#epileptic media

[dominikmorishitaleitner]

poster for INDEPENDENT PUBLISHING XVI and concerts by DAZED PILOTS, PALOMA 004, LERNPLANET dj GUNSHIP COLLIDER SA 29JUNI 2024 at KAPU, Linz

[justepilepsy]

The reason I am harping in on spiderverse so much is because it is otherwise a really good film and story and premise.

People are not wrong for enjoying it. I don't want people to stop enjoying it. But I want them to acknowledge that it's not normal for many even non neurodiverse people to leave the cinema with a headache. You don't need epilepsy to have a photosensitive seizure.

There is a lot of great art and great ideas in this movie beyond the rapid Glitch effects, highly contrasting bright colors on large screen areas, pulsing lights and patterns etc

The film goes on to inspire other main stream and indie animation projects to take after its visuals

But if a large part of those inspiring visuals is inaccessible then I am just worried this inaccessibility will invade media that has otherwise been safe for me or others to consume.

Spiderverse is a trend setting piece of art but the execution and apparently exploitative work environment has lead to the film being a real safety hazard.

Looking at the discourse and responses I keep seeing to the photosensitivity posts surrounding it, I worry that more than just the viewers , but also many great artists may think the bright flashing dangerous lights and colors are the reason the art is good, rather than creative scene transitions or fantastic character design and the excellent blending of various frame rates.

And if strobe lights and all these effects are realy what gets you hyped and pumped for any type of art. Then that is okay too. I suppose there is an audience for everything.

But it would still be nice if there was a safe viewing option for people to whom these things are genuinely dangerous.

I want to be wrong about strobes and the dangerous art direction decisions of spiderverse spreading. But I have not yet reason to think otherwise.

[redcandieddust]

What the fuck is up with the fact that there are people who are "anti trigger warnings". Like.

Kurwa jego pierdolona mac.

What does that entail, that you want cptsd and epilepsy sufferers to have health endangering reactions to random media that could have been avoided very easily? That you want the disabled and the victims of crimes endangered??

[mycological-mariner]

One thing I find deeply frustrating is whenever you go “This piece of medía looks really good and like something I would enjoy however when I tried to get into it, I found it contains a great deal of things that I find extremely triggering which sucks because it otherwise sounds like something I’d really enjoy” and someone goes “Oh that sucks, I’m sorry you’re missing out it is REALLY GOOD and you WOULD love it!”

[xemnote]

Tumblr be like:

"check out these tags :3 here's #Epilepsy" and It's a gif or video with strobes playing against my will.

[silver-stargazing]

Gosh, I don’t know why The Idiot has been on my brain recently but it’s been almost 3 years since I read that book and I am still in awe that Dostoyevsky really went to unexpected places when talking about epilepsy.

He very directly talks about how, for some folks with epilepsy, they experience what is essentially a high before a seizure. Like a brief moment where you experience an on-rush of ecstasy that feels like the single greatest moment in your entire life before slipping off into the void.

Speaking as someone who regularly had that experience, it’s really difficult to talk to others about it because seizures are obviously bad for you. It’s weird to talk about anything other than negative experiences with seizures and yet I still have to make sense of these strange positive experiences that are often the only moments I can actually remember from the seizure.

IDK what I’m rambling to but it feels like there are still some taboo subjects when talking about epilepsy and it’s wild to me that someone from the 1860s just approached a lot of these subjects head-on and, for the most part, addressed them in a way that’s still approachable to modern readers. 

[mabelsguidetolife]

need more characters with epilepsy where their disability is not their Only Trait so you’re not just meant to pity them

[disastrousbi]

I think it was one of my mutuals who reblogged it, but does anyone have that one post about photosensitivity not being taken seriously by social media creators/somewhat users but the post focused more on how its handled by the platforms? I really need it for a class oops

[chaotic-aro-incarnate]

What do you mean that a semi obscure Japanese movie from 1951 based on a novel by Fyodor Dostoevsky doesn't have any fanfics on AO3????

[feartheoldblog]

dead space remake what was the need for the flashing lights 🤨

[naniyou]

I watched the live with the CEO, here is the tl;dr

The good news:

Chronological dash is here to stay! Whether you have to toggle it weekly or new users default to “For you” was not elaborated on but at least that’s confirmed.

Custom themes are here to stay! Once again, may be buried for all I know but, for sure will remain an option.

Search updates are in the works!!!!

The neutral news:

Tumblr is seriously in the red financially and needs more support, Ad-free for example is not widely used

They would not comment on the suggestion to bring back NSFW behind a paywall (which we all know would get them a boatload of money)

They’re possibly going to add a donation system like Ao3 and Wikipedia.

They would “rather not” sell data to make up the costs

Most of staff are pre-2010 tumblr users including the CEO who joined in 2007, so they do actually use the site and have for a long time

The bad news:

Condensed reblogs/removing duplicate reblogs is going forward. The reason cited was to meet “certain expectations” of users coming from other social media, which isn’t good.

Disability features (specifically turning off flashing ads for epileptics) was met with a request to purchase Ad-free @zingring clarified that they are looking into it but suggested Ad-free as more of a stopgap until something is put in place

Overall it was more chill than I expected, @photomatt and @zingring seem to be far more in tune with the userbase than u/spez.

[ellecdc]

page one - page two [seer!reader, whimsical!reader, feisty!reader, au's]

The Winner Takes it All (you don't need to compete for the boys) ☀️ ->The Loser Has To Fall (companion piece) ☀️ Swim Lessons (meet cute with swim instructor marauders) 🌈 When One Door Closes (the boys support you as you end your toxic relationship)⛅️ Sweet Tooth (you love baking for the boys, and they love you) ☀️ Overthinking (you're convinced they're mad at you) ⛅️🫧 Our little gremlin (fem!readers sense of humour) 🌈 Sirius' Arch Nemesis (fem!reader finds a kitten) 🌈🫧 -> a lap is a lap is a lap (Sirius assures fem!reader he doesn't love the cat more) The Sound of Music (muggle born gn!reader x poly!marauders) ☀️ Two Steps Forward (fem!reader struggling with mental health, hurt/comfort) ⛅️🫧 Marauders + your younger sibling headcanons It's been you? (when they find out their gf is a secret animagus) ⛅️🫧 who are you talking to? (they find out their date talks to her cat) 🌈 we've got you (the boys help gn!reader through an epileptic seizure) ⛅️🫧 we don't need to celebrate (marauders x roommate!reader who cleaned her room)☀️ quit (reader gets upset when James is injured during a match) ⚡️⛅️🫧 "she's fine" "she's crying" (the boys are called to pick up sad drunk!reader) ⛅️

popping wheelies (marauders x wheelchair user!reader blurb) ☀️ Scout's Honour (the boys find fem!reader sleeping with her stuffie)☀️ post-war panic (x fem!reader hurt/comfort) ⛅️ what it feels like to win (sirius takes autistic!reader to get her nails done)☀️ why sirius is banned from shopping for reader 🌈 World Cup Woes (james & sirius love fussing over moony + reader with POTS)☀️ it's a tie (moonchaser vs Sirius x reader prank war ends in a +pregnancy test) ⛅️ -> of showers and babies (pregnancy fic) ☀️🫧 your boyfriend's a trollop (everyone dresses up as Sirius) 🎃🌈 that scallywag (the boys pout when reader matches Barty for halloween)🎃 social media manager (NHL marauders have a crush on slytherin staff!reader)🌈 post moon peace (the boys and werewolf!reader recover from a full)☀️ the plight of Padfoot (the pack meets another werewolf) ⛅️🌈🫧 papa padfoots sacrifice (mum!reader saves their child from dad!marauders)🌈🫧 the team's baby (medic!reader interrupts practice so they can feel baby kick) ☀️ ABBA isn't music (dad!marauders x reader don't agree on music for their baby)🌈 cuddling isn't cute (reader, rem, & James <3 cuddling much to Sirius' chagrin)🌈 James' love & the adventures of padvix (fem!reader + the boys at an airBNB)❄️ a scare (pregnant!reader is spotting during her pregnancy, they're fine)⛅️ grovelling under an old oak tree (Remus has to beg for forgiveness)⛅️🌈

[justepilepsy]

Because of current frustration

Happy fuck spiderverse year.

The art direction is in part ableist.

You can enjoy the movie and still say that.

Note: it's ableist because it's using common animation and color choices KNOWN to cause seizures (and death) in audiences. This includes people who don't have epilepsy.

I will never not be bitter about this because the first movie message was about "anyone can wear the mask" when it clearly was excluding people by simply making it impossible to watch this film in a safe manner.

If you got a headache after watching that film. That's a photosensitive reaction and it means you're not immune to these effects. A movie you love should not give you a headache or dizziness or disorientation. It should not give an above average amount of people seizures.

And those effects causing these symptoms should not be hailed as the reason the film is good.

Spiderverse utilises other aspects of comic art to already stick out.

Rapid Glitch effects, large bright high contrast red and blue areas covering the screen, prolonged moving patterns, and flashing lights are not what make this film look good.

[ms-demeanor]

Not to be rude or derailing your answer to the ask about the scorched earth post, but I do think quite genuinely that the site is becoming more openly hostile to its userbase, or at the very least its disabled userbase. While I’m not a fan of mobbing people’s personal blogs in targeted harassment campaigns, I think some people are also ignoring that staff blatantly said in a recent post that epileptic users would need to pay for ad-free to have their safety assured

I kind of don’t think that’s being ethical or user friendly, to me that sounds like they’re refusing to meet basic accessibility requests and answering with ‘pay us money to be safe’. Strobing and flashing ads aren’t just eyestraining, they can legitimately lead to serious injuries for epileptic folk, and telling people with epilepsy to just pay up or get lost is kinda… I dunno… disgusting?

So it looks like in a livestream (not on a post so far as I've been able to see) either photomatt or zingring made a glib and inappropriate response to an epileptic user asking about flashing ads and suggested that maybe they needed to pay for ad-free.

That's bad, I don't like it, and if it was supposed to be a joke it was a shitty one.

Zingring, tumblr's COO addressed that comment in a post where she said:

Buying ad-free (or gifting ad-free to someone else) is always an option, but that is not the solution (and of course, some folks simply can’t afford it). Sorry that it sounded dismissive in the session! That was not my intent.

I still think that's inappropriate (it's not that ad free isn't *the* solution, ad free shouldn't be *a* solution to accessibility), but it looks like Zingring has addressed this issue multiple times.

She got tagged in this post listing ways that tumblr could improve accessibility for photosensitive users and seems to have pretty consistently followed up; she has explained that there are rules against flashing ads that are sometimes violated by the advertisers and asks people to please report ads that break those rules so those advertisers can be blocked, has noted that there is apparently a "stop all autoplay" option in the works behind the scenes. She does also seem to take it seriously when users reach out with complaints about accessibility issues and seems to be willing to explore options.

Looking through that blog, this does not seem to be a site that is hostile to users with accessibility issues so much as, like everything else that's wrong around here, it is ridiculously understaffed so every project that someone wants to have as a priority is a project that someone else needs put on the backburner.

However, to very gently push back: how much of what you're experiencing as hostility from tumblr is actual hostility and how much of it is seeing posts like this, which suggests that tumblr is removing accessibility features because the lightbox didn't have double-tap-to-zoom on mobile for some users for a short while, claims that the blocking/flagging issue is a false flag against trans women, shared the inaccurate fearmongering post about tumblr live's ToS, and also claimed that tumblr "allowed" flashing ads that violated the in-place rules that tumblr has for advertising?

(this kind of goes with the 'nobody understands the ToS' but also nobody understands ads; tumblr does not have enough staff to look over the ads that go on their site every day, no social media company does, they rely on advertiser agreements as a sort of enhanced honor system and reports from users if the advertisers don't hold up their end of the bargain; the only way around this for any site that uses ads is to not have ads and that post is explicitly saying don't pay for tumblr because they are doing ads wrong - either they have to run ads and some bad ones are going to slip through and users will have to report them or tumblr will have to be 100% paid by the users or tumblr will go away. If you see ads that are unsafe for photosensitive users on *any* website you should report them to the site because the site almost certainly doesn't know that there's an advertiser violating the ad ToS unless someone tells them)

Generally speaking, I am actually *not* seeing worsening accessibility features, I'm seeing improvements compared to where we were five years ago - alt text on images is now built-in and devs are working hard on making tumblr more compatible with screen readers (as noted in the changes blog regularly); tumblr itself started offering different dashboard themes for users after years of complaints about contrast levels and readability; the "tiktok/twitterified" desktop dash view that everyone hates is supposed to be more readable on wider screens.

Compare this post in October of 2022 when Changes celebrated adding animations for posting (and told users those could only be disabled at an OS or browser level) with this post from July 2023 when they rolled back a feature because of an unexpected use case that could cause problems for photosensitive users.

These aren't things that I'd expect to see from a company that didn't care about accessibility, or that was openly hostile to questions around making the site more accessible.

I don't disagree with you that the comment from the stream about buying ad free was inappropriate; it absolutely was and it must have made photosensitive users feel like shit. But in the three months since that comment tumblr has been very responsive about getting flashing ads removed as soon as possible and seems to be working on more permanent fixes. I think this may be an instance of able-bodied people not realizing how shitty and dehumanizing their joke was (and it was) and taking the steps to do better.

If you don't think they're doing better, I probably can't convince you. I certainly don't think that tumblr is perfect about accessibility and I think that users need to continue pushing for improved user control of how the site displays and interacts with various devices. But compared to the kind of responses users complaints got from staff in 2018? I feel like things have improved a lot.

[morganbritton132]

This is so silly, but I watch Sesame Street with my kids these days and thought about Eddie being one of the first artists adapting his lyrics to be numbers and colors!

The first thing to pop into my head after reading this prompt is Eddie, age 25, sitting on a stoop next to Oscar the Grouch and I love it.

The second thing to pop into my head is Corroded Coffin, in all their heavy metal glory, playing a rock n roll version of the rubber ducky song on toy instruments. Gareth uses Oscar’s trashcan as a drum and at the end of the song, he comes out of the trashcan like, “Hey, someone’s livin’ here.”

I think Eddie would absolutely jump at the opportunity to be on the show because (1) he was a Sesame Street kid and understands it’s importance, (2) thinks it’d be hilarious and piss off a lot of conservatives (his favorite hobby), (3) Steve is a second-grade teacher and he shows this show to his kids on rainy days, and (4) he fucking loves Big Bird.

As predicted, the episode gets quite a bit of backlash even though the whole theme of it was about not judging people based on what they look like and that there is good in everybody. There were even a few years where PBS took the episode out of rotation after receiving so many complaints.

When asked about it in an interview, Eddie says, “Hey, before we were devil-worshiping Satanists, we worshipped the bird.”

Many years later when Eddie is thrust back into the spotlight by being a dork on a social media app, he’s asked to go back onto the show. They do an episode about epilepsy and Eddie causes a whole different controversy by mentioning that his husband from his same-sex marriage is epileptic.

[whumpinggrounds]

Writing Seizures

 Latest installment in Disability Writing Guides! As always, feel free to add something, or come into my ask box with a question, comment, or request. 

This post is intended as a writing resource, not medical advice or a comprehensive exploration of seizures or seizure disorders.

Vocab

A seizure is a brief change in normal brain activity. Sometimes this is visible and sometimes not. They can last variable lengths of time and occur with varying frequency depending on the cause. They can be caused by epilepsy, trauma, illness, drug use, or any number of other factors.

Epilepsy is a general term for brain disorder characterized by frequent seizures. A person can have seizures without having epilepsy. Epilepsy is not a distinct diagnosis; there are many different types.

Epilepsy is diagnosed after a patient either has two seizures, or one seizure and an EEG that shows the potential for future seizures.

Again: If a person seizes more than once, they are medically defined as epileptic. A person can be diagnosed as epileptic after only having one seizure if their EEG shows potential for more.

Rescue meds are medications given to stop a seizure currently in progress.

Antiseizure drugs or ASDs, also known as anticonvulsants or antiepileptics, are drugs taken daily to prevent seizures from occurring. These are different from rescue meds.

Status epilepticus is a seizure that lasts longer than five minutes or having a seizure and then seizing again within five minutes without regaining full consciousness. Status epilepticus is extremely dangerous and can cause brain injury or death. Someone experiencing status epilepticus needs immediate medical attention. 

Generally speaking, serious intervention would begin before the seizure reached its fifth minute. If someone is seizing past four minutes with no sign of stopping, the people timing the seizure should not wait until five minutes to call 911, administer rescue meds, etc.

A seizure cluster is when a person experiences two or more seizures within a 24 hour period.

A nonepileptic event is an event that may look like a seizure but is produced by a different condition. Examples include ticcing due to Tourette’s or a heart arrhythmia causing a person to pass out suddenly.

Tonic refers to the muscles in the body becoming stiff.

Atonic means the muscles in the body relaxing.

Clonic refers to periods of shaking or jerking in parts of the body.

Myoclonic also refers to short jerking in parts of the body, but is generally more localized/occurring in a smaller area of the body.

Types of Seizures

I’m not going to go through every type of seizure, but I will go over some basics. This is massively simplified, and intended as a general writing resource, not technical or medical knowledge. Feel free to correct if I’m saying something wrong, or add detail.

Seizures are first divided into two overarching groups. Generalized seizures mean that excessive or unusual electric signals are being discharged across the entire brain. Focal or partial seizures mean that excessive or unusual electric signals are being discharged in one specific part of the brain.

Tonic-clonic seizures are the kind most commonly portrayed in media. They involve a total loss of consciousness and involuntary muscle contractions and shaking or jerking in parts of the body. This type of seizure may begin as a focal seizure or a myoclonic seizure (more on this later), but a tonic-clonic seizure is always generalized. Also - this type of seizure was formerly known as grand mal, but this is an outdated term and no longer used.

Myoclonic seizures are partial seizures, characterized by the sudden, involuntary twitching of a muscle or group of muscles. People retain consciousness during these seizures, but do not have control over their body or movements.

Atonic seizures, also called drop seizures or akinetic seizures, cause the sudden loss of muscle strength. They’re called drop seizures as they often (but not always!) cause a person to drop to the ground. A person experiencing an atonic seizure generally remains conscious.

Focal, partial, or absence seizures are seizures that do not involve the whole brain. They can involve repetitive movement like muscle jerking, but more often are characterized by being “frozen,” feeling “out of it,” or “staring into space.” It may be difficult for observers to tell that someone is seizing. This type of seizure was formerly known as petit mal, but this an outdated term and is no longer used.

Focal onset aware seizures, formerly known as “simple partial seizures,” occur when someone has a partial seizure and retains consciousness and awareness. Someone can look unaware and still be aware when experiencing this type of seizure. This type of seizure may involve feeling “frozen” or repeated small muscle movements.

Focal onset impaired awareness seizures, formerly known as “complex partial seizures,” occur when someone has a partial seizure and loses consciousness or awareness. This is type of seizure may involve feeling “out of it,” “staring into space,” or a loss of memory.

In describing a seizure (in modern-day America), the convention followed is seizure type, awareness level, and sometimes, where a seizure begins if it is a partial seizure. Thus, you get diagnoses like “Focal onset impaired awareness seizures arising from the temporal lobe,” “Focal onset atonic aware seizures arising in the frontal lobe,” or “General onset tonic-clonic seizures.”

These diagnoses are very wordy, and are sometimes shortened. Drop seizures or absence seizures are typically used as more casual terms. Also, as seizures generally begin in one of the four lobes of the brain, epilepsy is sometimes described by which lobe the seizures arise in (temporal lobe epilepsy, occipital lobe epilepsy, etc.)

Process of a Seizure

An aura is a feeling, sensation, or “warning” experienced by a person who is about to seize. Auras tend to present the same way over and over. Someone may not have auras, or recognize an aura as being a prelude to a seizure. Sometimes, an aura occurs and a seizure does not follow. Basically, there are no real rules with auras, but they are pretty common, and are generally not observable except to the person experiencing them.

Fun fact: people who have migraines also tend to have auras! It is believed that Lewis Carrol wrote Alice in Wonderland while experiencing a pre-migraine aura.

The ictal period refers to the experience of an actual seizure, when electrical activity in the brain is at its most intense. What a seizure itself looks or feels like depends on the type of seizures a person experiences, and y’all should conduct research into that for your characters.

Some people need rescue meds administered every time they seize. Others are only supposed to be given if they seize for a certain amount of time (longer than two minutes, for instance). Meds can be administered as nasal sprays, rectally, or tucked under the tongue or into the cheek. Rescue medications are only injected in hospital settings.

Remember that regardless of how often a character seizes or how long they’ve had epilepsy, seizing for more than five minutes, or multiple times within five minutes without regaining consciousness, is a medical emergency. Rescue meds should be administered and whatever medical intervention is appropriate for your setting should be immediately undertaken.

The post-ictal stage occurs after a seizure ends and lasts anywhere from five to thirty minutes. This is the period when a person is still experiencing after affects from their seizure, like confusion, drowsiness, hypertension, headaches, or nausea. Not everyone experiences post-ictal symptoms, and a person may continue to feel exhausted, irritated, or “out of it” more than thirty minutes after they seize.

Seizure Etiquette

Seizures can be surprising and very noticeable. A person that is seizing still deserves privacy. In your story, they should be given privacy, and good friends/teammates/co-characters could steer other people away or block them from being a public spectacle while they seize.

Do not have anyone put anything in a seizing character’s mouth. Ever. This is not necessary and can be dangerous, as a person can choke, or the person attempting to put something in their mouth could get accidentally bitten.

Do not restrain a person that is seizing. The character seizing or the character attempting to restrain them could get hurt, and the restraints are not going to be helpful whatsoever. Characters can move chairs or place cushions to keep a seizing character from hitting them; do not attempt to stop the seizing character’s body from moving how it will.

If necessary, the person seizing can be placed on their side, otherwise, do not attempt to move them.

If a non-epileptic character seizes, it is an emergency. Epilepsy can arise spontaneously at any age, but seizing with no prior history of seizures is a big deal, and the causes for a seizure need to be checked out to understand what caused it.

If your characters have access to medical knowledge and medical treatment, it would be realistic to have them time the seizure so that they know if a character needs rescue meds or has entered status epilepticus.

Rescue meds can be very, very expensive. A character will likely not receive rescue medication every time they seize, especially if their condition is largely stable.

It can be scary and emotional to watch someone seize. Feelings of fear and helplessness are common, especially if what’s needed is for characters to stand and wait to see if the seizing individual needs further help. It’s okay for your characters to feel that and react to that.

Things to Know

Epilepsy mostly presents in childhood and in people older than 60, but can arise at any age. Repeated seizures caused by an underlying condition (brain injury, tumors, strokes) are still considered epileptic seizures, and the person that has them, epileptic.

Repeating it once more: If your character seizes more than once, they are medically defined as epileptic.

The vast majority of seizures do not cause brain damage, or any other kind of damage. They can be frightening, distracting, inconvenient, upsetting, confusing - any number of things. But the vast majority do not cause physical harm, besides the bruises or scrapes that may come from muscle contraction or losing awareness.

Some seizures do cause brain damage. If you’re writing this scenario, please do some research into the type of seizure that would cause brain damage and what kind of brain damage that would be. Do not, for instance, have your character experience a tonic-clonic seizure and then come back in a wheelchair with no further explanation.

Sometimes, the muscle contractions of a seizure can cause spit or foam to collect around someone’s mouth. Sometimes, people bite their tongue, and this foam or spit can appear bloody. No internal injuries occur as a result of a seizure. Any bloody foam or spit is a result of a bitten tongue or cheek, and nothing more.

People who are seizing sometimes lose bowel or bladder control. This is not something they have any control over, but can still be embarrassing and is sometimes a reality of living with seizures.

In the United States, driving laws vary from state to state, but generally a person needs to be seizure free for a period of months (usually 3-6) before they are allowed to drive. The restrictions on driving commercially are much stricter.

Someone diagnosed in childhood may grow out of their epilepsy. Some estimates put the number of kids that will outgrow their epilepsy above 50%. If someone is seizure free for 2-5 years, they may begin to lessen their ASD dose, and may continue until they are no longer medicated at all.

Someone diagnosed in old age will not typically have a spontaneous remission of seizures.

Epilepsy can have a genetic basis or it can arise spontaneously. The fact that it can be passed from parent to child has been the basis of discrimination for a very long time. Be aware of this.

For much of human history, having epilepsy has been hugely stigmatized, and people with epilepsy have been routinely persecuted, particularly in the Western world under the banner of eugenics. As recently as the 1970s, many states were still forcibly sterilizing epileptic people. In writing a character with epilepsy, be aware that the diagnosis carries a heavy weight of stigma and painful history.

Though epilepsy and people who have epilepsy have long been stigmatized and persecuted, it has also long been regarded as a mystical illness, closely tied to spirituality and religion. In many places, people who have seizures are considered to be in religious ecstasy, having visions, or are chosen by higher powers. Consider the setting in which your story takes place and if this kind of thinking would realistically occur. Keep in mind that this view of epilepsy and seizures is not necessarily a positive thing.

Accessibility and Treatment

If you are writing a character who only seizes once (and the setting allows for it), proper treatment would consist of visiting whatever medical establishment exists in your universe, and monitoring or testing to determine the cause of a seizure and if another is likely to occur.

Even though your character is not going to seize again and does not have epilepsy, consider how the single seizure may affect your character. What did it mean to them to (perhaps publicly) lose control of their body or brain?

If your character does have epilepsy, their life will change or has always  looked different because of that epilepsy. For example, someone with epilepsy may not be allowed to drive, or may have never learned to drive. It is not safe for someone who has uncontrolled epilepsy to live alone. How would these considerations affect your character’s life and independence?

Think about how having seizures would apply to your character and your setting. Do they feel safe swimming? Spending significant time alone? Are there places that they avoid because it’s too dangerous to seize there?

In real life, people who experience tonic-clonic or atonic seizures often take precautions to ensure their safety should they have a seizure. People who have atonic seizures wear padded helmets to protect their heads. People who experience an aura may get themselves to a safe location, or adjust their surroundings so that they won’t hurt themselves while they seize. What precautions might your characters take to protect themselves?

Seizure triggers. Photosensitivity is a very common one, with flashing lights being especially dangerous for epileptic people. Some seizures have clear, specific triggers, while others seem to arise out of nowhere. Though it may be difficult to tell what exactly triggered a seizure, the modern Western medical establishment believes that all seizures have triggers, though the triggers may not be known. Triggers tend to be environmental cues that the central nervous system over-responds to, like the aforementioned flashing lights. A friend of mine has epilepsy that is triggered by anything coming directly at their face, like balls being thrown towards them. Once, a seizure was triggered by a butterfly flying directly at them.

Seizures can also be triggered by sounds, smells, or sensation, not just sight!

What might your character’s seizure triggers be? Your character may or may not know themselves, but if the triggers are known, how does your character avoid them, or plan their life around them? My friend’s seizure trigger meant that they couldn’t play ball sports, even casually, which kind of sucked. But having a seizure sucked more, so.

In terms of accessible spaces: The more open space, the better, and the softer the surfaces, the better. For instance, people who have seizures may prefer using an accessible bathroom stall, as they are larger, and the person seizing is less likely to become trapped or hurt themselves if they seize unexpectedly in the bathroom. What kinds of spaces does your character seek out, particularly if they are aware they might seize soon?

A properly medicated epileptic character may still have seizures. Medications are intended to control, shorten, and decrease total number of seizures. Sometimes they entirely eliminate seizures, but a person may still seize and that does not mean the medication isn’t working. A character who still seizes frequently and for long stretches of time likely is not properly medicated. Medications should be taken around the same time(s) every day for maximum efficacy.

Life changes, particularly puberty, can make medication less effective.

Proper medication is life-changing for people with epilepsy, and would likely be life-changing for your epileptic character as well. What does the process of getting medicated look like? How does your character feel upon being properly medicated? What in their life changes, and what stays the same?

Are there any drawbacks to being medicated? Side effects? Cost of medication?

If epilepsy is drug resistant, there are a few other options. I’m only going to discuss two, one because it has a long, fraught, and misunderstood history, and the other because it’s Trendy.

Brain surgery is an option for people/character with epilepsy. This is not the scary ice pick lobotomy of the 20th century. Brain surgery is a necessary tool to help epileptic people that are struggling with frequent, severe seizures that do not respond to medication, or when the side effects of medication are intolerable. Surgery can mean removing part of the brain (resecting), killing specific nerve cells where seizures start (lesioning), disconnecting the hemispheres of the brain (corpus callosotomy), or the implantation of a pacemaker-type device that uses electrical signals to block or disrupt seizures.

If your character is getting brain surgery for epilepsy in a contemporary, futuristic, or fantasy setting, please do your own research and ensure that the type of surgery they’re receiving fits their type of epilepsy and their need. Please frame the surgery accurately and avoid falling back on scary tropes about people coming back with different personalities, no personality, or dying in these procedures.

The last treatment option I’m going to discuss here is the ketogenic or keto diet. You may not be aware, but the diet was originally developed to treat children with epilepsy, and there is limited evidence showing that it does decrease or eliminate seizures in children. This diet is extremely high in fat and as low as possible in carbs. The majority of people who believe they are following a keto diet and are in ketosis (body and brain fueled by fat instead of sugar) are wrong. It is extremely difficult to follow a strict keto diet and is absolutely a major life change.

The diet would typically only be recommended for children between 2 and 12 whose epilepsy is resistant to medication.

Why or how the keto diet works to control epilepsy is not well understood. The fact that the brain is fueled by fat products known as ketones, rather than glucose, is thought to be related. If anyone knows more, feel free to contribute that knowledge.

Rethink

If your character gets brain surgery for their epilepsy, and that surgery is framed as negative, think about why that is. I absolutely understand the long, problematic, real-life history behind lobotomies, and I am not telling you not to explore that. Please do think hard about what beliefs you may have, and what messages you may be sending, about people who get brain surgery.

Characters with epilepsy that gives them visions or confers some kind of power. Yes, there are historical associations between epilepsy and religiosity, but remember the real world people who have epilepsy and how this framing may strike them. This is a common trope, so do a little introspection on what about this narrative is compelling to you and what messages you’re consuming and endorsing.

Seizures that occur to add intensity, drama, fear, or risk to the story. What are your characters afraid of? Why are they afraid of it? As always - what messages are you sending about seizures or the people who experience them? How would it feel to read your portrayal as a person who regularly seizes?

A character who seizes but does not have epilepsy. Related to the above - why is a seizure important to your story, but epilepsy is not a part of it?

A character who seizes twice but is not described as/does not identify with epilepsy. For one, this is medically inaccurate, which you should just be aware of. Secondly - what about this diagnosis is undesirable or unnecessary for your story? Why?

Write what you’re going to write, but understand why you’re writing it, and how it might be perceived. In particular, when writing about a complex, widely misunderstood, and stigmatized condition like epilepsy, understand what stigma you may be contributing to, what inaccuracies you may be presenting, and what complexities you may be ignoring, especially by having a character seize without being epileptic.

Resources

A lot of this is written based on my relationships with epileptic people and personal research. I don’t like to recommend media that I haven’t personally read/watched, just because then I don’t know what I’m recommending, but if anyone else has recommendations, please feel free to add them!

How Evan Broke His Head and Other Secrets by Garth Stein is contemporary novel about a Seattle man with epilepsy who is suddenly thrust into parenting a 14-year-old son he didn’t know existed. I read it a while ago and remember it being pretty good, but nothing special (no offense, Garth Stein). Worth noting that while the author is not himself epileptic, his sister does have epilepsy and he likely has better than typical knowledge of the condition.

The Spirit Catches You and You Fall Down by Anne Fadiman is a creative nonfiction book about a Hmong family, their epileptic child, and the medical saga they embark on as the American medical establishment attempts to treat their child. It is written about a real-life immigrant family and their daughter and was extensively researched over eight years, focusing on cultural differences, and xenophobia, racism, and misunderstanding in medicine.

This Podcast Will Kill You, which is free on Spotify, includes an hour and forty minute long episode diving into (some) of the etiology and history of epilepsy.

Maintenance Phase is a podcast that is also free on Spotify and has an episode about the keto diet. The main focus of the episode is the keto diet as it is used for weight loss, but it does include some fascinating backstory on the (invented) narrative that the keto diet is a secret that is being kept from the general public.

Please hit me up with questions, comments, corrections, or requests. Happy writing!