seen from Poland
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[image ID: the Futurama Fry meme, the top text reads “can’t remember if I took my meds this morning” and the bottom text reads “or if that was yesterday” end ID]
This is definitely a common problem. It’s tricky to remember if you actually did something or not when it’s such an ingrained routine that your brain goes “oh yeah! We did that!” And conjures up a memory of doing it but now you can’t tell WHEN the memory is from.
Epilepticon 2021
Hey all! November is on its way, which means it’s almost time for EpileptiCon! What is Epilepticon, you ask? Great question!
November is Epilepsy Awareness month. Several years ago, @fuckepilepsy and I were thinking about how much we’d like the month to be a party for us- to make our lives a little bit brighter, just for November. And so was hatched the first EpileptiCon.
How do we do this? By posting a ton of epilepsy-related content on tumblr, of course! Tag your posts #epilepticon2021
YOU ARE INVITED TO
What: a big old online party
When: November 1-8
Where: Tumblr
How: Make a post, and tag it #epilepticon2021
Who: You! (maybe)
Why: To build community, make friends, and generally be a bad influence on each other
FAQ:
Does it have to be meaningful or awareness-raising? No! Doodles, a poem, a section of your EEG printout, your recipe for post-ictal no-bake cookies, it’s all good.
Do I have to be epileptic to participate? Epilepticon isn’t just for epileptics- PNES, migraines, if your brain doesn’t work right you’re welcome here. We all deal with similar stuff, let’s talk about it.
Do I have to post something about the daily prompt? No, post whatever you want. The prompts are only there to help you if you’re hitting a creative wall. You can completely ignore the prompts if you want to.
20 Years of Broken Wires
Sometimes it starts with a small thought at 1am. It’s one you’ve had every single night for the past week. Month. Year. Lifetime. “Is this it?” “Is this the last night?” but despite that twitch in your leg and tingling face it’s never the last. But you’re so awake and so tired at the same time can the side effects figure themselves out. Just lay there in fear you’ll fall asleep eventually, it’s all in your head after all.
Sometimes it’s a thought in class. A stroke of a pen and you freeze. did you pop that little orange pill? Did you miss a dose? And every doctor you’ve had nags at you all at once. Set a reminder. Set a reminder. For god sakes just remember amd set a reminder. So hands start shaking and double words show up on the computer. When did you start seeing stars?
It’s a memory. You walk into a room and look around. Which was the cause now? What fired in that brain of yours that made you buffer and forget in five seconds. It’s a speech in 10th grade that you can’t say because your speech has been fucked since you were in 1st grade. That woman trying to fix the unfixable always was a bitch.
A memory of elementary school children playing kickball during recess and your up. You’re excited and the red rubber ball flies towards you on the black concrete. You kick and it flies high. You run and already feel your leg give out. You’re out, children don’t care about side effects and ticks and mini seizures that make you fall the second you take off running.
Maybe if you just took off that leg it would be over. The wires would connect and your body would stop shaking and convulsing. Your mom can stop asking you questions you can’t answer for another three minutes. It has to be three. If it’s five you’re done for and the red and blue lights flash. When those lights flash it’s over for you. The last time those showed up was when you were two and you can’t even remember. Why do they scare you so much then? Get over it theyre lights.
Those lights aren’t the cause, but you can’t convince them. Every roller coaster ride and haunted house they ask the same question. All your life it’s can you do this. No one listed when you say you can. So you don’t because it’s easier to simply say no. No you can’t do it. Sit down and shut up and let your brain fire off like it should. The boardwalk is the worse and the best. Ice cream and toys and “cover your eyes don’t look over there at the flashing lights.” They act like they know all my triggers.
What’s it like for all those non twitchys. Do they sit in that metal tube as well with wires all over. Do they sit in that chair with needles sucking your insides. Do they worry about coffee? About how it helps one part of you and hurts the other. Do they think they’re normal? Do they know they are. Wait, no, that’s not what your supposed to say because remember. You’re a gift and not a three thousand dollar burden on your parents.
What do you fear? Spiders? Ghosts? No. Sleeping? Not sleeping? Medicine too early? Medicine too late? Being alone? Being with someone? Yes. Life is fear because if you even think of that train whistle you can hear so clearly a though passes. “Is just the sound gonna make me seize?” Shove it away before you get the chance to find out. You’re not suicidal enough for that right now. Wait for the comorbid depression to hit in december. Then you can think of the whistle.
Heavy gasping breaths but it’s okay boss I can come in at 2. Pounding head your change is $4.25. Check the bathroom but don’t throw up. Lunch break and 30 minutes is never enough but especially not now when the world is spinning and you can barely breathe. 4 hours left but don’t send me home. I need money more than I need a safe mind.
Get to class ignore the white stars the show up on the quiz. Hand down eyes down don’t let them see the eyes rolling. Understand you’re not filled with hate towards them, it’s the non stop blinks that hurt that pisses you off. Thank god for trokendi or necks would snap.
Go back, what’d you say? Sorry friend I zone out sometimes. I didn’t tell you but I sat with water trying to swallow for two minutes because it wouldn’t go down. I promise I took it don’t worried, it’s midnight don’t bring on the paranoia. But we already know an overdose is better than none at all. Fine all take it again. Better lucid that dead. What were you talking about? I get off track, I’m tired.
There is no going out for you. You don’t get what they have. You can’t get blackout and party till the sun comes up. Where are the movies that show the kid reading a book and listening to the pumping frat music. This is college, just go out. It’s normal, be normal for once would you. Risk it for once.
It’s a waiting game until your 25. Then it’s over and your stuck. They say you never stop learning and the brain is changing but we know better. There’s a cutoff of acceptance. It’s been 22 years and you still have desperate hope you can make it to 25 without having a morning of wide eyes and closed lungs.
Three more years and maybe a lifetime of warnings. Of fearful nights and careful mornings. Unresponsive and hearing things no one else is. Stomach keeps turning but what else do you do but hold on to the wall on the way to a dorm bathroom.
Having a seizer be like
Yes I have epilepsie, Yes it sucks
Happy epilepticon everyone
@fuckepilepsy
EPILEPTICON 2021 GIVEAWAY
This is the fifth annual EpileptiCon, and I have done a giveaway for four of them. The reason I do this is not just to incentivize participation, but also to provide some FUN for a community of people who are otherwise united exclusively by a shared experience of something terrible. This is a mission of goodwill!
Unlike previous years, this year's giveaway has no theme. It's mainly comfort objects that are useful to your average chronically ill individual. This year's giveaway includes:
A heating pad. I use one of these every day. Good for soothing muscle and joint pain from seizures. 12" x 24." Fuzzy.
A thermos. One of those "over-engineered" high-end brands. Will maintain the temperature of its contents all day, or, if you have a time machine, to just whenever. Holds 21 ounces. Purple.
Herbal tea. Traditional Medicinals "Nighty-Night Extra" Valerian tea. Sixteen bags in this box.
The warmest socks imaginable. Sherpa-lined fuzzy socks. Little rubber nubs on the soles to prevent you from slipping and falling on your tail.
A pill fob. A little tiny container and a d-clip to match. I have worn one of these on my hip for probably ten years. I wrap one of my emergency anti-convulsants up in a bit of tissue and keep it in there. It honestly functions as a safety blanket as well. it is a comfort knowing that salvation is dangling from my belt loop.
A throw blanket. I normally get a purple one, but I saw this RAINBOW UNICORN print and knew that I had to get it. Like the socks, it is fuzzy sherpa one on side. 50" x 60." And did I mention the RAINBOW UNICORN print? RAINBOW UNICORNS. ON A BLANKET.
Giveaway rules:
1. You gotta have a seizure disorder. I don't care if it's epileptic or psychogenic. If you have seizures of any kind, you're in. It doesn't matter how bad they are, or if you've been seizure-free for years.
2. CONTACT ME DIRECTLY TO LET ME KNOW THAT YOU'RE IN. Message me, shoot me an ask, @ me in a post, something I can verify so that no one gets left out. Some people prefer to participate without being a part of the giveaway, so I need to know who's who!
3. Make epilepsy posts and tag them #epilepticon2021 as specified in the EpileptiCon 2021 announcement post. If Tumblr isn't letting you post to tags, @ me in the post so I can see it.
4. MINORS ARE DISQUALIFIED. I respect you as a human being and your thoughts and feelings are deeply important to me. I take you very seriously as a person. I am not saying that you don't count and that I don't want you to participate. It's that I am an adult, and an Internet stranger, and as a matter of principal it is a VERY EXTREMELY BAD CALL for a young person to give their mailing address to an Internet stranger for any reason.
5. Selection of the winner is random, and will take place after EpileptiCon 2021 has concluded on November 8th.
If any of this seems convoluted, you can thank Tumblr. My experience trying to hold a giveaway and manage an Internet convention on Tumblr, with all of its quirks and shortcomings, has been a challenge. Each year I try to adapt to the problems I encountered the previous year, and this is where we are now. Please message me if you have any questions!
And again, if you don't want to be a part of the giveaway, that's fine. I hope that you, and everyone, will participate regardless. Being a part of the giveaway bit is an optional thing for fun.
Epilepticon Movie Marathon 2021
Fast Color (2018) dir. Julia Hart
Summary: Ruth, a woman with an unspecified seizure disorder that is negatively impacting her superpowers, is on the run from scientists who want to study her. Along the way, she reconnects with her estranged family who have similar powers to her own.
Representation: Ruth's seizure disorder is a bit fantastical (it causes her to create earthquakes in the surrounding area). However, the film touches on enough seizure-related experiences that it feels like the filmmakers truly wanted to explore these experiences rather than just use seizures as a visual indicator of her powers.
First, she is shown having multiple on-screen seizures throughout the film. The film shows the process in which she handles the situation. She first experiences tremors, removes any potential hazards, and locates a safe space to have a seizure .
It's stated that Ruth started having seizures when she hit puberty and that it had a negative impact on her life. She became disconnected with her previous superpower, distanced herself from her family for fear of harming them, and ultimately fell into alcohol and drug addiction to try and stave off the seizures.
In flashbacks, it is shown that as a child, Ruth's parents would tie her down to the bed when she had a seizure. The film never directly addresses the danger in restricting the movement of a person having a seizure.
The film concludes with Ruth being able to stop an ongoing seizure while in the clonic phase and the ending implies that she'll be able to do this feat again.
Note: There is a sequence near the climax of the film where Ruth encounters a field of flashing and swirling bright lights. While the flashing of the lights is slow, visually it can be overwhelming.
@fuckepilepsy
not logging onto tumblr.com bc i got a new phone, started a new job, been vibing heavily at school, and stuff— :)))))
missing most of epilepticon— :(((((
Here’s my favorite panel from a comic I made after my epilepsy diagnosis. I’ve posted it elsewhere before, but I thought I would bring it back for Epilepticon2021.
