Work Text:
"Tyler Robert Joseph please."
Tyler cringes. No one ever calls him Robert. But he's at the hospital, a world of its own where the rules of the outside world, the real world, don't apply. A parallel universe where he's called by a middle name no one ever uses, an identifier just as obscure as the illness rooted deep inside his misfiring brain. A world of its own. Once you're in there's no way out. You become an epileptic, a hospital patient, a sick person. You become Robert. Pick and choose. Pick and choose.
"I need your insurance information."
Tyler hands her the paperwork. For the hospital receptionist he's just another faceless body. A diagnosis, a bunch of numbers. She quickly copies all the relevant information into her computer, her fingernails clacking on the keyboard like shoes on a sidewalk. He wonders if she knew what his diagnosis meant. How it controls his life, how it, over the years, thinking about his brain became a part of his life in a way that can only be classified as reflexive. He knew the ICD-10 code like he knew his birthday, his address, his phone number. An combination of letters and numbers that bound him to a jerking body, a misfiring brain. G 40*. Epilepsy.
"Emergency contact?"
The receptionist scans his body, doing the math. Tyler knows he looks young for his age and the anticonvulsants made it even worse. He doesn't have a tan or freckles from spending too much time in the sun outside. He doesn't have hair that as soon as it catches the sun light turns into liquid caramel. Every time he looks into the mirror he sees a ghost, a ghost with hair and eyes like card board - brown, dull, and boring. His skin is dry and pale, and large dark circles under his eyes make him look sick. It's been a long time since Tyler looked into a mirror and doesn't feel ashamed. It's been a long time since he looked into a mirror and saw himself.
"Your parents?"
Tyler shakes his head. His mom doesn't know he's going in for video monitoring at the local epilepsy clinic. He knew she'd rush to the hospital in no time and make a big show out of the fact that he was about to find out exactly why and how his epilepsy was getting worse. Why it wasn't responding to treatment, at least not in the way his neurologist had hoped.
"My, uh, my roommate. Joshua Dun."
Roommate. That's the term both Josh and he chose to cover their relationship, to hide it from their parents. Not that they would be upset - Josh's family never called and didn't look like they cared much about what Josh did or didn't do and Tyler's parents were pretty liberal and open-minded - but Tyler wanted to protect that last bit of privacy. It's enough that his mom still calls multiple times a week, demanding to know what was going on, was Tyler taking his medication as prescribed, did he have any seizures, how is he doing, and how's Josh? It's enough that she calls Josh when Tyler doesn't pick up. It's enough that at the last family barbecue when he brought Josh along she introduced him as "Joshua, Tyler's roommate who helps Tyler when he has a seizure. We're all very appreciative of this conscientious young man, especially me. He's doing a great job and Josh sweetheart, your new hair color looks radiant. Now who wants a sausage?" No, he just knew that they wouldn't stop, they would ask and inquire and poke him with their questions and worries and concerns. It would take Tyler a few more years to understand that as much as he struggled to make the transition for his mom change was even harder because as she saw it, he's still Tyler, he’s still her son, and he’s still chronically ill with epilepsy, a topic that dominates the Joseph family even though their eldest has moved out.
And in a way it's true. Josh is his roommate in every sense of the word. He's there when Tyler has a grand mal seizure and pisses on the floor. He's there when Tyler has simple partial seizures at night, seizures that make Tyler's eyes grow wide and still with a horror only he could see. He's there when the auras come during the day, when Tyler feels like he's being tipped over the edge of something tall and frightening over and over again. He's there when Tyler tears the package insert that comes with the Keppra. He's there when Tyler screams until his throat goes raw. He's there when Tyler bangs his head against the walls of their shared apartment. He's there when Tyler cuts himself because what can you do when you carry an ocean of sorrow and shame inside you, what can you do but to turn your skin into a river?
He's there when Tyler cries until he can't speak. He's there when Tyler cries himself raw, when his eyes turn into red slits in a ghostly white face.
He's there and he's crying too, when Tyler has a seizure at 2 am, 4 am, 6 am.
He's crying because his body is screaming for sleep.
He's crying out of sheer desperation, frustration, exhaustion.
He's crying because Tyler was supposed to fall into the category of people whose epilepsy are controlled with medications.
He's crying because Tyler is defying statistics.
He's crying because of side effects that are worse than seizures.
He's crying because of short term memory loss.
He's crying because of difficult-to-treat seizures.
He's crying because of refractory epilepsy, a term that's as plain and ugly as medical lingo can get
He's crying because of SUDEP.
He's crying because words are failing him
He's crying because
w o r d s
a r e
n o t
e n o u g h
He's crying because he knows that the longer you try medication after medication the worse it gets - chances that you will find a medication that will help you are getting thinner and thinner
He's crying because at the end of the day there's nothing else to do than to get up again and try, try, try.
The two of us, always.
"Telephone number?"
Tyler doesn't have to look at his phone. His memory may be failing him bit by bit but he still knew Josh's number by heart, a simple fact that made him feel safe in the face of a mighty storm. Just thinking of Josh made him feel like home and so he reached for the numbers inside his brain like he's reaching out, trying to pull himself out of the darkness.
"Okay."
The woman hits the space bar a few times as if to stamp it all on Tyler's forehead, diagnosis, treatment, outcome. She hands him various sheets and his hospital bracelet and tells him to wait outside for another fifteen minutes. Tyler fiddles with the paper tied around his wrist. Thank goodness they didn't write EPILEPTIC right on it. Now he could be anybody. He could have stomach pain. Or a migraine. Anything but a misfiring brain.
After thirty minutes (Tyler's been counting off the seconds, faintly hoping that they'd send him back home, telling him it's all a big misunderstanding and he isn't sick anymore) a man sticks his head out of an office. Another administrative person, judging by the tie and the glasses and the tan that are so unlike hospital style. So unlike the sweatpants, t-shirts, electrodes. So unlike ghostly faces and IV poles.
"Tyler Joseph? You can go upstairs to the monitoring unit. Just take the elevator, it's on the second floor."
At least the ward isn't located in the basement like the regular neurology. They probably found out that keeping people in basements is detrimental to your health. At least that's what his mom believes. Tyler, you need fresh air and sunshine. As if his brain was a delicate plant you need to water and talk to, a plant that needed a complicated mix of anticonvulsants just to stay alive, a cocktail of chemicals that circulate in his bloodstream every time he takes a breath, every time his heart skips a beat.
He hesitates. A big sign tells him that yes, this is the EPILEPSY MONITORING UNIT but there's a double glass-door and it's closed. His stomach turns. They aren't locking the epilepsy patients in, are they?
"Hello Tyler, welcome! We've been waiting for you!"
A cheery nurse appears on the other side and opens the door. A smiling face. Long blonde hair. Perfectly manicured hands. She looks like one of the cheerleaders at his old school. The ones who smiled at him when he was Tyler the athlete, giggling and whispering with her friends when she thought he couldn't hear them. The ones who refused to work with him on school projects when he became Tyler the epileptic, their giggles turned into gossip and laughter when she knew he could hear them. Tyler the spazzer.
The nurse doesn't stop talking as she leads him through the unit and to his room, going on about the rules. No smoking. No showering. Free TV, phone, and the internet ("but the wifi keeps breaking down, we don't know why. One of our neurologists is a techie and he's investigating.") He's allowed to leave the ward for 20 minutes maximum each day "but the more you stay in bed the better." Tyler fakes a smile, knowing this won't be a problem.
"Also no alcohol. We have a patient who's really fond of beer and," she rolls her eyes, "of course we can't allow that. But you can drink as much coffee as you want. It's not very strong but well.. it's coffee at least."
Tyler doesn't listen. He's trying to peer inside the rooms but can't see much. Two beds, two regular cameras, two microphones, one infrared camera. Three computer screens, a big one and two smaller ones right between the beds The ward is eerily quiet. There's a faint buzzing and beeping and not much else. A person coughs. Someone talks to their family on the phone. Like the sea before a mighty storm. As if they're all waiting. Waiting for the beep beep to turn into a BEEP BEEP BEEP, for the squeaking of nurse's shoes on linoleum, for a loud scream followed by the unmistakeable rattling of a bed, of arms and legs banging against the rails. For a nurse to ask their usual pestering questions. How many fingers am I holding up? Do you know where you are? Do you know what year is is? Do you know what this [object] is? For the muffled sound of someone crying into a pillow.
"You're in room 10. Your roommate's been waiting for you!"
A hospital roommate. That's exactly what he needed right now. Having to stay in bed for an entire week, shitty hospital food, seizures, and a hospital roommate. He instantly hopes they don't have to share a TV.
"Brendon, here's your new roommate. This is Tyler!"
Tyler has to look twice. He expected to share the room with … well, he doesn't know what he expected but certainly not a guy who looked ... so regular, like he's his age, maybe a year older. Dark hair, a large forehead, and an equally large grin that was clearly meant for whatever was going on on his computer. A guy who looked like he spent his nights drinking beer and smoking weed and playing video games, doing all the things guys their age were supposed to do.
Tyler waves, feeling intimidated and small. Brendon quickly waves back, not even looking up from his computer.
"Hi Tyler, my new roommate."
The nurse ignores Brendon and switches on a screen right above Tyler's bed.
"So Tyler, just get settled. I'd recommend you change into comfortable clothes. My colleague will be with you shortly to measure your head and get the EEG in place, this will take about 2 to 2.5 hours. You didn't use hairspray or any product? Great. The doctor will be here this afternoon to talk to you about further procedures."
He nods, feeling the numbness setting in.
Fear (fear fear).
"And Brendon, be nice to Tyler. No f-bomb today, okay?"
The nurse raises her eyebrows and leaves the room.
Tyler bends over his bag and unpacks one of the many hospital outfits he brought. Gym shorts and and old t-shirt he wore to gym practice ages ago. The clothes no longer fit, they hung on his body like old memories, the material worn out and thin, the color long faded. And that one comfortable hoodie he stole from Josh. This is it, he can feel it: his epilepsy got a different reality now, a hospital reality, a reality where every move, every word will be recorded, analyzed, and scrutinized. He's about to make the official transition from Tyler, just Tyler, to Tyler the epileptic for an entire week, not just for the few minutes where he's actually seizing, and he longs to be alone to he can crawl under the sheets and hide from all the world, hide as long as he can. He's swallowing heavily, trying to blink away tears when Brendon closes his laptop.
"So Tyler, new roommate. Welcome to the epilepsy monitoring unit. Or, as I call it, the unit where we all get fucked by our brains. The wifi really sucks, by the way."
...
2 hours later. The electrodes are in place, all 26 of them, down to the centimeter. The entire procedure took exactly 120 minutes during which Tyler got to scared he dissociated, the fear and panic turning into white noise in an empty, empty brain. It all seemed so far away, the nurse chatting to Brendon, the hands in blue gloves that measured his head, highlighted the relevant contact points with text marker, glued the electrodes to his scalp and secured them with with red plaster. He's running on auto-pilot, his brain doing its best to maneuver through the sharp waves and the slow waves, right across the edges and bumps and ridges deep inside him--
"Looking hot," Brendon grins.
Tyler blinks. He's back and there are blue gloves and wires on his head and he doesn't know what happened, doesn't know how he got here, he wants to rip it all off, wants to tear his brain into pieces, he can't can't can't--
Mayday mayday mayday
"Tyler, are you alright?"
The nurse touches him on his shoulder, waiting for a response. Tyler blinks again. He closes his eyes.
Josh's hoodie on his skin. A touch like a smell like a memory. Like Saturday, like sleep and sunshine.
You're safe now.
You're okay.
breathe
(fear)
just
breathe
(fear)
He nods. He doesn't have the strength to hide his shaking hands and what the fuck does it matter now, he's in the hospital and he's got a sick brain that's no secret, not now--
"I'll be at the nurse's station if you need anything, okay?"
He nods again.
You're safe now.
You're okay.
His brain replays Josh's voice over and over again as he curls into a ball, hugs himself with Josh's hoodie, and drifts off to sleep.
...
Later that afternoon. Tyler feels slow and drowsy. He didn't dare to fall asleep, not with the knowledge that right at this minute a nurse was watching every move he made, every twitch, every jerk, every single brainwave that came out of his brain. His tired, uncooperative, epileptic brain.
Just stop looking a voice inside his mind whispers over and over again but he just can't stop staring at the screen right above his bed, at the lines that run on and on and on. He's beginning to understand why the part of the earth right above the focus of an earthquake is called an epi center. He's staring at the screen and his brain just doesn't care. The fissures and the cracks deep inside his head rumbles and mumble, producing waves that will make his body shake and growl. An epi center. A topography of despair.
Brendon sighs.
"New roommate, you don't have to stare like this. This isn't a car crash, you know. Move on, it's just your brain."
Tyler huffs and settles back under the sheets. What do you know. I'm an accident waiting to happen.
"Come on. Don't be like that. Don't be a mopey sick person."
"I'm not moping!"
"Oh you are. Want a beer?"
Tyler's head shoots up. "What?"
Brendon grins. "Just wanted to see how you react. My last roommate totally freaked out. His meds made him psychotic and he thought I was going to poison him. That was fun."
Tyler rolls his eyes. Shut up, Brendon.
Brendon smirks.
Suddenly, the door slams open and three neurologists march into the room. "Good afternoon, gentlemen! Tyler, we'd like to talk to you about your epilepsy. Do have a minute?"
Tyler grunts.
We'd like to talk to you about your epilepsy.
No thanks, I'm going straight to hell.
He slowly sits up, forcing his grandpa body into the vertical. He doesn't want to talk to them. Not right now, not ever, but it's not like he has a choice. The attending, a balding man with a well-fed belly and Harry Potter glasses looks at Tyler like he's the latest big catch he landed. And here we have a 23 year old male patient who presents with refractory epilepsy, countless EEGs, hospital stays, medication trials, and no social life. Look at that! The two interns are both women in their late twenties. Again, the cheerleader type.
Tyler stares blankly. He's aware he's frowning. He can hear his mom's voice in his mind, the specific tone she uses to remind him not to frown, not to swear, not to wear his shirt inside out. But he can't. He's stuck in a room with fucking Brendon, an EEG and 3 neurologists who all looked like they're bat shit crazy. He hasn't felt like smiling in a while and he certainly won't do it now. Brendon looks at the interns and grins.
The attending clears his throat and takes a step towards his bed.
"So, Tyler. You have epilepsy."
Tyler has to bite his tongue. He knows he's not supposed to laugh at someone who has the power to really mess up his brain but ... is this a joke?
"Yes...?"
Social anxiety aside, he had no idea what the man wants from him. The attending looks through his medical notes, leafing through the letters one by one. Oh. That. He wants the whole history, straight from the horse's epileptic's mouth. No problem.
Tyler starts to mechanically repeat the same sentences over and over again. He's switching to auto-pilot again, but it's different now. His brain is comfortably numb from the facts he can recite by heart. Having epilepsy forces you to be efficient and diplomatic at the same time. It forces you to pack almost 8 years of chronic neurological illness into a 10 minute conversation, to strip all memories from the emotion they contained, a task that felt like routine to Tyler, like taking your clothes off before you go to bed.
I got diagnosed when I was a teenager.
No, my epilepsy isn't properly classified yet. It started out with absence seizures
No, I didn't take anything for it, they weren't classified at first
Jesus Christ let me finish a sentence don't they teach you bedside manners at med school
Then I got grand mal seizures, pretty much out of the blue
My first neurologist said my epilepsy is general ... idiopathic-something, he put me on Lamotrigine
Idiopathic generalized, yes, that's the term
Then I got the jerks
Myoclonic jerks, yeah
No, I don't have JME, it was a side effect from the Lamotrigine
Don't you think they had me tested, this is my brain not yours
No, the Lamotrigine didn't help, we combined it with Clobazam but it was a nightmare
[We. Funny how the medical lingo snuck up on him. It's not like there's a we in the management of chronic illness. His neurologist was the one who prescribed drug after drug, his family watched in horror, and Tyler was the one who had to endure it all, the effects, side-effects, and sometimes, no effect]
I felt really bad, like a different person
[ADR in medical speak = Adverse Drug Reaction. An acronym that looks harmless enough but to anyone who has experienced it the term is the understatement of the year]
I became really depressed
Suicidal
Couldn't read, couldn't do sports, couldn't process new information
Sports? Yeah, I used to play Basketball competitively, had to give that up
["How awful!," intern 1 mumbles, scribbling furiously while red hot anger started to throb in Tyler's veins. Remembering it all felt like looking at a statue in a museum of himself, a statue that wore gym shorts and rubber hands around his wrist. Do not touch. No photographs please. The last thing he needed was hospital-fabricated pity from a doctor who had a thousand other patients on her list]
[Intern 2 clears her throat. Tyler opens his eyes, snapping out of it. What was he ... oh. Sure. He was supposed to give them his medical history.]
Then I was put on Topamax, that was horrible too, lost a lot of weight
No, I haven't tried Valproate yet, I'm allergic to it
Yes, I'm really allergic, I cannot take this drug
I'm on Keppra now, Leve-something, have been on it for some time now
Levetiracetam, yes that's the drug
No, I'm not getting the rages
I hate myself anyway, too bad
Yes, The grand mals are mostly under control, haven't had one in a couple of months now
No, I haven't had another status seizure either
Yes, we still have emergency meds in case something happens
No, not diazepam, got switched to Midalozam
(Why? Do you like having suppositories shoved up your butt? No?)
I'm here because the simple partials are getting worse again
No I'm here because I look good on camera
I don't know, it's scary, I see weird things at night, flashes of color that are melting on the wall
Sometimes I see things too, I feel like there's someone in my room trying to get me
Yes, with an aura, it's a weird tingling that starts from my stomach and goes all the way through my body before I switch
No, I'm just on Keppra, 1000 mg
500 in the morning and 500 in the evening
My neurologist wanted to increase the Keppra first but I can't I really can't I can't take more of this drug I can't
Now he wants to add Carba -something
[The attending raises his eyebrows. "Carbamazepine?"]
[Tyler's stomach jumps. Raised eyebrows. Is this good? Bad? Does this mean anything at all, any of this?]
Yeah. Or Osca... something...
["Oxcabazepine," intern 1 offers, earning an approving nod from her boss for being able to spit out one polysyllabic name another like some crazy epilepsy-fueled machine. Intern 2 starts to chew her fingernails.]
... the more modern version. He said some people react better to it than the Carbamazepine
[The attending huffs, clearly disagreeing with everything Tyler's neurologist said and done so far. Tyler takes a deep breath to keep himself from screaming]
He wants to make sure the seizures are really partial
Meaning: he doesn't have a clue
[The two interns start debating the pros and cons of Carbamazepine versus Oxcarbazepine]
and neither have you
[The attending steps in]
Could you describe your seizures and auras in more detail?
They happen mostly at night, had a couple of auras during the day but no full blown seizure
The auras always start with the tingling in my stomach that spreads through my body, sometimes I get a strange taste in my mouth too, it's copper
Then it stars to spread, my head feels all messed up, like it's filled with wool, I can't think, I get disoriented
[The attending nods, jotting it all down with a smile. And here we have a textbook epigastric aura!]
Sometimes the seizures are complex-partial too, I wander around the house and do things that make no sense
Like usual then, flesh out the door swat
No, they don't generalize
Not yet
My boyfriend says sometimes I smack and lick my lips
Tyler holds his breath. Excitement over the fact that he just said it - he said my boyfriend like it's no big deal at all - mixes with the burning hot shame he still felt every time someone asked him to describe his seizures.
Tyler stops. He can feel his cheeks going red. One of the interns smiles and scribbles something down. Brilliant.
"And can your boyfriend tell us more about your nocturnal seizures?"
"Yes, he's coming to visit me tonight, he could tell you more."
He can feel the warmth setting in again. Just talking about Josh made him feel better. Josh's coming. It's not all bad. It's not all horrible. It's not all lost. It's not.
The other intern steps in, wanting to have her say.
"Tyler, you've had epilepsy for a while now. How do you feel about that?"
Tyler stares at her. She looks young, probably fresh out of med school. There's a ring on her finger, she's engaged, he bets her fiancé is a doctor too.
All of these details tell Tyler that she experiences pain and illness different than he does. For her it's her job, it begins and ends with the white coat she takes off after her hospital shift. For Tyler it's lived reality, a life he doesn’t get to on and off as he pleases. It’s his life. He’s sick every day. Sometimes more so than others. Sometimes less so. It’s been so long, he can’t even remember what it was like before. When healthy meant healthy and not less-sick-than-usual-I-can-even-get-out-of-bed-sick.
Should he tell her how at the family barbecue he got up to get another sausage and started to wobble because of an aura, nothing serious, nothing major, and yet everyone came running towards him? How they all made a big show and wouldn’t let him leave the table again because it would be too dangerous with the grill while his five year old cousin roamed around freely?
Should he tell her how he applied for a job, a minimum wage job, part time, waiting tables at a small restaurant. Should he tell her how the manager couldn't look him in the face when he said I'm sorry but we don't hire epileptics?
Should he tell her how he had a simple partial seizure at the supermarket and people started to whisper about that junkie over there? How he stumbled and fell into a shelf and no one came to help him?
Should he tell her how he can hear Josh cry at night, a sound that broke his heart, again and again?
"How about your social life? Do you have friends?“
Wow that’s direct
The intern nods and continues to scribble.
I take that for an answer.
"Tyler, we can get you in touch with a social worker if you like. Just fill out this form and -"
"No."
His voice is croaked and all wrong but he doesn't care. He doesn't want to talk to a social worker, doesn't want to discuss his lack of social life, he doesn't want to talk to a psychologist either, can't they all just leave him alone --
The attending steps forward to end the big show.
(The conversation stops at 11 minutes.)
"Okay. Tyler, in order to classify your seizures I'd recommend we lower the dosage of Levetiracetam to provoke a seizure so we can see where they are coming from. You're on 1000mg, right? 500 - 0 - 500? Okay. We'll start with 250 mg for tonight, to see where it'll lead us."
Tyler nods mechanically. It's not like he has a choice. Splitting his dosage in half will make him feel like hell but what do these doctors know.
"Oh and finally. There are a few sheets we need you to sign. This one is about data protection ... we use video EEGs as teaching material for our med students and we'd like to show them interesting seizures. Just sign if you agree."
Interesting seizures. A term only doctors use, and people who know nothing about epilepsy.
Tyler quickly signs the sheets - he so doesn't want to think about or picture the possibility of his body being projected on to a big screen in a lecture hall - just so that they'll leave him alone.
"Goodbye gentlemen!"
Brendon salutes.
And off they go. Tyler feels numb and vaguely scared. He knows if he's about to have a seizure this is the best place - the bed rails are protected with cushions, there's an EEG and cameras to record it all, there are neurologists and nurses all specially trained in epilepsy, there's even an oxygen mask hanging above his bed. They're all waiting for the switch in Tyler's brain to switch, for his body to give in. For Tyler’s world to shatter.
He settles back under the sheets, wishing, no, praying for unconsciousness to hit him soon. And the world begins to grow dim again, black again as consciousness leaves his body like a guest who overstayed his welcome.
...
"Tyler, your friend is here!"
He wakes up to the hollering sound of a nurse's voice. Disorientation runs down his spine like a bucket of ice water that’s been poured straight into his face. Tyler, your friend is here. He's sure he hasn't heard these words in this specific order in ... forever.
And when he's about to roll over - it's only 5.15 PM, not even time for dinner or evening meds (hospital time just doesn't pass, not even when you're asleep) and there's probably another Tyler on the ward, a Tyler whose epilepsy turned him into a social butterfly rather than a socially anxious caterpillar - he can feel a hand in his. A thumb stroking his palm. His heart skips a beat.
Josh.
He sits up slowly just to be greeted by a shock of blue hair on white, white hospital sheets. Tyler is secretly glad that Josh has seen so many EEGs and spent so many days and nights with him in the hospital that it's all routine. Josh quickly pulls him into a hug, ignoring the mess of cables on Tyler's head. Not the stupid fake hugs people normally give in hospitals when they're scared that your body will break apart or that you're contagious. Also not the half hugs people give when they pity you. No, Josh gave him a real hug, a bear hug. A Josh hug. Tyler closes his eyes and inhales it all. Josh's smell. Like sleep, like Saturday and sunshine. Like returning home after a long, long journey.
He mumbles something into Josh's neck and Josh responds by squeezing him. He can feel Brendon's eyes all over his body, all over their bodies but he doesn't care. Not now.
They separate after what felt like forever. Josh leans over and quickly unpacks the bag he brought with him. This really is hospital routine. His laptop, two more hoodies (Tyler didn’t even expect Josh to notice), DVDs and video games for his laptop, a six pack of red bull, and ... flowers. Tyler smiles the biggest, stupidest grin as Josh fetches a vase from the nurse's station. Josh got him flowers.
Brendon turns around the second Josh quickly leaves the room to fetch a vase from the nurse's station."So how long have you two been dating?"
What? He stares at Brendon, again, this time truly lost for an answer.
"Er... uhhh..."
He hates himself for feeling so insecure, so stupid, so embarrassed about the one good thing in his life. Look at you now, a voice in his mind whispers. You can't even answer Brendon when Josh has done so much for you, he's been with you through every seizure and episode and you just sit there, stupid and silent as usual --
"For about a year now. But we were really close before."
Josh is back, holding a vase that looked so antiquated, dusty, fragile, and just plain ugly that it could only belong to a hospital. He puts the flowers inside and turns to Brendon. His answer came out so natural, so common. Not like emergency contact and roommate (when he wasn't) and that one person who can tell you more about my nocturnal seizures (because we're sleeping in the same bed). "For about a year now" didn't sound like yes, and it's been 12 long months filled with seizures and side effects and suffering. It sounded like he's my boyfriend and that's enough. And yes, we're dating.For about a year now.
Still, Tyler can't help it. His eyes dart nervously between Josh and Brendon, already picturing a fight. And it's all on camera because epilepsy monitoring units aren't build for privacy, not when there's a regular camera, an infra-red camera, and a microphone installed right above your bed. He can even picture the face of the nurse who watched the video footage of their room right at this second. Look, one of them is coming out! Haven't had that in a while.
Tyler's heart was pounding with fear. His EEG must be on fire.
Brendon breaks out into a smile.
"Dude, it's all cool with me. Love is not a choice. Be as gay and epileptic as you want."
Tyler and Josh snort at the same time.
"Sorry .. I meant.... shit. That didn't come out right."
"It's okay." Tyler grins. Stupid jokes about his epilepsy were his favorite icebreaker and a tell tale sign that this is a person that might stick around, not someone you'll never hear from again. A thousand times better than I'm so sorry and it must be hard living like this.
He sets the flowers on the tiny nightstand and giggles.
Be as gay and epileptic as you want. Sounded like something you can put that on a t-shirt, loud and proud.
...
The evening carries on. After a short discussion
("Josh, there's a camera.
So what. Now everyone can see how cute we are.")
Josh is settled on Tyler's bed while Tyler rests with his head in Josh's lap. He can already feel the old sickness trying to sneak up on him after a hospital dinner that was just plain depressing. One dry slice of white bread, crusty cheese, soggy potato salad and his evening meds, 250mg Keppra, his vitamins, and a pill that's protecting his stomach so he won't vomit from the pharmaceuticals. It's an impressive collection of pills, even with his Keppra dosage cut in half, and it made him feel slightly jealous of Brendon who doesn't take any meds and munches on the soggy broad like it's his last meal.
"Can I get you guys something? I'm about to fetch something from the patient's kitchen anyway."
They had a kitchen specifically for patients? Did the nurse give him a tour of the unit? Did he see a kitchen? He couldn't remember that at all. The perks of having depression and epilepsy: time either doesn't pass at all or it suddenly vanishes. Either way you can't seem to get a hold. Digging up a memory from his mind felt a lot like moving in quicksand. All you end up with is hand- and mouthfuls of sand, again and again and again. Tyler grinds his teeth. He swears he can feel the sand right between them.
"No I'm good. Tyler? No?“
Brendon unplugs his EEG from the screen above his bed, shoulders the bag that contains the portable EEG device, and marches out of the room. Just like that. If there's anyone who can make long-term video-EEG monitoring look cool it's Brendon Urie.
A few seconds later they can hear a thundering voice.
"Chamomile tea? I want a BEER!"
A nurse answers in a harsh whisper.
"Brendon, this is a hospital. You really can't store beer in the patient's fridge."
"But it's mine! What have you done with it?"
"We threw it away. Here's your tea and now go back to your room. You're scaring the other patients."
There's stomping and muttering and swearing and Brendon's back, carrying three hot, steaming cups.
"Here. The nurses threw away my beer. I'm not drinking Chamomile tea on my own."
They all hold on to their cups. The tea wasn't even too bad for hospital standards (meaning: it tasted like tea and not like an old sock that's been left on the radiator.)
"Cheers!"
The impossible kindness of it all, of Josh drinking Chamomile tea with Brendon and chatting with him about god knows what. Of Tyler's head in Josh's lap, their fingers interlocked. Of Josh taking his hand and tapping his fingertips against Tyler’s fingertips, one by one.
The kindness of feeling sick, of looking sick, and still being loved. The impossibility of grasping life with both hands. The impossibility of holding hands, even in the hospital. The kindness of living a life he thought was impossible.
...
The next morning. 6 AM. Tyler gets woken up by Brendon who's watching youtube videos on his phone. Right when he's about to ask why on earth Brendon would play Youtube songs on his phone at this hour a nurse enters the room. Grinning, again. There must be something in the water. Nobody grins like that at 6 AM in the morning.
"Good morning Tyler! I haven't introduced myself yet. I'm nurse Michelle. I'm here to take your temperature and measure your blood pressure. So. How are you feeling? Do you have regular bowel movements?"
Are you shitting okay? A question no one would ask you out in the regular world but in the hospital he's getting inquired about his bowel movements like it's all part of his regular morning routine. Tyler nods while the nurse takes his blood pressure.
"Hmmm. A little low. I don't like that. I'll be back later, I'll have to measure that again."
And off she is. Before Tyler closes his eyes and drifts off to sleep, not minding Brendon, who's mouthing along to some obscure Rammstein song.
"Good morning Tyler!"
He opens his eyes. Is this a déjà-vu? The attending neurologist looks at him. He's grinning too. Tyler turns around. 7:35 AM. What on earth is wrong with people?
Oh, right. To quote Brendon: “We all get fucked by our brains.”
"Did you have a good night?"
He nods. Sure, apart from the intense fear that he's about to have a seizure the minute he closes his eyes, the sound of other people screaming from nightmares or seizures (or both), the helicopter and ambulances going off every minute and Brendon snoring like he’s about to wake the dead, yes, he had a good night.
The attending doesn't wait for his answer.
"Tyler, the reason why I'm here this early in the morning is because we need to carry out further tests."
Further tests? He's bound to a bed with 26 electrodes permanently glued to his scalp, isn't that enough?
"And I know what you're thinking, you're in bed with an EEG, isn't that enough..."The attending goes on and on like he's given this speech a hundred times, completely unimpressed by Tyler's widening eyes.
"But we're not seeing enough in your EEG. There's some activity that looks obscure but just to make sure we want to insert further electrodes..."
Insert further electrodes? What?
"... they're called sphenoidal electrodes. What they do is they'll record the electrical activity in your brain from below while the non-invasive EEG records the activity from the surface of your brain. In order to do that we're going to insert a small wire in each of your your cheek so get right near the temporal lobes. Like I said, we suspect that your partial seizures are coming from your temporal lobes so sphenoidal electrodes could be a real help to us. Don't worry, this is just a routine procedure. It doesn't even hurt, it's just a pinch. Of course it's your decision but please keep in mind that the more we see on your EEG the better we can treat and help you. So if you agree please sign this consent form, an intern will then carry out the procedure. Also keep in mind that you need to have an empty stomach so I recommend you skip breakfast."
Tyler's head is swimming. He's trying to grasp, to understand it all but he can't. He grasping quicksand, again, and it all means nothing, the phone in his hand, Josh's voicemail, his shaking hands when he finally reaches Josh, the words that stumble out of his mouth. It all means nothing, the tears on his cheeks, the cracks in his voice, it all means
nothing
nothing
nothing
"Hey, Tyler." Brendon takes out his earbuds and leans over. "You can hold my hand during the procedure."
Tyler shoots him a look.
"No, seriously. I mean it."
He lets the phone sink and sniffs. It all comes raining down on him, Josh's sleepy phone voice calming him down, Brendon's kindness, the nurse who hands him a small pill "for the pain later and to calm you down," the other nurse who smears something on his cheeks to make his skin numb, the breakfast that sits right across his bed, the oatmeal and the steaming coffee that look all the more delicious the hungrier he gets. The intern who doesn't show up.
8 Am.
9 AM.
10 AM.
10.30 AM.
10.45 AM.
Tyler is sick with fear and hunger. He finally decides to disconnect the EEG and march over to the nurse's station. He’s feeling like he might pass out any minute, what does it matter now. There they sit, nurse Michelle and cheerleader nurse, chatting over coffee. Tyler takes a deep breath.
"Err, sorry ... I was supposed to have a procedure this morning... some kind of electrodes they wanted to insert but the intern didn't show up... and I'm really hungry.“
"The sphenos?" Cheerleader nurse looks up. "You still don't have them?"
Tyler glares.
Obviously not.
"I'll call the attending," nurse Michelle offers.
10.55 AM.
Tyler is about to curl up into a ball as the attending comes waltzing in.
"So, Tyler! The intern is busy with other things so I’ll carry out the procedure. Are you ready?"
Are you ready to have a wire inserted into your jaw without anesthesia and experience crippling physical pain?
Tyler shrugs and then nods. It’s not that he has a choice, not really. You never really have a choice. Not when you’re dealing with seizures that are difficult to treat and you’re every clutching at straws.
Suddenly it all gets technical. Cheery cheerleader nurse comes in, carrying a tray. The attending snaps on a pair of gloves (Tyler has to keep himself from vomiting, he hates that sound with all his heart). The nurse presses a pedal that moves his bed up. She then removes the pillow and puts a large sterile pad under his head. Tyler grabs the sheets. He's never been so scared in his life. The attending places various needles right near his head and starts to fumble.
"Let's see...."
The attending places two fingers on Tyler's jaw, feeling for the contact point where the needle is supposed to go in.
"Open your mouth slightly, please."
Tyler does as he's told.
"Okay, and the other side..."
Two marks on his cheeks. Two needles. Two wires. And a lot of fear.
The attending peels the wires and needles out of the plastic wrapping. They're not small. They're needles and wires about to get stuck into his cheeks.
Tyler starts to hyperventilate. Whatever they gave him to "calm him down" didn't work at all.
And the fear is so stupid, so small and stupid compared what he went through, the seizures, the passing out, the bullying, the loneliness, the screaming, the crying alone in the dark. What’s a small piece of wire compared to that? Nothing.
But he can see the needle and it's not small. It's so not fucking small.
His legs start to shake.
I can't do this.
Something obscure on the EEG
I can't do this.
Treat and help you
I can't do this.
This will calm you down
"Just try to remain calm, okay?"
The attending turns Tyler's head to the right side.
"Are you ready?“.
Suddenly there’s a hand in his. He squeezes and Brendon squeezes back.
Tyler nods, determined this time.
You can do this
Fingers on his cheek feel the contact point.
You can do this
A small pinch.
"Going in..."
You can...
“NOOOOOOOOO!!”
He starts to scream. A pain to intense he's sure he's about to break or vomit or just vanish right off the face of the earth. Like someone stuck a knife into his jaw, a knife with a blade that's coated in extra hot chili sauce. A weird tingling, numbing feeling in his mouth. Unbeknown to Tyler the attending, despite his best efforts, medical knowledge and the many anatomy textbooks he’s read, hit his jawbone and a couple of nerves and is now poking around, trying to find the right way to push the needle in direction of his skull bone.
Tyler breathes heavily through his nose as the attending moves the needle further in.
A squeeze from Brendon.
After some further poking and prodding it's all in place. The neurologist mumbles a lukewarm excuse and replaces the needle with the wire. Tyler huffs.
You just stuck a wire 4.5 cm deep into my jaw. I'm not taking a sorry from you.
The attending secures it all with a spray plaster and and an extra plaster. Lying there while the attending fans air over his jaw so that the spray plaster dries quicker feels completely surreal. Like his body officially broke and is put back together, piece by piece.
“Okay, the first cheek is done. Now to the next cheek... turn your head to the left please..."
This time it really only feels like a small pinch. Apparently there's no jaw bone in the way, not this time. The attending replaces the needle with the wire, secures it all, and lets the nurse connect the two new cables to the EEG device and clean everything up.
"All right, we’re done!“
The sphenoidal electrodes are in, broadcasting live from his temporal lobes.
And off they go. Tyler settles back into his pillow, giving Brendon a weak thumbs up. The oatmeal and his coffee are still waiting for him, stone cold. He doesn't feel like eating, doesn't feel like talking, doesn't even feel like curling up into a tight ball because every time he rolls on his side and his cheek touches the pillow a pain shoots through his jaw, so intense it makes him want to throw up. So he just rests on his back, his eyes closed, and lets himself sink back into the sand.
...
The next day. Tyler spent the entire night half-awake because the pain had kept him up despite 800mg Ibuprofen and the cool pack the got from the neurologist who was on call. And almost as if this is the big moment his epilepsy had been waiting for it he had a seizure too. Not a full-blown one, just an aura, but it was enough for the neurologist to come jumping into his room and look at his EEG while he asked Tyler how he was feeling.
It’s 4 AM, I am in pain, and I feel like I’m spinning upside down, how do you think I’m feeling
Now it’s 10.30 in the morning. He already slept through half of the morning and now groggily sits up as the attending is standing right in front of his bed.
Again.
“Tyler! Did you just wake up?”
He nods. This man had a tendency to ask a lot of questions that could be easily answered by just looking him right in the face and recognizing the big DON’T ASK STUPID QUESTIONS that was written right on it.
“Okay so you had an aura last night, am I correct?”
Tyler nods.
“And that’s great but we’re still looking for more seizure activity in your brain. So I think we just need to keep waiting. Alright?“
That’s great. He’s sure he’s never heard that phrase in relation to his seizures. He’s still getting I’m so sorry a lot, followed by a nervous That’s awesome when he talks about the things that are completely mundane for other people but for him on a bad day, a really bad day, it’s an accomplishment.
His days sounded a lot like the phrases out of a foreign language textbook. When you don’t know how to pronounce a single word but you still understand the concept behind the words because it's one of the things everyone does.
I got out of bed and ate a meal.
I went to the supermarket today.
I got out of bed and got dressed. All on my own.
Completely mundane, boring task. For Tyler it feels like he’s climbing up a mountain with large stones tied to his feet because he’s fighting his brain in more than one way.
And it is an accomplishment if you think about it that way. Because he could have stayed in bed and let it all go to hell. He could have stayed in bed and let the weight of the ocean drown him. But he chooses not to, and so he comes back up, again and again, sputtering and muttering, his body washed up at the shore, sand between his teeth.
…
Later that afternoon. The pain has transformed. Tyler still wasn’t sure if it’s the fact that his body is finally getting used to the two pieces of wire that are stuck in his jaw but the pain is less sharp, less like a blade coated in chili sauce, and more like a thick, thick fog he needs to push through when he can see only so far, when his limbs are heavy as hell. And so everything becomes unreal: nurses and doctors entering and leaving the room, the family that visits Brendon, the lunch he’s supposed to eat but can’t because opening his mouth is impossible.
“Okay Tyler, this is the last time I’m asking you this. Do you really not want your delicious looking … uh, what is this? Spaghetti with tomato sauce? Straight out of the hospital’s cafeteria, overcooked and cold? Doesn’t that sound delicious?
He grins. There are two things he envies Brendon for: his ability to make the stupidest jokes and his ability not to have any seizures. He would trade in his brain anytime.
“No man… I feel s….“
“I feel…I….I….I….”
He stops mid-sentence. Copper taste in the mouth.
No no no
If Josh was here he’d know what to do. He’d know what it means when Tyler grows still and his breath gets heavy. He’d know what the loss of control meant, again and again. The all-too familiar tingling that stars from his stomach and spreads, the tingling and suddenly his head feels like it's stuffed with wool, he can't think, he can't--
"Hhhhhhhhh..."
Brendon looks up from Tyler’s spaghetti. Suddenly it all happens at once. Brendon watches with the shock of someone who’s never seen an epileptic seizure before. He watches with the kindness of someone who cares. He watches and his own body is paralyzed with the fear, with the shock of knowing Tyler needs help and there’s nothing, absolutely nothing he can do.
There's a weird, strangled noise and it doesn't come from his laptop. Before he can press the call button or yell for help the room fills up with doctors and nurses, all tending to his roommate. Tyler isn't jerking or convulsing but he doesn't look okay. His head deviates to the right and, so slow it’s painful to watch, the rest of his body follows, his limbs all stiff and bent. His eyes are rolled back, only the whites are visible. There’s a long string of saliva dripping from his lips on the hoodie he's been wearing non stop for two days now (probably belonging to Josh).
Suddenly it all gets technical. The attending studies the EEG and Tyler’s body and makes notes while two nurses take care of Tyler who clearly doesn’t approve of blue gloves or suction devices near his body. In the end it takes two nurses to hold him down while a third one sticks a suction catheter into Tyler’s mouth and clears his mouth and airway of the saliva that’s been accumulating and that made his breathing heavy and labored.
“Hhhh…hh...h......................"
“Hh…hhhh….“
“…..”
It’s the longest 2 minutes he’s ever experienced, trying not to gawp and stare but not wanting to ignore Tyler’s pain either, the sheer fear he’s seen in Tyler’s eyes before the seizure started.
Now he knows what Josh meant with “long nights.” He can’t possibly imagine going through his night after night after night.
Yet as sudden as it started it's all over. Tyler's body grows limp again and he sits slumped over, the tenseness of his muscles completely gone.
"Tyler? Can you hear me? Tyler?"
Tyler nods slowly with glazed eyes.
"Do you know how many fingers I'm holding up?"
The nurse waves her hand impatiently in front of Tyler's eyes.
Brendon bites his tongue.
Jesus christ cut him some slack, the poor guy just had a seizure
“Do you know what year it is?”
A clear no from Tyler.
"Do you know where you are?”
Another no. He wipes his mouth with shaky hands. This is obviously not the first seizure he's had.
The nurse looks at the attending, not knowing what to do with Tyler and his brain.
"Tyler, you just a seizure. Are you alright? Do you feel okay now?"
The attending rubs Tyler's arm. A kindness he can afford. This is obviously not the first seizure he's seen.
Tyler nods groggily. He's trying to say something but the syllables that are coming out of his mouth are like his body during the seizure: all twisted and wrong.
"Hhhh....h..."
The nurse raises her eyebrows.
"H? Hurt? Are you hurt?"
Tyler shakes his head.
"Hee...."
"Help? Do you need help?"
"J....Jh.....Jhhh.... Jhhhish.…….“
Tyler looks at them expectantly.
The doctor mumbles something about language impairment and dominant hemisphere.
The nurse shrugs her shoulders.
Brendon rolls his eyes.
He's talking about his boyfriend Josh you idiots
"Okay, we're going to let you go back to sleep, okay? But if there's anything please press the call button, okay?"
They stomp out of the room, leaving Tyler to a body that twitches, to eyelids that flutter, to a mouth that repeatedly forms the word Josh over and over again. Brendon doesn't tell them but he's keeping an eye on Tyler as the afternoon passes, just to be safe.
…
The evening. Hospital days just don’t end, not when you’re really sick. Tyler has been half-asleep, half-awake since he came out of the seizure and the horrible migraine he had masked the pain in his jaw. The benefit of being in the hospital: trading one kind of sickness for another.
He’s about to try to sit up again when there’s a door pushed open. Footsteps. He knows the rhythm like his heartbeat.
Josh.
Which meant: being safe, being home. Josh always understand, the aftermath of his seizures, how to hold him, how to cuddle without setting another migraine off.
It also meant being able to pee after hours of not being able to go because he – as embarrassing as it was to admit – needed some help with that. He’s fully oriented again but he still couldn’t walk or stand without falling over. And even though he knew he could just press the call button and have cheerleader nurse escort him to the bathroom he so didn’t want to. He wanted to enjoy the luxury of being able to piss in private.
“Jish..…”
“Yes?”
He could cry. He knew how his words sounded after a seizure, how his neurologists always commented on his language like it’s this one big flaw that makes him an epileptic. With Josh it never mattered. Josh always understood what he wanted to say, and he never made fun of the words that came out of his mouth, even when they sounded funny. The feeling of being understood never ceased to surprise him and it clearly never ceased to make him feel grateful for Josh, for the kindness Josh offered, every single time.
He wanted to say so many things.
Thank you for coming, I know you spent the entire day on your feet at the store, you probably haven’t had anything to eat yet
Do you want my dinner I hate hospital food and I can’t eat with the stupid sphenos
Josh I missed you
I had a seizure but it doesn’t matter now
Josh are you okay
I want to go home and be with you
But he just looks at Josh with wide eyes. He really, really, really needed to go. His bladder was about to burst.
He pointedly looks at the bathroom door and hopes for telepathy.
“Do you need…?”
Josh lets the sentence trail off, trying to keep it between them. Tyler nods quickly.
Arms that help him to sit and then stand up. Everything is slow, everything takes time. Even going to the bathroom that’s only half a meter away because you’ve got a body that’s been through the physical trauma of a seizure. Or, like Brendon would say: A body that got fucked by a brain. Simple as that.
“Okay, let’s see…”
They take it slow. Literally step by step. When they get to the bathroom door Josh maneuvers Tyler inside and locks the door. Tyler and Brendon have to share the bathroom with another room and there’s never enough time in the bathroom, not with four epileptic brains and the body’s annoying tendency to go incontinent during seizures.
They both look at the toilet – ugly as hell, even for hospital standards, and there are no rails – and start to laugh. And there it is, again: the ability for being able to laugh about it all, about a stupid toilet that’s proving to be such a challenge.
“Just hold on to my shoulders, I’ve got you…”
Tyler stares at the ground. He can feel Josh’s fingers fumble for the waistband of his gym shorts and pulling them down. Same with his underwear. Under other circumstances, with a different brain and a different body, he would have been turned on but now the only thought in his mind is at least I didn’t wet myself.
He giggles as he sits down, his body still wobbly and with not enough tension, requiring Josh to hold him just so that he can pee in peace without gravity defeating him.
Josh giggles back. It’s simply been too many situations like this and they both long lost the ability to feel ashamed. After he’s done it’s the same procedure. He sits on the toilet and waits while Josh gets some wet wipes and, after it's all done, pulls Tyler's underwear and shorts back up.
When they get out of the bathroom Brendon shoots them a dirty look. I know exactly what you did in that bathroom. They both grin in response.
It’s so not what you think.
...
As the evening passes the three of them return to the usual set up. Josh eats Tyler’s leftover lunch (the Spaghetti are stone cold but Josh doesn’t care, he hasn’t had anything to eat since breakfast), they share dinner (one slice of soggy white bread for each of them), and Brendon gets Chamomile tea for everyone. Josh folds his body on an uncomfortable hospital chair (he doesn’t dare to share a bed with Tyler, not with the sphenoidal electrodes in) and Tyler is… Tyler, with a lot of auras. In the end, Josh has to press the seizure button so frequently that he holds Tyler’s hand with one hand and the button with the other.
From afar, Tyler can hear Josh and Brendon carry on with their conversation, the dialogue between them only occasionally disrupted by a little “ping” noise. He feels so out of it, his brain dragging him in and out of consciousness, that he lost the capacity to worry what it all meant. No, he knew what it all meant: it couldn’t be so bad. With Josh by his side the world became a little lighter no matter how heavy and dark things where around him.
From afar Josh’s voice, calm and collected. Josh never yells, not even at the hospital where most people completely lose it. (Well, he once heard Josh becoming loud, which for Josh’s standards was more like a half-yell, when the emergency physician ignored everything he said and treated him with Valproate. But that was it, no yelling, no fighting, no screaming. Josh was his one constant in an ocean of worry and fear)
“I know … it gets hard when I see us though other people’s eyes. When I apply their standards to the life we’re living, which is unfair to Tyler. Situations like this, the seizures, the hospital … it’s so normal for us. It’s part of the life we’re living together but it’s not the defining part. People always think that when you have a chronic illness it’s the only thing that matters and it’s not. Being chronically ill … it doesn’t rob you of the capacity to feel joy. You know what I mean? And people get surprised when I say this but I wouldn’t trade a healthy Tyler for the Tyler I have.”
It takes Tyler some time to understand that it doesn’t mean that Josh is okay with him him suffering or being in pain. It doesn’t mean he’s okay with refractory epilepsy. In fact, he’s not okay with it at all. It simply means that in Josh’s eyes Tyler is okay as he is. He’s still a person. He still got a life to live for.
…
Day 3.
It took God 7 days to create the world and it takes a week in the epilepsy monitoring unit to completely crash your confidence.
He had hoped that this was it: they reduced the Keppra, he had a seizure, a couple of auras, and now he can go home. But things are never simple when you have epilepsy.
10 AM. It’s not a bad morning, at least not for hospital standards. Tyler had a good night, ate breakfast, and Brendon finally shut up after watching too much Netflix. He feels fine, even as he’s watching a rerun of Judge Judy at 10 AM, something that made him realize how sick and out of it he must be.
Nobody watches Judge Judy at 10 AM on a weekday unless you’re sick, hungover, or at the hospital.
“Good morning Tyler! Do you have a minute?”
Tyler quickly mutes the television and eyes the person that stomps into the room. Another attending, another stupid question. It takes every last bit of self-control for Tyler not to roll his eyes.
“I’m the neuropsychologist here at the epilepsy monitoring unit. How are you feeling?”
A psychologist. Even worse. That meant even more questions that weren’t questions at all but silent judgements on his character. Great.
“We would like to run a few neuropsychological tests to see how you’re responding to the anticonvulsant therapy and how we can optimize the treatment. Okay?”
Since he wasn’t responding to the drugs at all the question only meant one thing: we want to see the damage years of anticonvulsant treatment and seizures have done. We know it’s bad and now we want to see how bad it really is.
He follows the attending through an endless maze of corridors, feeling like a rat in a lab. Again, it’s eerily quiet, not a person to be seen. The strap of the bag with the portable EEG device cuts into his shoulder but it’s only half as annoying as the electrodes that are starting to itch because he hasn’t washed his hair or showered in three whole days and he – in all honesty – really started to stink.
“Okay, here we are!”
He is lead to an office that looks more like a broom cupboard. There’s a laptop, a few papers, pencils, a couple of chairs, and to Tyler’s shock two med students. He knew them: people who looked like him if he was healthy. Except he wasn’t. He half-smiles at them and sits down, feeling self-conscious about his body, its bad odor and equally bad brain.
“Please don’t mind the people in the back, they’re two medical students who are doing an internship here at the unit. They’re just here to observe, they won’t assess you.”
So he won’t get assessed but still get judged. Very reassuring.
“For the first test I am going to read out a list of random words. I want you to remember as many of them as possible. I will ask you in the course of the test to repeat as many words as you can.”
Tyler nods. He hides his clammy hands in his hoody.
“Pencil, desert, mouse, laptop, lamp, book ….”
He zones out as the psychologist goes on and on.
He can’t do this. While the physical pain brought him to the limit of what his body could endure this broke him.
“So, Tyler. Would you please recite as many words as you can?”
He looks up.
A mind like broken glass.
Again, again, again.
“Err… mouse…book….”
The psychologist nods, signaling him to go on. Tyler bites his lip. There was more. There’s always more but his brains was empty. It’s so hard to remember things, to pull them out of the thick, thick fog inside his brain.
“Uhhh….”
“Come on Tyler, I know you can do it!”
If that was meant to motivate it clearly failed. Tyler’s face burns with humiliation as one med student in the corner starts to whisper, ticking the items off one by one.
“…desert?”
The psychologist nods.
“… laptop.”
Tyler slums back into his seat. He’s done. He can’t do more.
“Is that all?” The psychologist raises his eyebrows. “Don’t you want to try at least one more?”
Tyler shakes his head. He’s had enough. He can’t do more. No more.
The psychologist ticks a box at the bottom of the page. The word “below-average” gets a whole new meaning when it’s meant to assess structural damage in your brain.
…
Day 4.
Brendon packs his bags. Tyler is back in bed after the testing over the last day proved what he already knew: things weren’t getting better. But he’s trying not to let that show. Brendon didn’t stare or gawp at him when he’s had the seizure and didn’t treat him differently. On the contrary, he tried to cheer Tyler up with even more stupid jokes and he got along with Josh so well that it started to make him jealous (even though he’d never admit that).
He’s happy for Brendon, really. He’s happy for him when the triumvirate – the attending plus his two interns – enters the room to talk to Brendon before they discharge him. He’s happy for him when Brendon gets told it’s not epilepsy, it’s probably related to his ADHD, and they leave him with the recommendation to see a psychiatrist and get started on a pharmaceutical to regulate the imbalance in his brain. He’s still happy for him when the doctor turns to Tyler and says “Well, Tyler, we won’t discharge you just yet, you’ve got to hang in there, okay?”
Brendon shrugs his shoulders to all of it, and waits for the EEG nurse to come and get the electrodes and glue off his scalp.
Tyler rolls on his side so he can face Brendon.
“So are you going to do it?”
“Doing what?”
“Take the pills? Whatever the doctors prescribed for your ADHD?”
Brendon shakes his head as if he could get rid of the memories inside his head.
“No man. I took pills when I was 13 until I was 14 or 15 and it freaked me out. It made me feel like a different person and it scared the shit out of me. I’m done with pills.”
He said it so naturally, like it’s self-evident. And in a way it really is. Why would you take a medication that makes you feel like a different person? Why would you take something that makes you feel so bad you don’t want to live anymore?
Except it’s not. Tyler smiles in response.
I feel you man.
…
Day 5.
With Brendon gone the room starts to feel different. There’s less life in it, less energy, less rambunctiousness. Well, he was still in the room but it’s never enough, Tyler felt. He simply doesn’t have enough life inside his body, his tired, broken body. The side-effects he got when he went on Keppra showed up in reverse now that he’s on half of the original dosage. Headaches. Intense and crazy mood swings. Horrible mood, like he’s depressed but minus any original depression. It’s the drug that dragged him down the further up he went with the dosage and it’s the drug that drags him down now that he’s reduced the dosage. No matter which direction he took he always ended up where he started: far below, below average, below the life he used to live, he used to know. Where you can simply shake your head and say “I’m done with pills man.” But it’s been so long anyway, he can’t really remember anything from his life prior to epilepsy. Curtesy of a broken body, a broken brain.
He’s never felt so alone. Josh had a long day at the store and then promised to help out a local band because their drummer got sick. And he was happy for Josh too, the fact that Josh still stuck to the music and his drums even though they haven’t played together in months. And even though it’s his favorite thing in the world to see and listen to Josh play, his focus, energy, and drive exactly what he needed to wake him out of this catatonic, comatose, all-around horrible state, he could feel something missing when Josh wasn’t around. Things became heavy again, too heavy to carry. To bear.
…
Day 6.
8 AM.
The doctors show up with his chart. Tyler is so out of it he felt like he lost the capacity to be scared or worried anymore. In some far-away corner of his mind he registers that this is a standard response for the normal person but normal standards have long since stopped to be applicable to his situation. Normal was something that forced him to see himself through other people’s eyes, a standard he would never live up to. Normal forced him to look back on his childhood and long for nostalgia so much it made his stomach hurt. Normal brought the knowledge that other people looked at him and felt glad that they could go back to their normal, illness-free lives. Normal made him feel small, and ashamed.
The attending clears his throat.
“Tyler, we want to discuss some of the conclusions we’ve come to after reviewing your medical history.”
No “How are you feeling?” Was that good or bad? Probably bad.
“We documented three episodes during the last five days. A simple-partial seizure on Tuesday and two possible auras.“
Possible. Tyler long lost the capacity to be upset about terminology in neurology. He’s seen so many we suspect and it is possible that it all made sense: The doctors doesn't have a clue.
“And with the sphenoidal electrodes inserted we could see that the seizure activity comes indeed from your left hemisphere, from the temporal lobe. The inter-ictal EEG shows intermittent focal slowing. And we also looked at the MRI…”
He had an MRI? Oh. That. His neurologist really, really wanted an MRI but the images came back normal.
“… and we found a lesion in your left hippocampus, which correlates with your EEG results and with the clinical presentation of your seizures. Right now we aren’t sure if the lesion is just a lesion or a dysplasia so for the time being we would recommend you stay on the Keppra and try a new drug called Vimpat as an add-on to control your focal seizures and surgery in the long run.”
The attending grins proudly. After all he's the one who figured it all out!
Tyler’s mouth opens. Surgery? Lesion? Dysplasia? What?
Before he can ask any further questions they stomp out of the room, leaving the medical letter and the prescription for the new drug and Keppra on his bed. He stares at the two pieces of paper, unable to make sense of it all. He can’t catch up with this new reality, this new life of they’re going to operate on my brain one day and he’s falling behind, every time he has a meeting with one of his doctors and Josh isn’t there to take notes for him. He already knows in his gut that Josh will get mad about this (like he does every time), about the doctor's lack of caring, the lack of concern. Josh will get mad, take the letter, and google the results, something that will eventually lead to a heated discussion about the liability of webMD versus a neurologist in the flesh.
But it’s the small, mundane, petty things Tyler looks forward to as the nurse comes in and rubs the electrodes and glues off his scalp. He wants to be with Josh again. He wants to argue with him, he wants to feel mad and huff in a way that makes Josh smile. And so when Josh comes to get him after he packed up his bags and took a shower - finally - it’s not just the feeling of being clean that makes him smile. It’s Josh’s hand in his, and despite the fact that he had stuffed the medical letter in the pocket of his jeans and the words weighted a ton they don't drag him down. Not with Josh by his side.