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imaginationintowords · 3 years

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Folklore [song series]

mirrorball

Modern Day AU! Steve Rogers x OC!Reader

Plot: Inspired by Taylor Swift’s new album folklore. The story follows the timeline of Bucky and Elizabeth’s life throughout the years.

Word count: 2110

[a/n: thanks for being patient with me! hope you guys enjoy this new chapter! if i forgot to tag you please inbox me]

previous part

Series Masterlist

Age: 20

Location: Brooklyn, NY

Year: Summer 2014

Steve flopped down onto his bed, tired after today's events. Elizabeth softly laid down next to him, Steve wrapped his arm around her bringing her closer to his chest.

"Today was a day," he tiredly says.

"You okay?" She asked him.

After Bucky had left there was a sadness aura that followed Steve for the rest of the party. He had no clue what he had expected Bucky's reaction to be, but definitely not the one he got. He had even prepared himself fo a fight, he was grateful that didn't happen. He just wasn't expecting for Bucky to shut down and leave. Not even accepting his offer of having a conversation later.

He knew that Bucky just needed his space, time to think it all over. But the look on Bucky's face had Steve questioning whether or not he would ever come around.

It threw Steve off when Bucky requested that he breakup with Elizabeth. He couldn't believe his best friend would want his own happiness to suffer.

His whole life he had done everything possible to keep Bucky happy. After what Bucky and his family had to go through with his father, Steve made it his mission to never let his friend feel that way again. Granted he was only 7 when he made that promise to himself, he still kept it.

Steve had never put himself first, at least not until he had made the decision to go to school in California. He had even thought about changing his plans after his breakup with Elizabeth but he knew his parents would've been disappointed with that decision.

He had put Bucky first his entire life, what he's doing isn't selfish. Yet he can't help but feel like the most selfish person ever.

What if he was keeping Elizabeth from truly being happy? What if she just didn't want to break his heart? What if she just didn't want to break his heart during a family event? What if come tomorrow she would tell him the truth, that she was really still in love with Bucky.

He's not sure he could handle that heartbreak.

"Want to tell me what's going on in that head of yours?" Elizabeth asked, breaking Steve from his self destructive thoughts.

"I won't be mad if you still love him," Steve says, "I'd understand."

Elizabeth quickly sat up to get a look of Steve's face to make sure he was being serious. It nearly broke her to see how defeated he looked. She's never seen him so down, not even after his breakup with Peggy.

"You don't have to pretend to save my feelings," he continues, "If it meant you were happy, that's all I care about. If being with Bucky makes you happy, then please don't let me stand in the way."

"Oh Steve," she gently caresses his face, staring down at him, "I wasn't lying earlier when I told Bucky that I didn't love him anymore. And i most definitely wasn't lying when I said that I love you, because I do love you, with my whole heart. You make me happy. The happiest I've ever been. Bucky was my past. You are my now, and hopefully my future.

"If you can't see how truly great you are, then I must not be doing my job as not only your girlfriend, but you're friend," she says, "Because you make me feel special every single day. And I just want you to feel the way you've made me feel."

"It's not your fault," Steve softly says, grasping her hand to place a kiss on her knuckles.

"Growing up I've always been second to Bucky," he explains, "Everyone seemed to prefer him over me. Whether it was girls or just our friends. It was always Bucky then Steve."

Elizabeth takes a moment to think back on their time growing up. She couldn't help but feel guilty when she realized that everything Steve is saying is true.

After she and Bucky got together, Steve sort of became an after thought, not because they purposefully excluded him, it never crossed their mind simply because Steve also had Peggy at the time. But after Peggy left, Elizabeth never really got to talk to Steve about how he felt, because she got caught up in her own drama.

"Steve, I'm so sorry," she apologizes, "I should've known then about how you felt. I was so caught up in my own shit, I never realized that you could've been going through your own stuff."

"Liz, it was never your fault," he says, "You were going through your own stuff. And I had learned to suppress it. Plus Bucky was your boyfriend at the time, of course i wasn't really on your mind. Plus it's kind of my fault for allowing it to happen. I never spoke up about it. I just always went along, figuring it was better than nothing."

"Once I got to Berkeley that's when everything changed," his mood shifts a bit to a much lighter feel, "I no longer felt like the shadow of a person. I felt like my own person for the first time ever. I was able to become someone I never thought possible. I am no longer 'scrawny Steve, Bucky's best friend'. I just became 'Steve' or 'Rogers'."

Elizabeth smiled at the way Steve's eyes lit up when talking.

"I had never imagined myself leaving New York, let alone making the permanent move to California," he confesses, "As much as I love it here, California is where I feel I belong. I know you feel it too."

Elizabeth nods her head agreeing with him. She felt the same way, as much as New York was her childhood home, California was where she felt her heart aching for. Where she felt like she belonged, where she could thrive. The more she spent time there, the more it felt like home, that's why moving there wasn't a tough decision for her.

"Coming back here," Steve says, causing Elizabeth to shift back her focus on him, "It just makes me feel like that scrawny kid all over again. I feel like no matter how hard I try to shed that image, Brooklyn will never see me for who I am now, but for who I was then. Like no matter what I do I will always be 'little' Steve Rogers."

"I know you feel it too," he says looking up at her.

She did. She did feel stuck in the past whenever she came back home. It seemed like life stood still here, while outside of Brooklyn everything is moving ahead. She knows it's only because she grew up there, and had nothing to do with Brooklyn itself. Once she was in California, she got a taste of life outside of Brooklyn, and she's not sure if she would want to go back. So moving there was an easier choice for her to make.

"I do," she agrees, "It's why moving to California was an easy decision for me to make."

"I wasn't even sure I was even going to make it to California," he says.

"Why is that?"

"Felt like I was disappointing my parents," he confesses, "We had always discussed me going to Columbia as a pre-med major. That had been the original plan. It wasn't like they were forcing it on me. More like I was forcing it onto myself.

"It was the 'safer' choice, granted the longer one, but in the end it all would've been worth it. For some reason as a child I believed that was the only way my parents would've been proud of me. Regardless of the fact that they were already proud and would tell me constantly. I just put that pressure on myself."

"It wasn't until junior year that Mr. Lawson, my high school art teacher said I should apply to some art schools," he continues, "Then after I had a long discussion with the guidance counselor she agreed as well, saying I would get in no problem with whatever art field I applied in.

"I never really gave my drawing much thought. It was just something I would do. Also a career in art is not exactly financially stable, or at all stable. But I figured it wouldn't hurt to apply to a couple of schools as an architecture major. Never really gave it a second thought."

Steve pauses, "I did get into Columbia."

"Steve, no fucking way," Elizabeth gasp sitting up straighter, "I never even heard."

"That's because I only told my parents," he says, "I got the acceptance email the same day I got NYU's and Berkeley's, where I hadn't applied as pre-med, which my parents didn't know of at the time."

"Wow," Elizabeth responds feeling herself become speechless. She had only known about NYU and Berkeley. She knew about NYU because that was the plan, they, including Bucky had discussed Freshman year. Back when she was still with Bucky, and Steve with Peggy and they all had planned to stay in New York. Before life got complicated.

"When I did get the Berkeley acceptance I had to come clean to my parents about what major I applied under. I was nervous, because a part of me never told them because I was worried I wouldn't get in. So seeing that acceptance it was the assurance I needed. One that really let me know that I could actually do it. And of course my parents were proud."

"Of course," Elizabeth smiles, "They would've been proud if you had decided to not even go to school and just worked in a restaurant."

"That's true," Steve lets out a small laugh, "And I think I more so didn't want to regret the decision. Leaving home to move across the country for a career that could be unstable. It's scary."

"Do you?" Elizabeth asks.

"Do I what?"

"Do you regret it?"

"Not one bit," he smiles, pulling her back down onto his chest.

They laid there in a comfortable silence. Steve ranking his fingers on Elizabeth's arm, feeling himself grow tired.

"I hope you know you're amazing," Elizabeth quietly says looking up at him with pure admiration in her eyes, "That I think you're amazing. I think you're one of the greatest people I have ever known. And if I have to spend my entire life showing you just how amazing I think you are, I will."

Age: 29

Year: 2023

Location: Santa Barbara, CA

Elizabeth giggled as Steve carried her over the threshold into their hotel room for the weekend. He kicked the door closed as he silenced her giggles with a kiss, before placing her on her feet.

"Why thank-you Mr. Rogers."

"You're very welcome Mrs. Rogers," he smiled brightly at his new wife.

Her makeup was slowly fading, hair no longer perfectly done after a night of dancing with their close loved ones. Steve just stares at her lovingly. He ahs never seen her more beautiful and the fact that he gets to be her husband for the rest of his life, he's never felt luckier.

Elizabeth feels his eyes just on her, "What? Do I have something on my face?"

"No, just admiring my beautiful wife," he compliments, causing Elizabeth to blush.

"How about one more dance?" she asks.

"There's no music."

"When I'm with you there's always music," she says holding her hand out for him.

Steve pulled her to him, one hand grasped in her's, while the other lay on her lower back. Elizabeth's head rested on his chest, with Steve's chin softly resting on the top of it.

"You know I think you're amazing," Elizabeth says as they sway softly in each other's arms.

"You might've told me once or twice," he responds.

"Get used to it because I'm going to be telling you that for the rest of our lives."

"Nothing I want more than that," he kisses the top of her head.

"If you'd asked me to runaway with you to join a circus, I would in a heartbeat," she says.

"Oh really? If I lose my job, and having nothing to show for, you'd still be there?"

"Right next to you baby, every step of the way," she says looking up at him, "Plus you won't have nothing to show. You'll have me. You'll have us. With me by your side I'll make sure you never not know how much you mean to me."

"You've made me believe in love again when I thought it wasn't possible. You've made me love myself in a way that I didn't think were possible. You make me a better human being by just being you. I love you Steve, more than anything.

"So if everything were to go to shit, as long as I have you that's all I need. I'll be there reminding you every single day just how special you are to me."

"I love you," Steve smiles as tears fall from his eyes.

#folklore #folklore song series #folklore mirrorball #mirrorball #mirrorball taylor swift #mirrorball song seires #steve rogers fanfiction #steve rogers x original female character #steve rogers x original character #Steve rogers x OC!female #steve rogers angst #steve rogers fluff #angst #fluff #original character series #Steve rogers modern au #steve rogers modern day

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icantleave · 3 years

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hey, number 1, 2, 4 and 5 for the deep personal uncomfortable asks

Hah, that's a long post with a bunch of very boring personal stories, so:

1. The best advice I've been given:

1. The best advice I've been given: Not exactly an advice (can't remember one that isn't about drawing hah), but close. I always hated how I look, and once one person said to me: "you're not ugly, you're just not your type". And I realized that it's actually true. And this thought helps me now to deal with the parts of me that I dislike. When I look at people on the street, they are not ugly, their looks just don't fit my taste sometimes; and so if I don't change how I think about people whose looks are not my type, then it's okay for myself too. Thinking like that about it helps me a lot more than trying to convince myself that I look good or that it's fine to look bad, because that often feels like lying to myself.r one that isn't about drawing hah), but close. I always hated how I look, and once one person said to me: "you're not ugly, you're just not your type". And I realized that it's actually true. And this thought helps me now to deal with the parts of me that I dislike. When I look at people on the street, they are not ugly, their looks just don't fit my taste sometimes; and so if I don't change how I think about people whose looks are not my type, then it's okay for myself too. Thinking like that about it helps me a lot more than trying to convince myself that I look good or that it's fine to look bad, because that often feels like lying to myself.

2. Hm, non-physical self destruction? Hard to answer; don't think I ever do that on purpose. I guess I can count the times when I start thinking about some thing or event in my life that upsets me, and instead of trying to switch my thoughts to something else I just start talking about it with literally everyone who's ready to listen at the moment. And so I think about it way more than I should and usually end up crying and miserable and also annoying to people around me. That's not good.

4. I don't have a lot of vivid memories, and it's hard to choose one that would be brighter than others. Have two, one good and one bad:

When I was about 7, I was outside of town with my friend. We met with a bunch of kids approximately our age, and played in the forest. It was sunny but quite cold, I think maybe the end of the summer or early autumn, and the forest was beautiful. We were running after each other in teams and hiding by lying under the fallen trees and the spruce trees with low branches. I can't even remember the rules of that game now (it was completely made up and complicated as shit), or who played with us, but it was very fun. In those years I didn't have many friends, and kids my age, at school or other places, mostly hated me, so it was very nice to find a group of people that didn't, and to spend a day like that. One of my happy memories.

When I was 10, I was in the summer camp where my mom worked, and we went on a trip, which included a ride on a boat in the sea. At the time I was terrified of drowning, of depth of the water, and of unstable things like the boat, so you can probably imagine how bad I felt. The boat was small and the waves were very big and I spent all 30 minutes crying and screaming and bit my mom's shoulder because I wanted to hold on to something more, because for little me it felt like I'm going to die any second there. One of the scariest moments of my life - sounds stupid in perspective, but I still can't think about it without wanting to cry.

5. My childhood was mostly good, I think. There were not nice parts of course, but I don't think I would want to change them, because who knows what would have happened instead. So if I could change one thing in the past, I would tell the 10 years old me to not quit dancing and not go to an art school instead. That was a bad decision that led to many mistakes that lately created most of bad parts of my current life. Sort of a turning point.

#asks #personal stuff

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anundefinedwoman · 5 years

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Waiting...

It has been ages since I've written. I have thought about it. I've thought about some things I could write about, and yet I don't do it. I get distracted or busy, or I make myself one of these to avoid doing it. Writing can be cleansing, cathartic and a way to escape, but it also is exhausting. It drains a lot out of me. Much like me, there are contradictions. It requires me to dig deep and to go inward and then think objectively as an outside observer judging my own situation and asking myself hard questions or seeing the picture from a detached perspective. I do a lot of that anyway on my own as that’s just the curse of being an over thinker, but when you are writing about something that matters, the degree in which it gets taken can confuse me, since I'm terrible at math.

I've been so sad lately and I'm having such a hard time. I'll be sitting back in my room where I have closed myself off from everyone and I have these epiphanies that come out of nowhere seemingly, or perhaps there was something that triggered it, but it was a short 'a-ha' moment that I said I want to write about. I need to dig deep and put some further thought to see if there is more to it. The thought made me sad and do you know what happened? It went away, like a dream. Like the details faded. I don't know how to draw it all together anymore and it frustrates me and makes me sadder. But I will try. Maybe some will come out.

It has already been established earlier that I was an unwanted child. I don't know the moment I understood that for the first time. I wish I remembered more than fragments. The parts I do remember involve a lot of waiting. Waiting to be picked up. Watching from a window for a car; my grandmother picking me up from daycare, a church bus to pick me up from the curbside, my mother waiting to come and see me by the window or road - if she would even bother showing. The telephone for a call that never came, the birthday or Christmas present or at least card. Broken promises, unkind words, beatings. Each abandonment - was being raised to fear and reject the world down the road. Having my life controlled by someone and knowing that I was never enough.

I was never locked away, but I was isolated. There was one child I remember I would occasionally play with when I lived with my grandparents, but most of my time was spent alone or visiting my grandparents neighbors who were elderly. They were kind to me. She taught me how to play solitaire and would give me lemon drops and tell me about her bingo adventures. Maybe some of it could be explained away as being an only child. I remember being in love with fairy-tales and make believe like Jack and the Beanstalk, Hansel & Gretel, & The Nightingale.

***********************************************************************

I had to step away from this for two days I became so distraught and distracted. I cried for a good long time.

I've been thinking a lot about never being able to trust anyone. I get lost in thought where I'm literally lost. I phase out. I'm in nothingness. I forget everything, including what I was going to write about. This is really upsetting to me and I find myself welling up with tears at this, because this doesn't ever happen. My mind can crisscross and I can go into what I call my ‘ADHD modes’, but I don't completely forget. Writing in free thought even fails to bring forth my thoughts.

I'm not sleeping well. In fact my sleep last night was completely restless. The little sleep I did have, the dreams were strange. I dreamt that 3 people that I didn’t even know very well messaged. One was a man I met a few years back and only a couple of times. He and I attended the same church for a short while. But me and church didn’t last too long. In my dream it was an election year and they kept asking me if their posts would be a problem for our friendship. Like I said, we aren't even friends like that, and this person never even posts political things. I kept wondering how these people even knew which way I leaned politically since I never posted about political matters. Then my dream extended to news outlets. I didn't understand that and it wasn't clear.

I hardly ever remember my dreams. Ever. But I am having lots of migraines again too. I had probably 7 or 8 in the last 5 days- 3 yesterday. I take daily medication for chronic migraines. I need to make an appointment to see my neurologist since my medication isn't helping obviously, but I don't want my medication increased. I think it messes with my cognition. Fuckity Fuck.

Yesterday and last night I cried and cried. This writing assignment from the other day triggered the floodgates in me. I stay back in my room and I hid. I cry in silence. I hurt so badly my chest hurts from holding it all inside. My husband came home and napped and I cried in bed next to him as I read and he didn't even know it. Only my sniffles would have given me away. But in keeping it so quiet I literally hurt. As quickly as it comes on, I can shelf it. Something I learned how to do as a kid. 1/14/19

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sxpiosexualx · 6 years

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Hi. OK I just had an idea. Everyone wants to claim daenerys isn't mad that it was viserys. We only saw him in season one. Well in show time wouldn't Dany be about his age now? She brings him up upon arrival at dragonstone stating he was cruel stupid and weak. And if he had an army and three dragons he would've invaded kings landing already. Yet Dany uses her dragons against the Lannisters and even goes full tilt drama queen at the dragon pit. Dany is Viserys with teats.

Hi! Before you read any further, this is something I never thought I’d have to write but I thank you for the question all the same.

To me, the Targaryen Madness has always been a sort of Chekov’s gun. Because of the coin flipping line, we’re made to think it should(and most probably would) apply to either one of the last Targaryens going mad. At this point, it’s either Jon or Daenerys. But that aside, we also have to examine the probability of the gene being present. It’s tricky, but simply said, just because there’s a 50-50 chance of a Targaryen being affected by the madness, doesn’t mean that in one household of two Targaryens, only one will be affected. It applies to each Targaryen.

How the gene works is even trickier because George R.R. Martin didn’t exactly expand on how it develops, he only tells us that Aerys was full of promise and that his lapses were forgiven, and that he later went on to develop paranoia and dance with madness. If any of you at this point, think “why are we discussing how genes work in a fantasy series with dragons?” you should probably stop reading. Martin writes his characters as human. Yes, he’s incorporated fantasy elements and magic, but at its base, ASOIAF characters are complex human beings with moral dilemmas, and are not exempt from being affected by the in-universe diseases and illnesses - particularly not the Targaryens.

One of the few things we know about Targaryens are that their kin suffer from inbreeding. The effects take shape in stillbirths, high probabilities of infant mortalities, poor health, deformities, and of course, the Targaryen Madness. It’s safe to say some form of science still applies here, because that much has come from the author himself. So when considering the coin flipping line, it’s therefore nonsensical to rule out any Targaryen from being affected until we see them in their later years. A gene can be present in yourself, and remain dormant until such a time where certain stresses may trigger it into fruition. For example, a person may be more likely to develop depression or some form of mental illness if one parent has a history of developing it because we know from research that those genes are hereditary. However that’s not to say that just because it’s present, that you would go on to develop it. That’s what the Targareyn Madness essentially is - a mental illness. With that in mind, let’s take another look at Viserys.

Yes, Viserys grew cruel and he abused Daenerys but I’m of the opinion that it’s a result of his upbringing. I say this because we know from Daenerys that he had once been a true brother to her. He had taught her how to speak high Valyrian, and had an initially fairly warm relationship. The strain begins when he starts to resent her for the death of their mother. He spent most of his life getting mocked, ridiculed and humiliated, going from one place to another, rewarding him the title “the Beggar king.” It’s said that the day Viserys had to sell his mother’s crown to survive, it had taken the last joy from him, leaving only rage. That is an extensive amount of trauma to take on for a boy of 8. Furthermore, he was being used by Magister Illyrio, who filled his head with grand illusions. Consider also the fact that Aerys had kept him close, and it’s no wonder Viserys turned out the day he did. Somewhere along the line, it’s possible the gene had been triggered, and as a result we get the Viserys we see: a disillusioned and cruel man with a lack of concern for others. In this light, the coin flipping line should then be taken differently. As opposed to believing that either Viserys or Daenerys was the one affected, we should see them both as having equal chances of the gene being active and playing out. In a sense, the coin is still in the air, and it hasn’t yet landed.

Consider then the case of Daenerys. She dealt with verbal and physical abuse at the hands of her brother, who later arranged a marriage for her against her will for a political gain. Viserys was also her only source of information, and he took that chance to fill her with Targaryen propaganda and instilled in her the same sense of paranoia and mistrust of others. She witnesses the death of her brother first hand, and yet is strangely calm, because she believes he was “no true dragon” - an idea Viserys himself fed her. She takes on the “blood of the dragon” mantra for herself, first drawing strength from it, then later as a means of differentiating herself from others, believing that her place in the khalasaar while comfortable enough, would not suffice for the blood of the dragon. This becomes her drive, her purpose, where it once had been Viserys’, and look how that turned out.

Daenerys showed promise herself, more than Viserys had ever managed. The birth of her dragons was a pinnacle in her storyline because it rewarded her with more agency than she knew how to deal with. It allowed for her to gain a following, and an audience, and furthermore it validated her beliefs of being extraordinary. This is where it all goes downhill, because this is where she carries the burden of wielding three equivalents of nuclear weapons. Instead of dealing with her problems diplomatically, she chooses to make use of her dragons. Heavy is the crown, and even heavier the burden when it’s weighed down with dragons, “I am the blood of the dragon, she thought. If they are monsters, so am I.”

She takes on more than she can chew, freeing slaves and then gaining only a herd of mouths to feed, more than she can afford while wandering Essos, until she takes Mereen. Even then, after realising she’s more conquerer than queen, she decides to stay and rule, and she fails - her methods becoming more cruel and ruthless each step of the way. She abandons Mereen and sails for Westeros with three dragons at her back and even more dangerous, a sense of vindication urged on by the people she surrounds herself with: flatterers, loyalists, and followers. By season 7, what does she do when a person tries to tell her otherwise? Give in to paranoia, and accuse them of scheming, and why? Because she was told of the three treasons she would face earlier on in Qarth. There is a reason why Martin included this in the house of the undying. If it were merely foreshadowing, a warlock could have simply said it in passing in a prologue chapter without Daenerys present but she is made aware for a reason - to allow for her to grow suspicious, and she does. She even grows paranoid of the Targaryen Madness taint, which only adds to a sense of inner conflict. So what do we know of her now? That she’s set on the throne, has to be spoken out of burning cities down, and gives in to paranoia. She is far from clear of developing the madness, and I’d agree with you that we’ve begun seeing signs of it.

In conclusion, by right no Targaryen is exempt from the Targaryen Madness gene, it’s only a matter of whether it’s been activated, and whether or not it can be tackled and kept stable. In the case of Daenerys it’s much tougher because she can choose to do as she pleases with her dragons, and she does. Maybe we’ll see a more ruthless Daenerys in the series to come, or it may be that she dies in battle along with her dragons, and the matter will never truly be decided because her death prevents us from seeing it further develop, unless Martin himself steps out and spells it out for us at the end - something I very much doubt he will do. Just my two cents, but it’s nonsensical to decide that she’s spared from it at this point in the game just because Viserys showed signs.

Thanks for the ask! x

#anti daenerys #targaryen madness #viserys targaryen #this isnt really an anti viserys because its just a discussion of his character

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bokuaka-4510 · 4 years

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Bokuaka: Weakness

hi guys!! I thought I would start posting my Bokuaka dabbles on here. I just started writing, so any feedback/support would be much appreciated :) also most of my stories are multi-chapter (just a heads up!!)

Chapter 1: Flashing Lights

(Here’s the image that inspired the first chapter! Obviously all credits to the crazy talented artist @songrnim on Twitter)

The flashing lights were like a second home to Bokuto- the way they would always blind him when he was at the apex of his spike before slamming down on the ball and being rewarded with that satisfying crunch and throbbing in his hand.

Okay, so maybe he was a little bit of a masochist, but then again weren't all spikers?

"Bokuto-san!" a low voice shouts to him.

He knows that voice better than his own. How many times had he heard it, calling his name with the same pitch, same urgency, same tone, over the last few years?

Akaashi.

As long as it feels good. We'll be sure to clear a path for you.

Sure enough, even Bokuto could see the path in front of him, clear as light. Akaashi's perfect toss, spiraling higher and higher. His legs move on instinct now, tensing before catapulting him into a flying jump, powerful and natural.

The blinding lights.

He squints against them, golden eyes stalking the ball as if there's nothing else important in this world. For a split second it's just him and the volley, his oldest companion.

Then the towering wall appears- three giant blockers seeking to return his spike.

As if.

He glances at his destination- the spot tethering on the sideline, between in and out, on the opposite side of him and the blockers. Arm slinging back, building power and momentum, he waits until the ball is at its peak before smashing it down. Time frozen, Akaashi finds himself captivated once again at the sight known as Bokuto Koutarou in front of him: toned arms, lean body defying physics, attractive face set in determination.

Magnetic.

Tempting.

Enthralling.

Bokuto looks otherworldly, and Akaashi loves the view that leaves him feeling like he's stolen a glimpse of something belonging to paradise, something not meant for human eyes.

Crack.

The ball hurls towards the exact spot Bokuto wanted. A perfect cross-court shot.

Bokuto thinks it should be illegal for something to be so beautiful.

He falls back toward the hard wooden floors, back to reality, where complete and utter silence greet him.

Then, the room erupts into cheers, so loud, so deafening he can't even hear his own heartbeat, but fuck if this isn't what he lives for. Yes, yes, yes!

The crowd is chanting his name, as if he's some divine savior, " Bokuto. Bokuto. Bokuto," and he can hear the reporters struggling to grab his attention from the sidelines.

Cameras on him, fans chanting his name, the dull throbbing in his right hand, well, he's never felt happier.

"Bokuto-san!" he hears the familiar voice boom at him, and Bokuto spins around searching for Akaashi's eyes, always stormy green like an angry sea after a victory.

Instead, he's greeted by tackling hugs from his team mates, who jump up and down with the joy from the victory, riding out the high from their win. He glances up from their hurdle, only to find Akaashi's startling eyes, sure enough sea green, locked on his own. The pretty setter smiles softly at Bokuto, and the spiker finds himself reinvigorated. Untangling his body from the embrace of his team and offering them a light pat on the back as he passes them, Bokuto strides to his best friend.

No, not best friend. They were...?

He didn't know, only knew that best friend was too insignificant a term to describe what they had built the last 5 years together.

"Hey, hey, hey!" Bokuto exclaims as he draws near the other boy, a grin splitting his face.

Akaashi holds up a hand for him to high-five, but the spiker just grabs it before engulfing the shorter boy into a bone-crushing hug. Immediately, Akaashi is enveloped in Bokuto's familiar scent- mandarin, pine, and citrus.

Ba-bump. Ba-bump.

Akaashi sends a silent prayer to the Gods, please don't let Bokuto-san notice.

"Akaashi," Bokuto whooped in that typical, loud voice of his, "we won! We won! That toss was fucking awesome! You're awesome, wow!"

Akaashi carefully detracts himself away from the embrace. Smiling at Bokuto with a light blush dusting his fair cheeks, Akaashi congratulates him, "Bokuto-san, you're the ace. You gave us that winning shot,".

Well, Bokuto didn't think so. He sucked at tossing and his receives were decent at best, but if Akaashi, who was the smartest guy on the whole wide world- no scratch that- galaxy, was saying that, then it had to be true. Right?

Roaring with laughter, Bokuto smugly grins at him before pointing to chest, which proudly bore the number 1 in a light blue color, " Aha! I guess you're right, Akaashi. I'm the best ace, aren't I?"

Akaashi nods solemnly, now ignoring their ace's words as he focuses more on catching his breath.

"... best setter," Bokuto finishes.

Akaashi eyeballs the spiker, unsure if he heard him correctly.

"What," he pants out, hands resting on his knees, "did you say Bokuto-san?"

"I said if I'm the best ace, then you have to be the best setter, right? Right? Because a good spiker is only as good as his setter?" the star beams at him as he tilts his head side to side, reminding Akaashi of an owl. He almost wants to shield his eyes from the brightness.

Except Bokuto's smile and praise speed up Akaashi's already racing heart. Akaashi tells himself it's from the intense match they just played, but even he scoffs at the blatant lie.

Akaashi can't help the genuine smile, the one only Bokuto can only lure out, that graces his face, "Huh, I guess so Bokuto. Maybe we're just a good team in general,"

Before Bokuto can even respond, the coach calls their names. Bokuto and Akaashi. They're the only ones left standing on the court. They head over to the sidelines where the coach and the rest of the team sit before coach congratulates them for winning the first game of the season.

Which is followed right by Coach ordering them to go do 5 minutes of suicides and 3 laps of dives for every mistake they made, which was, according to Akaashi's calculations, a lot. He stopped counting at 16. Of course, most of them were made by Bokuto, but as Akaashi steals a glance at the star ace congratulating the rest of the team, arguing with Kuroo on who stole the spotlight, ruffling the freshmen's heads in genuine affection, he discovered he didn't care the slightest about Bokuto's contribution to their punishments.

They won.

Bokuto was happy.

To Akaashi, those were the only two things that really ever mattered, though not in that particular order.

"Ah, Bokuto-chan," the Coach cuts in his gruff voice, "I think the reporters wanted to talk to you. Go head over to where Hoshiumi-chan and Ushijima-chan are. They should be almost done,".

Bokuto suddenly stands erect and offers the coach a mock salute, a crazy grin on his face. With a roll of his eyes, Coach pushes his player away, but Akaashi catches the ghost of a smile on Coach's face as he turns around.

"Try not to embarrass us too much, ok horned bastard?" Kuroo calls out behind Bokuto with his signature shit-eating grin that typically put anyone on edge.

But Akaashi has known the dark-haired boy for just as long as he's known Bokuto, so Kuroo scares him about as much as a kitten does. Bokuto must feel the same because he just sticks out his tongue at the seemingly menacing man. Akaashi's eyes trail Bokuto's disappearing figure, watching him high-five the two other celebrity spikers as they pass each other. Ushijima and Hoshiumi return to their team, taking a seat right behind Akaashi.

After a rather long (and bad, the Coach was not particularly adept at expressing positive emotions, Akaashi noted) inspiring speech by their sensei, the team heads out of the gym, talking and laughing amongst themselves, all of them in high spirits, especially after Ushijima quietly announces he would be attending post-game drinks with the team, courtesy of Heishi-san.

Apparently, miracles do happen.

In the middle of Hoshiumi's monologue (something along the lines of "Take that Hinata, you orange piece of crap! I scored 7 points in the second set. I hope you get sand between your ********* and spend all your ******* days getting **** by crabs. Akaashi started tuning him out after he learned four new expletives), Akaashi picks up on Bokuto's voice amongst the cacophony of noises in the auditorium.

It's not like he was diligently looking for the spiker. That would be ridiculous, right?

"-but my team rocks! Akaashi, he's my setter, and Kuroo and Ushijima-kun and Hoshiumi-kun and Heiwajima-kun and everyone else is crazy talented! They all make me want to be a better wing spiker," Bokuto raves. The reporter in front of him looks a bit star-dazed, pupils dilated and mouth parted open, as she continues her interview with the attractive rising star.

Akaashi briefly wonders if she's even paying attention to the conversation, but he honestly can't blame her. Akaashi spent five years accustoming himself to the glory of Bokuto, and he still has to remind himself not to drool when he sees him. Six feet of pure muscle, striking golden eyes, and sharp, handsome features make up the man known as Bokuto Koutarou. The elite spiker stands proudly as he converses with the pretty woman in front of him, completely oblivious to the effect he has on her. He's loved by all of Japan, and probably soon the whole world. Even the court adores him as it seems like the bright gym lights spotlight his lean, muscular figure, emphasizing the number 1 on his back.

Akaashi stares at his back, noticing the way the white jersey hugs his muscular frame a little too snugly, back muscles tensing and relaxing every time Bokuto moved or laughed.

Yeah, Akaashi thought, Bokuto definitely looks good in white.

It's the last he sees of Bokuto before they part ways.

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lady-fiona-rossi · 7 years

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eds-zebra-warrior · 3 years

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2021 Ehlers Danlos Society Awareness Month (Day 18 Prompt: Words to Parents)

I am interpreting this prompt in two different ways so will address it as such starting with explaining how my parents are with my condition and then words to parents of kids newly diagnosed or who present with a wide array of symptoms.

My parents were awesome prior to my diagnosis. There were things I wish they had known and even now wish they knew but I almost always had that support system some don't have. Sure there were a lot of times I would tell my mom I was having chest pain or my heart was pounding where she would say “It's probably just anxiety” and of course when anyone has a headache, runny nose, stuffy nose, scratchy throat or generally coming down with some kind of bug her notorious saying was “It’s probably just your sinuses” which me and my dad still talk about to this day. She went decades of her life taking Sudafed every morning truly believing she just had bad sinuses to find out years later she was actually having an allergic reaction the entire time due to Systemic Mastocitosis and really needed allergy meds and since she had bad sinus issues she seemed to think anything and almost everything that someone was experiencing from the lungs lungs up, weather it be a migraine, eye pain, sore throat, coughing, going horse, runny nose, bloody nose etc. it was just your sinuses which usually wasn't the case because soon after I would test positive for strep throat, oh the times I had strep throat. I had it so often that when I got it, I started not even noticing the throat pain believing my mom that it was my sinuses but more major like a sinus infection, to go to the doctor and find I had strep again and was desensitized to the pain. Sometimes my whole throat and mouth would be covered in blisters before the pain was bad enough just because I always had strep. Occasionally it was other things like my migraines growing up I now know were from Occipital neuralgia, craniocervical and atlantoaxial instability. So she didn't always take me seriously but I have to admit, after two decades of your life being told you're a hypochondriac and your symptoms are all in your head, I started to believe I was crazy myself and that my symptoms either weren't real or much less severe than they really were.

My dad being autistic never really dealt with my health stuff very much. He just isn't knowledgeable in it and has no clue what to do so my mom was the one who did that. Though she pawned off a lot of my more serious issues on it all being on my head she was always there for me. She took me to the hospital if it was needed and knew I didn't say I needed to go to the hospital unless I really felt like death. There have been several times where doctors have tried to say nothing is wrong and send me home where she has literally refused to take me home or argued with doctors but this was mostly after my diagnosis. I kind of wish she would have done this and pushed harder when I was a kid as she very much has, I guess you would call it brand loyalty but it went further than only grocery shopping at Meijer, literally fighting with me for years about leaving Verizon because in her mind Verizon was the only company that was any good, only allowing one person to cut her hair even if it meant following her to a new job, she had a doctor she liked and stayed with him for most of my life and denied he wasn't a good doctor after an incident in high school which caused me to switch. It's hard for her to move on even if there is no progress or things start to get worse so one thing I wish is she would have done a little more doctor shopping when I was a kid.

Doctor shopping is oftentimes frowned upon at and when most people hear of doctor shopping they tend to think of it as someone who goes from doctor to doctor looking for drugs or or to sign disability papers so they can get a free ride at life but when you have a rare disease doctor shopping means something totally different and can even be so vitally important your life and future depends on it. I had so many doctors who simply invalidated my symptoms saying I was making them up for attention or had a mental illness. Many of these doctors did nothing at all but the majority of them did the exact same tests over and over. If it was a doctor outside of the hospital they did a CBC, Chem. and a 7 (Basic Metabolic Panel) which always came back normal or borderline normal therefore they deemed me healthy, slapped a psychiatric disorder on me or simply said there's nothing wrong and sent me on my way,

If I went to the hospital, they would do the CBC, Chem. 7, accuse me of doing drugs or being pregnant or when I was really little bring in case managers making accusations of child abuse that wasn't happening, then do a drug test, pregnancy test and STD testing, say the CBC and Chem. 7 were normal or near normal, congratulate me on not being pregnant, having any illegal substances in my system or STD’s, slap a psychiatric disorder on me saying they tested everything and sent me home. When I got older, lucky me, I got two drug tests, the urinalysis drug test and when it came back normal, they would come in and draw my blood assuming if I was having seizures, passing out or having heart palpitations I must be on drugs and tampered with the urine test. I wish prior to my diagnosis my dad would have had a computer and learned to use it and both my parents would have done more research. I also wish they had advocated for me better and if one doctor said they didn't know or didn't believe me, they would have moved on to another doctor because if I could have gotten diagnosed sponsor it would have saved me some permanent damage to my body that I have now and possibly spared me some of the medical abuse and neglect though even with a diagnosis you can't avoid it, especially when it comes to the hospital.

Doctors and nurses are just as lazy as everyone else. It's just like every other job where 5% of the employees do 90% of the work and 90% of the employees do 5% of the work. The ones who actually take their jobs seriously are used to the max by their coworkers and like me when I was a nurse, didn’t believe the patients deserved to suffer or pay for their staffs laziness and neglect and those are the ones who try to play superman taking on their patients and everyone else's, answering call lights that aren't theirs, bringing food to others patients, making sure they are turned or their catheters have been emptied and generally running around like a chicken with their head cut off and I can always tell who falls into the 90% who uses the 5%, carrying less about the patient as long as they get a paycheck and the 5% who look like they are about to fall over yet still giving what they don't have to make sure the patient doesn't pay for their lazy staff member.

It's very easy to tell when you have spent a large portion of your life in doctors offices and hospitals and learn how rare it is to get one of the people in the 5% as your medical personnel and watching the lazy staff you have out your door at the nurses station sitting with other lazy staff in front a computer laughing at a YouTube video their watching, gossiping and talking badly about another patient loud enough for you to hear, playing pranks on each other, one nurse who drops her pants moons another in a room of 9-11 year old little boys, The nurse who has the pediatric patient who flat lines, on bad days, it's not uncommon for this to happen 20 times in one day and at their best, at the very least multiple times a week. The patient's vitals are linked to a pager the nurse carries so if the patient's heart stops the pager will alert them yet they consistently leave the pager in the patient's bed, on their night stand, at one of the computer kiosks where nurses chart, in another patients room, in the activity room or god knows where. I've found it in the bathroom on the toilet paper mount, in the linen closet on top of some towels, you name it then this same nurse who is buddy buddy with the nurse slips away with a coworker to the activity room or to the nurses lounge for you to later walk in on them playing cards and talking bad about patients or other staff. The two nurses going through a wedding magazine, looking at dresses and hear one say “That's my room”, and the other one say “Just ignore it and let Janett get it” Yes these are true stories down to the name used for the poor nurse who was running around like a chicken with her head cut off. All experiences I have seen either in the roll of the nurse and in the roll of the patient.

I was mostly around nurses and of course you don't see doctors very often but being in a chair I have been forced to use a bedpan before and seen examples similar to this with doctors as well. Once I was taken downstairs for a cardiac ultrasound, asking to go to the bathroom before they took me down because I had my call light on to go before transport even came in my room. They told me I would only be down there 10 or 15 minutes and asked me if I could wait. They took me down there to beds of people lining the halls and I had 18 people in front of me. Well, 15 minutes turned into 4 hours. I asked multiple times to go to the bathroom and they said they don't have a wheelchair down there and if I can't walk to the bathroom I have to hold it. I even asked if they could call up to my room and have my mom bring my chair down and as gross as it sounds, I even got desperate, breaking into a sweat I had to pee so bad and asked them to wheel my bed outside the bathroom and lower it as low as it goes, and I would put my blanket and pillows on the floor and slide out of my bed onto the floor myself and they can pull me on the blanket to the toilet or I could army crawl and use my arms to pull myself up onto the toilet. They still said no. I asked earlier on if they could take me back to my room or bring a wheelchair, still no.

Eventually I told one of the nurses that I had to pee for 3.5 hours, she saw that I was all sweaty and shaking. I said if they don’t get me somewhere to pee within the next few minutes they were going to have a huge mess to clean up. She grabbed two bedpans, a small one and a bit one, said you're tiny and I told her no, use the big one, I have EDS so my bladder can stretch really far and I can easily pee 22 oz. so she rolled me into a doctor's personal office, he was in there watching a movie on Netflix on his computer, yes a full blown Netflix movie. He tried to flip the screen back to an ultrasound image really quick when the nurse stormed in with me to make it look like that's what he was doing but he fumbled around a little bit and wasn't fast enough. The nurse told him to get out so he left and I had to pee in a bed pan in his office… then spent the next few weeks having to wear diapers for bladder leaks because they let me hold my bladder so long my bladder stretched out too much from hypermobility and it folded on top of itself resulting in bladder leaks until it shrink back down. Thank you OSU. Doctors can also be extremely lazy and I wish this was something my parents acknowledged more or took more notice of and fought more for me, looked more into my rights, such as being able to call a patient advocate or fire doctors and nurses which is something I had to find out myself.

I found out I had EDS before I was even diagnosed which is what made me fight so hard to find a doctor who has heard of it. I got desperate being sick and spent years learning how to find and read medical journals. When Facebook started having groups I started joining groups to ask questions, I started going to doctors and no longer letting them call the shots. If they said they wanted to do a Chem. 7 and CBC I would say that's fine if they want to but it will come back normal and start requesting tests that aren't considered standard and that are used to test for specific conditions rather than just evaluating me for acute conditions. I started walking in and telling doctors how I felt and when they either said well we will see you in a year to see if things change or wanting to run just the basic CBC and Chem. 7 I would start saying “Could you run a 24 hour Tryptase Urinalysis”, “Could you run a gastric emptying study”, “could you run a 24 hour urine for Cortisol levels”, “could you run an ELISA”, “would you write for a flexion/extension MRI with contrast”, “What about a rotational CT” “Everyone wants to do a colonoscopy but instead of ordering that can you order an Endoscopy this time?” “I would like to get an “ATCH Stem test”, “I know you have never heard of one but if I email you the information will you order a Tilt Table Test”, “You’re doing that Aortic Ultrasound without contrast? It’s supposed to be done with contrast. Could you call up to the doctor and ask him to add contrast before you start?”

Sure a lot of doctors would downright refuse. I have gone in 5 and 6 times asking for a test and being told no, only to go in the 7th time and be told “It will come back negative but if I order this will you quit bugging me about it?” for them to order it and the test to come back positive for the condition I wanted it ordered for then they treat me like total crap to the point the office staff is mentioning about how bad he is treating me to find out he’s doing it on purpose to try to get rid of me as a patient, probably because he realized what he said was really wrong and he made himself look bad. I have learned that if a doctor isn't willing to listen to move on and find someone who will. You need to find one who is willing to run the test or even just ask if I can email them some medical journals or information about the test or showing the importance of it or why I believe it needs done, willing to learn and if I can prove my case they will order it no problem.

I wish I had someone who started this for me as a child who did the research or helped me do the research to know what tests to ask for and to find a new doctor for me if one was either trying to slap a psychiatric label on me or acted interested but simply refused to run any tests so my care went stagnant. I still wish my parents knew the ins and outs of EDS like I do and really researched it because it makes me a little nervous when a squad is called and they are stumbling over my diagnosis or saying “She has oh, that one heart thing that makes it go really fast. Oh what's it called or only naming like two of my conditions. It also scares me that one day I will be rushed in internally bleeding since things like Aortic Dissection, Carotid Dissection, Mesenteric Dissection, Iliac Dissection or Femoral Dissection as well as uterine and bowel rupture are common and can happen very suddenly in EDS that my parents may not know the common areas for bleeds or know them from most to least common so they may not know where to look or may not realize its actually internal bleeding at all until it's too late.

With all of the craniocervical manifestations I also fear I will be sent in for respiratory distress a or something else emergent relating to my craniocervical instability and my family family won’t realize its from the instability and if they do they wont know where to find information to prove this to a doctor or who the five surgeons in the US are who can operate on it so I will either end up on life support until someone gives up on finding the root of the problem which I knew all along what it was but couldn't tell anyone and pulls the plug, unable to tell anyone what is happening and advocate for myself, die before they even get a chance to hook me up to life support or end up under the knife of a surgeon who has absolutely no clue how to do the surgery I need and what modifications and special precautions need to be made for someone with EDS and I will die on the table like a few others I know or the last scenario, where I will have the surgery, wake up from it and it will be so botched that I’m one of the ones walking around with broken hardware, screws drilled into my spinal cord and paralyzed from the neck down, in more pain than I am now and the damage is too extensive to be repaired.

It's so important for the patient and their family to have very extensive knowledge of the condition since it's very complex and there are a lot of things that can go wrong at any given time. It's important to know what symptoms you are experiencing at any given time are associated with or at least the ability to know what medical emergencies are more common in EDS patients and the ability to narrow it down to 2 or 3 possibilities because most medical professionals don't learn about EDS or learn very little.

Just to put the complexity of the condition into perspective let's say you wanted to buy a book that taught you about diabetes and it was 500 pages long but you wanted to also buy a book on Ehlers Danlos Syndrome and be just as knowledgeable by the time you finish about EDS as you are when you finish the book on diabetes, there are about 15 common comorbidities of diabetes and about 250 common comorbidities of EDS. Diabetes can affect a handful of other organ systems however EDS effects every single part of the body so if you wanted to be just as knowledgeable about EDS as you would about Diabetes after reading a 500 page book about it and its comorbidities, given they were only allowed to give you more basic knowledge of comorbidities, say 10-15 pages per comorbidity, depending on its complexity and the rest on Diabetes you would have to read about 4,573 pages and that's only for hypermobile form of EDS which is broken down into trifecta so I gave 15 pages to each comorbidity of diabetes, were going to assume this book is on type 1 diabetes given there are 2 types of diabetes and 13+ types of EDS so after giving 15 pages to the comorbidities the remaining was for the condition itself. Since hypermobile is usually seen in the trifecta I had to multiple the remaining pages by three then add 15 pages for each comorbidity to get the total number of pages and even this is a very rough estimate since we need to consider how many organ systems are involved in each and how complex the comorbidity.

In most medical textbooks EDS is not listed at all or is only condensed into a few paragraphs at the very most while learning about collagen and connective tissue so if anyone in the medical field learns about it at all its very very little, so little that they can easily forget those one or two paragraphs they read our of the thousands of pages they read during medical school.

Now I know it sounds like I’m talking bad about my parents but that's not the case at all. My parents are incredible and so much better with my condition than a lot of others. They may not know the ins and outs of this but they know I am not faking anything, I’m not exaggerating, they know, especially with my PTSD, that if I go to the hospital I am pretty darn sick and know when to make me go if I continue refusing to go to the hospital. They don't want to talk about it or admit it so will often downplay the fact that death can happen very easily and at any time and I am not going to live an average life expectancy. They may avoid talking about it or downplay it but I know they know just how serious this is but they already lost their son and don't want to lose their daughter so avoid the topic.

They refused to let me be sent to a nursing home or long term care facility when we were told I could no longer live alone and brought me into their house. They help me with a lot of my needs. Heck, my mom has given me baths as an adult because I have been too sick to do so. My mom helped with training Maggie to be a service animal, making sure I made it to all of her classes, helping me teach tasks I struggled with due to being in a chair, using her commands so she gets practice and doesn’t forget what she has learned. My dad not so much. He's a softie that has let every animal we have ever owned, own him. If it were up to him to do the training, Maggie probably wouldn't even be house broken yet if I’m totally honest lol. They have taken on so much with me and though I appreciate it more than they could ever know I also feel terrible guilt surrounding all that they do.

They have to drive me everywhere. The safety of public transportation in America for people on Medicare is downright deplorable. Only one agency contracted by Medicare has seat belts for wheelchair users, most of the vans are from the 90s and not up to code. They are actually so old that someone who is disabled isn't even allowed to buy one for personal at the age the ones the state provides transportation in here in Ohio because they don't meet the safety requirements even for the minimum amount of insurance yet a cab company is allowed to purchase and insure them to transport the disabled in. Its one of those things where it's illegal for the members of the state but the rule doesn't apply to the government kind of things. Their extremely dangerous, I have been in ones in my 425 lb. wheelchair, with my112 lb. self my 17 lb. service dog in her one or two pounds of gear and a backpack on the back of my chair with my meds and maybe some food and a drink in it to take to a doctors appointment so maybe another 10 or so lbs. of weight, riding in a van and staring through the rust holes in the floor looking at t the rusty parts under the van and the pavement of the highway underneath me, hoping to god the floor doesn't give way to all of this weight so I don't fall through.

I've been in two accidents with drivers, most of these drivers smell of mamajuana when they come and one of them had a rink that had a little tiny canister on it (If I remember I’ll post a picture I secretly took of it” at a stop light he opened the little can, poured white powder into his hand, used his other finger to brush it into a pile in his palm and then snorted it up his nose. I have ridden in vans someone threw up all over, one that the door to the wheelchair lift had 3 of its 4 hinges rusted all the way through so when the driver opened the door he had to hold it with one hand because it was hanging on there sideways like a broken cabinet door with only the bottom hinge still attached, got me up the lift then shut the door, came inside and used a bungie, hooking it in a hole that it looked like was drilled into the door and then a natural hole where the raised roof of the van and the bottom of the van attaches in a hole that didn't have a bolt. It was a really windy day and on the way back, we were driving down my road, a gust of wind blew, the bungee snapped, almost hitting me in the face, the door flew open and the last hinge snapped with the door flying off and into the gutter along the side of the road. We were right down the road from my house and the driver casually said “I'll go ahead and drop you off first and grab that on my way back.” like that kind of thing happens every day or something.

I have had a driver ask to stop at a gas station and I told him that was fine thinking he needed gas. He pulled up beside the end pump and instead of getting gas we sat there for about 3 minutes when another guy in a red truck pulled up along the side of the building. The driver got out of the van and went around the side of the building where the truck was. All I could see was the back of the truck sticking, about a minute later my driver came out from behind the truck, sticking something in his front pocket, the truck left and then we left. I was hoping to god it was just his brother or roommate or someone giving him some money for lunch or something but for real, a wallet goes in the back pocket and what he had was smaller than a wallet since you couldn't see what was in his hand and most people carry plastic these days so I’m pretty sure I was just hoping it was lunch money out of wishful thinking because with along the side of the building out of view of most of the public and all it seemed pretty sketchy to me.

Anyhow my parents do a lot, they drive me to appointments when they can to try to keep me out of the appalling care of the state, they let me live with them, they provide a lot of care, cooking, doing my laundry, vacuuming and doing a lot of the things that I feel like I should be doing for them at their age. It really does make me feel extremely guilty and like a terrible person. They help with Maggie taking her out just to help me out even though I can usually take her out myself unless it's icy or snowy since she basically takes herself out lol. I can go in the yard with her in the late spring to early fall when it's warm and dry out so my power chair won't sink into the mud. They will pick up food at the store or meds for me they do a lot and with my mom having EDS too, I have seen my mom go down hill a lot since her botched surgery that left her on life support so I hate asking either of them to do anything or for help. My dad is almost 66 and my mom, though 8 years younger gets around worse than my dad does so it's really hard to need so much care and feel like I put it on them, especially when my home health aid was taken away when the pandemic started but of course most of the home health aids I had were so English incompetent's and fresh out of countries where they didn't have stoves or washers and dryers and what not, living in huts that they don't know how to use modern appliances or understand me when I relay my needs which actually made things oftentimes harder with a home health and than without one as my parents were always coming home to fixing messes the aids made too.

With all that being said, here is my advice to parents of kids with suspected EDS. Get them diagnosed as early on as possible. Do lots of research, I know it's a pain and may be a lot of work but the more you know about the condition the better. Don't stop there, learn your rights and laws around medical care and disability rights as well as techniques for advocating for your child. Get them on a 504 plan at their school so they can get the accommodations they need. Learning disabilities aren’t uncommon and the prevalence of high functioning autism is incredibly high in EDS patients so if you suspect they may have a learning disability fight for a diagnosis and have that added to the 504 plan. A 504 plan isn't just for learning disabilities, it can be for physical disabilities as well.

You don't want to caudle you child of course and many don't have a lot of severe symptoms as kids but make sure the plan accommodates for things such as food allergies, if they have POTS or low blood sugar make sure they have it in their plan to be able to bring their own food, be able to eat in class. I know on mine, I was allowed to use the teachers lounge microwave during lunch to heat food brought from home and they allowed me to use the bathroom in the nurse's office if I needed it. You can ask for things like that they not be punished for arriving to class after the bell within reason, especially if the school is large and they may have several classes on the opposite side of the building as their locker so they aren't forced to carry books for multiple classes or for them to have two sets of books, one that they keep at home and one that is in each classroom they attend class in so they aren't having to carry heavy books around or teased for having a backpack on wheels. This is one thing I would have really liked to have written into my IEP as a kid if I had been lucky enough to get diagnosed sooner. If they are more symptomatic, more prone to injury or have VEDS they may have more needs.

Again you don't want to be a helicopter parent and want them to do as much stuff for themselves as it is safe for them to do and want them to have all the experiences other children do but if gym is an issue you can request they don't participate in high contact sports or even have it put into their IEP that they can swap gym out for another elective like music, art or home economics class or in the lower grades where they may not have options for alternative electives you can ask if they have any teachers or aids available during that time frame who can create somewhat of a study hall for the younger child, helping them with their homework, studying for tests, able to sit there and let the child read a book to them and help them with any words they struggle with or even just play some educational games with them or let them play an educational game on the computer.

Some schools also offer physical therapy for kids, especially the ones with developmental delays who may not be mainstreamed and the therapy replaces gym for them. Even if your child has cognitive abilities cohesive with their age, you could see if they are allowed to join therapy with those children. With being able to do so much online now, I have heard of some requesting that on their bad days the teachers live stream them into their classroom so they can participate in class from home when needed or if the child needs a surgery or has a doctors appointment they can live stream in instead of going to school or live stream in part of the day before or after an appointment, going to school the other half of the time. You may also request extended time on homework like instead of turning it all in the next day, ask that they have the week, for example, they have to have all homework turned in from that week by the following Monday so say they are having a really bad day Wednesday and in a lot of pain or very fatigued and can only get their math homework done but not their English, science and history. They will be able to work on that homework throughout the week possibly adding the English to their Thursday homework, the science to their Friday homework and catch up on the history over the weekend so they at least aren’t failing or losing credit on homework if there are a few days a month where they are really struggling or not feeling well.

Another reason I suggest learning everything you can and really fighting for a diagnosis early is because if you work you are more likely to have a PPO insurance plan which covers a lot more than Medicare. You can get some things that Medicare won't cover out of the way in case the child has a possibility of being disabled as an adult. Genetic testing is one thing you really want to try to get done as a child as hospitals in some states like my own will not do genetic testing for EDS on adults unless they have another family member who has tested positive for one of the rarer forms of EDS.

You don't want to be in the situation I am where you have four doctors sure you have Vascular form and have been fighting to get you tested, your brother died before he had any testing, your uncle had an aortic aneurysm and died never getting diagnosed, you were referred to a geneticist who won't test you because you are under 21 and no one in you family has tested positive on genetic testing for VEDS, your mom is referred to genetic testing after coming out of a coma and being on life support after a major organ rupture that almost took her life and turned away for the same reason and your grandfather is referred and turned away leaving multiple members of the family suspected of having EDS but no one able to be tested because we are all over the age of 21 and I can’t have children nor would I want to because of the fear of passing this down to them there will not be anyone under the age of 21 to get tested in order for us to get tested so your stuck without a diagnosis. This is why you need at least a hypermobile diagnosis so you have time to fight for the genetic testing to ensure it isn’t a more serious type, especially if a doctor suspects it.

If your child has severe enough symptoms you can also get them listed as disabled under the state in order to get extra financial aid to cover medical needs not covered or special equipment like gait trainers or possibly a power chair for school and a manual chair at home It can cover the cost of tutoring and several other things insurance may not cover. If they grow up and work for so many years and end up getting worse, needing to go onto SSDI their SSDI it will also make it so that their payout will be higher if its on record that they were disabled before the age of 18.

Having a child with a complex health condition, especially when the condition is rare can be a lot of work and very stressful at times. Definitely learn everything you can and fight for a diagnosis for your child. If you suspect you may have the condition fight for a diagnosis for yourself as well. The sooner anyone starts treatment and can get regular screenings such as those for aortic dissection the more they can prevent damage early on and also prevent life threatening complications so that’s my advice to any parent out there.

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