#epilepsy representation

dr al-hashimi’s seizure disorder was excellent (in my opinion) representation of the struggle of an invisible disability, ESPECIALLY seizure disorders. every day of being seizure free is just a day closer to the next one, and breaking that is a devastating feeling. the way they showed robby almost understanding and almost being empathetic before turning it on its head and treating her differently is so familiar and so well-portrayed.

the different treatment in the workplace, no matter the industry, is prevalent with any disability and i fear the message won’t come across as loud as it should because that treatment will end up filed by fans under “reasons robby is evil and hates women” rather than “things real people are faced with”

and the whole “you shouldn’t be driving in this condition”?? the lack of a driver’s license is so debilitating — i never even got mine so i haven’t had the chance to get it suspended, so i can only imagine the way that feels.

i can’t say how many times i’ve had an identical breakdown to hers in the car.

dr. al-hashimi it took me some time to warm up to you but as soon as i saw that first seizure i knew you were That Girl.

ALSO let it be known none of my friends clocked her pauses as seizures until it was revealed but i KNEW

Hi,

For historical fiction and fantasy fiction with a similar technology level alike, I tend to find resources by looking up “history of [condition],” as well as “history of [condition] treatment” as well as being more specific like “[condition] in the 19th century” or even the specific year. This won’t always or even often turn up a bunch of resources, but it can help get a good starting point.

This is often more effective along with looking up something more general, like “hospitals in the 19th century” to see what things they would vs wouldn’t be able to do or treat, and looking up specific symptoms and perhaps if you don’t want them to be treated because it’s not something possible in your world.

So if you’re researching the nerve damage you could look up “hand surgery in [time period],” as well as “permanent hand paralysis,” even if it gives you results that have a different cause from your character. It’ll give you another look into how someone would live with a particular disability.

Epilepsy in particular is one of the oldest conditions we know about; we even have descriptions of what can help us describe and identify epilepsy from as early as 1700 BCE. Hippocrates in the 400s BCE was one of the first to theorize it was a brain condition and non-contagious, but this didn’t pick up steam until about much, much later in the 1600s. Here is a research paper where I got much of this information on. (It’s not paywalled as of me writing this answer.)

On that note, research papers can be your friend, too, on how things have historically been seen and treated.

Usually you’re trying to find not only medical resources, but historian-based resources as well. Sometimes I find info in blogs that I then have to double check, but these can be really valuable once you do your fact-checking. And I will admit, it is not easy and you will have to sift through a lot of information and even some misinformation.

But I hope this can help point you in the direction you want!

Epilepticon Movie Marathon 2024

The Brothers Bloom (2008) dir. Rian Johnson

Summary: After 25 years in the business, two con-artist brothers work to pull off the perfect heist to celebrate their upcoming retirement. Their target: Penelope Stamp, a wealthy heiress who likes to live on the edge.

Representation: Penelope is revealed early on to have epilepsy. She is introduced driving and crashing a sports car due to having a seizure while behind the wheel. The way she discusses her visit to the hospital after the crash implies that she has done this several times before.

Additionally, as she feels that her epilepsy diagnosis isolates her from others, she is shown to be lonely and a risk taker as in addition to driving without a license, she also does chainsaw juggling as a hobby and willing goes on a heist when she knows that the men involved are con artists.

I just finished A Mind Unraveled, by Kurt Eichenwald. It’s his memoir about getting an epilepsy diagnosis in his late teens, and the various stuff that followed after. 

I’ma be real, it’s kind of an awful read, but not because he’s a bad writer.  It’s hard to read because it’s the story of his life, and a lot of it focuses on his college years, which sounded pretty hellacious. (See also: Traumatic.)

It’s a book about one guy’s life with epilepsy, starting in the early 80′s (maybe late 70′s?), and ending ca. 2016 with a call to action: Get loud. Get mad. Yell at people who disregard our wellbeing in favor of a cheap punchline.

Spoilers: He doesn’t die. He gets a “happily ever after.”

I'm writing a character who has photosensitive epileptic seizures and I was wondering if you have any tips on describing the experience of having a seizure?

My sister has them so I know what hers look like, but I've never had an epileptic seizure myself. Is it a painful experience? Is it more like fainting? What does the post-ictal phase feel like?

I know seizures can look different for everyone so rest assured this will not be my only source :)

Hello!

You're right that seizures are different for everyone, especially considering how many different types of seizures there are.

My last (Confirmed) seizure was several years ago. I have had some... "episodes" (For lack of a better term) that we're unsure if they were seizures or something else more recently but I'll be answering this with my confirmed seizures in mind.

I has epilepsy as a child and mostly had grand-mal/tonic-clonic seizures from what I've been told. For me, I experienced an aura anywhere from 5-10 minutes before the "main" seizure itself. This aura was usually a strange feeling in my head (Almost a tightness or pressure but feeling very loose as well? It's difficult to explain) with a rubbery taste in my mouth.

I can't say much about when the "main" seizure was actually happening as, for me, I wasn't really aware during it.

As somebody who faints... embarrassingly often, however, I can say confidently that it doesn't feel like fainting (At least for me). With fainting, I can feel myself starting to 'go' (My ears begin to ring and I feel almost like I'm fading out) and then I faint and it feels like I wake up almost instantly, even when it's been several minutes. For my seizures, it felt more like a blurred passage of time. I was an aware to an extent, I think, but not in the way it's usually defined (As being aware of your surroundings), it just wasn't like I was unconscious/asleep.

For me, I hated the postictal period the most. My seizures were usually accompanied by a loss of control over my bladder and would occasionally make me... not throw up, really, but almost spit up a bit. I'd usually wake up feeling incredibly tired and grumpy and usually ended up crying. The crying wasn't tied to any particular feeling, it was more of a physical response. And though I can now acknowledge that it's nothing to be embarrassed about, as a kid it was all pretty humiliating for me.

Just as a side note, my boyfriend also has seizures currently but not from epilepsy. I've been with him during his periods after the seizure before and he usually ends up acting like a kid, for lack of a better term. He cries a lot and is very disoriented but he's also very easily distracted. There have been several occasions where he's played with my keys for a few minutes before he comes back to it. He doesn't experience the same grumpiness and deep exhaustion that I did, though he has said that they make him feel very sleepy.

Although I didn't find the seizures themselves to be painful at all, there were several occasions where I ended up hurting myself during one. Usually this was hitting my head when I fell or during the actual jerking of the seizure but there have been other times when I had bruises or sore muscles afterwards. Given how young I was when I was having these kinds of seizures, I don't fully recall how the sore muscles/injuries felt as they didn't have as much of an impact on me as the seizures themselves.

After a seizure, I'd end up sleeping for anywhere from a couple hours to the rest of the day. I think part of it was the emotional exhaustion of a seizure while another part was the physical.

Now, I did speak a lot about the grand-mal seizures I experienced but I did also (And actually may still) have absence seizures as well.

A few years ago my seizures came back briefly and, despite my neurologist's best efforts, we couldn't figure out why. I'm not entirely sure how to classify them now but I was mostly aware during them and, from what's been described to me, my head was nodding up and down (To the point where it was all the way back), my eyes were rolled up into my head, and my eyelids were fluttering. I didn't experience any of the side-effects of my grand-mal seizures (Ex: Peeing myself, spitting up, crying, etc.) during these and I also don't know if I fell or not because when I had them, I was generally sitting down somewhere.

During these, my vision was flashes of colour/shapes and just generally what you'd expect from having your eyes rolled up and your eyelids fluttering. I was still aware that things were happening around me but I couldn't really process it the same way. I could hear people speaking but couldn't understand what they were saying.

You did mention looking into other sources for this and I'd definitely recommend doing that. These are just my (And, briefly, my boyfriend's) experiences and there are so many different experiences of seizures and epilepsy in general.

Cheers,

~ Mod Icarus

Hi lovely asker!

I have absence seizures and myoclonic ones so I'll add on my two cents as well (Cover more of the seizure spectrum here 😁).

For absence seizures for me its mostly just a complete blank space of time. There's one moment where I'm walking, talking, doing whatever and then the next thing I know I look around and usually like 30-ish seconds has past. If I was having a conversation and the person I'm talking to kept talking, I'm not aware of any of what they said when I was having the seizure. It's kinda like someone turns my brain off for a quick restart and then turns it back on again.

If there is nothing physical around me indicating of a passage of time. (Ex. Someone talking, I looked at the clock right before it happened, any living object that moves around) then I most likely won't know I had the seizure. Sometimes I have a little feeling because I often get headaches leading up to my absence seizures but other than that they're painless and more so there is that panic feeling of losing track of time. I'm usually just disoriented because of that sudden missing frame of time. I'll kinda look around, try to get my bearings, see what happened, if anything's changed etc.

Myoclonic ones really depend on how aggressive they are. They can be big (a whole side of my body will twitch) or itty bitty baby ones (my fingers twitch or I can feel certain muscles twitching). Kinda like with Tonic-Clonic seizures, all the muscles involved will contract on me and it's painful. Often times they're more annoying and frustrating than painful (trying to eat breakfast one time and let's just say my eggs ended up across the room).

They can cause my legs to jerk too which if I'm walking will make me just suddenly fall as my legs give out. Sometimes they can just happen as one, or they can cluster and that means that multiple happen in a row. When they cluster, they're often more painful because my muscles are contracting so many times. If I fall like I mention I often hurt myself because I just completely fall to the ground (not like fainting, I'm conscious and alert and I can move my arms and torso, it's usually just my legs that are the problem.)

Leading up to my myoclonic seizures sometimes I get really really really bad tremors that worsen with movement to the point where If it's my legs then I can't stand or walk (trusty old wheelchair). And if it's my upper body than my hands have very little use to me so things like eating, changing (buttons my enemy), writing, and pressing buttons is very hard to do (also I will add that I just have very clumsy dexterity in general so the tremors certainly don't help but yeah XD)

For all my seizures in general I get very light sensitive afterwards and my lovely doctors and nurses have told me it's because my pupils get completely blown and then constrict and they do this rapidly and it's often paired with nystagmus. So my Post-ictal is usually more just being sore, my head hurts, my eyes are very sensitive and usually the nystagmus is what lingers on the longest.

For tonic-clonic seizures (which I won't go into much because Icarus already did) they're the most painful for me and it usually hurts to move afterwards. I usually start to mumble and can't talk when they're about to happen it's just a lot of "um's" and "uh" and I can't form any words. I start to rub my hands over my body because my skin gets this tingly feeling, and I start to kinda look around frantically because again my anxiety does no help. During the seizure I'm usually in and out of consciousness so it's black and then I'll hear or see something for a split moment and then black again and yeah so on and so forth but I can remember bits and pieces (that I'm conscious for that is). Everything usually sounds really far away like I'm under water and my vision of what I can see is very blurry and there is usually like ten of the same person.

Very rarely i've stopped breathing during my Tonic-Clonic and with those they're usually not as painful (don't ask me why) but they are. Granted that initial struggle to breath again is a bit jarring but in my opinion these are a lot more traumatizing for the people around me than me myself.

Alrighty, hopefully this is of some help lovely person! As Icarus said this varies very wildly person to person and seizure to seizure so yeah. Have fun writing!

Epilepticon Movie Marathon 2024

Smallville (2001) (Jitters) dir. Michael Watkins

Summary: After being exposed to meteor rocks at his workplace, Earl Jenkins begins developing earth-shaking seizures. When his former workplace denies a connection between their experimentations and Earl's seizures, Earl goes to great lengths to prove something sinister is happening.

Representation: Earl has seizures several times throughout the episode and they are always portrayed as tonic-clonic seizures. As his seizures are supposed to be super-humanly powerful and fast, blur motions are added around Earl when he is twitching to give the appearance that his movements are occurring faster than the human eye can process.

The story does touch on some of the social impacts of epilepsy. After developing epilepsy, he lost his job, his wife left him, and he no longer has custody of his child as it was argued that the child wouldn't be safe around him if he had a seizure.

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.

[Image ID: A 6 panel excerpt from Parenthesis:

Panel 1: Three women (Sandra, Marine, and the main character Judith) walking in the snow with little action. Judith’s eyes are darkly shaded to imply she’s having seizure activity. Dialogue: Marine: “Want some chocolate, Judith?” Judith: “No.” Marine: “You sure? You love it.”

Panel 2: Women still walking with Judith’s eyes still darkly shaded. Dialogue: Marine: “I’m gonna finish it off! Sure you don’t want some?” Judith: “Yes”.

Panel 3: Judith’s eyes become clear and visible. Dialogue: Sandra: “Let’s hurry up. We’ll miss the movie.”

Panel 4: Judith turns to Marine. Dialogue: Judith: “What are you eating, Marine?” Marine: “Uh...chocolate?” Judith: “Save some for me?”

Panel 5: Both Marine and Judith look frustrated. Dialogue: Marine: “Aw, c’mon, Ju! I asked you! You said you didn’t want any!”

Panel 6: Judith hangs back from the walking group as Marine still looks frustrated. Dialogue: Judith: “Oh. Are you sure?” Marine: “Yes!”