#epilepsy things

As someone who grew up in the early eye-strain geocities days of the internet where blinkies, blingees, cranked bright contrast/saturation, and stamps/flashing avatars were EVERYWHERE, just keep in mind how incredibly unsafe it was back then for those of us with epilepsy.

Hi anon 👋

I think this is coming from a genuine place so I will give a genuine answer, unfortunately you are misinformed.

First, I will start out by agreeing that yes faking seizures or anything really is an incredibly shitty thing to do.

However, I do not know this person or their situation so I personally cannot nor do I feel comfortable saying that based on this they are faking. I’m not one to fake claim to begin with.

This person could be dealing with epileptic or non epileptic seizures both of which I explain here.

Starting with personal experiences:

I myself have had an hour and a half seizure (documented in the hospital)

Here’s a small snippet of just one of my seizures that lasted over an hour that required me to be brought into the hospital by ambulance (rescue meds failed).

I did not suffer any brain damage.

I also personally know other epileptics and non epileptics who have had hour longer plus seizures, even 3 hour seizures and ended up in comas and did not suffer brain damage. It’s definitely possible.

Official Sources:

Medlink Neurology: what kind of seizure was this person having? absence seizures in status epilepticus have been known to last for up to days.

Cleveland Clinic: Functional seizures are normally characterized to be 10 minutes+ surpassing the status epilepticus range

Healthgrades: Direct quote “Seizures can last seconds, hours, or even days.” with or without harm? That depends on the seizure and the person’s situation but it’s medically possibly.

All in all - we cannot assume.

I personally have not experienced brain damage but I have experienced things such as:

Again, screenshots come from my personal medical chart. I’m sharing it purely for educational purposes.

We also should not be fakeclaiming or judging people’s conditions.

Is harassment and hate shitty absolutely? I never condone that behavior. However, I do not condone misinformation or accusing people of faking an event or illness just because of their behavior.

My Epilepsy: You're celebrating me? Aw, here's a little presentation to show my gratitude!

Me, recovering from the small seizure quickly but nursing a long-held bitterness in my heart: Yeah. Even you. I mean, more myself as an epileptic and the epileptic/seizure community and what it means to be disabled than the way I feel after you've knocked me out for a few seconds. The unique way I live my life because of how your influence shapes it, how that connects me to others who are influenced by their own epilepsy and/or seizure disorders, how it contributes to who I am as a person, that I'm celebrating.

My Epilepsy: So... you're not gonna let yourself overheat to give me a chance to hit you again, like you did today? Not even for disability pride month?

like, when i say im neurodivergent i always have to say "technically" so i dont accidentally have people believe im autistic, even though i am by definition neurodivergent (epileptic)

What the heck am I talking about? What is "Radio-ing" anyway?

The answer is really simple, actually! I have epilepsy with photosensitive and eye-strain triggers, and while my medication helps with lowering the possibility of a seizure being triggered, sadly the chance is never at a full zero. So, I and many other epileptics out there like me, have to find other ways around things that are otherwise not accessible for us! What I call "radio-ing" is one way I do that! I've mentioned it a few times on my blog and in other posts in the past too!

Radio-ing as I call it, is an accessibility tactic I came up with back when I was still a kid, and I still use to this day as an adult! Basically, when I'm watching a show or movie that IS NOT seizure friendly or otherwise accessible to me, I do the following:

I start by sitting in a well-lit room with the piece of media on a small screen or on my computer. I turn the entire device (usually my laptop) around/away from me to face the wall. I also turn my chair to face away as well, this is just for in case any lights might get reflected on the flat surface of my wall. The well-lit room and me facing away means I won't see it at all! Then, I plug in my earbuds or headphones and listen to it, like a radio show!

I like to imagine what could be going on based on what I already know about the piece of media. For example, if it's a show I already know, I'll be able to imagine the characters along with the spoken dialogue just fine, and let my imagination run from there! This way, I'm able to engage with a piece of media no matter how "unsafe" it might be for someone with epilepsy!

Or at least, it's one way around it! If it's something that has an insane amount of strobe lights and eyestrain, one example being the spider/verse movies/etc, I just won't go near it at all. This technique is mostly for individual cases here and there, like if there are a few unsafe episodes of a usually accessible show.

An additional note: This obviously only works if the audio is in english. If I have to read subtitles, I'm out of luck. (Plus I'm dyslexic on top of that lol) One more reason to not tease someone for preferring dubs over subs for media that's in other languages.

Anyways, I made this post because for me, this is a go-to-no-brainer that I've been going for years and years and just felt like talking about it! However, in addition to that, maybe someone else could use something like this and hasn't thought of it themselves yet! Or maybe someone out there just wants to know what I'm talking about when I say "Oh, I'll just radio it later!" Either way, it's such a big part of my own accessibility, and I wanted to share it!