Emissary of the Epilepsy Fairy

@fuckepilepsy

Now in retirement.

3,456 posts

the-twitchy-life

Epilepticon?

Yall, October is just tiring, between the beginning of the school year and the high holy days and just, the pall of winter falling over us. I haven't been on to talk about Epilepticon 2024, but I'm out here thriving my butt off. Hope you're well.

It would seem that EpileptiCon is at its end.

I feel a little sad, but I'm proud of what we accomplished with it.

Time to shit talk epilepsy. (This will just be a vent.)

Recently, my sister got to join the national womens cricket team and play an international tournament in a beautiful region in Spain. This was big news becouse A. Good for her but also B. I got invited to join my dad and sister in spain to watch her play.

Fantastic, right? Wrong!

Becouse apparently every possible flight there in our time frame required me to get up around 5 am. And obviously, that's not possible. Because everyone knows seizures get triggered by getting up early.

So instead of relaxing in a beautiful region of Spain watching my sister play topsport, I get to stay at home and take my medicine for another lovely week full of disability.

Epilepticon Day 19 prompt

Purple is the color for epilepsy awareness. Would you change it if you could? To what?

I usually say "red" but this year I'm going to say black. From a color theory standpoint, black doesn't fit my philosphy regarding epilepsy as well as red, but it's a reasonable consolation prize if I can't have red.

it's epilepsy awareness month, which means that i, as an epileptic, get to make you aware of whatever I want.

did you know it's legal for police departments in the United States to not hire people because they have "too high" of an iq?

✨️ ✨️ ♥️ awareness ♥️ ✨️ ✨️

couldnt find good epilepsy memes so yeah fine i'll do it myself

It's epilepsy awareness month. I am epileptic. Be aware.

Y'all ever go awhile without having a seizure which make you pretty proud of yourself and then suddenly you get this feeling and you're like . . . oh no

Epilepticon Day 7 prompt

We spend a lot of time (rightfully so) talking about ableism against the epilepsy community. But Epilepticon is about celebrating the community we have. Tell us about an experience where you felt fully supported by either the epilepsy community or allies to the epilepsy community.

I've never let another person offer me support. I've never asked for it nor let on when it might have been helpful.

However, I felt a great deal of validation when EpileptiCon 2017 became a rousing success. It exceeded my greatest hopes and I was honestly astonished by it.

I knew that the concept of an Internet festival for epileptics was utterly absurd. I knew that encouraging people to have "fun" in a place of misery and despair was almost offensive.

And yet, it worked. Dozens of people participated, many of whom I had never seen in the community before. I could barely keep up with the onslaught of posts, and I tripled my own post count reblogging them. It felt like I had thrown a party and the entire community showed up to rock out with me.

My efforts in the following years were not as successful, so I continue to fondly remember 2017 as the pinnacle of my time in the community.

Epilepticon Day 6 prompt

Another serious prompt here. I’ve seen individual people within the community have differing opinions on this so I’m curious:

If a cure for epilepsy became available would you take it? What would the risks have to be for you to not take it if you would otherwise take it?

Yes, and as long as it doesn't leave me somehow worse off, I wouldn't hesitate.

Epilepticon Day 5 Prompt

It’s not Epilepticon without a prompt analogous to the spaceship crew in my opinion. And I’m a huge fan of fantasy and tabletop gaming settings personally so I’m curious:

If the epilepsy community were one giant tabletop RPG, what role would you play? This can be anything from an important player character, to designing an non-player character who runs the local tavern.

I'm that one villager with giant rats in my basement. Somebody please come kill these giant rats. I'm offering 10 gold and a unique dagger that belonged to my late spouse. It inflicts poison DoT and does 50% bonus damage to beasts. Like giant rats, for example.

Epilepticon Day 2 prompt

Epilepsy awareness month is sandwiched right in between Halloween and Christmas, two of the most widely decorated for holidays (at least in the US). If epilepsy awareness month had traditional decorations, what do you think they should/would be?

Windchimes, but made out of empty prescription med bottles.

hot tip if you think seizures are just like violent convulsing then maybe you should do a quick read about seizures on any reputable health website

I just saw a post in the epilepsy tag that reminded me I should probably make an announcement ahead of November, I will be attempting to run Epilepticon again this year! For those of you who are unfamiliar with it, Epilepticon is an event for the epilepsy community on tumblr where discussion prompts are posted every day of November to encourage the community to interact with each other more and make Epilepsy Awareness month about the epilepsy community itself, not just about educating people.

In the past @fuckepilepsy and @the-twitchy-life have done an amazing job bringing the community together in November, and I ran the event last year. For those of you who are familiar with Epilepticon but didn’t see me running it last year, I do things slightly differently from past Epilepticons in that I do not offer a giveaway.

Also, any posts that a member of the epilepsy community makes during the month of November can be tagged with #epilepticon or this year, #epilepticon 2023, or #epilepticon day (insert number here) , whether or not it’s a response to a prompt, and I will do my best to reblog every post in those tags. (If you include images in your post please also try to provide an image description, and I will remind people of this request if I include any image based prompts).

Examples of past prompts for an idea of tone have ranged from things like “what is one thing you wish people would understand about epilepsy that you find yourself explaining over and over again?” To “if the epilepsy community was a spaceship crew, what would your job be?”

the-twitchy-life

HOORAY for @haikyuupaladin! You're a champ for taking it on, I can't wait to see it.

My gratitude as well.

impromptu-breakdancing

Happy Halloween

#Looks good little sibling

Epilepticon Day 1 Prompt

Hi guys! Welcome to Epilepticon! I hope to be seeing everyone’s awesome posts throughout the month! As today is the first day, and this month is Epilepsy Awareness Month, we’re going to start off with a classic serious prompt:

What’s one thing you wish people understood more about epilepsy? Is it something you find yourself explaining over and over again, or something you don’t even attempt to explain because you know people won’t understand anyway, or just a common myth/disinformation/misunderstanding?

Do not put a thing in my mouth. It is impossible to swallow one's own tongue.

the-twitchy-life

Coming out (as disabled) at work

I talked to the school nurse, and I'm considering 'coming out' at work next fall.

What that would involve is probably an email in September or August outlining:

-my history with epilepsy -what kind of seizures I have -how to recognize my seizures -what to do in case of seizures (this would have several parts) -??? -PLEASE DO NOT CALL 9-11 (unless I am injured) -feel free to ask questions, really, it's okay

On the one hand, this email would make me safer at work, and I'm not ashamed of having epilepsy so this SHOULD be fine.

On the other hand, I am so nervous about writing or sending this email. It's so public, and my health is something that is SO personal. I don't really want everyone to know how often I seize at work- what if I get sent home every time I seize? I might lose my job! Then again, I do want the safety of everyone knowing how to treat my seizures if I did have an emergency.

The idea of writing this email scares me deeply.

Part "what to do" would also involve telling EVERYONE that I carry benzodiazepines with me 24/7, which is essential for them to be able to treat me but also like, not great for someone struggling with addiction to know. And someone might have an addiction!

The good news is, I have until September to fuss over writing this email. The bad news is, I have until September to fuss over writing this email.

The High Council of Epileptics Ministry of Propaganda recommends that you employ deceit and not let on that you're carrying substances that hold some appeal for addicts. Give the impression that your medication is instead deeply unpleasant.

People are ignorant as fuck about epilepsy. You could say "these pills will literally kill anyone who isn't epileptic" or "this is actually just Midol and I stole it anyway" or "these are laxatives; shitting myself uncontrollably puts a stop to my seiures," and they would probably believe you.

In a vacuum it sounds absurd, but dress it up with a bit of medical jargon, deliver it with a straight face, and you can fool anyone who isn't medically trained.

Example: "I can take these orally because I have a VNS implant, which stimulates the anterior musculature in my neck. The resulting contractions of the sternohyoid muscle applies the necessary pressure to activate the moleculuar compounds in the pills that incapacitate neurons. If you don't have a VNS implant, you have to insert them into your ocular cavities behind the eye and wait for them to dissolve."

Should you find that your pills turn up missing, please contact the Ministry of Vengeance. An agent will be dispatched to locate and retrieve your pills.

the-twitchy-life

Give me my brain, or give me... ?

It took like, five years for my Wonderful Neurologist to start suggesting surgery. Now my new neuro is suggesting it too. But he started with 'resection', aka removing the part of my brain that's extra sparky, and I gotta say I hate that idea.

Removing part of the brain might be the right choice for many people, and I'm happy for them. I worked with a woman who got a temporal lobectomy and became completely seizure-free. (She wasn't okay, but she wasn't seizing anymore.)

All I can think about when I hear that is Rose Kennedy, and the thousands of other people who had big chunks of their brains removed without their informed consent, and I absolutely Will Not.

And he emphasized that I might be better off without the part that's causing seizures, especially since I'm currently on three medications. And they have very good surgeons, and they can use lasers to just burn a little bit of brain off. And I gotta say, the more he tried to un-freak me out, the more freaked out I got.

So.

We talked about the testing they do beforehand instead, and the healing from that (he insists it's minor, but he's not the one getting holes drilled in his skull). He barely mentioned other choices, like fun medical devices or that giant-magnets-alongside-your-head study that was going on a while back.

This conversation felt a bit like him trying to convince me that partial lobectomies are just fine, really! And I don't trust him very much anymore.

Emissary of the Epilepsy Fairy @fuckepilepsy - Tumblr Blog | Tumgag