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#epileptic representation
silver-stargazing · 2 years
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Epilepticon Day 2: Representation
I’ve mentioned this before but there is a significant lack of epileptic representation in both Adult literature and in Children’s films/tv shows. Ideally, my epileptic rep would come from either of these two fields.
For my ideal epileptic rep, I would love to see more diversity in epileptic experiences. A lot of rep covers some fairly well-trodden ground (i.e., epilepsy caused by flashing lights, tonic clonic seizures, basically anything that people first think of when they think of epilepsy).
I would like to see more rep that talks about the impact of epilepsy on specific people, both the good and the bad, like:
Someone who has to stay awake for an extended period of time to have an EEG (this is my personal fave as this could go in so many directions. Comedy, drama, horror, who knows what will happen when you’ve stayed up for 72 hours straight!)
A racecar driver who gets their kicks driving super fast and has to find new ways to achieve the same kind of thrills after being barred from driving
A teen who can’t participate in the swimming portion of gym class and makes friends with the other kids sitting on the sidelines
Someone with temporal lobe epilepsy who has to find a way to prove they have epilepsy to their neurologist, no matter how many times they get written off
IDK I just want something more than what we normally get, which is usually someone having a tonic clonic seizure and then receiving some very basic first aid info. I know that’s still very important to show but there is a wealth of experiences that aren’t being addressed when we limit rep to just seizures and first aid.
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lxpinwrites · 2 years
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Hello!!! This story is called Moonstruck, and it is the one that means the absolute most to me - out of perhaps everything I've recently written. It's based off of @fayths-art 's Light and Shadow (in-progress), but I took the characters and damnified them.
There's some TWs that I'll tag, because I'm unsure if writing them in-post is a good idea. I've got no idea how Tumblr works anymore.
I really, really hope someone enjoys this half as much as I did, though it was a very difficult thing to write.
(second link because I do not trust Tumblr to not eat it)
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haikyuupaladin · 5 months
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Under The Lights, the short film by Miles Levin about a boy with epilepsy and his experience at prom is going to get a feature length film version if they can hit their crowdfunding goal!
This is one of the biggest attempts at an epilepsy awareness campaign in a while. And the short film was brilliant. They managed to convey the idea of the photosensitive trigger visually in the film without ever actually risking triggering photosensitivity.
If you want to support it, you can do so at the link below:
Link
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sshonuu · 25 days
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People with physical health issues, what do you think about making a group of us, to support each other? We could also make some representation to spread awareness about our illnesses! Just tell me where you'll be comfortable to chat! And also, there's no matter which diagnosis you have, because we'll represent every physical health issues!
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sirislayer · 10 months
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youtube
Unrequested Media Commentary - TAZ Graduation's unintentional, but brilliant epilepsy representation
Hi so - uh. It's done
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epilepsysucksass · 6 months
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So in my spare time, I like to write. And what with epilepticon and all of the prompts and submissions, now I'm really wanting to write something that includes a character with epilepsy, but I honestly don't know how to go about it. I don't want the whole story to center around epilepsy though, but I do want it to have a pretty big part. I *might* use my own real life experiences as inspiration with my absence seizures. If anyone has any suggestions, ideas or literally any advice, I'm all ears since I don't even have an idea yet
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justepilepsy · 1 year
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I'm so sorry that people are once again missing the point of your spiderverse posts. You do not deserve to be called mean things for pointing out the inherent ableism in the art direction of those films. Thanks for your posts!
Aww thank you for your kind words!!!! I will say, I usually do not put these posts out there, unless I am willing and able to deal with people like this. I understand feeling adverse and riled up by reading "fuck your favourite movie that has brought you a lot of joy" as part of the first sentence, but also I think the rest of my post was fairly nuanced given it's opening line. Fun fact: I will also admit... I woke up, saturday morning and had angry eyebrows and thought "I wanna start shit" and I was fully ready to just post "fuck spiderverse because it has ableist art direction" - but as always re-reading the post I figured adding nuance and context may be more helpful to the conversation... so honestly, I think the post is mostly a calm statement with an attention-seeking Opening line. Thank you again for your kind words and support! Maybe i should do these posts on LinkedIn instead of tumblr, in the hopes that anyone at Sony may actually see this... Rest assured - i am more amazed and amused by people threatening me over an opinion on art and what makes a good consumer oriented product.
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In light of the recent awesome development with a charity spokesperson (more on that soon), just wanted to say thanks to everyone who has shared their stories with me, donated and raised awareness through reblogging my posts and spreading the word to friends and family.
I have big plans for the Someone Strong Project and next week is just the beginning.
If you have, or know someone who has ToF and/or Dandy-Walker Syndrome, please don't hesitate to reach out.
Love y'all x
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trentfrederic11 · 2 years
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Steve has epilepsy because I say so
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anotherspnfanfic · 1 year
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Surprise Visits
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Pairing: Eddie Diaz x reader
Word count: 2400
Warnings: seizure, epileptic reader, possible inaccuracies
Summary: Eddie shows up unexpectedly. Reader is glad he did for more than one reason.
A/N: This is only my second time writing for Eddie and last time it was a co-write. I did a whole bunch of research and had some proof reading from the lovely @thatonewriter15 and @muchamusedaboutnothing. Hopefully this is a somewhat accurate representation... 🤞🏻
Trudging up the stairs towards her apartment, she cursed the elevators for being broken. All she wanted to do was collapse into her bed and sleep for two days. Unfortunately, that was impossible since it was only Wednesday and she had an important meeting first thing in the morning.
Passing the third floor, she considered if she was going to eat before she went to bed. She was starving, but cooking seemed like too much effort and time. Then she considered having something delivered but guessed that would take even longer than cooking. She decided to just eat a spoonful of peanut butter so that she wasn’t battling hunger while trying to fall asleep.
Finally reaching the fifth floor, she exited the stairwell and took the four steps to her door. It was a small victory for climbing the stairs— at least she didn’t have further to go once she got to her floor.
She unlocked the door and pushed it open. Immediately, she dumped her purse, jacket, and laptop case on the floor beside the door before pulling her shoes off one at a time to drop in the pile.
Rounding the corner into the living room, she gasped. Her favorite scented candle was lit on the coffee table next to several containers of Chinese take-out. Eddie stood from the couch as she approached.
“What are you doing here?” she asked as she let herself fall into his embrace.
He pecked a kiss to her temple as he pulled back to look at her. “You sounded a little overwhelmed when you called earlier. So I had Buck take Christopher for the night, and I brought you dinner.”
Tears welled in her eyes as she was overcome with emotions. “I love you. You are the best. I was about to eat some peanut butter because I’m too exhausted to cook or wait for delivery.”
“And let me guess, you’ve barely eaten anything all day?” he chastised.
She shrugged. “I had a bagel for breakfast.”
He pulled her over to sit on the couch. “I’m glad I came then.”
“I’m really glad you did.” She grabbed a fortune cookie while he started to open the other containers. “Are you staying all night?”
He nodded. “I’m all yours. Buck is taking Christopher to the zoo tomorrow.” He dumped some rice on the plates he’d gotten out of the kitchen. “Chicken, beef, or shrimp?”
“Some of each, please.” She set the fortune cookie back down as she stood. ”I’m gonna go change out of these work clothes. I’ll be right back.”
Before Eddie could even finish dishing up the food, she returned in sweats and a shirt she’d stolen from him.
As she sat back down, she picked up and opened the fortune cookie. She pulled out the piece of paper. “‘Life will soon become interesting,’” she read. “I think it’s already plenty interesting.”
Eddie chuckled. “Yeah, where’s the one that says we get a vacation soon?”
He finished adding everything to their plates as she flipped on the television and started an episode of How I Met Your Mother.
They ate in a comfortable silence and had finished before the twenty-minute episode had ended. He set the mostly-empty plates on the table, and she shifted to curl in against his side while he wrapped his arm snugly around her shoulder.
As the credits rolled, he asked, “Bed or another episode?”
She yawned. “One more. I’m probably going to fall asleep, but I’m comfy.”
He pressed a kiss to her forehead as the TV rolled over into a new episode on its own. “As you wish, mi amor.”
She had just started to doze off when, suddenly, she was overcome with a familiar, distinct, full-body tingling sensation along with intense nausea. She quickly shifted to leaning forward on the edge of her seat. “Oh, no. No, no, no.”
Eddie reached out and placed a tentative hand between her shoulder blades. “What’s wrong?”
She stood and moved over to the empty dining room, which she kept devoid of a table and other furniture precisely for this reason. “Seizure,” she stated as calmly as she could before lying down in the middle of the floor.
“Oh, uh, okay.” Eddie was surprised, but quickly stood. He grabbed a blanket from the recliner and moved to sit beside her. He knew about her epilepsy and the medications she took for it. However, in the eighteen months they’d been dating, she’d never had a seizure. He lifted her head to slide the folded blanket underneath.
She let out a quiet whimper before her eyelids fluttered closed.
“Okay. You’re okay. I got you.” He pulled out his phone, opened the timer, and set it on the floor. He continued to whisper soft reassurances to her and started the timer as soon as she started to seize.
Despite his training and having treated patients with seizures at work, he couldn’t help but notice the way his hands shook as he carefully kept her rolled on her side. “You’re okay,” he repeated, more to reassure himself than anything. He continued to repeat it several more times as he waited for her to stop.
He felt his anxiety spike again as he watched the timer hit four minutes. He thought about what time it was, trying to figure out which shift was manning the 118 currently. He knew if she hit five minutes, he would have to call 9-1-1. As the timer rolled past four and a half minutes, her movements finally began to slow. He breathed a sigh of relief and pushed some hair out of her face as she stilled. Next, he used the corner of the blanket to wipe the saliva that had dribbled out.
For his own peace of mind, he checked her pulse, satisfied that it was steady and only slightly tachy. Next, he counted her breaths, ensuring her breathing was also back to normal. Then he sat there, running his fingers gently through her hair, and waited for her to wake.
Finally, after several minutes of anxiously waiting, she groaned.
“Hey, sweetheart. You with me?”
Slowly, she cracked her eyes open and looked around for several moments before finally landing on his face. She was clearly confused and still disoriented.
“You’re okay. You just had a seizure,” he explained. “Do you remember feeling it coming on?”
She thought for a minute before finally nodding. Groaning again, she rolled onto her back and threw an arm over her face. “Trash,” she slurred.
Eddie shifted away to grab the trash can sitting in the corner and move it beside her. “Do you want to sit up?”
“Not yet.” She lied there, trying to regain her bearings.
He took her hand in his and ran his thumb softly over her knuckles. “Anything I can do?”
“Mmmm, make the jackhammer in my head stop? And the nausea, too.” She rolled back onto her side before starting to push herself into a sitting position and pulling the trash can between her knees. “This blows.”
Leaning forward, he placed a chaste kiss on her temple. “I know. I’m sorry. Do you want something for the headache?”
“Not yet. I don’t want to puke it right back up.”
She didn’t know how long she sat there, taking slow, deep breaths in an attempt to clear the nausea. All the while, Eddie rubbed soothing circles across her back. The soreness was already starting to settle in all her muscles. Eventually, she pushed away the trash can and leaned into him.
“Ya know, this isn’t the kind of interesting I was hoping for. Stupid fortune cookie,” she grumbled.
“Me either. You think you’re ready to move?” he asked as he wrapped his arms around her gently.
“Yeah.” She nodded. He stood, and she reached a hand out for him. “Help me up?”
Instead of pulling her up, he bent down and slid one arm under her knees and the other around her back and easily lifted her. He walked slowly towards her bedroom, cautious of making the nausea worse, then set her gently on the bed. “What do you need?”
“Uh, I will take that Tylenol now. Plus, water and some Advil for in the morning, and the trash can by the bed,” she listed, then, with a pout, added, “Please?”
“Okay, I’ll be right back.”
She laid back into her pillows as she waited for him to return. Next thing she knew, she was peeling her eyes open to find Eddie beside her, rubbing a hand across her head.
“Here, take these and then you can go to sleep.” He handed her the pills and then opened a bottle of water before offering that as well.
Once she’d swallowed them, she took a few deep breaths to clear the flare of nausea. “Thank you.”
“Of course.” He pressed another kiss to her hairline.
“As much as seizures suck, it’s really nice having you here to help. I’ve just slept on the floor in there so many times because I just didn’t have the energy to move.”
“I’m glad I was here. I hate that you’ve had to go through that alone.”
“I hate that I have to go through it at all.” She sighed. “And I just broke my longest streak. At least I didn’t try to take a chunk out of my tongue.”
“Ouch.”
She nodded. “Yeah, one time, I had to get stitches from biting it so bad.”
He cringed. “That sounds awful.”
“Mmhmm,” she hummed, eyes fluttering closed. “Work is really going to suck tomorrow.”
“No, it won’t.” Eddie argued. ”You’re taking the rest of the week off.”
“I can’t!’ she declared, opening her eyes and leaning forward. “I have too many things to get done and a meeting first thing that we’ve been working toward for three weeks.”
“You just had a seizure,” he pointed out the obvious. “For the first time in, what, two years? And a long one at that. You were about twenty seconds away from a trip to the hospital. You don’t think your stress levels had something to do with this?” His tone was one of frustration, but she could tell he was just worried.
She sighed, knowing he was right. “Maybe.”
Eddie climbed into the other side of the bed and settled nearly in the middle. “So take the long weekend. Just relax and get some rest. Doctor’s orders.”
Shifting to curl into his side, she giggled. “You’re not a doctor.”
He huffed. “Medic’s orders. Is that better? Or I can call a doctor.”
“Don’t you dare.”
Rolling impossibly closer to her, he pressed one more kiss to her forehead. “Good night, mi amor.”
When she opened her eyes, the first thing she saw was her alarm clock. She was surprised to find it was nearly ten already. Slowly, she shifted onto her back and turned her head to look at the other side of the bed. She found Eddie sitting on the bed, scrolling through his phone.
“Good morning,” he greeted as he noticed she was awake. “How’re you feeling?”
“I’m okay. Just a bit sore. Which is pretty much what I expected.” She took Eddie’s hand in hers. “And maybe a little grateful that I got to sleep in and I don’t have to get up and go to work.”
He lifted her hand to kiss her knuckles. “You needed it.”
“Oh, shit!” she panicked. “I didn’t call. I missed the meeting. I’m gonna get fired!”
Eddie shushed her. “I called. Just breathe. It’s okay. I called earlier and talked to your boss. He knows you’ll be out today and tomorrow and told me to tell you to take Monday also, if you need to.”
She took a deep breath and let herself relax. “Okay. Thank you.”
“Of course. How about some breakfast?”
“Mmm. Yes, please.”
Eddie let go of her hand and got up off the bed. “Stay there. I’ll be right back.”
He disappeared out of the room, and she could hear him moving around her kitchen. A few minutes later, he returned with a plate and set it on the bed in front of her.
She looked up at him, surprised. “Since when do you make omelettes?”
“Uhh, well, never?” He laughed. “I may have called in reinforcements. Bobby dropped it off earlier. I just reheated it according to his very direct instructions.”
“Eddie! I could have just had some cereal or something. You didn’t need to make him drive over here so early on his day off.” She reached over to grab her phone off the nightstand.
“I figured you could use real food. I was going to order delivery, but Bobby offered.”
“Why would he have offered?” She opened Bobby’s contact to send him a thank you text. “Oh. You told him about last night.”
“I couldn’t fall asleep. Then they were all texting in the group thread. So when they asked why I was still up, I told them. I’m sorry. I shouldn’t have without asking you first.”
“No, it’s fine. It’s not like my epilepsy is a secret. They’re your—our— friends. I’m sure I would have told them anyway.”
He nodded. “Okay. Eat and then you can go back to sleep for a bit. If you want.”
She cut a piece off the omelette and ate it. As she chewed, she spoke, “Bobby says we’re invited over there for dinner if I’m feeling up to it. I told him we would let them know a little later today.”
“Sounds like a good plan to me.”
She took another bite of her food. “Aren’t you going to eat?”
Shaking his head, he explained, “I ate earlier.”
“Oh, right.” She glanced at the clock. “I forgot it was so late already.”
“Anything else I can get for you?”
She contemplated for a moment. “Umm, maybe a glass of apple juice?”
He disappeared from the room with a simple nod.
Soon after he returned, she finished her omelette and he took the plate into the kitchen.
“Did you want to go back to sleep?” he asked.
“How about a shower and then a movie on the couch?” she countered, throwing off the blankets she was still tucked under. As she stood, dizziness flared, causing her to sway slightly before sitting back down.
Eddie was in front of her instantly, steadying her. “How about a bath instead?”
“Sounds perfect.”
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silver-stargazing · 2 years
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Epilepticon Day 3: Favorite Epileptic Representation
If you’d asked me “What is my favorite epileptic character?” a few years ago, I would’ve had no answer. Now, thanks in large part due to epilepticon, I not only know several epileptic characters but I have a whole list of favorites:
Prince Myshkin from The Idiot. While most Victorian books cast epileptics as deviants and criminals, Myshkin was the original sympathetic epileptic hero. He’s also just a very interesting and complex character, being a 100% Russian Sad Boy™  over his epilepsy one minute and then talking about the pure ecstasy that happens when he experiences a seizure the next minute. His story line is a roller coaster of emotions and I loved every moment of it.
Angie from The Sacred Disease. We don’t often talk about the experiences of epileptics who go off their medications but I think it’s really important to discuss. Angie’s story does a great job of illustrating both why someone would choose to stop their meds while still addressing the risks of doing that.
Isaac Hammoudeh from Mis(h)dra. He’s got a fascinating story and is probably one of the most relatable epileptic characters, dealing with college, family issues, and trying to obtain a consistent supply of meds.
Ruth from Fast Color. I am just a sucker for stories where epileptic characters struggle only to come out on top and Ruth has to go through some of the toughest battles. Also, she has super powers but they’re not related to lightning or electricity. She has the ability to cause earthquakes, which is just so cool.
Ollie Paulot from Because You’ll Never Meet Me. I’ll be honest, I haven’t read this book’s sequel yet. But from the first book alone, we have a fully realized teen character who is funny, outrageously confident, and willing to go to great lengths to help his friends. Very solid rep.
Emma Cooper from Throat. She’s a teenage epileptic space cadet vampire who plays soccer in her free time. I almost feel like any future rep should just pack it in. No way will this be topped.
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bonefall · 5 months
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Hi there, as an epileptic person I’m so happy to see your changes to Shadowsight’s character (I was SO disappointed that they removed his seizures!) and that you have a whole section dedicated to it in the medicines overview! It means so much to me to have such genuine representation. The only little note I have is that the technical term for a grand-mal seizure is “tonic-clonic,” not clonic-tonic! Other than that you have some really great and well-researched information ^^
Oh shoot, I didn't realize the order was important! Can you tell me why it should be tonic-clonic and spelling it as clonic-tonic should be avoided, so I can share?
With Shadowsight and Sorreltail, I did my research by looking at educational not-for-profits and trying to make sure to listen to firsthand accounts of what it's like to have it, so that the portrayal was more based in life than medical journals. I'm pretty sure I have an old post floating around somewhere with a bunch of sources and links, in addition to the herb guide you saw.
It really is such a shame they did that with Shadowsight specifically :/ you're not the first to pass through thanking me for putting his epilepsy back. I was recently revisiting the earlier books of TBC to answer an ask (ballooned into an essay) and, man, seeing all the setup, with what I know now, utterly wasted is just devastating.
What I mean is, in Book 1, they're describing his auras from his perspective and how there IS a difference between his seizure-visions and his Ashfur-visions. They're establishing that he DID always have epilepsy, it's just ASHFUR that's new. That was a MAJOR hint that something was wrong! The epilepsy was always part of him, but the possessions weren't!
But then, in Book 4, the team unceremoniously decides that no, it was Ashfur all along. Even the seizures. GoodBYE epilepsy! It was literally just a magic spirit.
Though the "seizures give visions" trope is a bit problematic on its own (like "Blind Seer"), I feel like it's even worse to set up representation, and then just yank it away midway through an arc. Like they couldn't just have him lose the visions but keep the seizures.
Frustrating. But, well, this is MY kitchen and I get to decide the disability rep.
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haikyuupaladin · 4 months
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UNDER THE LIGHTS REACHED THE GOAL!
I saw! I’m super hyped! I can’t wait to see the full film! The short film was the first time I saw an epileptic main character on screen and I can’t wait to see it as a full length movie!
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great-gronkamorka · 1 year
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⚠️ minor avatar the way of water spoilers!! ⚠️
as a person who has epilepsy the thing with kiri (sorry if i spelled her name wrong) was awful and horrible and PTSD-ing to endure. they did it well, and hit the mark in exactly the wrong spot. i hate it. i also love the representation. fuck you. awful horrible things have happened today that i am angrily and sadly happy about
the thing that i’m mad about is not the seizure. it’s not the fact that she’s been diagnosed with epilepsy—whatever, that’s fine. good to see representation. the thing i’m fucking mad about is the fact that they showed kiri directly post-seize, waking up, crying. she was comforted by her mom, in the most vulnerable state an epileptic person can be in, and then..cut back to quaritch! the story goes on!
the way they glossed over that vulnerable moment, the way they decided it would be ok to leave that specifically on an essential cliffhanger, is what’s not ok. kiri and every single epileptic person watching that—me included!—deserves to have at least some semblance of explanation or closure before we wait two more years for a new movie.
yeah. everything else was perfect. fix your epilepsy representation.
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Reading Stoker's original notes for Dracula is so hilarious though.
- Van Helsing was supposed to be called, of all things, Max Schoeffeld?? Also for all the Mary Sue self insert power fantasy jokes Stoker initially gave the name Abraham to a completely different character
- Also he confused Mina and Lucy in his notes dhdudbdudhdjjs
- Seward first appears as "mad doctor - loves girl" (no shit duh) but later it transforms into "doctor of the madhouse", sooo who knows? The first one was still paired with "mad patient" (aka Flyman, aka Renfield, aka the guy who didn't get an actual name till very late into the writing process and the name was fucking Initials Initials Lunatic and also his characterisation is stolen from Lombroso's ePilepTic cRiMinaL)
- Nearly named Quincey after the 6th American president (representation much?), also nearly named him Brutus which, uh.
- merged some characters to create Van Helsing which is how we got the Mr. Dr. Prof. we all know
- used 'Drac' and 'Van H' as contractions
Fun things from his research:
- a glossary of Whitby slang (using 'ugsome' as a substitute for 'ugly' from now on)
- lists of real actual drowned ppl. Freak.
- notes about how he witnessed a surgery once??
- actual train schedules
- the Beaufort scale
- lists of research books, including something by a Hungarian writer, which "nothing indicates he ever read"
- felt the need to describe the colors of a watermelon which makes me think he had never seen one live... there's a pun to be made but it only works in Russian. Le sigh
Also for all of you Joncula shippers: the original "This man belongs to me" line is literally "I want him". Chickened out of that one, huh.
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polifandom · 4 months
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it is undescribeble how much i hate the character of cole walter.
alex is a good guy but his actor isnt giving me much, tbh, jackie has the personality of a cardboard box (seeing as we dont know a single thing about her other then she wants to go to princeton and has dead parents), and cole is just...
dude, i HATE him. i hate him with the fire of a thousand suns. i hate him so much i want to rip my entire scalp out.
he's narcissistic, egocentric, annoying and trying so hard to sell this "broken bad boy" persona as if the mf doesnt have a loving family, isnt desired by everyone, isnt popular and doesnt have every other thing teenagers struggle with (which, by the way, i think hes supposed to be a sophmore or junior, MF LOOKS 25). boohoo you cant play football, doesnt give you a reason to be the WORST PERSON EVER!
i swear to god i wouldve stopped watching the show epsiode 7 if i didnt love so much the side characters and representation the show proposes.
my best friend is gay and epileptic and its the first time ive ever seen someone like him on tv. its the first time ive seen a character have hearing loss and not make it a major huge deal in the series. isaac and lee, danny, nathan, parker, will, the parents, wills gf, i truly adore them. the family is great, the counselor is the sweetest, the friends are ADORABLE and i love them so much.
the love triangle, tho? could crash and burn for all i care.
yes, especially you, cole walters.
i hate you.
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