Actually Epileptic - Tumblr Posts

i am literally never going to sleep early ever again. tell me why i woke up at 2:30ish AM and immediatly had a seizure like WHY was that NECESSARY-

AGAIN???

i am literally never going to sleep early ever again. tell me why i woke up at 2:30ish AM and immediatly had a seizure like WHY was that NECESSARY-

happy nine year anniversary to me for my brain surgery!

nine years ago today, i went into surgery to have part of my brain removed to hopefully stop my seizures. sadly, it didnt work and they came back again a few years later.

but those few years were i was seizure free, finally able to stop taking years after almost 5-6 years, was such a freeing and joyful feeling that im so grateful i was able to experience <3

HONESTLY

I have photosensitive epilepsy, and coming from personal, terrifying experience, it's an awful way to live.

I love Across the Spiderverse and Stranger Things. I enjoy rock and metal music and concerts, but these are things I, and many others, must either avoid or enjoy with EXTREME caution.

I get it, flashing lights can make an atmosphere more lively in a movie, or it can make a scene feel so tense and threatening in a show, but it really isn't necessary for someone to put into their blog. Really.

Photosensitive epileptics can't just walk the tightrope of life with caution, we risk our lives just turning on the TV, or in some cases, our phones.

For fucks sake, do better.

do people who disregard photosensitivity realize that seizures can fucking kill or do they just not care. do people not realize that their "aesthetic" "cool" flashing lights that happen without SUFFICIENT warning... are fucking capable of killing people. i dont even care if i sound pissy right now because i am pissy, im sick of feeling like myself and others with epilepsy arent even afforded the right to be an afterthought to most people. im not even photosensitive but ffs this shit makes me so angry.

seizures themselves can be deadly if they go on too long, theyre essentially electrical overloads in the brain, you know, that organ that controls the entire rest of the body? and seizures can result in injuries or death from falls. from choking on our own vomit. from drowning in our own bathtubs, if we think we might be safe to bathe and then get proven wrong. maybe someone just wanted to watch a video or movie while they took a spa day.

did you know that epileptics are more likely to die younger than those without epilepsy, with all those risks and more? and have you heard of SUDEP? sudden unexpected death in epilepsy, death without a known cause, a rare but very real possibility for us. it kills approximately 1 in 1000 epileptics a year, if not more since it may not be accurately tracked. thats thousands of us dead a year. we do not need you to add to our death rates.

"all these things are known risks, epileptics just have to be more careful-" epileptic people should not have to be on constant fucking high alert. how about instead, people just learn to give a shit about life threatening disabilities? it takes so little effort to just offer a CLEAR and VERY OBVIOUS warning AHEAD OF TIME, for a SIGNIFICANT AMOUNT OF TIME, before your stupid flashing lights. or just dont add them at all. are they necessary? are they really necessary? would you really fucking rather photosensitive epileptics have to be constantly on guard, IMPOSSIBLY on guard, rather than you just considering their safety? nobody can anticipate every instance of unexpected flashing lights they might come across. but you, creators, are able to provide warnings, and if for any reason you arent, then hire someone else to edit the warnings in or just get rid of the fucking lights altogether.

again, my epilepsy is not photosensitive, but i will never stop being protective of my photosensitive siblings. my own life is scary enough with the form of epilepsy i have, i cannot imagine how terrifying it must be to have to maneuver through the world with photosensitivity, and i dont want careless assholes to go killing my fucking community because you dont give enough of a shit to worry epileptic people. i am pissed off and emotionally exhausted and the shit with elon musk having a flashing gif on his twitter account was the straw that broke my back today so youre getting a pissed off PSA. everyone better start doing a whole damn lot better.

link to the CDC page about SUDEP

link to the epilepsy foundation site page about seizure risks

people without epilepsy are encouraged to reblog but know that i am already angry and will not tolerate bullshit on this post. give a fuck about other peoples lives and safety or im blocking you.

I will never forget the time my mom went on a whole rant about how insensitive it is that they named a run for epilepsy "Seize the Day" to me (an epileptic)

I was holding back laughter the whole time

Wishing all "trans"abled people a horrible disability pride month because it's not yours. You abelist fuck. You don't deserve anything.

Reblog if you're a real disabled person.

JUST PUTTING THIS OUT HERE! I’ve noticed the bitzee virtual pet things has FLASHING LIGHTS! Very much so and there is no warning for it. For context though, I do not have epilepsy. However I have autism and the lights are very overly stimulating so I JUST want to make sure that some people know so if anyone buys this product they know the risks and do not put themselves in danger. Bare in mind I do not actually know if this can, however I figure to warn people more about it JUST INCASE.

I am posting this on here and tagging things for people who may be at risk, may see this.

Below is a demonstration, credit to the original creator of the video! TW FOR FLASHING LIGHTS AT :20 NOW BELOW THE EDIT !

Edit: thank you so much for reblogging photosensitive despair! I really really hope this gets out to more people as I hope this could save lives! Thank you again.

I don’t speak for every neurodivergent person obviously but for neurodivergent kids trick or treating- if anyone has an experience that has flashing lights or loud noises in like a haunted house- imagine if there was first of all- telling people that there will be loud noises or flashing lights- or anything else like that- and write that people who are neurotypical or are okay with those things knock- but people who aren’t ring a door bell and perhaps have a quick conversation on what they could do to make the experience accessible then DO IT. Like a kid with photosensitivity or epilepsy? Turn off the flashing lights. An autistic person with texture aversions? Maybe move the fake web to the side, so everyone can experience the almost same experience in a healthy way! Someone cannot use their legs? Bring the experience to them or find a way to make them feel involved!

Probably a perfect world situation but I find this idea to be so smart and an excellent way of including people with disabilities who sometimes can’t. I know from experience there have been so many events I couldn’t attend due to over stimulation and I just wanted to put this out here Incase people would use this

Hey! There’s a recent game on steam (soon coming to consoles) called Amber Isles. Cute dino game (please go support devs)

HOWEVER, there is a VERY bad bug right now with tails (in particular one of the more avian-like paleofolk tails that kinda looks like a butterfly, at least for me) It again could be a possible concern for those with epilepsy, if I decide to keep the game I’ll update when this is fixed. Stay safe folks!

(I’m not actually epileptic again- HOWEVER I tagged the same last time I posted like this. I’d rather people block me for posting on the wrong tag after people see this, THAN HAVE SOMEONE DIE TO SUDEP. People with epilepsy can 100% correct me on this too!)

EDIT: It seems to be a low performance thing! Still worth noting though if you do have an old/laggy laptop and have epilepsy or photosensitivity, OR it happens anywhere but the shop. Hard to tell.

EDIT 2: IT IS WITH ALL LONG TAILS IT SEEMS! ALSP MOVED TJE PROOF TO A REBLOG BECAUSE THE MAIN POST BEING A WARNING FOR PEOPLE WITH EPILEPSY AND HAVING SOMETHINF FLASHING WAS NOT SMART (albeit it had big text “WARNING FOR FLASHING BELOW!” And a lot of space (like 10 lines prob) but still- gonna be in a reblog instead!

Untreatable disabled culture is wanting to go to the hospital on a really bad day, but knowing there's nothing they can do for you and it's just a waste of money and energy.

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I grew up reading lots of epics and myths, like I loved greek mythology and occult stories about things like demons, gods, monsters, etc.

But I especially loved hearing about various oracles and prophets, especially The Oracle of Delphi and how she was considered such a powerful staple of all these stories.

Like I read about how epilepsy was treated in history, with it occasionally being treated as a sign of prophecy or being touched by a god or something otherworldly, and a part of me latched onto that.

I loved all things fantasy as a kid and I still do, so this little coping mechanism at the back of my head saying that I am already connected to something magical.

Well. It helped in a way. It helped to think that maybe I wasn’t something bad for existing, maybe I was something that was just different in my own way, something that if the world were a little more otherworldly, would make me something like an Oracle or someone who could be the voice of the demons, or have a demon be my friend, or something cool because I have this.

It’s a harmful thing in fiction and a dangerous stereotype that epilepsy is at all supernatural, as it has gotten many people killed and is one of the largest factors as to why there is so much stigma regarding epilepsy.

Yet, I guess a small part of me was glad I could reclaim it, especially as a kid who was tired of having everyone treat me like a burden, or have so many kids ostracize me when I happened to have seizures in class.

There’s a small comfort in thinking that I’m magic, that The Sacred Disease made me a little…sacred.

If you do not have epilepsy this is not an encouragement or allowance to have this in your story or treat people like this/romanticize seizures. This is my personal take on my condition and the things related to it. I am not a voice for the community. Thanks.

Yes! I meant to add more present tense, as it is something that still exists and still leads to a lot of harm, my use of past tense was more a musing about Greek Mythology in particular, as I was one of those kids obsessed with it growing up.

I’ll be honest I agree, while I have fun projecting onto characters with prophecy or even Denki from My Hero Academia for a more notable example, I’m not sure if I’d ever want anyone who doesn’t have epilepsy or hasn’t been close/consulted by someone with epilepsy to write a character with it.

I’m personally friends with many writers and someone who enjoys making stories, OCs, etc myself, and my friends have been very supportive in the past and made characters who have epilepsy just to spread awareness or show solidarity, but even then I’ve had moments where I’ve been uncomfortable with certain portrayals of it and had to pull a past friend aside for getting a bit too excited about what seizures he would decide to give a character for the best angst.

Especially in the 2022 case of Whumptober with the prompt regarding seizures. I love the appeal on principal, but it’s off putting because there’s not a lot of prevalent good examples in media, so usually (not all the time, it’s just something I’ve noticed) any character I’ve found written by someone without epilepsy is almost stereotypical to a comical level. It’s off putting sometimes in an age where lots of people are writing very realistic portrayals of Depression, PTSD, or even in rarer cases things like other conditions or physical disabilities, though those are also rare.

Thank you for replying !

I grew up reading lots of epics and myths, like I loved greek mythology and occult stories about things like demons, gods, monsters, etc.

But I especially loved hearing about various oracles and prophets, especially The Oracle of Delphi and how she was considered such a powerful staple of all these stories.

Like I read about how epilepsy was treated in history, with it occasionally being treated as a sign of prophecy or being touched by a god or something otherworldly, and a part of me latched onto that.

I loved all things fantasy as a kid and I still do, so this little coping mechanism at the back of my head saying that I am already connected to something magical.

Well. It helped in a way. It helped to think that maybe I wasn’t something bad for existing, maybe I was something that was just different in my own way, something that if the world were a little more otherworldly, would make me something like an Oracle or someone who could be the voice of the demons, or have a demon be my friend, or something cool because I have this.

It’s a harmful thing in fiction and a dangerous stereotype that epilepsy is at all supernatural, as it has gotten many people killed and is one of the largest factors as to why there is so much stigma regarding epilepsy.

Yet, I guess a small part of me was glad I could reclaim it, especially as a kid who was tired of having everyone treat me like a burden, or have so many kids ostracize me when I happened to have seizures in class.

There’s a small comfort in thinking that I’m magic, that The Sacred Disease made me a little…sacred.

If you do not have epilepsy this is not an encouragement or allowance to have this in your story or treat people like this/romanticize seizures. This is my personal take on my condition and the things related to it. I am not a voice for the community. Thanks.

Yeah,

I was diagnosed with JME when I was 13, I’m 21 now and it still stings a little how the only way to find decent rep at all is through circles like this.

Just once I wish there could casually be a character in a piece of popular or publicized media in the age of the internet who happened to have Epilepsy, it doesn’t matter who made it, if it’s independent or from a corporation, so long as people outside of these circles could see a character with the condition portrayed well, like what the community famously does for Denki but explicitly stated.

If that were the case, perhaps the next generation of people going through this wouldn’t have to settle for the more positive outlooks in various cultures or projecting onto oracles/seers. They could point to someone like Denki and say “look, that’s me.”

I will look at the lists provided for decent portrayals though! Thanks again <3

I grew up reading lots of epics and myths, like I loved greek mythology and occult stories about things like demons, gods, monsters, etc.

But I especially loved hearing about various oracles and prophets, especially The Oracle of Delphi and how she was considered such a powerful staple of all these stories.

Like I read about how epilepsy was treated in history, with it occasionally being treated as a sign of prophecy or being touched by a god or something otherworldly, and a part of me latched onto that.

I loved all things fantasy as a kid and I still do, so this little coping mechanism at the back of my head saying that I am already connected to something magical.

Well. It helped in a way. It helped to think that maybe I wasn’t something bad for existing, maybe I was something that was just different in my own way, something that if the world were a little more otherworldly, would make me something like an Oracle or someone who could be the voice of the demons, or have a demon be my friend, or something cool because I have this.

It’s a harmful thing in fiction and a dangerous stereotype that epilepsy is at all supernatural, as it has gotten many people killed and is one of the largest factors as to why there is so much stigma regarding epilepsy.

Yet, I guess a small part of me was glad I could reclaim it, especially as a kid who was tired of having everyone treat me like a burden, or have so many kids ostracize me when I happened to have seizures in class.

There’s a small comfort in thinking that I’m magic, that The Sacred Disease made me a little…sacred.

If you do not have epilepsy this is not an encouragement or allowance to have this in your story or treat people like this/romanticize seizures. This is my personal take on my condition and the things related to it. I am not a voice for the community. Thanks.

I grew up reading lots of epics and myths, like I loved greek mythology and occult stories about things like demons, gods, monsters, etc.

But I especially loved hearing about various oracles and prophets, especially The Oracle of Delphi and how she was considered such a powerful staple of all these stories.

Like I read about how epilepsy was treated in history, with it occasionally being treated as a sign of prophecy or being touched by a god or something otherworldly, and a part of me latched onto that.

I loved all things fantasy as a kid and I still do, so this little coping mechanism at the back of my head saying that I am already connected to something magical.

Well. It helped in a way. It helped to think that maybe I wasn’t something bad for existing, maybe I was something that was just different in my own way, something that if the world were a little more otherworldly, would make me something like an Oracle or someone who could be the voice of the demons, or have a demon be my friend, or something cool because I have this.

It’s a harmful thing in fiction and a dangerous stereotype that epilepsy is at all supernatural, as it has gotten many people killed and is one of the largest factors as to why there is so much stigma regarding epilepsy.

Yet, I guess a small part of me was glad I could reclaim it, especially as a kid who was tired of having everyone treat me like a burden, or have so many kids ostracize me when I happened to have seizures in class.

There’s a small comfort in thinking that I’m magic, that The Sacred Disease made me a little…sacred.

If you do not have epilepsy this is not an encouragement or allowance to have this in your story or treat people like this/romanticize seizures. This is my personal take on my condition and the things related to it. I am not a voice for the community. Thanks.

An Incomplete Listing of Fictional Characters with Epilepsy and Seizures

@seaglassdinosaur requested a list of fictional characters with epilepsy and seizures. I couldn’t find one particular list on the Internet beyond the Wikipedia article so I complied my own list. The characters here will not all be positive depictions of the epilepsy experience, but they are representation regardless.

Literature:

Adult Literature

Antonio (Three O'Clock in the Morning)

Carmen Sternwood (The Big Sleep)

Evan Wallace (How Evan Broke His Head and Other Secrets)

Isaac Hammoudeh (Mis(h)adra) (graphic novel)

Keziah Montgomery (Engraved on the Heart)

Lizzie Molyneux (The Dare)

Mary (The Florist’s Daughter)

Molly Volkova (Molly Falls To Earth)

Oscar Dubourg (Poor Miss Finch)

Othello (Othello)

Pavel Fyodorovich Smerdyakov (The Brothers Karamazov)

Prince Myshkin (The Idiot)

Robert “Sweetrobin” Arryn (A Song of Ice and Fire series)

Silas Marner (Silas Marner) (Catalepsy, which is different from epilepsy but still includes seizures and can be a symptom of epilepsy)

Sophie (We are Satellites)

Toby Withers (Owls Do Cry & The Edge of the Alphabet)

Youth Literature (Teen and Children)

Alex Woods (The Universe Verses Alex Woods)

Annemarie (When You Reach Me)

Duncan MacDonald (Prince Across the Water)

Emma Cooper (Throat)

Finn Easton (100 Sideways Miles)

Jake (Takedown)

Leilani Milton (The Islands at the End of the World series)

Meena Zee (Meena Meets Her Match)

Monks (Oliver Twist)

Ollie Paulot (Because You’ll Never Meet Me)

Pepper Al-Yusef (The Arsonist)

Percy Newton (The Gentleman’s Guide to Vice and Virtue)

Pippa (Gemma Doyle Trilogy)

Sven Beekman (Talking to Alaska)

Thom Creed (Hero) (Unspecified Seizure Disorder)

Zane Guesswind (Zane’s Trace)

Film:

Movies

Angie (The Sacred Disease)

Bagi (Khadak)

Dave O'Hara (Wide Awake 1998)

Esteban Espinosa (El Aura)

Ivy (The Exploding Girl)

Kinji Kameda (The Idiot 1951)

Lily O’Connor (Electricity)

Michaela Klingler (Requiem)

Penelope Stamp (The Brothers Bloom)

Robbie Reimuller (…First Do No Harm)

Ruth (Fast Color) (Unspecified Seizure Disorder)

Ruth Hunsdorfer (The Effect of Gamma Rays on Man-in-the-Moon Marigolds)

Sam (Garden State)

Sam (Under the Lights)

Teresa Ronchelli (Mean Streets)

Television

Anežka Archuletta (Jane the Virgin)

Ashley Thomas (Emmerdale)

Caitlin Ryan (Degrassi)

David Platt (Coronation Street)

Erica Reyes (Teen Wolf)

Hotaru Tomoe/Sailor Saturn (Sailor Moon) (Unspecified Seizure Disorder; Magically cured during the series run)

Karen (Diff’rent Strokes) (only appears in one episode)

Nancy Carter (EastEnders)

Pearl Gallagher (Diff’rent Strokes)

Reverend Smith (Deadwood)

Steph Cunningham (Hollyoaks)

Victor Newman (The Young and the Restless)

Will Graham (Hannibal) (seizures as a symptom of encephalitis)

Note: This list is incomplete due to both the vast scope of this description (a lot of characters have seizures when, for example, being possessed or experiencing visions and I’m unsure whether to count them or not.) and the limitations I have with media as someone who only speaks english.

Also: If you know of any epileptic characters or characters who have had seizures that I missed, please let me know!

I see many able-bodied people and non-photosensitive people confused as to why the Epilepsy Community on Tumblr refer to the Spider-verse Franchise as being inherently ableist. I can understand that if you are not familiar with the term, you may find this disconcerting. The film is not actively saying that disabled people are bad, nor do I think that they are making an active decision to harm disabled people. I do not think that they are making a film with the deliberate purpose of killing disabled people! 

However, the active choices they make (e.g. not adhering to the rule that states that a flash rate of 3 - 30 per second is dangerous, and to avoid high contrasting patterns) are those which mean that Photosensitive People are barred from seeing the movie. This is a form of social discrimination. No, please, hear me out! 

Scope, a leading charity for disabled people defines ableism as: 

“A word for unfairly favouring non-disabled people. Ableism means prioritising the needs of non-disabled people. In an ableist society, it’s assumed that the “normal” way to live is as a non-disabled person. It is ableist to believe that non-disabled people are more valuable to society than disabled people.”

This is what the creators do. They unfairly assume that disabled people will have no interest in watching their film. They unfairly assume that the public will all pass on through word of mouth that the film is dangerous to watch for photosensitive people. It unfairly assumes that, because the majority of its audience will be safe watching it, those who are not safe do not matter as viewers or as people. It unfairly assumes that there Afro-latine People, Black People, Latine People, Jewish People, Women – the minorities the film chooses to represent – are all able-bodied and that if there do happen to be any people within those demographics that are also photosensitive, then they have no interest to see other parts of themselves represented on the screen in the same way. 

Disabled people already feel incredibly isolated by society. People, especially children, with epilepsy are often barred from social events. They cannot attend nightclubs, concerts, sleepovers, school trips, long haul holidays and so on. On bright sunny days, my incredibly Photosensitive Mother cannot even drive the car because the flashes of sunlight between the leaves of trees will give her a migraine that will take days to recover from. 

Therefore, when a company knows full well that their film is going to be talked about amongst the general public, that it is going to be a moment of cultural importance, to make a series of creative choices that knowingly bar disabled people from having this experience is a form of ableism. 

Ableism is not always obvious. In fact, it usually is not. Why? Because ableism is focused on leaving disabled people at home. It is focused on pushing us to the side, and making sure we are never heard from again. And in this case, it does take this to the extreme. Exposure to this film can indeed cause a Photosensitive person to die. This is not an exaggeration. 

3000 people a year die in the USA from epileptic seizures. 

And as I have said before, this is not a case of us asking to be allowed to sit at the table. We are not asking for them to introduce an epileptic spider person! We are simply asking to not be shot at if we try to enter the room, and asking that you please listen to us when we explain that pointing a loaded gun at a disabled person who tries to interact with you, is, in actual fact, quite an ableist thing to do.

Happy Disability Pride and awareness month! Let's talk about Epilepsy!

Hi there! I got tired of seeing my condition (that impacts my literal every day life) being left out or forgotten about during discussions about disabilities, so I made my own post about it! Let's go!

First Off! What the heck is epilepsy? Epilepsy is the fourth most common neurological disorder in the world, and it's a chronic medical condition. Epilepsy is a brain disorder that causes recurring, frequent, triggered, and unprovoked seizures to occur.

The official Epilepsy Foundation describes seizures as follows: "Seizures are sudden surges of abnormal and excessive electrical activity in your brain, and can affect how you appear or act. Where and how the seizure presents itself can have profound effects...Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells. These electrical bursts can cause involuntary changes in body movement or function, sensation, behavior or awareness." (Source link)

Sounds like a lot of fun right? This is our life. Even with medication, we can be VERY limited to what can be safe for us. Seizure medications are NOT a cure, they only exist (at least as of now) as a tool to help have your seizures less often, or be triggered less intensely. Even on medication, seizures can still happen.

If you have epilepsy as a child like I did, it impacts your entire growing and developing experience. I spent MANY times as a child in and out of hospitals, neurologist and specialist offices, an getting so many EEG tests done. The pain of scrubbing the glue out of your hair for DAYS is horrible.

At a young age my seizures were so frequent and serious, it impacted my brain's ability to retain information. I had to re-learn the names of things at age 8 and 9. I had to re-learn HOW TO READ at age 10. I had to be home schooled because the public school system of my state at the time refused to work with me. I have VERY distinct and vivid memories of crying over my little baby ABC's book that I needed as a 4th and 5th grader. I knew I should've known this by this age. I knew that at one point I already did, and it was TAKEN FROM ME.

As an adult, I'M NOT ALLOWED TO DRIVE A CAR. And I can NEVER go to see a movie in theaters or go to see concerts or live music. There are entire TV shows I don't get to see. I can't go to clubs, arcades, dances, or raves. I miss out on A LOT of fun things. I always do, and I'm WELL AWARE of the fun I'm missing out on. The social, casual, and fun life experiences I'll never get to have. That WE'LL never get to have. And oh yeah! Seizures can KILL SOME OF US. Yep.

And the list goes on, and every person with epilepsy experiences it differently. There are multiple different types of seizures you can have, they're NOT always convulsing on the floor. For example, I have complex-partial-myoclonic-seizures. Meaning my muscles DO twitch when I have seizures, but I'm not always completely unconscious and sometimes I'm even able to stay sitting up. However, I'm still very "off" and can't focus or remember much for a good while after the fact. I can't talk or communicate during one, even with my slight bit of consciousness.

My experiences are not universal, I just wanted to talk about it and bring it up. It helps to talk about it even a little bit. Here's more about different kinds of seizures. Here's more about common seizure triggers. Here's more about CORRECT seizure first aid. And here's more general information/resources.

Please stop leaving us out of disability awareness. Please stop ignoring us or saying we're "not really disabled" or anything else like that. Please. Why does it always feel like the only people who care about epilepsy, are people WITH epilepsy? We're so tired of being ignored by others who don't have our condition.

If you're an epileptic person reading this, I see you. I love you. You're so strong, we all are. I believe in you, I believe in us. We're so much stronger than we get credit for, and it's going to be ok. Your anger and frustration are valid. Your emotions and struggles are real. You're valid, and I see you. Hang in there, we got this.