Archive of Our Own

You could still be
What you want to
What you said you were
When I met you

Josh turns the radio down, not before wiping his eyes. Not this song, not again. The local radio stations have been playing this one a couple of times now and right when he heard it for the very first time he bawled his eyes out. It fit, it just fit for their current situation. During the past couple of weeks, there's been a lot of talk about Tyler and the refractory nature of his epilepsy. The seizures were on the increase again, it wasn't just bad, which meant 4-5 seizures a week, it was horrific, the seizures were coming every day now, sometimes twice a day. There was pressure to act, pressure to alleviate Tyler's suffering but there wasn't an option which would have channelled the pressure into reaction. There's only so much modern medicine can do and when you have drug resistant epilepsy, that dwindles away to almost nothing. No one dared to touch Tyler's main drug, Vimpat, because whenever they went above or below the 200 mg mark, Tyler's seizures spiraled out of control. They also couldn't change it, Tyler's been through a number of different medication trials, almost all of them with terrible side effects, and nobody could foresee what his epilepsy would be like when they change the medications altogether. Tyler could very well go into status epilepticus again and that's a risk no one wanted to take; the stakes were too high. So they opted for a new strategy. Tyler's neurologist – a new one, one who knew only Tyler from his medical file – suggested a hospital stay and video EEG to phase out the drug that worked as his current add-on treatment, Zonegran, and introduce a new one, Fycompa, under what he called "controlled circumstances." "What I'm reading here doesn't make me optimistic about trying new drugs at home," he said to Josh without looking him in the eye, without actually caring that Tyler was in the room, too.  "With Tyler's type of epilepsy, it's not realistic. It's too risky. I highly recommend hospital admission."

That's when Josh knew that the doctor would give up on them if the Fycompa didn't work. The neuro wasn't even able to look beyond Tyler's medical file to see a human being, someone who is terribly afraid of hospitals, someone who wouldn't be able to stand the stress of yet another medication trial in an environment that was stressful in itself. He just saw the words difficult to treat and complicated and that was enough for him to dismiss any responsibility and to have Tyler admitted. "Just to cover his ass," as Tyler's dad puts it.

However, after lengthy discussions and promises to call an ambulance if things became "too tough to manage" (whatever that meant, Josh has no idea), they left the hospital with a new prescription in tow, another try. With refractory epilepsy it's a constant struggle between staying optimistic enough so you won't lose all hope and being realistic enough to know which hopes are feasible (slightly reducing the frequency/intensity of seizures) and which simply are not (becoming seizure free). It's not like people think, Josh found himself thinking angrily as they left the hospital and he took Tyler by the hand so he wouldn't go into sensory overload and run away. It's not like saying "goodbye to a normal life." This isn't a "journey" into "a new life" or whatever expression people use to mask their discomfort. His grip on Tyler's hand tightened as they passed an ambulance; the flashing and blaring sirens didn't cover the whimpering that came out of Tyler's mouth. A "journey." These people have no idea what they are talking about.

"I know, it's really loud, but we'll be home soon, okay?," Josh reassured Tyler who became more and more agitated by the minute. Sensory overload is one of the side effects of poorly controled epilepsy which is particularly painful. The workings inside a tired, seizure-ridden brain remain completely invisible and yet the consequences are so visible, for everyone to see and to understand (a few), for everyone to see and judge (the vast majority of people). Tyler pulled away from Josh, agony and pain written on his face as he stumbled forward, his vision blurring as the panic over an environment that was too loud, too unpredictable, too much morphed into the panic of having another seizure. Josh turns his back to the starers, the whisperers, and walks towards the exit, Tyler by his side. This isn't a journey or a goodbye. This is our normal, this is our life, Josh repeats in his mind over and over again, like a mantra to stay sane. This is our life.

So there they were, hoping for the best, planning for the worst. And the worst did come. With every milligram Zonegran less in Tyler's body the seizures increase and with every incrase in seizure activity, emergency meds follow because the seizures became longer and Josh doesn't want Tyler to suffer unneccessarily. He knew he was suposed to wait until the five minute mark but he couldn't bring himself to, he couldn't do it. Tyler's seizures broke his heart, they broke him, everytime, no matter how small or big, how regular or unusual. Josh knew, he knew it the hard way from sleepless nights and yelling discussions with parademics that the five minute mark didn't apply to Tyler whose regular seizures range from seconds to 2 minutes max; a seizure that didn't stop after 2 minutes needed immediate pharmaceutical intervention, period. He didn't need for Tyler to seize 3 minutes more just to he would meet a medical criterion that was far too narrow for the unpredictability of Tyler's epilepsy anyway.

Here they were, caught in an all too familiar catch-22. They couldn't increase the dosage of the Fycompa fast enough because that alone provokes seizures and they couldn't take Tyler off the Zonegran immediately because that would worsen the seizures as well. The decrease of one med as one provocative factor, the increase of a new substance as another, and coupled with emergency meds, it all factored into an overall escalation of seizure activity.

Once again, tiredness and sickness took over Tyler's brain.

Without complaining, without a single bad word, Josh turned into what Tyler's parents call "full on Josh mode." Josh told Tyler's parents about the new medication trial and the decline in Tyler's heath the minute it went from "we're not okay" to feeling like they're at the end, once again. Tyler's mom checked in once a week to see how they were doing anyway and Josh didn't keep them in the dark, they've done so much. He tried to choose his words wisely to avoid Tyler's parents becoming panicked and and distraught but there aren't enough words to mask what "compromised neurological status" and "increased seizures" really mean. Immediately they came over, Tyler's mom, his dad, and Zack to see if they could help. From then on, there were groceries in the fridge, everything was clean and smelled nice (very important when you're stuck inside all day, in bed and in your head). Tyler's dad installed rails for the toilet and the shower ("I always wanted to do this," he said as he marched into their bathroom. "It's hard enough, you don't need additional worries about falling in the shower.") In the middle of all of this, Zack chatted to Josh as if this was a regular afternoon: the drowning of the drilling machine, Tyler's mom half-yelling oever the drilling machine to ask what they wanted for dinner, Tyler yelling back as he looked for his noise cancelling headphones and Zack asking him if he's seen the latest basketball game on TV (he hadn't, it was Tyler who insisted on watching games as he couldn't go and see them in person).

It was a particular time, a precarious one, a fragile one. Trying to stay alive, no, fighting for your life, for a better life. Fighting for simplicity, for a normal life, a life that feels incomprehensible as your own life, a sick life, remains unfathomable to everyone else. Dreaming about going swimming with Josh and his family in deep water. Fantasizing about going out alone. About travelling with Josh to faraway places without researching the area for hospitals and requesting letters from your doctor so you'll be able to travel with medications and emergency medications. Hoping to be a dad one day and driving your kids to basketball practice. Or just going to work and being bored like everyone else. Just because you're sick does it mean that dreams of a normal life aren't for you?

He's fighting like hell, fighting without letting the fight take over. Without having the fight drain Tyler of any chance he has. His energy is limited more now than ever. Fatigue came crushing down on him like a brick that fell from the sky right on his head. When you're like this, epileptic like this, sick like this, molehills become mountains. Mountains become molehills. You continue to swallow heavy medicine day in, day out. Medications so powerful they alter the chemical balance of your brain and set off your acid reflux.  And yet this is the easiest part. It's part of your daily schedule, the pillbox, swallowing pills day after day after day. Molehills.

And then there are the mountains. Showering, eating, getting dressed.

What does it mean to fight for your life when all you feel like, all you want is to apologize for your existence?

It means staying alive, still. It means getting through the days one by one.

One by one.

The days got darker and darker. "We need to get through this, Ty," Josh mumbles as he lifts Tyler onto the toilet. They will survive. They will get through this. Tyler was on 4 mg Fycompa so far, 4 more to go. Today has been a particularly bad day – four seizures so far – and Josh knew from the look in Tyler's eyes that he couldn't take it anymore. There's a moment when a person breaks and Tyler can feel it, deep inside his bones, as he sits on the toilet and grabbs on to the rails while Josh leans over him to take off his shirt. He was ready. Ready to give in, to give up, to let go. Simply not take his meds anymore and wait for the big seizure to come and finish him, which felt so selfish as he saw Josh laboring around him, and so pointless, he's come so far and now it was all for nothing. But he couldn't take it anymore, he couldn't, his body felt toxic to him, he felt toxic to other people. His eyes remained blank during conversations, he couldn't follow them, couldn't process new information quickly enough, not with so much medicine in his bloodstream. He had no strength in his muscles, couldn't walk without falling over. An illness that was invisible once has come out to rear its ugly head. Sores and wounds inside his mouth from biting his tongue at night. Bruises all over his body. Droopy eyelids. Blank staring. He simply couldn't go on putting a strain on Josh like that, on his parents, on everyone around him. The disability money he got from the government wasn't enough, he was hemorrhaging his parents' money and Josh's body hurt from taking care of him, he saw it in the tender way Josh moved. Pangs of guilt mixes with self-hatred like water mixes with oil. It stays seperate, it can't be separated in the soil of his soul. You're dragging everyone down. You're a disgrace.

When Josh tells him to get up so he can remove his jeans and underwear he hangs his head low in a pretense of low energy when in fact he just couldn't bear to look. There's nothing wrong or shameful about needing help – he'd rather have Josh help him than a female nurse assistant  – but right in this moment he feels like he's going to break. He can't go on, he can't. Everything was too precarious, too hard at the same time. Just for Tyler to take a shower they had to monitor the seizures and look for that small window of time when Tyler wasn't about to seize so he could be showered without the danger of slipping under running water. A shower, a simple shower, something people do every day without thinking about it becomes insurmountable. He can feel Josh's hands on his hips as Josh struggles with his underpants. His body might as well be made of glass, of glass and bricks. Too fragile to be held, not fragile enough to be destroyed. Tyler grabs the rails. His eyes begin to water.

"A shower will make you feel better, Ty. It's been way too humid today..."

Fatigue, fatigue. Inability to think, mushy brain. Getting worse and worse and worse. Still wanting to tell Josh the important things, things he's been wanting to tell him all along. Fear that he won't, that if the next seizure or SUDEP kill him it'll be too late. The important things, things that are impossible to communicate because human language, the alphabet, all its 26 letters, aren't enough to put into words what the feels for Josh, the thousand things he'll never be able to put into words.

You have exceeded my expectations of what is possible with love

He wants to tell him, needs tell him, but nothing comes out. Panic. Pressure. Josh wraps him in a fluffy towel and continues to chat to him. He can tell that the towels are new. Someone bought them. But who? And when? He can't remember going to the store. Can't remember someone coming home with new, fluffy towels in tow. Need to remember. Forgetting so much, too much. Foggy brain. Seizure brain. Tyler can feel the pressure inside his skull increase, that tingling feeling in his stomach, rising and rising, everything becomes fuzzy and unreal... panic or a seizure or both or nothing at all, it's just you losing your mind altogether...

The expectations ... of what is possible ...

"Shoot!"

Josh catches Tyler in time. He didn't see it coming, he's been talking to Tyler lowkey as usual in an attempt to keep him stable, rooted in the present. As Tyler's seizures increased his panic attacks have come back and with them, talking calmly helps more than any benzodiazepine ever could. But this isn't a panic attack. It's a seizure.  Josh grabs the towels and directs Tyler back onto the toilet lid. "Sit down. No Ty, you can't walk around. No." Tyler, oblivious to it all, tries to get up again. Hindered by Josh, he remains squatted over the toilet. He appears restless as he fumbles with one edge of the towel and smacks and licks his lips, eyes wide and unfocused. A complex partial seizure coming from the temporal lobe by the book, Josh knew, but having a name for it doesn't make it any better. He hates the seizures all the same.

"20, 21, 22..."

Josh counts the seconds. By this time, he trained himself to become efficient during Tyler's seizures – time them, look for symptoms – but being alone with Tyler as he counted the seconds, with Tyler being so far away, makes the lump inside his stomach bigger, everytime. Everything he suppressed and compartmentalized during the day when he's focused and busy with the mundane things of life washes over him during the times when Tyler is gone. He'll never get used to feeling so helpless. To have any sense of control over the situation, of agency robbed away from nerve cells which simply refused to do their job right. 

As he reached the 1 minute mark, the seizure ends. This one felt a lot longer. Josh takes a big breath and turns around when suddenly, there's warm liquid on his feet. He looks down. Tyler had lost control of his bladder again, a bladder that must have been quite full, and the urine that wasn't caught by the towel had run down the toilet and right on his feet. Josh staggers back, not without holding on to Tyler who continued to looked at him with wide eyes. Great. Now Tyler needed a shower, he needed a shower, the towel was ruined, and he needed to clean the bathroom, too. Josh looks at his watch. 6:50 PM. And it was time for Tyler's evening meds. Ignoring the throbbing headache that begins to set in, he waits for Tyler to become responsive and then directs him to the shower chair. It's been way too humid today.

...

6 weeks later

For the most part, the tough times are behind them. They finally increased the Fycompa to a level where it's working and the new drug, together with the Vimpat, kept his epilepsy stable for now. The seizures were still there but they are less intense which means one thing: going out together and enjoying the good times that they do have. Tough times will return all on their own. Maybe they're ahead of them. No, they're probably ahead of them. "Tyler's epilepsy occurs in waves," the last neurologist explained. "The seizure frequency and severity is going up and down, like a wave, it comes and goes, and you've got the accept it like that."

Who cares about waves, Tyler thinks as he rolls over on their picnic blanet to place his cheek on Josh's chest. This isn't the open sea. This is a public park in Columbus, Ohio.

He's so happy about being out in the open again, no, not happy, he's relieved, almost ecstatic to have survived the last exacerbation and be in a state where he can do things again, no matter how small. Just spending an afternoon with Josh in the park without packing an extra set of emergency meds feels like  the whole world. When they left their apartment this morning they ran smack into their neighbor who greeted them with her usual looks of pity and embarrassment. But it means nothing, it means nothing. He can imagine the sounds he must have heard during the last bad phase, with the walls being so thin and the seizures having been so severe. But he's still alive and that is all that matters. Discomfort, embarrassment, ignorance mean nothing in the grand scheme of things. They mean nothing to the beating of your heart, to the air that's forced in and out of your lungs. You're still here. You're still alive.

It's been a sunny, warm Saturday; it feels as if the earth wanted to welcome Tyler back. They had a picnic in the park, ice cream, pita bread, green grapes, and now they're lying on a blanket, the grass tickling the bare soles of their feet. Josh's hand in his. His thumb stroking the puckered scars on the back of Tyler's hands. Scars of IVs that brought him back when Tyler was prepared, when he was ready to die. Ready to die but modern medicine yanked him back with IVs like fish hooks.

It's the little moments.

The skin on Josh's shoulders and arms already an alarming shade of red while Tyler has only just begun to tan. Josh thumb on the white patches on his skin. A scarred white, unforgiving, permanent, on the back of his hands, on his arms, even as the rest of Tyler's skin turned caramell brown. A part of his skin that refuses to blend in and Tyler knows, he just knows. They made their way to the icecream truck earlier this day so he could treat Josh. He could see the exact moment when the look on the cashier's face changed, from arrogant pity as Tyler fought his way through the sentence "chocolate ice cream, two cones please" to repulsion when he handed her the money and her eyes wandered over his arm. He didn't even know what was better. Pity? Revulsion?

"I know what would be better," Josh countered as they make their way back to the park. "Acceptance."

Tyler pretends to swallow an extra large bit of ice cream and says nothing. Acceptance. A feeling he's almost forgotten, he can't remember what that feels like and this time it's not the memory loss from his seizures.

Acceptance.

Focus on the moment. Be mindful. Stay in the moment. Focus on how your body feels in the space you're inhabiting.

Two magpies fighting over breadcrumbs, wings flapping, that characteristic crcrcrcr, not quite bird song, not quite something else

Their bodies hopping up and down, their feathers, black and white against the vast, blue sky

Black and white and green inbetween, the leaves

A green that can only be described as juicy

The rustling of trees and the warm summer air everywhere, in your hair, on your skin

Warm summer air everywhere, in Josh's hair, on his body, transporting the smell of suncream and something that is Josh Josh Josh only

Josh's heartbeat against your cheek

Shivers down your spine as Josh turns towards you and traces circles on your belly with his index finger

Circles on your belly and you beg for Josh to go deeper but you're outside, you can't make out in a public park can you

Circles on your belly and Josh Josh Josh

Circles and shivers on your belly, your spine, your everywhere and you begin to believe that you can fly your soul like a kite

Fly your soul like a kite with your feet firmly on the ground

Fly your soul like a kite until your soul disappears into the blue, the wideness that makes oblivion seem forgiving

Fly your soul like a kite until...

"Tyler? Is this you?"

... a voice brings you back to planet earth. Tyler sits up. Disoriented, limbs aching, he looks up. Two figures, adults. The man is wearing chino pants and a polo shirt, a sweater tied over his shoulders. Who dresses up like that to go to a public park on a Saturday?

"Uh... yeah?"

"Hey, can't you remember me? From school?"

He can't remember people from school. He remembers scenes, situations. His brain isn't so forgiving, it wouldn't make him forget it all. He can't connect faces to names anymore but he'll always remember the mobile phones that were pulled out when he had seizures. The way numerous faces disappeared behind cameras, behind hands held in front of their mouths as they whispered and snickered. Tyler can't forget, he can't remember, and with the voice of the man standing right in front of him it was all back, like a landslide, deep inside of him. He has a funny sensation inside, as if he was about to jump from a high building.

 "We played basketball together. Do you really not remember me?"

And right in that moment, the park loses its color. Epilepsy isn't about a driver's license. It's not about peeing your pants. It's about the little moments. Moments that make your soul shatter into a thousand little pieces. Moments that gnaw on your soul as if the epilepsy was a big, black dog gnawing on a bone. Tyler fumbles with his top, a black one, one that should have been replaced years ago but he doesn't have the energy or the money to do so. There's a hole at the bottom hem he hadn't noticed.

Losing your place on the basketball team, a team that had felt like family for so many years, the coach like a second dad. Feeling like you have become untethered, lacking roots, lacking a home. Not being able to enjoy summer nights for what they were: magical. While the other kids roamed around the neighborhood on their bikes, reckless, entirely free of worry, Tyler sat at home, feeling sick to his stomach from anticonvulsants that wreaked havoc on his stomach and on his brain. 

We played basketball together.

If he had to pin down his epilepsy to one moment it would be this: the moment when he was thrown off the team. Not really thrown off, his coach didn' dare to do that, not without Tyler's dad being a coach, too. But Tyler was called to the sidelines and that was it. It wasn't just about an injured athelete forced to watch the game. It was about having a part of your identity, the biggest part of your identity, the one you were serious about, dead serious about, ripped away from you and transformed into to something you genuinely hated. 

And you still do, but the hate has transformed, from the spiky cliffs of self-pity and anger to the deep pits of grief for a life he could have lived, the life he was supposed to have. He wasn't even aware he had it still inside him, had harbored all these memories. But when he was on the phone arguing with his health insurance company, a company that cares more about its bottom line than about his life, looking for documentation of his recent medication trials he opened one of the cardboard boxes he kept hidden underneath his bed. Instead of proof that he was sick enough he stumbled upon evidence that once he had been healthy: photos of his old team, letters, articles from newspapers someone had cut out. Right there and then something inside of him broke and fell down, no, it came crashing down, far below where words reach. He wasn't even sure how the letters and photos ended up there, someone must have gotten mixed it up. There he sat, in front of a pile of letters, personal and medical, sobbing helplessly as an automated voice instructed him to wait a little longer. Wait for what?

"Is he okay?"

He must have zoned out again, looking dazed and unfocused for too long to get strangers, the inexperienced, the privileged ones, worried.

"We're fine."

Josh's voice. His hand in Tyler's.

"Okay..."

The guy starts become uncomfortable, Tyler can tell it by the quavering in his voice. He's not used to being contradicted. What do you say after years and years of absence? What do you say when a teammate, a friend, someone you've been close to for years, runs away right when you need a friend the most? Someone who visits you in the hospital once just to return to practice and forget all about you? Someone who never returns your calls?

"I'm sorry, can we help you?"

Josh again. Tyler smiles to himself. He didn't know how Josh did it, but with every epileptic exacerbation Josh emerges more self-confident in their relationship. "I've got to be strong for the both of us," he said once, right before they fell asleep, his voice heavy with sleep as his words rang clear. Strong for the both of us.

He eyes the guy. Expensive sneakers scrubbed pristine. His girlfriend, no, wife judging by the ring on her finger. He can sense that his former teammate became someone who wears his CV like an expensive outfit. He played varsity basketball and got a scholarship that enabled him to go to a prestigious university, the scholarship Tyler should have gotten. Got a degree in time, met his wife, married. He was probably college president of something. An overachiever.

"Sorry, I thought I saw someone I knew. Nevermind..."

They take off. For once, Tyler's grateful for people leaving him behind. He doesn't want to hear stories about college life, university, marriage. He doesn't want to hear the deafening silence when he updates them on his life. He doesn't want to turn into the object of pity once again. He's no longer Tyler who's getting pitied. Surviving refractory epilepsy requires another kind of strength, a whole different kind. A strength that this guy would never possess.

"Who was that?"

Tyler closes his eyes.

"Just someone I used to know from school. No one important."

"What an idiot. Have you seen his sneakers? And the sweater? Jeez..."

Tyler giggles. "You're so cute when you're overprotective."

Josh rolls his eyes in response but not without squeezing his hand once more. Tyler fumbles for his headphones. 

"There's this song I really like..."

 It's just medicine
It's just medicine