#Hopefully this helps someone out there | Explore Tumblr Posts and Blogs

stevebabey · 1 year

Text

not if it’s you.

word count: 7k summary: After the events at Starcourt Mall, you have a hard time convincing Steve that he’s allowed to be not okay. You want to take care of him. And if you harbour some more-than-friends feelings at the same time? Well, that’s nobody’s business but yours. [angst + hurt/comfort + friends to lovers]

You’re bone-deep tired.

The red and blue lights of the ambulance feel branded onto the inside of your eyelids, there even when your tired eyes slide shut. The cool metal on the ambulance door soothes your forehead and for a moment, head tilted against it, you could honestly just sleep even with all the noise.

It’s been a hell of a night.

You blink. You need to keep yourself awake, you’re not home yet. Gazing blankly across the crowded parking lot, reporters and townspeople milling between the yellow police tape, you can feel your brain begin to try to grapple with all the events of the night.

It’s like some warped horror flick of memories, parts of the film blacked out that you can’t quite recall. The elevator, the Russians, and some god-awful melted monster of people — even in your mind the image makes you shudder.

The longer you think about it, the more it feels like the stress is fusing with your bones, attaching itself to every cell in your body. It makes you shake, a forceful twitch of your head to put all the thoughts to rest.

Process it later. Make sure you can stay stitched together physically tonight. You must look a tad loony from the outside, twitching and shaking, but considering your night it’s more than warranted.

The gash on your arm is the worst of your injuries. A jagged stretch of torn skin that was gifted by one of the Russian soldiers who had hoped it would loosen your tongue. And when that didn’t work, the pliers nearly had — you would’ve told them anything when they took them out and lined it up with one of your fingernails.

But Steve then had done something stupid — kicked to get a guard’s attention since his yelling obviously hadn’t made a difference, let one of them lean down real close, and then headbutted him with all his might.

Relief had shocked your system, some broken cry as you slumped over when the pliers moved away. Fingers saved, if only briefly.

It had all turned to dread when they had lugged him out of his chair, preparing for round two of questioning. You had felt it then, a twisted gurgle of emotion lurched up your throat — violent enough it might have made you sick if you had managed to open your mouth. You hadn’t. There was a chance you would’ve said something worse, some jumble of feelings that wouldn’t have helped.

So, you had bit your tongue. Tasted blood and pretended that closing your eyes meant you couldn’t hear Steve pleading in the room over.

He hasn’t said much since the two of you had been sat in the back of the ambulance, gloved hands of the paramedics roaming over skin to find and treat injuries. There’s just one guy left now, still hovering around Steve with a flashlight and treating him with much less care than you’d like.

Steve looks as tired as you feel and when he can’t focus enough to look ahead, the paramedic prods his cheek unkindly. Steve winces.

“Hey,” you snip, cutting into the interaction. “Are you done? Can we go home?”

The paramedic turns the flashlight on you, blinding you for a moment. It confirms your asshole hypothesis of his character and you cringe at the brightness. It’s gone in the next moment, finally clicked off. He observes you both for another moment before an annoyed drawl comes out.

“Yeah, scram. But first you,” He jabs a finger at Steve who blinks but doesn’t react. “Lots of rest. No big brain work, no alcohol, and don’t run any marathons or anything.”

Steve nods, then grimaces at the pain the movement causes. You can’t help the wrinkle in your brow as you watch - you startle a bit when the paramedic turns his pointed finger on you.

“And you. His pupils are still dilated so keep an eye for seizure symptoms. Wake him every couple of hours and get a CT scan tomorrow.”

Some part of you is perturbed that he’s put you in charge of taking care of Steve. Another part gleans and blushes because you’d accepted the task the moment he’d asked, without question.

“Tomorrow?” You ask hotly, at the same time Steve says, “I’ll be fine on my own.”

The paramedic shakes his head, tsking as if you’re bothersome school-children not patients, and steps back with his hands raised. “Figure it out, I don’t care. I’ve got a dozen other people to check over.”

He winds around the door of the ambulance and leaves the both of you alone. A cool wind skirts through the parking lot, ruffling your hair. A sigh wrestles out your chest, a pathetic attempt to alleviate the tightness in your chest.

You don’t think you’ve ever hated the colours blue and red more than right now. The blazing colours atop police cars that flood the parking lot, the colours of Steve’s Scoops uniform, the colour of blood seeping into your pale blue shirt.

If you squint, you can see your own car parked alongside Steve’s in the distance — it feels like a lifetime ago when you had driven in and parked up. Your keys are lost down, down below you, taken in the interrogation. You stand to shake off that train of thought.

You turn back and offer your hand out to Steve. After all the blows he’s taken tonight, you desperately want to offer him kindness. Offer him a touch that doesn’t hurt, doesn’t make him flinch or wince. Steve stares at your hand for a long moment, eyes contemplating — and then puts his in yours.

He lets you pull him to his feet.

One of the police cruisers takes you to Loch Nora, Steve and you tucked away in the backseat. His hand is still in yours, barely holding it in his tiredness; when the car rounds a corner though, you can feel his fingers clench tighter so your hand doesn’t slip away.

They detach eventually when the wheels roll up on the curb outside Steve’s house, late in the night. Like the rest of the sleeping houses, the lights are all off. There are no cars in the driveway. The loneliness of it yawns out down the drive, like visible smoke plumes that escape every window.

Steve somehow looks tenser at seeing it; he still forces himself out of the car, bloody sneakers scraping against the gravel. You follow. It aches to move too much, even just shuffling out of the car feels like moving a mountain. The door clips closed quietly behind you. You hear the engine fade back down the road.

Steve is still stuck in place — you have a feeling he’s not looking at the house at all but stuck in thought, looking through the timber and paint and seeing all the horrors of the night. You step up beside him and gingerly reattach your hands.

It seems to surprise him, jumping ever so slightly at the touch and turning to look at you. “I didn’t...”

I didn’t think you’d stay. The sentence dies in his throat, a little embarrassed by how relieved he is that you’ve stayed with him - so much it shows in the quiver in his voice. Steve doesn’t finish it because then you’ll hear the other part of the sentence, even without him saying it. No one stays.

“C’mon,” you urge him to walk with you, beginning to drift up the driveway.

There’s no rush, you’ll wait as long as he needs to before moving, but it’s colder out tonight. Maybe it just feels that way with all your tiredness, the frostiness nipping at your skin. All your energy is focused on staying on your feet, on helping Steve. There’s none left to keep you warm.

He ambles after you like walking is an afterthought and following you is the priority. His sneakers drag, soft scraping noises with every step. You can feel his gaze burning into the back of your head, his fingers squeezing as if he’s checking you’re really still here with him.

The front door is unlocked and it’s only when it snicks shut behind you, do you wonder if you’ve overstepped. It’s awkward, but only a bit. You’ve been in Steve’s house before — though, who hadn’t with all his parties in sophomore year?

But not quite like this. Not just the two of you, and never holding his hand.

The events that had transpired last fall in Hawkins had thrown Steve into your life, along with a dizzying revelation of new dimensions and an unsettling truth about monsters that came right out of your nightmares.

Though, maybe it made more sense to say you were thrown into Steve’s life. You had always known of him - he couldn’t say the same about you.

Like the hoards, freshmen you had not been immune to the boyishly good looks and charismatic nature of Steve Harrington. Once upon a time, before someone called him King Steve and it stuck, there had been a crush.

But like red wine on white linen, with time — and plenty of distance — it had faded.

Not even the adventure that bound you two together, the tunnels that snaked beneath Hawkins and your shaky hands lugging him into the car, had been enough to reignite old affections. Not his insistence on you leaving the tunnels first, not even the way he clutched you when you all made it out. Not unscathed, but alive.

Pitifully, it had been his shoddy attempts at flirting in his ridiculous sailor uniform to kick-start your heart back up.

You had sighed, chin in hand, and leaned into the foolish feelings — because going crazy over a boy felt the most normal thing you could do. And after demodogs and slithering vines kept creeping from the past into your slumbers, normal was all you wanted.

But Steve needed you as a friend, more so considering his fallout with Tommy H and Carol had become permanent. He flirted with customers, every girl you’d recognised from your year, but never you.

It felt a good enough reason to bite your tongue. Keep him close, but never as close as you’d like.

But now you’ve done it again — been pulled along on another adventure that’s brimming with terrors that will take years to forget.

Everything feels worse this time round, a decay that ebbs away your hope. It’s somehow harder to heal from wounds that come from evil, but not the supernatural. It’s all the heavier when the boy who holds your heart made himself a punching bag so you didn’t get hurt.

The warmth of his hand, squeezing for only a moment, brings you back to the present. To now, still standing in the entryway to Steve’s house. You blink, coming back to yourself, and turn back to him. There’s a crinkle between his brow, and worry washed across his features.

“Are you okay?” He asks it tentatively like he’s afraid to spook you. It sends a rush to your system, a pleasant throb in your chest. You can’t deny you like knowing he worries. That he cares.

“Yeah,” you croak out, nodding as you speak. “Do you— I mean, you don’t mind me staying, do you?”

Suddenly, the potential embarrassment of inviting yourself in, even with the good intentions of taking care of Steve, is overwhelming. The next words tumble out without thought.

“I just, I don’t want to be alone right now.” It’s a bit hurried, tinged with nervousness. You stammer. “And I don’t want you to be alone right now.”

Something like pure affection blooms in Steve’s chest at your words, the heat of it stealing his breath and pain for just a moment. It’s a different sort of ache in between his ribs, something white-hot and pure.

He hadn’t been able to voice his relief when you’d gotten out of the car and stayed with him — and it fails him now at your admittance.

You don’t want to be alone. You don’t want him to be alone.

Steve doesn’t think he’s deserving of your good will, nor the kindness in every touch. He can’t help how he consumes it greedily, drinks in the touches like he knows it’ll be taken from him soon enough. His eyes stay fixed on you.

There’s something so alluring about your silhouette, the golden street light let in through slits in the door. It halos you, soft amber that softens every curve. You’re enchanting, even when bloodied.

Steve’s not sure his heart has felt like this before — so molten hot, valves working overtime, ribbons of affection tied tight across his chest. He’s sure they’ll leave scorch marks, testimonies to his bleeding heart that pulses with each beat for you, for you, for you.

Because you’re still here and something in his trodden on heart perks up before he remembers to crush it. It’s not that Steve has never thought of you as more — god, the mere thought of you as more to him.

More than a friend, more than this, it’s enough to make his head spin. To make his hands shake and return a nervousness to his system he hasn’t felt since sophomore year when he first laid eyes on Nancy Wheeler.

But you’re not Nancy. In the best way, that makes all the difference,

You were some breath of fresh air, bursting into his life in all the middle of his estranged drawn out break-up with Nancy — brash in all the right ways, kind when he needed, and far too soft to be tangled up in any of this mess.

You’re still too soft for it now, and it shows in the jagged cut torn into the fabric of your skin — it doesn’t matter how it happened, Steve still feels like it’s his fault. It’ll scar, red puckered skin that twists down the expanse of your shoulder. A living reminder of the night burned into you to carry forever.

It hurts Steve maybe more than he’s warranted to. You’re both just friends.

But when Steve thinks of how he’s accidentally pulled you too close, put you first in the heart, it aches evermore.

He’s not sure when you went from barely a friend to this — you’re a crush, an Achilles heel, the unattainable from the moment he met you, the moment he knew you. Steve feels like he’s been building himself towards you, pushing his growth to aim for anywhere near enough for you. You’ve been too good for him from the start.

It doesn’t stop him from loving you.

Steve realises after a moment that he hasn’t said anything when your fingers start to slip from his. His grip tightens to keep your hand in his.

“No, I— Stay. I...” It’s a struggle to say it, too many years of suppressing any urge to ask for comfort. “I don’t want to be alone, either. Or for you to be. Stay.”

Your lips, chapped and still with a hint of blood, twitch into somewhat a smile. “Okay.”

This time it’s Steve who drags you along, both slowly moving up the stairs. Each step threatens to reopen the scabs that have only just begun to form. It’s like some micro-dose of torture, Steve thinks, hearing your winces behind him.

The fluorescence of the bathroom lights is bright enough to make your eyes fly shut. Steve’s braver, taking only a moment to pause. He ignores how the lights dance, a sickening comparison to his experience with the drugs that had barely left his system. Though it’s the last thing he wants, Steve drops your hand to begin his search.

When your eyes blink open, prepared to face the lights, you’re a bit perplexed to see Steve hunting through the linen cupboard. He produces a towel, white and fluffy.

You cringe internally at the thought of sullying the pale colour with blood but it’s but a blip in tonight’s problems. Besides, the Harrington’s could certainly afford to replace it.

“Here.” Steve murmurs. You both seem to have agreed to keep softly spoken for the night.

He presses the cotton into your hands as he walks, ready to shoulder out and take care of himself. There was an en-suite in his own room — and sure, it would hurt like hell rinsing his wounds but he’d done it last year. Blasted the heat so he was wincing at the burn atop his skin and not the ache underneath it.

“Steve?” You question, turning and halting his feet. He pauses, confused by the questioning expression on your face. He gestures to the shower, hiding how the movement makes his ribs sting painfully.

“You can shower here and- and the guest room’s all made up.” The words trip a bit on the way out, weakness beginning to weigh on his voice.

Somehow being back home crumbles his walls sooner than he’d like. Tonight has been heavy, a burden that lies thick on his shoulders and creeps down, taking root in his muscles.

But Steve will do what he had done last year; take the punches, burn them off in the heat of the shower — hot enough that he can’t feel any tears — and then deal with it.

“No, s’not that.” You shake your head, a strand of hair coming loose. “I... What about you?”

What about all the blood? The bruises and cuts? You’d seen the scars littered on the skin of his face from Billy, cuts that had healed wrong and left marred skin. Wounds left uncared for, only healed with time.

The question only begs more confusion from Steve. He gestures to somewhere behind him as he says, “There’s another shower, don’t worry.”

He pulls a smile to ease you. It wobbles at the ends of his mouth. Something claws into your heart, a profound heartache at the thought it doesn’t even occur to Steve to take care of himself.

“Steve,” you begin, beginning to get a sense of the wall you’re encountering.

Steve Harrington has some very thick defenses and not without good reason; they’ve got him through some treacherous times. Even now, he uses it like a crutch, a seal to hide away horrid memories. Ignored in favour of temporary strength.

You don’t need his display of strength — you’re not one of the kids that needs to be shielded from the reality that even Steve has a breaking point — certainly not when his state is far worse than your own.

But you have a feeling he doesn’t know how to switch it off. Steve doesn’t seem to understand what you mean when you say you don’t want him to be alone.

“Steve, you’re not okay.”

“I’m- I’ve done this before, alright?” He insists, eyes darting between yours, features turning stonier. You can see his defensiveness begin to curl his shoulders in. “I’m alright, I promise.”

“Are you?” You say, not unkind. “Tonight was— Steve, you were tortured.”

The effect of your words is instantaneous. Steve’s face falters, his icy expression dissolving with a shudder he can’t stop. You watch it warp him painfully, jaw clenching and eyes misty; he blinks furiously to clear them. You continue.

“You can’t just- just bounce back from that. Nobody can.” You shake your head as if it proves your point. “It doesn’t matter if you’ve done this before, this— this is a lot for anyone, even—”

“Well then, why are you still here, huh!” His words interrupt your own, tone angrier than you’re expecting. “If this is so much!”

His chest rises and falls quickly, brows draw together like it hurts to breathe so harshly. The words don’t sting, but his tone does. You reel in your hurt and focus past his anger, focus on what it really is.

A final line of defense. A ploy to make you upset or angry, to make you emotional enough to storm out and leave him to lick his wounds alone. Another way to ignore it, compartmentalize what happened instead of facing it head on.

Maybe it’s cruel of you to make him deal with it so soon. But you care, too much to pretend to ignore his pain.

“Steve.”

“Don’t.” It wobbles, voice weak. His anger has already drained away in a moment.

“You’re not alright,” you insist, voice barely above a whisper. “C’mere.”

You don’t give him a choice, your free hand reaching out to snag his own, which hangs loose at his side.

Steve stumbles forward as you tug him back into the bathroom. Without his anger, he’s pliant and goes without protest. Your gentle fingers on his chest nudge him in the direction of the sink, the cool porcelain pressing through the back of his soiled Scoops top.

“Can you do something for me? Can you...” You bite your already bloody lip, nervousness sketched across your features.

How can you say this without giving too much away? It feels too intimate, like flying too close to the sun, well within the realm of potentially hurting your own feelings. You’ll do it for him gladly.

“Can you just...let me take care of you?”

It hurts like a sucker punch to the gut. Like a breath has been forced out of his chest, because when was the last time someone has asked him that?

Silence stains the air.

“It won’t be pretty.” He croaks finally, still giving you an easy out. Still prepared to spare you the ugliness of his emotions.

“Doesn’t matter to me,” You respond, lips twitching. You bare your heart and half hope he sees it — sees it and knows he’s loved when you say, “Not if it’s you.”

Another beat of quiet.

“Okay.” Steve breathes, so faintly you barely hear it. Then as if you’ll rescind the offer any moment, he nods fervently.

Your smile is genuine, maybe the first in hours and something in you relaxes. He won’t fight you on this. He may have taken the beating earlier for you but, at the very least, you can do your best to patch him back up — let your hidden feelings translate into a gentleness he so very deserves.

It takes only a quick rummage beneath the sink to find a first-aid kit. It feels wildly underprepared; an afterthought purchase once upon a time that was only ever intended for scraped knees. It hasn’t ever been opened. The tear of the zipper is the only noise in the bathroom, bouncing off the tiles.

As expected, there’s not much in it. It contains a box of plasters in multiple sizes, one roll of gauze, a bottle of antiseptic, and a mixture of other pills and eye drops.

Some loose safety pins rattle around in the bottom as you take inventory. It’s not stellar and you’re no doctor, but it’ll do. It has to do.

When you finally look up, wondering where to begin on his injuries, Steve is regarding you with a look you can’t quite name.

If you were sure of yourself, you might call it awe.

You tell yourself it’s because you’re here, helping him, and it can be awfully easy to mix up feelings when you’re getting stitched up. You don’t let your hopes rise, not even for a moment.

Steve’s blood sings, ears rushing with the sound of it when you step closer. You’re so damn close. Steve can’t ignore the scent that carries with you, his brain involuntarily committing each detail of you that he can get to memory - lest he never gets you this close again.

You want to take care of him; Steve thinks this might be a dream.

Nimble fingers work to gather some cotton with antiseptic and then you’re holding it up, posed, and ready to mend.

“Can you sit up on the counter?” You ask, all sweetness. Steve obliges easily, despite the protests from his sore body that cries out as he shifts up. You smile, then warn, “This might sting.”

It’s overwhelming as you step closer, between his legs, and take the cotton to his face with a gentleness Steve hasn’t felt in years. His eyes close instinctively.

It does sting. The wince leaks out through his clenched teeth, soothed instantly by your soft apologies that pour out like honey.

For a moment, it’s easier this way; with his eyes closed, Steve can pretend this is usual. That when he gets roughed around, there’s someone to tend and clean his wounds — instead of just himself and the harsh rinse of the hot shower.

He tries and fails not to think of last year, his poor attempts to patch himself up. Hands too shaky, touch too rough.

The memory bites. The injuries of tonight somehow feel worse. A tinge of bile taints his mouth and Steve swallows it back down, concentrating on you.

You’re not quite humming but soothing noises, low and soft, come from your throat. Steve’s not even sure you know you’re doing it. His hands clench emptily as his side — the split knuckles make them hurt and when you’re this close, the itch to hold you is near unbearable.

It doesn’t take long for the first cotton pad to turn a violent shade of pink. Steve’s face looks a tad clearer than before but uncovering old blood means finding new wounds.

Your stomach burns pitifully as you take them all in. There are too many to count, a thousand different hues — broken blood vessels that run in all directions, little labyrinths under his skin.

Why does it hurt so much? Even with your bound shoulder that still sends out pain with every motion, it all dulls away when you look at Steve. Lashes fluttering, eyes still closed, marred with wounds you’re begging to ease. You know it hurts so much because you care.

Love is pain, you suppose, with only a twinge of bitterness. It’s swallowed instantly, consumed and disintegrated by the fact you get this. The boy you love, between both palms, trusting you to take care of him.

A year ago, you’d met only the steely exterior he’d put up — and thought it had simply been remnants of King Steve. Maybe Steve Harrington was as much of an asshole as half the town said.

He was all bite, glowers, and clipped answers. With time though, he’d softened like snow melting in the sun; all the parts of him trickling into your life until he was cemented by your side.

He hadn’t even let you patch him up after the scrap with Billy that had taken him out. You hadn’t felt you could ask.

But this time...your throat grows a bit thicker at the trust that binds the pair of you. Affection rushes your system and forces a sharp inhale from your lungs. You step back.

The space makes it easier to breathe. Dials down the chances of pressing your lips against his skin — if only to give him a mark born of love. Hands searching through the first-aid kit again, you produce some painkillers and locate an arnica pill.

You give yourself one more moment; inhale and withhold the tidal wave of devotion that begs to spill from within you.

“Take these, please.” You say quietly, uncurling one of his fists to press the pills into. He swallows them dry.

You prep more cotton and begin again with the gentle touches, coaxing off dried blood. This time, Steve’s eyes stay open. He watches you, an unreadable emotion in his eyes.

You work away the blood from a cut above his eyebrow and when it’s clean, your thumb follows. You caress along the broken skin as if you could meld it back together with pure will.

Steve’s chest grows tight. Something about you being here, taking care of him makes the night’s memories all too present. Nausea sways in his gut. It’s impossible to shove them to the back, to press them down, when it feels like each cut is being reopened. Cleansed with a douse of love.

You’re altering the history of each wound but to do so, he has to recall how each of them was carved into his skin. It hurts. Why are you still here?

Steve’s head pulls back unexpectedly, eyes shuttering closed in a scrunched expression. You startle a bit.

“Shit, I’m sorry — too harsh?”

He makes a strained noise, effectively gutting you with it. If you weren’t so close — an inch further and you could press your forehead to his — you wouldn’t hear it. Hear the tiny whisper that scratches out the word, “Why?”

“What?” You whisper. You don’t understand.

“Why...Why are you...?” He’s clearly struggling to find the words he wants. His hand reaches up, fingers brushing the bridge of his nose before he drops it again. His chin quivers. It stops your heart for a moment to realise he’s crying.

“I don’t— I don’t understand.” Steve grinds the words out, voice thick. A tear splatters, seeping into the blue of his uniform. He won’t look at you, eyes trained on the loose thread on his shorts.

“Steve?” you murmur, wary and heavy with concern. This is— you don’t know what this is.

“I don’t understand.” He repeats, shaking his head slightly. He seems to choke on the next words. “You’re still here. Why are you...? Everybody...”

He trails off, some whimper of sorts forcing its way out his throat. You’re stuck, absorbing each of his words and putting together the pattern that Steve can’t seem to voice. I don’t understand. You’re still here. Why are you...? Everybody... Everybody leaves.

Oh.

Rich King Steve who’s got it all. The house, the car, and any girl he fancies, all of them fawning for a look from him at one of his legendary parties.

His lack of parental supervision had been lusted over in high school, furious whispers of envy over the fact he could get away with parties every weekend. That booze went missing and he never seemed to catch any shit for it. It occurs to you now that nobody was around to notice.

The absence in his life is vast and suddenly blindingly obvious — a chasm in his chest that is bleeding all his secrets to you.

Steve Harrington is lonely.

When you surge forward, injuries be damned, and your arms loop around his neck, there’s a moment of stillness. You can feel the tension in his muscles, hear his ragged inhale, and then— he sags into you, finally, finally letting himself lean on someone else.

His arms wind around your middle in a desperate motion, tugging you closer and the fabric of your shirt clenches between his fingers. His face buries in your neck and hot wet tears soak the collar of your shirt. You can hear his raspy noises, soft cries as he clings to you like a lifeline.

“Why did this happen to me?”

It fucking hurts to hear. You don’t know how to tell him there’s no why — that there is no reason that can justify why he’s gone through this much suffering. Just the bitter fact that, sometimes, bad things happen to good people.

“Steve,” you feel like you’re saying his name an awful lot tonight. You say it because you can’t begin to think of how to answer his heartbreaking question. “I—“

“I-I used to think,” The words are muffled into your neck. His grip on you is nearly tight enough to hurt but you don’t dare relent any space. His voice is barely above a whisper, just loud enough to hear. “That- that it was like karma, yanno?”

“Steve, no,” you whisper, horrified. If he hears you, he doesn’t show.

“B-Because that first time,” He’s stuck on some belittling ramble about himself, continuing between his sniffs. “I definitely deserved it. But then I grew and I changed.”

Something twists painfully in your stomach.

“And then last year, it made sense, yeah? Billy, he was— a real piece of work.” He sniffs again, his voice a little harder at the mention of the deceased.

The tension falls away at the next sentence, voice wobbling through the thickness in his throat. “And I used to be like that, so—“

You pull back instantly, hands shifting back from around his neck. It effectively halts him, and whatever he was saying dies in his throat. Your hands move to cradle his jaw and, as lightly as you can with his injuries, you tug him from his hiding place and stare him in the face.

Steve’s eyes look bigger and browner full of tears. His nose is red, just the tip, and runs messily at the onslaught of tears. Pink splotches bloom underneath his cheeks, patchy and warm, his face etched in complete misery.

It wrecks you to see. More so to think he’s been shouldering all this alone since ‘83.

“People don’t deserve suffering, Steve.” You state it strongly enough that he can’t refute the truth, punctuating with your thumbs on either cheek, pressing light touches.

“You don’t deserve suffering. You never did.” Your voice quivers a bit, some shred of your heart shriveling pathetically at the fact you even need to tell him this. Your hands shake ever-so-slightly. A hot tear streaks down your cheek.

Steve crumbles. You don’t resist when he drops his head down, only move back in— offering a place to hide away again. You let him stay hidden away, a sanctuary in your arms, safe when he’s buried in the curve of your neck.

“And- and just ‘cause,” you say, sniffling a bit now. He holds his breath, a sharp inhale that quietens his whimpering crying. “Just ‘cause no one has stayed before doesn’t mean you don’t deserve this, Steve.”

His fingers press harsher into your back and your feet stumble a bit, pulled off balance. Adjusting your arms, you pull him tighter yet, hoping that the closeness will make all your sentiments seep in. Your shoulder aches terribly; you don’t dare move away.

“You know that, right?” You whisper, unable to stop your fingers from grazing the nape of his neck softly. “You deserve to be taken care of.”

A soft kiss to the side of his head, barely noticeable between his shakes, but it eases the strain on your heart. Time wanes and melts beneath the glow of the bathroom lights, an unending amount of tears that you suspect reach back further than just the memories of tonight.

You stay like this, holding him close. You give him all the time he needs, sweet nothings mumbled until he feels strong enough to face you— to face the world.

Eventually, Steve’s breathing slows, crying turning to trembling gasps. When he finally does retreat, you curse internally because of course, only Steve Harrington can still look devastatingly beautiful after crying.

Tears cling to his lashes, sparkling reflections. He wipes his nose on the back of his hand.

Silence ebbs. Steve gathers himself, another sniff, and wipes his nose before he lifts his head. You can see in his face the moment he’s about to apologise; the word sorry is about to come tripping out his mouth. You beat him to it.

“I’m sorry to inspire more tears,” Your voice, still quiet, aims for a comforting jest. “But I’m not quite done cleaning you up.”

You twist the cotton between your fingers to show him. Steve blinks, eyes focusing on your hand, perhaps surprised you’re still taking care of him. He forgets about his needless apologies.

“Though, your tears did a lot of the work.” You say cheekily, a smile teasing at the edges of your lips. It makes him huff a laugh. Steve could nearly cry again; you’re so nice. He thinks about the last time cried, thinks about Tommy’s sneer, his scoffed words that told him toughen up, King Steve.

He lets you wipe them away, clear his face and patch it up as best you can. Any tension from before, the mental barb-wire defenses he had still held up to keep you out, has ebbed away. It’s softer now, easier between you two.

Trust flows from Steve in the form of his allowance, letting you fuss. It flows from you in the form of your touch, which still dances too close for just friends. You let your fingers dot the kisses across his face since you can’t.

“You’re good at this,” Steve murmurs, breaking the silence. He allows himself the privilege of your touch, his fingers burning where they graze your sides.

Patching people up? Injuries from last year made sure you got decent practice on yourself. You’re decent, you’ll admit.

Maybe he means taking care of him. You’re proving to be very good at that.

You want to. Somewhere rooted in feelings that sway closer to love, genuine love, is the urge to be the one who does it. The shoulder to cry on, the one who carries his woes when it gets too much — and you want him to do the same for you. Achingly, you want to take care of him; and him, you.

The thought burns so viciously through your chest, you sink your teeth into your bottom lip a bit meanly. It stings.

You don’t notice it, trying to rein in your drifting heart that sings to be closer to him, but Steve does. His fingers twitch; he wants to rescue it, pull it from your harsh grip with his thumb.

He does.

You stop moving.

His thumb is calloused, a bit rough against the supple plumpness of your bottom lip. The blood beneath it tingles, gloriously hot at the attention. Either all the air in the room has been sucked out or you’ve stopped breathing.

You’d hazard a guess it’s the second, given the stillness your body has taken on. Muscles locked, eyes frozen on his face — the only part of you that moves is your heart, thundering pumps going far too fast.

Steve’s gaze stays on his thumb on your lip. You’re desperate to find out what to call the emotion swimming in his eyes.

“Steve?” you say his name yet again, lips moving against his thumb. He blinks like a frog, one eye after the other, and drags his gaze up to your eyes.

His hand shifts, brushing across your mouth to hold the side of your jaw, cupping it sweetly. The cotton falls from your grip as Steve urges you closer with a gentle tug.

Then his eyes are back on your lips and even though it feels like slicing your own heart open to do it, you speak before he can kiss you.

“Please don’t,” you whisper, eyes crushing closed.

You want to terribly. The want for his kiss warbles from deep within you, a yawning ache. But it might just finish you off if it’s all heat of the moment — a kiss that is just some twisted thank-you because Steve isn’t used to being taken care of.

You clear your throat, swallowing heavily. “Not— not if it’s just for tonight. Not just because I stayed, please.”

There’s a pause. His shaky exhale breezes across your face. It’s possible your ears might be ringing as if straining to hear the sound of Steve’s heart— dying for a clue to what he’s feeling. You’re not brave enough to open your eyes and read it in his face.

His thumb scrapes across your bottom lip again and then— then, he kisses you, impossibly tender.

The tiny gasp that escapes you is consumed instantly, swallowed up by Steve’s kiss. He kisses gentle, touch so soft that it has you searching for more the moment you’ve got a taste of it.

You barely get a moment to lean into it, to kiss him back before Steve breaks it. He hovers close, close enough that you could steal another taste of his lips if you wanted. You want to— the ferocity of your eagerness sends a shiver along your spine. He speaks before you seize the opportunity.

“I want to.” He says, voice a bit raspy and the words inspire enough bravery to look at him, eyes creasing open. “I- I’ve wanted to for a while.”

You nearly sink in your relief, knees trembling for a moment as your hand comes up to enclose the wrist of the hand that holds your face. Thumb sweeping short strokes, you clutch the tan skin and lean into his caress.

“You mean it?” You whisper, far too excited. Your heart may as well be on your sleeve, cards once played close to your chest now splayed on the table. Your tone reveals all, spilling with hope, even as you ask whether it means the same to him as it does to you.

Yes. The word seems stuck in his throat, suddenly too thick to speak. Because it’s only three letters and that can’t possibly cover what Steve means when he says I’ve wanted to for a while.

That you’d somehow snuck into his life and intertwined among all of his heartstrings, like spun gold mixing until the whole organ felt terribly tangled in a way he’d never want to change.

Nancy had given him the thump of his head.

But you? You were the thump on his heart. Not a push for change, nor for growth — but permission to grant himself a second chance in love.

“I mean it.” He says, emotion coating each word. “Yes, god, I really mean it.”

And you let him tell you over and over again with his mouth pressed to yours, searing kisses that make your head dizzy and pulse speed.

Steve knows he’s not alright — not physically or mentally after what he’s faced tonight, not with the vice grip on his chest that had clung tightly and all the ugly parts of him had all slithered out for you to see.

He also knows that he will be alright, sometime in the far future.

When wounds have healed, when scars are beginning to fade, and the nightmares start being every couple of nights, instead of every night, then he’ll be nearly okay. It’ll take time, lots of it.

But when your gentle hands coax him to bed and you slip beneath the covers beside him, leaving a warm quick kiss upon his shoulder — Steve thinks that, maybe, that future isn’t nearly as far away as it seems.

Your hand finds his under the sheets, twisting your fingers together to act like an anchor in the inkiness of the night.

There are no nightmares that night.

—

tags below! @hawkinsindiana @harringtonbf @spideystevie look technically there’s no tags this is just all da bitches i’m always talking to <3

#if anyone talks to me about tenses i'll come out SWINGING #not even grammarly could help me w that <3 #hopefully HOPEFULLY this is considered in character steve #in any case i spent a wee while puzzling interactions & reactions so at least u know i tried !#its hard to pick a relationship dynamic that would work for him being surprised ur here??? while also getting a lil confession in there #i think its cute #maybeeeee lemme know what u think? hehe #anyways steve HONEY u deserve to have someone kiss all the wounds #and let u sob in their arms and yanno i VOLUNTEER #GIVE HIM TO ME AND ILL TREAT HIM RIGHT!!!#babygirl cries in this... heartbreaking but had to happen #ruby writes #ruby writes steve #steve harrington #steve #harrington #steve x reader #steve harrington x reader #steve harrington fic #steve fic #steve harrington imagine #steve imagine #stranger things #stranger things imagine #stranger things fic #wahoo #i cannot help but post fics the moment they are finished #idc if its like thursday for all u fuckers #come get ur hurt/comfort nowwww

4K notes · View notes

wellplacedbanana · 6 months

Text

I’ve seen a few posts recently talking about how important it is for us to share our tips for dealing chronic illness with each other, and I’ve realized that as a freakishly avid community enthusiast, I’ve been falling down on the job. So, I present

Wellplacedbanana’s Ridiculously Long List of Tips for All Things Chronic Illness (Curated Over 8+ Years):

Infusion Centers

Headed to an infusion center to get that sweet sweet (expensive as hell) live-saving medication pumped directly into your veins? Here’s what I do.

Bring headphones or earplugs. Most infusion centers try to maintain a semblance of quiet for the patients, but it can get loud fast—beeping IVs, pulse ox monitors, loud families, codes. Some infusion centers do pods of multiple people and some do individual bays, so this can affect noise levels.

Drink lots of water before if you have to get an IV placed. Don’t worry too much about bringing a water bottle because they’ll give you one when you get there. (Of course, if you have something like POTS and need more intense hydration, bring the damn water bottle.) If you’re not hydrated and they can’t find a vein, they’ll call in the ultrasound tech, and they’ll bring the longest IV needle you’ve ever seen. It hurts. Drink water.

Bring a book or your Switch or something else to entertain you, but don’t expect to actually do it. I tried bringing papers to edit the first time because I was like “Oh it’s an hour and a half of uninterrupted free time. I can get so much done!” I was wrong. The nurses are constantly checking in for vitals, the unit can be loud, and I spent the whole time trying not to vomit everywhere. Different infusions will have different side affects. Knowing what yours might be will help you plan for what you want to bring. Knowing how long your infusion will be can also help. Most infusion centers have to keep you 20-45 minutes after your first dose of a new medication to make sure you don’t have an allergic reaction, so factor that into your time too.

If you’re in a pod with other patients who’re friendly and if you feel up to it, don’t be afraid to talk with them. Lots of them are lonely, bored, interested in other people, etc. I met an elderly Thai lady one time who had been there for three hours and would be there for another four AFTER I left. We talked about her husband and her kids, and she listened to me talk about punctuation as style in prose. It made me feel less alone in the medical system and helped distract me from the nausea.

Conversely, if you don’t want to interact with anyone, snap on those headphones and block everything out. The nurses will get your attention if they need you. Don’t worry about staying lucid. Your job is to get the infusion and do what’s best for you.

You can bring snacks if you want, but most units/centers will have something to munch on or can order you something from the cafeteria if you’re at a hospital. Also the medication and the smells in the unit always make me nauseous, so it’s kind of a waste for me to bother pulling together food before I leave. You can always eat before or plan to get something on the way back. Going through a drive thru to get something with protein is my go to.

If possible, schedule your next appointment while you’re there. I have to go every three months, so I schedule the next one while I’m there, and then I never have to make any fucking phone calls. Phone calls are the worst.

My last and most important tip: ask the nurses when you need something. Blankets, water, snacks, pain meds, the lights turned off. If they can’t do it, they’ll tell you. They’d rather have you ask and have to say no, then you be uncomfortable. Don’t suffer if there might be a solution.

Dealing with Shitty Doctors

There are shitty doctors everywhere, in every specialty and every hospital system. It sucks, and you can do your best to avoid them, but most chronically ill patients will have to put up with one at some point. Here are my suggestions:

If they’re refusing to acknowledge one of your symptoms is a problem (won’t order tests, won’t refer you out, won’t ask any questions), tell them it’s affect your Activities of Daily Living. ADLs are one of the ways doctors measure severity of symptoms and quality of life. ADLs are the absolutely essential things you need to do to be a functioning human: eat, shower, get dressed, brush your teeth. ADLs are a trigger word for most doctors. Physical therapists and occupational therapists were created specifically to help patients achieve their ADLs. If you’re having severe joint paint, say it’s affecting you’re ability to shower and dress in the morning. If you have intense fatigue, say you’re too tired all the time to cook food to eat or even brush your teeth before bed. Tell them your symptoms are affecting your quality of life and your ability to function daily. This won’t always work, but it’s a good starting place. (A side note: if you have have to submit an insurance appeal for something that was denied, citing ADLs as a reason to receive the treatment/medical equipment/doctors visit, will often spur them into action. Sometimes, it’ll just make them ask more questions, but questions are better than flat out denial. This was a very helpful tactic when I was trying to get my manual wheelchair approved. I told them I was unable to complete my ADLs and it was affecting my quality of life, and they eventually came around. It’s also important to remember that ADLs are only the most base tasks that you need to live. Driving, working, socializing—those aren’t included in ADLs, and insurance especially will laugh in your face if you try to say you need medical equipment for something like that.)

Lots of doctors, consciously or unconsciously, will judge how you’re actually feeling by your mood in an appointment. I had a pediatric neurologist who couldn’t be convinced that my pain was at an 8 because I would laugh with my mom in the waiting room. Eight months in, I started getting real quiet, not talking, crying when he talked, all that shit, and he was so fucking flummoxed. He was like “what changed?? Are you depressed??” And I had to remind him that I was thirteen with a severe shoulder inure that hurt every time I breathed. Doctors will judge you based on how you look and how you present. It’s horrible, but it’s true. Present to them in the way that represents what they’d expect to see for your symptoms.

Whatever you do, don’t say anything (or send any snappy messages) that might be considered aggressive until you are absolutely, 100% positive you will never ever have to see them again. I’ve had a few doctors that said ridiculously horrible things to me. It’s tempting to send them a message about how shitty they’ve been or how much they’ve hurt you, but it won’t help. Shitty doctors have fragile egos and they don’t like to be challenged. They won’t take this well, and they’ll mark you as attention seeking, emotional, mentally unstable—you name it. When your other doctors call to ask questions about symptoms, etc, they’ll start talking shit, and everything gets complicated. This might sound dramatic to anyone who hasn’t seen it happen, but honestly, the medical system abuses emotion and mental illness to discard patients that aren’t afraid to advocate for themselves, and this is one of the least immoral ways they do it.

Remember that you don’t owe your doctors anything (except basic human decency). If they ask you to do something and you can’t or don’t want to, don’t. My psychiatrist was really fixated on me getting a light box to cure my depression. I did Not want to do that, so I didn’t. Sometimes, your doctors won’t move on to further treatment or tests until you try it, but most of the time you can say, “that’s not something I’m able to do right now. Let’s explore further options,” and they’ll move on.

Remember that learning to advocate for yourself takes years of practice. Just do your best, and try not to blame yourself for the ways you get mistreated. Therapy is the best investment I’ve ever made for this. It’s helped me learn how to advocate and how to process medical trauma.

Medication

For gods sake, take the as needed medication when you have a migraine or if you’re nauseous. Don’t punish yourself.

This might seem like a no brainer, but if you’re traveling and you’re going to take your medication bottles with you, put them in a ziplock bag. They will definitely open in your suitcase, and you’ll have to pick Levothyroxine out of your socks.

If a medication gives you icky side effects, tell your doctor and ask if there’s something that doesn’t do that. For me personally, it’s hard to find medication that works at all, so I often get stuck with things that make me feel like shit. But it doesn’t hurt to ask. Sometimes new medications come out or they dig up old ones.

Some medications come in dissolvable tablets or suppositories. They’re not fun, but if you have trouble swallowing pills, this is a good way to go. Again, communicate with your doctor about these things. I know that there are Scopolamine patches for nausea too. I’ve never used them before, but it might be worth looking into if need easy nausea relief.

All Things Wheelchair

Man, wheelchairs suck, but they’re also amazing. If you find yourself using one, you’ll encounter a steep learning curve.

If you’re not super buff when you first start, it’ll seem impossible to go up even a slight incline. Your arms will get stronger the more you move around, but it might take time. I eventually bit the bullet and started doing personal training. I’m lucky that I can afford it, and I know it’s not an option for everyone, but if you can, find a trainer who won’t saying anything shitty and who’s willing to accommodate. I worked with a queer-owned gym to find someone I was comfortable with. We do upper body strength training, and it gives me a chance to move my body more often. I still can’t go up big hills, but I feel infinitely more mobile. Give yourself time to adjust to the new strain on your body, even if you don’t do training for it. You’ll be sore in the beginning. Ice and heat will be your friends after long days. If your wrists start hurting a lot, you’re not wheeling correctly, and you should ask your doctor for a referral to PT or OT. Oh and your hands will be fucked for the first few weeks. I bought special wheelchair gloves to try to combat this, but it just made it harder for me to maneuver. Now I only use the gloves if it’s cold, if I’m going down hills, or in the rain/snow. (But seriously, if you’re going down steep hills, use traction gloves.)

Learn to pop a wheelie as soon as possible. It’s such a helpful skill. If you get good enough, you’ll be able to get up over single steps and traverse shitty pavement.

If your wheelchair has a cushion, then it has a cushion cover. Wash it.

Time for the grossest part: cutting hair out of your caster wheels. I hate this. I hate it so much. It’s fucking disgusting, but you have to do it. It’ll fuck up your wheels and make it harder to maneuver. Also it’s just gross to have all that nasty hair hanging out by your feet. Get yourself a long pair of thin scissors and cut all that hair out every week or every two weeks. If you don’t have long hair or live with people who have long hair, then you might be able to wait longer. You should also sanitize your hand rims while you’re at it. Hand sanitizer or Clorox wipes are great for this.

You’ll notice that it’s fucking impossible to carry shopping baskets or suitcases if you use a manual chair. Some people try to balance them on their laps or wedge them onto their footplates, but it’s pretty precarious. I got these weird peg things that attach to the frame. You can place a basket or your bag on it and still keep your hands free. Here’s the link for the ones I got, but it depends on your make and model, so do some research and call some different companies before buying anything. Also, make sure to measure the distance between the two sides of your frame to make sure a basket will be able to balance on the two pegs. Your frame might be too wide for this. Mine is, but I bought a special basket to take to the store that’s wide enough to reach across.

Lots of people will offer to push you. Some won’t even offer; they’ll just grab on and take you in whatever direction. It’s insanely invasive and dehumanizing. Don’t be afraid to put on your breaks if someone does this. I can stand and take small steps, so sometime I just get up and stare at them. You can also buy covers for your handles that have spikes so people can’t grab them. I know some wheelchair users who like it when people offer to push them. That’s good too! Take the help if you want it. Just remember to prioritize your safety and comfort. I had a big debate with another disabled person about whether it was infantilizing for someone to offer to hold open the door for us. I’m firmly on the side that they can offer, and I can say no, and they can listen, and then we can both appreciate the moment of shared humanity between us. They did not agree. Disabled people fight and disagree all the time because we’re not all carbon copies of each other. That’s okay! Just be respectful.

Getting a customized manual wheelchair was one of the single most stressful things I had to deal with. Insurance doesn’t like to pay for them because it’s about 3-12k, depending on the specifications and add-ons. But it’s also been the most liberating thing I’ve done since getting my mobility stripped from me. I’m not sure how it works for everyone, but I got a referral from my doctor to a custom wheelchair company. From there, they took measurements, discussed needs, and showed me different models. It’s going to be really really difficult to know what you want the first time. There’s a lot of different brands and customizations, so do your research and talk in depth with whoever’s making your chair. Ultra lite rigid frames are my favorite because they’re usually only 15-40 pounds, and the wheels can come off to make it even lighter. However, rigid frames don’t fold together in the middle like classic manual wheelchairs that you might find at a hospital or get at a rental company. They can be difficult to fit in the backseat of a car or in some trunks, so make sure to measure any cars you ride in regularly. Some people prefer to have tilted wheels so they can turn easier. Some people don’t want anything to do with that. Depending on your mobility and the people in your life, you might choose not to add push handles to your chair. I added some to mine because I often get dizzy, and it’s helpful to have handles in case I need someone to push me out of the crosswalk or into the shade. People who are highly independent and extremely strong might not want push handles because they won’t need help up steep hills. I like my handles a lot; however, my chair back is shorter than a standard wheelchair because it helps increase range of motion when I’m wheeling, so my push handles are lower than normal, and anyone who wants to push me has to hunch a bit to reach. Again, do your research and talk to your rep before making final decisions. Some companies will let you test out the chairs they have on hand to see what you like. It’s important to work with a wheelchair company you really like because you’re literally putting you life in their hands. I’ve had better luck with smaller, locally-owned companies, but you can’t always get referrals there, and not every town has them. Here’s my tip to you: Numotion sucks ass. Avoid them. My branch of Numotion seems to be an outlier; I’ve had really good experiences with them. But most of the time, its impossible to get ahold of anyone, their hours are few and random, and their customer service reps are rude. But! After you’ve completed your order form—gotten measurements and found customizations—they’ll submit it to insurance. This is the tricky part. I went through four appeals, before I got mine approved. Luckily, I had insurance through my mom’s job, and after the last appeal, her company told the insurance that they had to pay for it. This won’t be the case with everyone. Be diligent with your appeals. Have your doctors write specific, clear letters about why you need it, including information about all the customizations and add-ons. It’s likely that they’ll only pay for the base chair, and you’ll have to pay out of pocket for any extra things. Another note: most insurance companies will only pay for a new chair once every five years (if they approve the first one at all), so be sure that the chair you pick out will work for you for at least the next five and a half years.

I had an advisor in college tell me something devastating once: there is no AAA for wheelchairs. I’d broken a caster wheel and gotten stuck on a university sidewalk in 102 degree heat, and she was telling me about her own experiences getting stranded after one of her tires popped. She’s right; if you’re wheelchair breaks, you’re stuck wherever you are without any backup. Carry your phone with you. Tell your friends or family where you’re going before you leave. Familiarize yourself with the wheelchair repairs shops in your area. Sometimes places like bike shops will be able to help you fix smaller things. I always carry an Allen wrench with me in case I need to take a part off. And don’t worry; you’ll find that if something does go wrong, people are far more willing to help than you’d expect. One of the sculpture professors in the art department found me that day and went back to his workshop to get all his tools. He brought me water and sat in the sun while he tried to fix my wheel, and when he couldn’t, he offered to drive me wherever I needed to go. This man was a tenured professor with a prestigious MFA, and he was running late for a party where he was supposed to be handing out awards. You’ll find lots of good people when things inevitably go to shit.

Going along with the last point, your wheelchair will break, and you will have to send it into the shop to get repairs. If you can, invest in a cheap manual chair that you can use in emergencies. If you live with other people, you can buy a transport chair for cheaper, but you’ll need someone around to push you because it won’t have hand rims.

If you’re new to wheelchair use, give yourself space to feel all the emotions. When I first started, I had been using an office chair(!) to get around. My mom would push me from my bed to the bathroom and then back to bed while we waited to get a rental. I was so relieved when I got my own chair that I pushed everything else down. It took months to allow myself to be sad about all the things I couldn’t do anymore and be angry about all the inaccessible infrastructure that America has. Don’t push it down. Talk to a therapist or find people in the community to discuss it with. (If I choose to talk about my frustrations with friends, I always start with “I need to vent right now, and I’m grateful you’re willing to listen to me, but I’m not looking for any solutions to this at the moment,” or “can you give me some suggestions to work around these things that are frustrating me?” This gives my friends insight into what I need, instead of making them guess. It keeps us both from getting frustrated, and I highly suggest it, especially if you or your friends have trouble navigating social situations/expectations.)

Hand Controls

Hand controls are great option for your car if you’re unable to use your feet to drive. I got mine about a year back, but it was tricky and really confusing at first.

First thing you need to know: you can’t get hand controls without a prescription from a specialist. Usually a certain type of occupational therapist. You can look up driving rehab OTs in your area, but there aren’t many of them, and lots of the time you’ll have to drive several hours to see one. There’s usually a long wait list as well. (And of course, a lot of them don’t take insurance.)

If you’re able to find someone who’s certified, they’ll do an intake appointment and assess your physical abilities and needs. Sometimes, they’ll do the assessment and decide you aren’t fit to use hand controls. This can be for a multitude of reasons, including impaired mental cognition and slow reaction time, issues with hand or arm mobility, or there might be a better way to adapt a car for you. Again, it varies greatly on the person, and I’m not an OT, so I don’t know all the ins and outs. If you pass the assessment, and they view you got to drive with hand controls, you’ll be required to do a certain amount of training where you practice using different equipment. Some OTs will know what you need to use right away, and others will have you try different things out to see what fits best. There’s a lot of types of hand controls and a lot of adaptations that can be done to a car, so it really depends on the person. My training was only about 15 hours (plus independent driving practice), but it’ll depend on whether this is your first time ever driving, if you’ve driven without hand controls before, and if you have any other medical issues that might make it hard for you to adapt. Once you’ve completed the training and received your certificate from the OT, they’ll write a prescription to send to a shop that does specialty car adaptation. Kind of like wheelchairs, the shop you go to is very important. Ask your OT if they have any favorites in the area. Insurance never covers this, and some shops will way overcharge you if you’re not careful. My hand controls were about 3k out of pocket, but it was definitely worth it. It would’ve been a lot more to add other adaptations like a lift or a ramp, but sometimes you can buy used accessible vans for cheaper than adding it to your own car. Something to know: you’re usually able to turn your hand controls on and off. So if your friend needs to borrow your car, or you need to let a mechanic test drive it, you can disable to hand controls and allow someone else to use the foot pedals as normal.

Overall, it’s a very long, very expensive process, so plan ahead and be prepared to wait and pay.

Navigating Raising a Kid with Chronic Illnesses

I don’t have any kids, but my mom was my sole caretaker growing up, and I can offer you some of her thoughts. You have to remember that no matter what age your kid is, chronic illness is an impossible thing for them to deal with, and yet they have to deal with it anyways. Sometimes, there’s no good way to comfort a child who’s in 10/10 pain, or who’s about to undergo a life-altering procedure. All you can do is your best. Communicate. Offer support. Give affection. Make your love unconditional. I was a very angry teenager. I was angry with my mom that she couldn’t fix it, and I was angry with my doctors for the way they treated me. There were days where I would yell and sob and refuse to take my meds, and there where days where I would stare at the wall and not respond to anything. It drove my mom up the wall. She’s used to fixing things, and this was one of those things she couldn’t even help. I know she stills holds a lot of guilt for this, but she shouldn��t. She did her best. You’re doing your best too. You can’t fix everything. That being said, here are her suggestions:

Therapy, therapy, therapy. They might hate it, but some day, they’ll thank you. Remember that not every therapist is right for every patient. If your kid wants to switch to a different therapist, let them. It’s better than them sitting and not speaking the whole session.

Lots of kids with developing rare undiagnosed diseases will go through this vicious cycle where they get a new symptom, get sent to a specialist, get dismissed, and then develop a new symptom and start the process all over again. It’s not easy. My mom was a fan of throwing Pity Parties. Every once in a while, when the grind of it all started making us feel hopeless, she’d take me to the store and say, “pick out snacks and drinks. We’re going to throw a pity party, gorge on sugar, watch Lord of the Rings, feel bad for ourselves, and tomorrow, we’ll dust ourselves off and try again.” It helped. It was good to know that sometimes you can let life feel unfair, and it was even better to know that the next day it would be easier to try again.

A lot of being chronically ill as a kid is getting decisions stripped from you and having unexpected negative experiences. My mom would try to do spontaneous things every once in a while to remind me that not all surprises are bad. Instead of driving straight home after school one Friday, she took me to Starbucks without saying anything. After an MRI, she stopped at an art fair and let me pick out a necklace. We would go to the library after I spent the day in the hospital. Sometimes, she’d call my aunts while I was at school to come over and play card games on the weekends. And she was really big on giving me choices in everything. She never made me agree to new (non-lifesaving) treatment. Ever. If she really wanted me to do it, we’d talk it over and come to an agreement that made us both happy. Sick kids are forced into adulthood early; they know how to make calculated, logical decisions when needed. Let them be a part of their own healthcare. (They should also be given the chance to make rash, stupid decisions that have no bearing on their health.)

Keep track of everything. Doctors, meds, ER visits, PT exercises, diets they’ve tried for GI issues, everything about the surgeries they’ve undergone. Some day, you’ll need it. Or your kid will grow up into a chronically ill adult, and they’ll need it.

Talk to their school counselor about getting a 504 or IEP. Even if they’re not struggling. I was a super academically minded kid; I didn’t struggle to understand new concepts or complete homework correctly. But eventually it became hard for me to attend class and finish assignments. Having an IEP saved me. 504s are a lot easier to get (a lot less paperwork, less testing, less pushback from admin), but they’re not legally binding. If you want something concrete and all-encompassing, go for the IEP. IEPs are also really helpful when trying to get accommodations in college. You can also start with a 504 and switch to an IEP later. While we’re on the subject of school: remember that education is important, but school is not the end all be all of your child’s life. What should matter the most to you is that they end up safe and happy. I didn’t graduate high school; I took a proficiency test my junior year and dropped out. It was the best choice I could’ve made at the time, but it was still tough for my mom. I ended up going to college, and now I have a pretty solid job, but every kid will be different. Their mental and physical health is the most important. School is a huge huge huge stressor. Don’t make it harder for them than it already is.

Dating

God dating sucks enough on its own, but adding in chronic illness and disability just makes it a shit show. I don’t have a lot to offer on this other than you shouldn’t settle for anyone who doesn’t respect you, treat you with love and compassion, and accept every part of you for what it is. People will say rude shit. They’ll be nasty, fetishizing, infantilizing, dismissive. Some won’t be able to put up with all the things that come along with being ill. I sound like a broken record, but find a good therapist who can help you voice your needs and expectations clearly. Remember that you never have to go on a date if you don’t want to. Participate as you see fit. Throw it all out if you want.

I don’t have enough time to go into my tips for intimacy/sex and disability, but I’ll give you the highlights.

Communicate. Make it very clear what you’re able to do, what you’re interested in doing, and what you don’t want.

There are lots of ways to have sex. If you’re both having fun, being safe, and engaging consensually, then you’re doing it right. Don’t let abled bodied people tell you the way it should be done. There are lots of accessibility friendly toys to invest in, too.

As weird as it might sound, don’t be afraid to take breaks. Keep water near by. If you have POTS, keep salt or electrolyte tablets on hand. If you have to stop to vomit or go to the bathroom, don’t let it shame you. Go at your own pace and take care of your body.

Misc

Having seizures on a college campus: Most universities have a policy that if you lose consciousness while on campus, they have to call an ambulance. You are not required to ride in the ambulance. You can decline, and the paramedics will make you sign a form before leaving. If you’re still actively having seizures, then they’ll take you anyways, but you probably won’t be in any shape to try to decline. If you’re having seizures regularly, tell your professors. It’ll freak them the fuck out, so warn them ahead of time. It makes the whole thing a lot less awkward when you collapse in the aisle during a lecture. Related to that: communicate with your professors about all your accommodations and emergency health needs. They really honestly appreciate it when you talk to them about this stuff. Even if they have a big class and don’t remember you, it’s good to send them an email and introduce yourself. Hopefully, you’ve also talked to your college’s Disability Resource Center. If not, go do that. Now. (There’s a whole lot of shit that I have to say about campus accessibility and disability resource centers, but I’m not gonna go into it right now.) Also, wear your medical alert bracelet. I know they suck, but it sucks more for someone to be digging through your pants pocket while you’re seizing to try to find your wallet. And keep your emergency contact info pinned up somewhere in your dorm. I used to put mine on the fridge and point it out to my roommates at the beginning of term. It can take a while for RAs to pull yours up, so it’s best to make sure it’s easily accessible.

Remember that you do not function like a normal person. There is no wrong way to solve one of your problems. If you need to put a stool in your bathroom to sit at while you brush your teeth, do it. I got an extra tall stool to sit at while I cook at the stove because my wheelchair is too short. (Cooking in a wheelchair is another thing I could talk about forever.) If you need to wear a sleep mask on the bus because the light makes your migraine worse, do it. People can look at you funny all they want. Like I said, I rolled around my house in an office chair while I waited for a rental wheelchair. What I’m trying to say is find things that work and implement them, even if they’re non traditional.

Here’s what I pack in my bag for an ER visit: headphones, phone charger, book, zofran, Naproxen, water bottle, wallet with cash, socks, and sleep mask to block out the waiting room lights. If I’m expecting to be admitted, then I’ll pack more, but I try to keep it light if it’s just triage and a visit with the ER doctor. Sometimes I’ll stuff a granola bar or some almonds in there too.

My biggest tip for surviving hospital stays is to get out of your room (if possible). Go on walks around the unit. Some hospitals have little courtyards patients can sit in. If you’re in peds, go visit the rec room, even if it’s awkward. Their activities are usually meant for the younger kids, but it can be fun to connect with other people your age, and you’ll thank yourself later when you’re stuck in bed at 3am. Also, tell your friends to come visit you. Not everyone will be able to, but most people are happy to come hang out for an hour or two. It’ll help; I promise.

Clean your room every few weeks. Dear god, clean your room. I have trouble with executive functioning and finding energy to do housekeeping type stuff, but I get more depressed when my room is gross. So clean your room. Especially if you have hypersomnia/sleep excessively.

Don’t force yourself to use a pill organizer. I know everyone says it makes it easier, but I get overwhelmed when I have to refill it, and then I just don’t end up taking my meds. If it doesn’t work for you, don’t do it. If it does, then do it!

Don’t buy the self help books your therapist recommends unless you’re actually interested in reading them. It’ll just sit on your shelf and make you feel guilty for not being good enough.

Mental illness is tightly bound to physical illness. Try to be an active listener in your body. Sometimes, when I’ve been feeling really nauseous, my PSTD symptoms will get triggered over nothing, and it’ll frustrate the fuck out of me because it seems like it’s happening over nothing. I try to track when my emotional state is worse to see if it’s correlated to my physical symptoms. This helps curb the frustration and guilt. Sometimes it makes me dissociate more. It’s a balancing act. Just do your best.

Hobbies are so so so important. Make sure to give yourself time to work on them! And there are a million ways to adapt the activities you love if you’re having trouble, so don’t afraid to do some research. I know they have crochet hook grips for people with arthritis or loose grips, and there are super intense magnifying glasses for people who like to cross stitch and are having trouble seeing the tiny ass holes. I have a color blind friend who sends us pictures of paint to see if it’s the shade he wants. Very occasionally, you’ll come to the conclusion that there’s a hobby you can’t adapt. Let yourself be sad. I can’t hike anymore and it sucks. I can’t go tide-pooling either, and its not like if I just work really hard I’ll be able to do it some day. Life is shit, and sometimes you have to let things go. Be angry, be sad, tell people to fuck off if they try to turn you into inspiration porn, but also remember that there are lots of other cool things out there to try.

Going along with the hobby thing: take the time to learn ASL if you’re having trouble with your hearing or if you often go nonverbal. One of my friends had to get hearing aids last year, and we offered to learn with them, but they were hesitant because it feels like a non necessity to them. Something selfish that would take up all our time. If you think it’ll help, you should grant yourself the time to learn. Capitalism makes us think that we shouldn’t engage in activities unless we gain money or power from them, but that mindset will kill you. Your life will be infinitely easier if you learn ASL online with your partner or friends or siblings.

Look up Spoon Theory. It’s not a helpful metaphor for everyone, but most people in the community talk about it, so it’s good to be familiar with it.

Don’t be afraid to go out and find community! Find support groups, look up wheelchair sports if you’re into getting sweaty, brave the awkwardness of starting conversations with other patients in the clinic. I’m wholly and completely of the idea that humans are innately good. There are lots of interesting chronically ill/disabled people who’re looking for connection. Insurance companies and other medical entities rely on us feeling isolated, alone, and uniformed to continue making money and hold power. It’s important that we share with and support each other.

I know a lot of this is basic stuff, but it’s helpful to have reminders, and if you’re new to the whole song and dance, then it’s nice to get a sneak peak. There are a million things I didn’t get to, but this was what was on the top of my brain.

Also, I’m not the collective voice of every chronically ill person in the world. My experiences are not yours and they’re not everyone else’s. What works for me, might not work for you. Be kind.

#thanks to @thenarrativefoil for reminding me that we need to share with each other!!#if you have any suggestions for dealing with gastroparesis please hmu #I’m still waiting for my gastric emptying scan but I’d like to try out some of y’all’s tips #hopefully some of this is helpful to someone #chronic illness #chronic pain #disability #seizures #nausea #wheelchair user #ptsd #mental health #hand controls #medical insurance companies suck #therapy #so much talk of therapy #spoonie #if this is helpful to anyone I’ll make another

69 notes · View notes