Chapter Text
Kie pored over the documents spread out on the table in front of her, an online medical glossary opened on her phone to her side, trying to make sense of what insurance wanted from her this time. Pope had already promised to go through it with her later that week, but she wanted to at least understand the gist of it before that.
They’d applied for a tilt table over half a year ago, and only now heard back. What she was reading sounded suspiciously like a roundabout rejection.
Kie gritted her teeth. It was always those damned seizures. No lighter wheelchair, no indwelling catheters, no hydrotherapy, no tilt table. Too dangerous.
Okay, for the urinary catheter she agreed, she’d seen it get dislodged and even ripped out once during a seizure firsthand, but the rest she deemed completely safe. Maybe the hydrotherapy was on the fence, but warm water generally relaxed JJ, so she was like 80% sure that it’d be fine.
JJ didn’t have classic epilepsy after all; his spasms and grand mal episodes didn’t get triggered by the situations insurance was listing. They were mostly caused during stretches and range of motion exercises, when his tense muscles were forced to loosen up and responded in an overblown manner. They barely even happened anymore these days either, now that they’d found the right medication, and it had never been anything they had to worry about while he was in the chair in the first place. Same for the tilt table. As long as they went slowly enough it shouldn’t be a problem. It hadn’t been, when they’d tried it in the clinic during that first year.
Her heart was still heavy when she thought of that time. They’d been so full of hope, initially.
After the crash, the doctors had told them to prepare for the worst. That JJ needed to survive the night first, before they could make any clearer assessments. That night turned into a week, then two, until it was finally safe enough for him to be pulled out of the medically induced coma.
Kie remembered that day like it was yesterday. JJ with his head shaved, an ugly, angry surgical scar across his skull where doctors had to cut it open to save his life. JJ hadn’t answered to the sweet nothings Kie had mumbled, but he’d held her gaze and managed a weak smile. He’d been there, present. Prepared to fight.
Moderate traumatic brain injury had been the original diagnosis. Something a follow-up surgery was supposed to patch up for the most part, and that JJ had been projected to overcome with hard work and only minor long term effects.
After that second surgery, his movements were still sluggish and he still couldn’t sit up independently, but he was reaching with purpose again. He could identify food and attempted to eat it, too. They’d been on the right track.
Back then, Kie’s biggest worry had been that JJ wasn’t following or participating in conversations. He was looking between them, brows furrowed in confusion, as if they were speaking an entirely different language. He’d still been too weak and uncoordinated to talk or point, but he couldn’t even answer yes/no questions by blinking. The doctors had put it at their highest priority to solve. Kie had thought that once they figured that out, the worst would be over.
Only a week later, the seizures had started.
Violent, incessant seizures, lasting up to fifteen minutes at a time. Only a few minutes later, the next one would begin, followed by the next, and the next, and the next.
JJ’s brain, still delicate from the initial injury and the surgeries, hadn’t stood a chance.
Another two weeks later, the seizures turned into what the doctors called dystonic storms. Kie found it hard to tell the difference between the two types of convulsions through her tears and the stained window in the door. All she knew was that he was suffering. Sometimes she still had nightmares about the desperate wails and choking noises that came from his room during that time. They had not been allowed inside.
Eventually, the wails had quieted down. The nurses kept them updated: The storms had changed into what could still be dystonia, fixed this time, but looked a lot like decerebrate posturing. They had to google what that was. They read what was associated with it. Kie’s hands didn’t stop shaking for hours afterwards. John B had to pay a $500 fine for breaking a vending machine.
With JJ now still enough for further tests and brain scans, doctors were finally able to draw the devastating verdict a few days later: Severe brain damage with evidence of multiple strokes, the latter of which were most likely caused by the seizures.
When the doctors told them that JJ would never be the same again, Kie didn’t want to believe it. Then she saw him and knew it was true.
It still took her half a year of seeing him daily, until it began to sink in. Half a year of JJ lying in bed, unmoving, staring without blinking, reacting to nothing and nobody. Body tense and head twisted to the side, hands too cramped to slip hers in them. Unresponsive to any and all therapies. Three failed surgery attempts, one successful. The muscles in JJ’s legs were looser after that. A diagnosis of fixed dystonia in the upper body instead of coma. Small wins.
JJ failed almost every cognitive test. fMRIs showed minimal brain activity, enough to receive some information, but not enough to interpret or respond to it. Neither awake nor asleep. The word vegetative was used but never confirmed. Kie rejected it entirely.
By the ninth month, the doctors’ efforts shifted from trying to achieve improvement to preserving what was left. The Pogues were told to look into wheelchairs, beds, medical equipment. They were shown how to keep JJ alive. They learned, not because they wanted to, but because there wasn’t any other choice.
They picked the model of wheelchair that the doctors suggested, because the Pogues were clueless and JJ hadn’t been able to communicate his preference. Still wasn’t, to this day.
JJ didn’t have insurance at the time, so Sarah emptied her bank account to purchase it, along with mountains of other equipment he’d need from then on. The Pogues had moved mechanically, to get everything set up. They’d each tried to appear strong for each other and forgot to comfort each other in the process.
JJ was discharged roughly a year after the crash. For the Pogues, the hospital had been some kind of limbo dream world, far removed from reality. A single building that contained all their love, hope and fears. A building they could leave behind, when it all got too much.
When they left that world for good, John B pushing JJ in his shiny new wheelchair, Kie and the others a step behind him, it had suddenly become real. Nobody had said it, but they all felt it. They weren’t leaving those raw, JJ-shaped emotions behind this time.
They were taking them with them and were about to incorporate them into every aspect of their lives. No running away. They were all committed. Terrified, but committed. P4L.
They fumbled. Made a lot of mistakes. Misinterpreted signals. Forgot steps in the routine. Sometimes it took all five of them to get JJ ready for the day. Sometimes someone broke down. Somehow they did it. Somehow they continued.
Eventually, it became easier. Normal. The trick was to look for what was there, and not for what was gone.
A loud beep shook Kie out of her memories. JJ’s feed was done. Abandoning the documents on the table, Kie quickly padded over to where she’d positioned him by the window.
JJ sat reclined in his wheelchair, his torso, arms and neck just as stiff as they’d been in the hospital five years ago. His head was always craned painfully far to the right, as if he was trying to see behind him, causing him to always press the right side of his face into the headrest, pillow, or whatever else he was resting on. No matter what they tried, they couldn’t get those muscles to loosen up like his legs had.
“Hey Jayj,” she smiled, combing her fingers through his hair. The mess of surgical scars was hidden under his curls now, as if nothing had happened. If she was looking for them, she could still make them out as faint bumps under her fingertips. “How are you doing?”
Kie searched his expression and body for any signs of discomfort, but as usual, she couldn’t find any. He never gave any hints about how, or if, he was feeling. Occasionally they could predict a seizure coming up by spotting slight tremors running through his feet, or a flutter of his eyelids, but other than that it was anybody’s guess.
Well, sometimes Pope could “feel it in the air” as he called it, but that was his sixth sense as a medical student talking. The rest of the Pogues had to work with their regular civilian skills.
Today there’d been none of those tells, so Kie had been able to hook JJ up to his dinner, blended steak and vegetables infused with his 6pm dose of medication, fed to him directly through a stoma in his stomach, without having to worry about it setting any seizures off.
Still, key was to not overwhelm his body. For JJ, typically one meal took almost two hours to finish, so Kie always set him up with soft music playing and a mood light on, casting soft, colorful shadows onto the wall, close enough to her to see him if anything was to go wrong, but far enough to not smother him.
They knew from various tests that JJ was almost certainly blind, but some of the scans had suggested that he might be able to recognize changes in light and shadow on a good day, so Kie liked to use his dinner time to give him some visual entertainment. She wasn’t sure if he could pick up on how the light morphed into different colors every few minutes, but she figured it couldn’t hurt. In the worst case, she’d just enjoy that function on her own.
After making quick work of removing the feeding tube and cleaning JJ up around the stoma, Kie discarded the used materials. Every time she threw away another full bag of single use plastics, gloves or wrappers for all kinds of JJ’s equipment, she had to grin at how much JJ would tease her for this. It would certainly be a bit hypocritical of her to attend any “ban single use plastics” marches these days.
Perhaps she could scribble an “except for medical purposes” disclaimer under it. Maybe the Pogues could go all together, trailing at the end of the crowd where it wasn’t so loud. It could be fun. She’d have to look up if there were any planned in the summer – and if the route was accessible.
Back at JJ’s side, Kie decided to forget about insurance for today, and enjoy some JJ time instead. He needed to get out of his chair anyway.
It had taken them a while to find the right sling for the Hoyer lift. Traditional ones didn’t offer enough support for JJ’s ramrod straight back, and in the end the boys had reinforced a padded one to fit JJ’s needs better. It worked like a charm.
When she had him situated on the bed, she took a moment to check with her fingers if he needed a change. Any type of movement in his torso tended to set off his bladder. Not full on, but in small releases. They weren’t bad on their own, that’s what the briefs were for, but they could add up quickly on days with lots of posture changes or during walks.
Right now though, JJ was still good, having been freshly changed only a couple hours ago, before his dinner.
With the remote control that was tugged away between the mattress and the guard rail, she raised up the upper section of the bed so that JJ wasn’t lying completely flat.
Before joining him for her favorite part of the day, she switched the playlist to something instrumental and grabbed herself a glass of water from the kitchen along with her e-reader. Another thing she’d changed up for JJ – reading while cuddling with him was a lot easier when she didn’t need to physically turn the page every few minutes.
Having gathered everything she needed, Kie crawled onto the bed and under the blanket to lie down next to JJ. With how tense his muscles were, it was always a challenge to adjust his posture, but for this part of their evening routine, she had it all figured out.
Kie draped a careful arm around him and gently pulled him towards her, so that the right side of his upper body leaned half against her chest. His other side was cradled by her arm and a good amount of strategically placed pillows.
His head, stiffly turned towards her, came to rest on the crook of her shoulder. It was imperative to make sure he truly leaned on her with all of his weight, because if the angle was off and his head was left unsupported, it’d be just the dystonia in his neck holding it up on its own. That would put an enormous strain on the already battered area, the opposite of what Kie was trying to achieve. Double checking was a must.
With her free hand she made sure to position his cramped arms the best she could. The left was good on his side, the right lay on her own hip and thigh. The way his fists were bent and rotated outwards always made it a bit difficult to place them in a way that wouldn’t put even more stress on his muscles, but when they cozied up like this, it was somehow never a problem. Their bodies slotted together perfectly.
JJ’s curls tickled her chin with every shallow breath he took, exactly how she liked it. It allowed her to feel life and movement in him, his heartbeat and the heat of his skin.
When she was sure she had him positioned as comfortably as possible, she one-handedly selected the book she’d recently started. It was an abstract, modern day theater retelling of The Little Mermaid, recommended by Sarah. It’s been a wild ride, but Kie’s been enjoying it so far.
She was sure JJ before the crash wouldn’t have given a flying fuck about the plot of this book, but Kie still read out loud to him, just to share. Maybe JJ after the crash appreciated it in his own way. Maybe he found comfort in her voice, or in the way her fingers traced lazy patterns onto his skin. She hoped he did.
JJ had stopped smelling like salt and water a long time ago. It was all antiseptics now, mixed with a bit of the essential oils she liked to put on him to stimulate his senses. Still, Kie loved to breathe in his scent. Breathe in JJ.
No matter where or how, JJ would always be her happy place.