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June 16, 2022 (Tommy: 18; Drista: 15)
Her best friends keep dragging her places, pulling out their phones and pulling up streams on Twitch. The latest obsession that seems to have overtaken the internet during quarantine. And whenever they shove their phone in her face she has to squint to see what's going on. Sometimes she has to listen to a playback of herself and silently pray that her friends don’t recognize her voice. Because she couldn’t possibly be Dream’s sister. They’ve met Clay, granted they haven’t seen him in a while, but he’s not Dream around them.
And right now, one of them is pulling her out of the study hall room and into the bathroom. She was studying for her bio exam for fucks sake; why are they bothering her with this right now? Then she sees the title, and she’s listening to Wilbur speak. And all that can go through her mind is: “are you FUCKING KIDDING ME?” But she doesn’t say that, she just goes back to the room to study for her test.
God, she really can’t handle junior year.
The first thing she did when she finished her bio exam, god that fucking thing was hard, was pull out her phone and log into her brother’s discord account. He really should’ve chosen a better password. They just ended stream and she’s just done with these shits. She calls the person she’s most upset with. And as soon as he picked up, she started screaming.
“TOMATHYINNIT!!! YOU ABSOLUTE DICK! WHY DIDN’T YOU TELL ME! YOU TOLD DREAM, DREAM, BUT YOU DIDN’T TELL ME!!”
“He-ey Drista, how was your day!” Tommy’s voice wavered.
“Oh, it was great until my best friend pulled me out of my study hall because her favorite streamers were having a serious,” she made sure to convey the hand gesture she made with that word, “stream about some topic and I just had to watch it live. I was studying for the bio exam, you idiot! Do you have any idea how important that test is?! But nooooo, Tommyinnit had to tell the whole damn world that he had a set of soulmates, fucking soulmates, 47 minutes before my EOC!!!” She was out of breath now, panting.
“So….how was your exam?”
“Are you kidding me? I had to take an Adderall to focus on that damn test!”
“And how do you feel about the news?”
“Oh, I’m happy for you. Also, extremely jealous that you got to cheat on tests simply by long-range telepathy. Do you know how useful that would have been? Trust me, junior year sucks. Why did I take so many AP courses?”
“Thank you?”
“Your welcome, you fuck.”
July 4, 2022 (Tommy: 18; Drista: 15)
It’s two weeks before she talks to him again. And in that two weeks, school had gotten out for her but another thing happened. A slightly more important thing; well not important per se, but somewhat disappointing and another shit thing she had to deal with. She’d had another seizure.
It’s not like she knew it couldn’t happen again. Hell, she had myoclonic ones all the time. But, it had been almost two years since a big seizure, a tonic-clonic, Grand Mal, whatever the fuck you want to call it.
She’s not ashamed of it, she’s practically used to it at this point because it’s been happening for eight fucking years. Not the big ones, just the little ones. The eye-fluttering has been the one constant in her life for eight years; the medication; the fight to get teachers and students to understand. How sad is that? She has to advocate for something that should be obvious in order for her teachers to work with her when she misses class because she’s stuck in status epilepticus and can’t fucking think and shouldn’t be near stairs.
She can’t even drive now. The state takes away an epileptics license if they aren’t seizure-free. And she has to visit her neurologist more now. The only blessing is that her mom basically isn’t letting her out of the house so she doesn’t have to see her friends, are they really even her friends? They’d pretty much stopped talking to her altogether when she had been caught up in exams and make-up work for the last month and a half of school.
It doesn’t matter now, because her brother is actually letting her stream from his account. He’s seen how depressed she had been; how upset she was that she couldn’t control this thing; the eyes she feels on her when she walks up a set of stairs (for fucks sake she learned that lesson on Grand Mal number two); how she feels like a child when she’s not allowed in the pool and how her mother has to stay near when she’s in the shower because she could have a seizure and drown. So, he’s starting the stream and the only other person online is Tommy. Funny.
She can hear them talking and then she’s putting the headset on and sitting in her brother’s chair. Talking to her friend. Insulting him. It’s fun; she can see why these people thrive off of each other.
And then she can feel it. The haze comes over her as she struggles to keep her eyes open and continue talking coherently. It’s bad, not enough to cause a Grand Mal bad, but bad. And her brother isn’t in the room, and she’s having a fucking seizure (granted she’s not screaming and convulsing but still) while live to the entire internet.
She hears another voice, not her brother either. Wilbur, and he seems to know what’s happening or at least can grasp the basics, and she’s trying to say she’s okay. She’s not. How the fuck did he know anyway, she’ll have to come back to that line of thought when she can actually string two sentences together.
Tommy’s worried and then she hears Sapnap come into the room. He’s getting her away from the computer, away from the blue light emitting from the screen, ‘cause fuck, she’s photosensitive. He’s speaking and ending the stream. Distantly she can hear Tommy doing the same. And fuck, why did this have to happen to her? Why now?
And then she’s taking her emergency medication and she blacks out.
July 6, 2022 (Tommy: 18; Drista: 15)
It’s two days later that she gets to explain. Oh, why did she have to explain? If she does that, someone would figure it out because they would be walking on eggshells around her. Someone from her school most likely. But she sees their faces, the soulmates (well three of them at least), in front of her and they can see hers. Sapnap is next to her and Dream is on the call from the bathroom.
“I want to explain what happened the other day. It’s hard though. But you deserve to know what happened. Hell, you probably alerted them as soon as it started via your telepathy thing.”
Wilbur laughs, trying to lighten the mood. It works, a little bit.
“You’re starting to sound all dreary and shit. Like you almost died.” That’s Tommy.
“Well, you’re not wrong. I could have, it’s unlikely but I could have.” She smiles, knowing she still looks like death. She’s got her hair up in a messy bun, with no makeup on her face (not that she usually wears any), wearing a hoodie and sweatpants. Her cheekbones hurt and she feels tired despite the amount of sleep she had. But had it really been sleep though? She hadn’t dreamed; well at least she didn’t remember dreaming. And she always remembers dreaming, meaning she didn’t enter REM and didn’t actually sleep. She’d been stuck in that state for a full 33 hours.
Phil finally breaks the ice, “what happened?”
“You know how Tommy has hypotension?” It’s rhetorical but they nod. “And how could he pass out if his BP gets too low?” Again, they nod. “Well, I have something similar but not really at all. I could still pass out from low BP, and even low blood sugar, but for me, it wouldn’t really be passing out. It happens when I forget to eat; when I don’t get enough sleep; when I get too stressed; if I’m sick; if I eat specific foods; if I accidentally take the wrong medications when I’m in pain; if I stare at screens too long; if I overheat; if I see flashing lights; if my cocktail of medications isn’t correct; if I forget to take my meds; and one day, it might happen because of alcohol. Basically, I’m fucked any way you look at it.”
She sees realization dawn on Phil’s face first. He gives her one of those pitying smiles.
“What I’m trying to say is that for seven of my fifteen years on this planet, I’ve been having seizures almost weekly.” There it’s out. Well, some of it at least.
“Seizures? As in the pass out, stiffen, and shake seizures?” Wilbur looks annoyed at Tommy’s words and she can actually see the interaction between the two. Talking via thought.
“Well, yes. I do have those, not as often though. What happened the other day has been happening since I was eight. I was having myoclonic seizures, absence seizures.”
She can see them typing, and realizes it when the definition shows on google. “Before you read anything, I want to clarify a few things.”
“First, you won’t find much literature on my specific type of epilepsy, Jeavons Syndrome, or as it’s officially classified: Epilepsy with Eyelid Myoclonia. And before you go getting worried that you haven't heard much about it before, I can tell you from experience, literally, no one has. It is one of the rarest and most underreported epilepsy syndromes. It’s not even completely accepted as a definite syndrome by the ILEA, so legally I have Juvenile Absence Epilepsy. Also, despite the fact that epilepsy, in general, is more common than Parkinson’s disease, autism spectrum disorders, cerebral palsy, and multiple sclerosis combined, most people know practically nothing about epilepsy other than the fact that seizures can be triggered by flashing lights,” she can see Wilbur’s lip twitching, “hell, I didn’t know that it even existed until after my second Grand Mal, when we went to a neurologist, looked at my hospital records, and he diagnosed me within 30 minutes.”
“Wilbur; and I’m probably going to sound rude, but in that stream where you freaked out because there were flashing lights or some such thing in a youtube video you did your calculations wrong. While one in 26 people do have epilepsy, only three percent of epileptics are photosensitive. I just happen to be one of them.” Again she smiles, “in reality, you probably only caused issues for people with vertigo, which is even a less common trigger.”
“Anyways, do research if you like, and if something doesn’t line up, come ask me. The websites give really conflicting information.”
They smile and affirm her hope that they will look into her issue. She feels a little bit lighter.
Tommy calls her that night, she must have scared him. “Are you okay?”
“Yeah, I’m fine. It’s been happening for over half of my life, I’ve gotten over myself.”
“I did look at some things, but they all talked about it from a purely objective, scientific stance. How did you feel? When it was happening?”
“It’s kind of like this haze. Like you’re seeing everything with blinders and your brain is taking too long to process words. My eyelids ache, and I can’t see anything because every two seconds I’m having a seizure. I’m sorry that you had to listen.”
“I’m sorry that you had to go through it.”
“At least you didn’t have to see it.”
He’s silent for a moment. “What does it look like? The big seizures?”
“I can only tell you the before and after from my perspective. But, I’ve watched three of my seizures back because they got caught on video. It’s scary. I fall to the ground and just start shaking. If it lasts long enough, my lips turn blue from lack of oxygen, and sometimes my mouth starts to foam. I’ve screamed before. But I don’t remember any of it. I have perfect recall right up until it starts and then after I wake up, which is odd considering I’m usually in a myoclonic aura all day.”
“How do you deal with it?”
“Long term? I take my cocktail of medication and vitamins. The vitamins because one of the seizure medications messes with my hormones. I have to take B6 in order to counteract how Keppra affects my emotions and mood. I have to take prenatal vitamins so that I can have kids someday because Keppra also messes with my reproductive system and makes it more likely that any children I have won’t be normal. God, I was 13, taking birth control and prenatal vitamins at the same time. You probably didn’t want to hear that.”
“It’s fine. It sounds like you need to let it out.”
“Thank you,” she breathes. And lets the words flow out of her like water after a dam breaks. He listens and he understands.
November 25, 2022 (Tommy: 18; Drista: 16)
The streamers start putting up flash warnings if there is a chance someone could get triggered. They advocate for her in little ways, not drawing attention to her. Some people have guessed though. It’s not particularly hard to deduce, she’d seen the Twitter feeds and the Reddit threads.
That November, they all wear purple while they stream. Nikki even dyed her hair purple. And some of them even change the accents on their skins. Somehow, it gets on the news in the UK.
Over the past few weeks, the Minecraft YouTube community has banded together for an unlikely cause. And their fans figured it out almost instantly. They’re silently taking part in Purple Month.
Purple Month?
International Epilepsy Awareness month. They’ve all added purple to their wardrobes in some way or another. And while it’s obvious now, they still haven’t spoken on why they're doing it.
And when they play MCC, most people hold charity streams. Donating to various organizations that focus on epilepsy. It’s the most attention that the disorder has been given since that Disney star died a few years back. A new Rocket Spleef map got added: it was filled with purple butterflies.
She cries while watching, and donates to Tommy because she knows he’s the one that set this up. That put the idea out there. Her message is short and simple, sent from her own account. It reads: I’m crying, Thank you - Drista.
He hears it and salutes. “You’re welcome.”
The chat goes wild.
May 3, 2023 (Tommy: 19; Drista: 16)
When they restart the OriginsSMP, she joins as herself. She doesn’t stream it, she just joins their streams. She didn’t know that they were adding it, but when she gets sent the mod pack she finds an origin they made for her: a butterfly.
“Welcome back Drista!”
“Hello, Tomathy,” she hears him groan, “What? It’s your name.”
“Fuck you.”
“Love you too, bitch.”
June 11, 2023 (Tommy: 19; Drista: 16)
She tells the world the following summer, with Tommy of course. And he speaks about his hypotension and social anxiety. And Ranboo talks about his facial dysmorphia, while Will talks about his thyroid issues, hypogeusia, anemia, depression, and sensory overloads. Tubbo talks about his struggle with dyslexia and sleep deprivation. Nikki also joins, talking about her anxiety and eating disorder. And Minx joins her in talking about her own epilepsy, and she doesn’t feel so alone anymore.
And, she’s one in 65 million, but she has some influence. Can raise awareness. Can make it required that teachers get training for how to deal with seizures in first aid, because lord knows that chest compressions are the last thing a person needs while seizing. She shares her story, becoming an advocate for her disorder. And the day she gets put on the list of famous and influential epileptics, up there with Cameron Boyce and Prince, she cries. Happy tears.
She hasn’t done a lot of crying in her life, only when in pain or when she reads something sad. She didn’t cry when her dog died; when she had her first seizure; when her best friends gave up on her, spewing bottled up hate at her because she stopped interacting as much during the winter. Not real tears at least, they were mostly tears because she felt like crying was expected of her. She’s not had a lot of happy stuff happen in her life so she hasn’t really experienced happy tears before. Except when she cried during MCC.
She cries a lot over the next few years.
(She blames Tommy)
She cries when, at 18 and a half, she changes the laws in the U.S. that govern epilepsy and driving; to give them the freedom she never had. She cries when she gets the public education system to recognize how epilepsy affects their students just as much as ADHD and to give students opportunities to complete assignments late, to accommodate their needs, and to make teachers learn that it isn’t something that can be faked and it isn’t an excuse.
(She does, however, laugh in her calculus teacher’s face when she gives a speech at her old high school; makes an anecdote about a teacher plastering a smile on their face while not understanding or even trying to, the teacher who compared a 15 year-olds life-threatening disability to an old man’s leg twitches. She smirks in the woman’s direction and that leaves the entire student body wondering. Her old teacher retires that year, once the students and staff deduce what she did. The woman made her bed, and after six years she gets to lie in it. She shows exactly what happened when she seized in the middle of the hallway, actually pulls up the video from the security cameras, she tells the students that she had that seizure in the hallway not but 50 feet from where she’s standing. And she hugs the assistant principal’s daughter, who she had known had epilepsy because the little girl was born with the disorder, and she cries).
She cries after she finally gets her Disabled Students Protection Act passed in the Senate.
She cries when seizure training is made a requirement for teachers and students around the country. She cries when one of her colleagues passes from SUDEP.
She cries again when the medical board finally (finally) recognizes Jeavons Syndrome as a type of epilepsy. They did it, her found family and the community. They made such a fuss and stirred the pot so much that they actually managed to get a medical diagnosis confirmed. And when she gets a new neurologist, she tells them what type of epilepsy she has, what she was first diagnosed with when she was 11, and he’s skeptical at first; until she pulls up the official statement the medical board made. The speech she gave where she talked as herself, and not Dream’s sister, to finally convince them that her struggle was real. The doctor believes her.
She’s happy and she’s okay, and she doesn’t have seizures as often. And she feels free. She still has seizures, she always will, and she ensures that each and every one of them impacts the world enough to cause change. She’s 1 in 26 people, 1 in 65 million, 1 voice; yet she made it happen.
And when she’s 20, she finally meets her best friend. Her advocate, her person. And if he didn’t already have soulmates, she would have sworn she was his. Maybe he’s hers though; it doesn’t really matter because when she cries into the blonde’s chest, as he strokes her own golden locks, she feels at home. And the whole world watches.