night” but he decides to give it a go. Josh challenged him to a Happywheels marathon and it would be okay, he concludes. It’s just a night out with a friend, he pleads his parents. It’s Josh, he’s okay. I’ll take my meds with me. Yeah, I know, not the Keppra. I’m almost done with switching back to Lamotrigine. I know, I won’t mix them up. Yeah, the emergency meds as well.

“Does Josh know how to administer them?”

His mom raises her eyebrows. He hasn’t had another full blown status seizure, just the “usual” routine of grand mal seizures and smaller ones since the last long episode (which has led his doctors to switch him back to Lamotrigine, with Clobazam as add-on) but he still cringes when he thinks back.

“Errr.. I suppose...” He mumbles, tugging at his hair.

“Tyler. Look at me.”

Tyler doesn’t. His mother starts over to him, hands on her hips.

“TYLER.”

Tyler shrugs.

“Tyler.”

Her voice softens. Tyler looks up.

“Have you told Josh you are an epileptic?”

An epileptic. The word his mother prefers. Next to challenged and handicapped. They all made Tyler cringe. He can’t possibly imagine to open an email to Josh with “Hey Josh, what’s up. I’m an epileptic.” He might as well emerged out a horror movie, pop out of the frame, and scare the living hell out of poor Josh. An Epileptic. It even sounded like a sequel to The Exorcist. The word epilepsy doesn’t have a place in their friendship. Tyler shakes his heads and, before his mother can say a word, grabs his rucksack, phone, and stomps out of the house. He may not be able to drive but he can still run. Even after countless seizures he’s still athletic, he has the body of an athlete. A grumpy and tired athlete, but an athlete nonetheless. He can feel it in his lungs and his muscles, in the way his legs pump, his feet hit the pavement. He runs to the bus station and, ignoring his mother’s calls, hops on the bus, texting John “I’ll be there in a sec.” No, he’s not an epileptic. He’s just Tyler, even if it’s only for Saturday night.

A few hours later. Tyler feels high on laughter, about Happy Wheels Adventure, about the fact that this is the first Saturday night he’s spending with a friend in what felt and seemed like (and really was) ages. Josh and he lay sprawled on Josh’s couch. He could sense Josh’s self-consciousness about his tiny apartment, the moment when he let Tyler in. One bedroom, living room, bathroom, kitchen, all crammed into a space no bigger than a shoebox. And this is exactly what he said. This is awesome. The paint that looked like someone had painted the walls with crayon, the creaking floorboards, the Death Cab for Cutie album artwork on the walls, the electronic drum in the corner of the room. A place that screamed JOSH in big, yellow letters.

“You want a beer?”

Tyler nods out of reflex. They’ve been trying to get Spencer and Sven to the next level for two hours now. He’s been too busy trying to stick to the flickering “your goal is to survive” on the screen to notice how his right ankle jerked more and more. Prolonged myoclonic jerks were never a good sign, some part of Tyler knows it, knows it all, the effect of alcohol and the lack of sleep and the jerks and the heat and the excitement but he doesn’t care. He’s living in the moment. His goal was to survive.

...

“You want a beer?”

Josh asks more out politeness than out of reflex. He wasn’t sure if Tyler drank alcohol, still isn't sure as Tyler takes a sip, makes a face, and puts the beer away, but he wanted one so what does it matter. He settles next to Tyler. He still had that look on his face. A little kid on Christmas. The moment he stepped into his apartment his face light up. He even beamed at his horrible, horrible bathroom which was tiny (he hit his knee on the toilet every time he took a shower) and dysfunctional (you had to perform a complicated ritual to get the hot water in the shower running, which included turning the tap on and off again in quick succession until the hot water in the shower – or what was left in the boiler – came on, ever so slowly, with the stutter of a pipe that was rusty and perpetually clogged ). This is awesome. Josh smiled in response, a little unsure of what to say. Was it meant ironically?

“We’re good! We’re good! ... How are we going to get out of there?”

They both laugh and groan at Sven’s misfortune of riding his bike straight into a televised, computerized hell. The flat is completely dark apart from the bright screen in front of them which illuminated their faces like ghosts. Josh can still hear his mom’s voice in his head lecturing him about the dangerous effect of sitting in front of the computer screen in the dark. And true, he screen was flickering quite a bit. Josh hands Tyler a red bull and settles back into the pillow, pushing his mom’s voice out of his head. Thank god they weren’t epileptic.

...

4 AM. Tyler wakes up, his heart beating wildly in his chest. It seemed only like a moment ago when he and Josh finished their Happy Wheels Adventure marathon and moved on to listen to the soundtrack of Hamilton the musical. Tyler felt so happy and ecstatic he even rapped along to his favorite parts of My Shot:

The problem is I got a lot of brains but no polish

I gotta holler just to be heard

With every word, I drop knowledge

I’m a diamond in the rough, a shiny piece of coal

Tryin’ to reach my goal my power of speech, unimpeachable

Only nineteen but my mind is older

These New York City streets get colder, I shoulder

He slowly rises trying to locate his body in space. Stay calm. Stay calm. The last thing Josh needed to see was a grand mal seizure in the middle of the night. Tyler crawls through Josh’s apartment. He’s using his phone as a makeshift torch as he feels frantically for his rucksack. 10 missed calls from his mum. He taps on ignore and quickly opens the zipped pocket of his bag, expecting two bottles. There is only one. Shit. He’d forgotten the Lamotrigine. He knows, he’s supposed to take the drug regularly and forgetting is just the worst because it makes him feel so much worse than a seizure alone, he knows, he knows, he knows, but shrugs and swallows the pills anyway. It wasn’t like he’d completely forgotten his meds, just the Lamotrigine this time and hopefully the clobazam will keep his brain quiet. It tastes even worse with red bull, though, and Tyler makes sure to take the smallest of sips to eliminate any further risks. When he’s done he crawls back to Josh’s couch, hoping go get some rest. He glances over to Josh who slept through it all.

...

“Good morning...”

Josh mumbles as Tyler staggers through the room in jeans and a t shirt on backwards. “Hey, Tyler, your shirt is inside out...”

“Huh?”

Josh raises his eyebrows at Tyler. Something wasn’t right. He was pale and looked peaky, sweaty, with large bags under his eyes. If he didn’t know any better he’d say Tyler had the worst hangover he’s ever seen.

“Tyler, are you okay? Do you want ---“

He was about to finish “a glass of water” when it happens. Tyler’s eyes deviate to the right, his body grows rigid, and he falls to the floor with a loud thump.

“Ty--!”

Josh rushes over to him. It’s true that in emergencies your brain goes on auto-pilot and you just do the things that are required, things you keep stored in your brain, locked-away for emergencies, for moments when time isn’t time, really, it’s minutes that feel like hours, hours that seem like seconds in retrospect.

“Yeah, hi, uh, I need an ambulance, my friend is having a seizure... my name is Joshua Dun, D-U-N...”

Josh presses his mobile to his ears with one hand while he listens to the operator giving him instructions. Move any furniture that could hurt him away from the body, loose tight clothing around the beck. Tight clothing around the neck? Josh kneels next to Tyler. There was no tight clothing but Tyler sounded like he was being strangled as he gasped and struggled for air. Stay calm, he won’t swallow his tongue. Josh nods reflexively. Tyler looked like he was in so much pain. He wanted to rub his back and tell him it’s okay, it’s going to be okay, but he hovered over Tyler’s twitching and jerking body, scared to make it even worse. A few seconds later the seizure ends almost as abruptly as it began. Tyler eyes dart across the room. Mouthfuls of saliva run down his chin. Josh turns him on his side, recovery position, you’re doing really well, the automated voice in his ear says, and Josh wishes he could say the same about his friend on the ground. It’s only when the paramedics arrive and take over Josh notices that the insides of his palms are bleeding, the parts where he had dug fingernails deep into his skin. He takes Tyler’s bag and follows the paramedics in what felt like a trance. No, there’s no medical ID. Does your friend have epilepsy? Do these seizures happen regularly? How often? Is he on medication? Josh wipes his hands on his jeans. He tries to come up with an answer. How could he say he’s my friend when all he knew is I had no clue?

...

The voices grow louder and louder. Paper thin hospital walls make arguments sound much worse. The echo goes right through you until it is swallowed by the noise, the beeping and the steps and the voices over the intercom. Josh clears his throat. Tyler’s voice is getting louder and more defiant. Someone hisses in reply. Josh’s skin prickles. He never liked to eavesdrop on other people’s arguments and the fact that he was still waiting in the ER with Tyler’s bag in his hand only added to his discomfort.

“THEN STOP ACTING LIKE A CHILD! SERIOUSLY TYLER, DO YOU HAVE ANY IDEA WHAT YOU’RE PUTTING ME THROUGH?!”

Josh clears his throat again. A kid, probably Tyler’s younger brother, looks up from his phone and raises his eyebrows.  

“Does this happen a lot?”

“What? The seizures or the fighting?”

“Err...”

Josh scratches his head. The kid seemed entirely unfazed about it all, about the hospital and the fact that the nurses recognized Tyler on the spot. “Tyler, you’re back again with us? I thought you were doing better!”

“All the time, pretty much. Sometimes he has a lot of them and sometimes not. Mom is mad when he forgets his meds and it happens.”

The sentences sounded like he learned them from a book. Learned them by heart to know which pieces of information he could feed to strangers. But then again, Josh wasn’t a complete stranger, or at least he didn’t like to think himself as once. He sighs.

“That sucks.”

The kid doesn’t reply. He’s captivated by the tiny glowing screen in front of him. Josh is a shadow in the ER. No one, neither the doctors or nurses acknowledge his presence in any way. He doesn’t have a hospital badge or bracelet. He’s on neither side. He might as well be invisible.

A sharp blonde woman stomps out of the room, pushing a wheelchair. Tyler looked like he had shrunk, crumpled. (And he had, at least that’s how Tyler felt. All that was human in him recoiled from the guilt he felt. Josh looked so overwhelmed and lost and it was all his fault. He totally blew it.)

“Zack, there you are. You’re Josh?”

Josh could feel himself shrink. He stared at his feet, lost for words. Great. He hasn’t even brushed his teeth yet.

“I’m Kelly, Tyler’s mom.”

He shakes her hand. He’s going to get lectured as well, he can feel it.

“Hi, err...”

“It’s okay, I’m not mad at you. In fact, I wanted to thank you for calling an ambulance.”

“Oh, no problem at all.”

“Tyler, what do you say?”

Tyler mumbles a small “thank you,” not daring to make eye contact. They make their way out of the hospital and it’s only when Josh is on the bus back home he realizes he’s supposed to be at work right now, at the counter of the music store, which seemed altogether like another world. Josh was torn between feeling secretly relieved – he had a life he could go back to – and angry. How could he go back to his life, how could he count cash and buy milk and come home late at night now that he got a glimpse at another world, a universe that wasn’t quite parallel but that had to be traversed, a universe where bodies fell out of time, where Tyler fell from the face of the earth and had to make the lonely journey back to consciousness, again and again and again. Just like that.

...

Over the next few days Josh’s eyes are glued to his phone. Not a word. Nothing from Tyler. He tries and tries, writing multiple emails and messages and erases them all. There were no words for what he wanted to say. No, there were words but they weren’t enough. There were words but they were too much.

Hi Tyler, this is Josh. I’m really sorry about what happened. Hope you’re doing okay sounded incredibly generic. Tyler got that a lot, probably.

Tyler, I’m so sorry. I had no clue. Can I do something, anything. Can I

Tyler. Don’t be mad. I don’t care that you’re epileptic. You’ll always be cool to me That was only half of the truth. He cared!

[Incoming phone call: Josh Dun]

...

It took Josh and Tyler many more months, months full of seizures and visits to the ER, months filled with Happy Wheels Adventure marathons, binge watching shows on Netflix, and making music together to learn that friendship is a skill and a language, something that needs to be nourished and mastered to bridge the dark, inevitable gulf between watching you have a seizure is like watching you die and you’re my friend and I care about you.

...

Another night. Another try. They’re settling in for another Happy Wheels Adventure marathon but now it’s different. Josh has stored extra bottles of anticonvulsants in his bathroom. They don’t talk about it, though. They talk their way around it. Epilepsy isn’t an elephant in the room. It’s a black dog that is with you when you wake up in the morning and with you when you fall asleep. Josh knows. He knows Tyler doesn’t want to talk about it and so he avoids it, out of politeness, out of fear. He can hear the faint scratching of paws against glass window, can see those beady eyes gleaming at him from a distance.

...

It worked. It was a life, Tyler felt. More or less. Sometime less, so much less that one night Josh came home to find Tyler (he had given him a spair set of keys) curled up on the couch, eyes red and puffy. They stay up the whole night. Well, Josh does. Tyler dozes off at 11 PM. Knocked out by his brain, knocked out and into that well of sadness that is black and blue and terrifying. Where skin tears as easily as paper. Josh stays awake, his eyes linger on the bruises on Tyler’s body. Black and blue and purple. It looks like he has multiple black eyes, and they are staring at him with the bright sting of suppressed memory. Josh stays awake. He doesn’t move, for fear of waking Tyler up.

The next day Tyler wakes up to the sound of Josh rummaging in his tiny kitchen. One of the skills Josh learned when he moved out is to make soup from scratch, something that – according to his mom – cures everything and anything, even sick brains. He takes a bowl over to Tyler.

“Be careful, it’s hot.”

Tyler squeezes himself in the space between his couch and the table. They have been friends for long enough for Josh to notice that whenever things got bad, Tyler folded his body like a travel toothbrush. Something that is made to fit into a box. Something that is disposable. Designed to be thrown away.

“S’good.”

Try as he might, Tyler believed that he could cure his brain by choosing a time to be so small.

...

Sometimes it worked more.

Having epilepsy and being a musician is one thing. Having epilepsy and being in a band another. It just doesn’t sit well with parents, neurologists, and old high school classmates who were already married. “We’re businessmen,” Josh and Tyler joked, fantasizing about music instruments that could be squeezed into briefcases. Tyler laughed about it all. The joy he felt when making music with Josh transcended everything. How it felt so earnest at the same time. Like something that had festered inside him and that now took its real form in songs and performances. In knowing that this is what I want to do for the rest of my life.

Music is a joy that transcends. Tyler and Josh finally got to the point where he didn’t have to worry about playing the correct note and beat. They got to the point where they could feel the music, feel it make their bones glow. The point where they could play song and feel its meaning, rather than just concentrating on playing correct, clean notes. To allow for the music to become cleansing.

And – touch wood – he’s never had a big seizure while playing and performing. Never. He once had a grand mal seizure the night before a gig and then they played in the middle of nowhere in front of no one and Tyler felt so tired he could barely get the words out, he stumbled through each song and fell off his piano but he made it eventually. He sometimes has small ones. Absence seizures, myoclonic jerks. They continue to play and the audience continues to grow. The few. The proud. The emotional. Some people laugh at Tyler, how he shakes his head and twitches and jerks. Some say it’s stupid. Other finds it original, call it a “form of art.” Little do they know, but Tyler keeps quiet. There was a part in his brain that whispered MUSIC FIRST and he wanted to keep that part alive. That part that of himself was resistant in the truest sense of the word, that knew that his life was still a life.

...

"Do I look good?"

Josh has dyed his hair a new color. Blue. Like the sky or the sea. Bright, vast. Not impossible, not altogether.

"Jesus Josh, this isn't a prom date. This is a neurologist appointment. You're there for moral support."

Josh squints at his reflection in the mirror, twisting and plucking at his hair again and again. Tyler grabs his jacket, gesturing for Josh to hurry up. It’s time and the last thing he wanted was to be late. He hated the waiting room. Josh hurries past. He put on a cap, hiding his hair. Tyler snaps it away.

“And to look good.”

...

Sometimes it worked really well. It seemed so natural, the life he had grown, the music. He felt like people feel when they harvest homegrown tomatoes, he supposes. He’s never been into gardening. Tyler decides to get groceries from the supermarket. Being unable to drive was a pain, especially with groceries, but Tyler actually came to like the bus rides. He wasn’t quite sure whether being epileptic and unable to drive was all that beneficial to the environment (he had to take three busses, three, just to buy milk and vegetables) and even though Josh offered to do the shopping or take Tyler with him in his car, the bus journeys made him feel safe. His headphones. The glaring afternoon sun. He’s moving, he tells himself. He’s moving.

The stifling, blaring heat of the supermarket. His feet shuffle blindly over the floor. Vegetables, fruit, milk. When you’re in a state of perpetual catastrophe, being caught up in the little minutiae of daily life can be strangely comforting, deliberating even. He wasn’t all that different. He was on two different anticonvulsants and his epilepsy was still uncontrolled and unpredictable as ever but he too got lost in the supermarket, unable to remember that milk is always stored in the back of the store.

Tyler pushes his cart around. He wore his usual outfit of black on black on black but this time he had pulled a red beanie over his head. He didn’t want to be recognized. His epilepsy had turned him into a local celebrity of questionable fame. The last time he went shopping groceries with Josh they had no such luck. They were debating the benefits of buying broccoli versus buying another jar of peanut butter when a woman from his mom's church group spotted Tyler, darted over to him, grasped his hands, held them to her chest and cried “Tyler! I’m praying for you!” right in the middle of the vegetables. Josh couldn’t stop giggling while Tyler was torn between fuming and laughing. What was I supposed to do, man? When they left the store, broccoli in tow, Tyler squinted at an empty sky.

…

Having epilepsy is like having a car crash, one after another. It's not like you're an accident waiting to happen. If it were like that you'd get through and then you'd be fine, eventually. Having epilepsy is like having one car crash after another and you never know when you’re tipping over the edge, when the road is becoming a bit sharp. Having a bad phase? Could be a good phase (because it can always get worse). Having a good phase? Could be a bad phase (because it can always get better). Could also be your last good phase before a bad phase. It throws you off balance. How are you feeling. Have you taken your medication. Words like gravel, and you can't see the road in front of you.

Tyler can feel his stomach bulging. One car crash after another. He's spread out on the back seat. Head buried in his arms, eyes squeezed shut. They've been on the road for four hours now, en route to a small festival they’re playing. Tyler is pretending to sleep so Josh doesn't get mad (which, for Josh, was really intense worry). He could even feel his eyes closing as Josh hummed along to the radio. He knew Josh was far too self-conscious about his voice to ever sing in front of him but he had to say it, Josh has a really nice, soft voice. The car swayed slightly as they bumped over a large pothole.

"Shit. Sorry Tyler."

Tyler smiles in his sleep.

...

They've been on the road for seven hours. Tyler slept for the last three hours and now he's starting to feel sick. Not seasick, car-sick. He grabs his wrist to pull at this rubber band, that old habit. He can hear Josh sighing slightly, can smell the coffee Josh had gotten himself while Tyler actually slept. He'd give anything for a cup of coffee, even from McDonald's. His neurologist advised him to be careful with caffeine (and drugs and alcohol and sleeping and life, really) and Josh was always extra-careful. He hadn't pinned the brochures to the fridge like his parents but he kept them on his nightstand, glossy brochures that had titles like How to cope with epilepsy and Epilepsy: All you need to know.

The car underneath hums. Tyler can feel his eyes closing again. They've been on the road for hours. He rests his head on a little makeshift pillow. He will allow himself to hope for a good day, he decides. Yes, today would be a good day. No accidents, only holes that could be filled with cement.

...

The first thing that happens is the world goes black.

It won’t happen. He’s sure. He hasn’t slept and it’s a festival so sleeping isn’t really part of the plan but he’s going to be okay, he can feel it. It’s going to be okay. It took them three attempts to set up the tent (the first time they set it up and it was inside out and Tyler was so tired he just wanted to crawl into it, that makeshift home whose poles poked into the night sky. The distant sound of people singing along to a ukulele.  

Oh, let's get rich and buy our parents homes in the South of France

Let's get rich and give everybody nice sweaters

And teach them how to dance

Let's get rich and build our house on a mountain

Making everybody look like ants

From way up there, you and I, you and I, you and I

Tyler and Josh crawl into their tent and fall asleep under a sky that isn’t empty for once but translucent, lit with the comfort only music can bring.

...

The first thing that happens is the world goes black.

Josh wakes up to the dreadful sound of Tyler seizing at 5 AM. Whatever it was that had held the seizures back during their performance was gone. Or it was back. Josh wasn’t sure. 2 minutes. 3 minutes. 4 minutes and a half. 5 minutes. 5 minutes 15 seconds. Josh curses and reaches over to grab the bag with Tyler's emergency medication. 5 minutes 30 seconds. Administering buccal midazolam to a hospital dummy is one thing but no one had prepared him for this. Josh kneels next to Tyler. There's saliva and blood everywhere, Tyler must have bitten his tongue quite badly. Great. This is just great. He curses himself and his stupidity. He should have seen it coming. 6 minutes. 6 minutes 15 seconds. 6 minutes 30 seconds. He wasn’t even sure how much of the medication was absorbed. 7 minutes. John can feel the panic rising but he forces himself to stay calm. Stay calm. Panicking won’t help Tyler at all. You need to stay calm. Stay calm. 7 minutes 30 seconds. Tyler starts to vomit and it’s leaking everywhere. Josh grabs his phone and dials 911 with one hand while holding Tyler so he doesn’t choke. I don’t know, we’re in a tent somewhere on a field. Great. This is just great. Josh is too busy holding Tyler, directing the paramedics and rattling off Tyler’s medical history to notice that everything had gone dark and quiet around them as if someone had turned the world off and forgotten to plug it back in. Even the insects had stopped chirping. The dry grass underneath crunches as the paramedics make their way across the field. Josh takes their bags – he was thankful he had slept in his clothes – and follows the paramedics outside. Summer nights feel that much colder when you’re drenched in sweat. He shivers. His skin is riddled with goosebumps. It looked like little ants from afar.

...

One seizure after another. His brain is vomiting electricity.

Josh’s hand in his.

Josh.

...

Waking up to a seizure is like being born again. An empty vessel, filled back up with water and memory.

Josh soon figured that there are certain songs that work only in the hospital. There are certain songs that take you through the long hours when time isn’t quite right. He fiddles with his iPod and stretches his legs. Hospital plastic benches are awful.

I was standing on the surface of a perforated sphere
When the water filled every hole.
And thousands upon thousands made an ocean,
Making islands where no island should go.

You're born again and you can feel the distance around you. Distance that isn't empty or dark. It's just land stretching on for miles and miles. The waves of your consciousness, the shore of your mind. Thoughts like footprints in the sand. There for once second, washed away the next.

The warm feeling of a hand inside his own. Josh.

Those people were overjoyed; they took to their boats.

I thought it less like a lake and more like a moat.

The rhythm of my footsteps crossing flatlands to your door have been silenced forever more.

The distance is quite simply much too far for me to row

It seems farther than ever before

The sound of Josh's voice. He’s singing softly.

I need you so much closer

So come on, come on

Tyler's eyelids flutter. Josh grasps Tyler's hand and smiles.

"Welcome back, Tyler."