the-twitchy-life

[the-twitchy-life]

ohmygod I love it, look at those neat little barnacles!

Coral Reef Textile Art // Evas Doodlings

[the-twitchy-life]

My comfort food is homemade brownies. I have a recipe that takes about an hour to make, and since cooking is relaxing for me the whole process is helpful. I've got it so I need one mixing bowl, a half-cup measure, one knife, a pie plate, and a couple of spoons.

Sometimes I listen to podcasts, but it can be hit or miss as to whether that will be more or less stressful. NPR, the New York Times, a handful of others.

And of course, there's always fanfiction.

Epilepticon Day 26 prompt

Sometimes epilepsy is hard to cope with, and not just because of stress and anxiety but because of disappointment and sadness. What are your go to comfort foods, comfort items, comfort shows, etc?

#when in doubt there's always Kirk/Spock #epilepticon 2023 #epilepticon #epilepticon day 26 #actually epileptic #space grandpas ftw

[the-twitchy-life]

I wish I'd known more about how a medical relationship should work.

For example, we need to be having a conversation. They need to be asking me questions, and listening to my answers. I am the only one who knows what my seizures feel like, or how often I am having seizures.

It's not like an ear infection, where they do a test and tell me what is wrong. I have to tell the doctor what is wrong. And if they're not listening, then they're not doing their job.

Epilepticon Day 29 prompt

What’s the one thing you wish you knew when you were first diagnosed or first truly starting to understand your diagnosis?

#epilepticon 2023 #actually epileptic #epilepsy #epilepticon day 29

[the-twitchy-life]

I just hosted my first dinner party since the divorce, and it was Thanksgiving, and it was great! We had a halal, kosher, gluten and dairy-free meal that was delicious and satisfying for everyone involved.

Epilepticon Day 23 prompt

Let’s take today to celebrate the accomplishments of people in the epilepsy community, big and small. What’s something you’re proud of accomplishing? It can be as small as getting out of bed and getting dressed today, or something big. It doesn’t have have to be related to your epilepsy, just something you want to celebrate!

#I love hosting dinner parties #just for a while I didn't have enough friends to fill a table #and now I do and they're wonderful and I'm proud #of my friends and my cooking skills and my ability to do what I want on Thanksgiving #epilepticon 2023 #epilepticon #epilepsy #actually epileptic

[the-twitchy-life]

I'd take it in a hot second.

The risk would have to be... pretty high. Epilepsy makes my life a lot harder, and all signs point to it getting worse with time. So the risk would have to be some other disability and/or death. The disability would have to be escalating and painful.

Loss of a sense (like Deafness or blindness) is something I could learn to live with. Similarly loss of a limb. There's a lot I have learned to live with, so I know that I could live with a lot in exchange for not having epilepsy anymore.

Heck, even if it was life-threatening, I'd need a significant percentage.

Look, I consider my epilepsy to be the major impediment to my ultimate success. I'm doing pretty darn well despite it, but my life without epilepsy would be WAY easier. I'd drop it like a bag of hot dog poop.

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?

#epilepticon 2023 #actually epileptic #epilepticon day 6 #epilepticon

[the-twitchy-life]

I wish I could have sweet things for breakfast.

I love chocolate chip pancakes, and muffins, and coffee cake, or even apple sauce. But the blood sugar spikes throw me for a twist- I'm not sure if it's seizures or weird meds stuff, bc for me they can look similar. Whatever it is, they really mess me up. I get dizzy, my eyes won't focus, I can barely walk (I've fallen over many times from it). The only cure is sitting quietly until it's over. Hours later.

But donuts and coffee? I swoon.

Epilepticon Day 20 prompt

What’s one thing that you wish you could do but can’t because of your epilepsy? It doesn’t have to be something big, it can be something tiny or something that doesn’t affect your day to day life but that would be cool to do anyway. Anything is fair game.

#actually epileptic #epilepticon #epilepticon 2023

[the-twitchy-life]

Arrrgh. I never know, so my answer depends on the context.

Like, if someone is asking, "is there anyone neurodivergent who may need _____ kind of assistance at this event?" (quiet spaces, subtitles, adjustable volumes/lights, chairs, snacks, etc)

Then I say yes, because I'd rather they have more assistance available than less.

But if there's a neurodivergent-only safe space, I'd probably say no, because they're probably not going to be discussing my kinds of challenges, and I might not be welcome.

But I also have ADD, so I'd actually say 'yes but it's complicated,' because what in life isn't?

Epilepticon Day 18

Do you identify with the term neurodivergent when it comes to your epilepsy? Why or why not?

#epilepticon day 18 #epilepticon 2023 #actually epileptic #epilepsy #epilepticon

[the-twitchy-life]

Okay, so I don't have a ton of ttrpg experience, but I really loved playing a Cleric. So I'd be a healer/cleric, running around and making potions and healing folks in my party when they insist upon attacking things, and making the occasional sacrifice and ritual to the deity I follow. Who may or may not be an angora bunny, who I honor by carrying a large angora bunny with me.

The bunny walks on a leash, and I spin its fluff into lovely soft yarn. My party has very soft and fluffy mittens and hats.

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.

[the-twitchy-life]

Oh, make sure the baseball bat is PURPLE. For epilepsy awareness.

(*cackles*)

Epilepticon Day 12 prompt

As much as we’re working to make this month about the epilepsy community, it is still epilepsy awareness month. Share some creative ideas for raising awareness! They can be actually feasible ideas, or the most impractical ways possible, or ways that are literally impossible but would be fun and/or effective if they were!

[the-twitchy-life]

I prefer epileptic, and I'll honor other people's desires but I feel pretty strongly about it for myself.

I'm a Bostonian. I'm an American. I'm blue-eyed. I'm a brunette. I'm right-handed. These are things I was born with, and I'm not embarrassed about them. They're just facts.

I was also born epileptic, though it didn't manifest strongly enough to be noticed until college. I don't think I should be ashamed of that either. But if I say I'm blue-eyed, but I'm a person with epilepsy, that sets epilepsy apart. It says that epilepsy is different, and something that maybe I should be ashamed of.

And look, I can be embarrassed about lots of things. But epilepsy will NOT be one of them.

Epilepticon Day 17 prompt

Do you prefer epileptic or person with epilepsy or do you find them pretty interchangeable? Tell us about why you prefer one or the other too!

#epilepticon 2023 #epilepticon #actually epileptic #epilepsy

[the-twitchy-life]

ooh, I'd watch that

[Image ID in alt text]

Epilepticon Movie Marathon 2023

Dog (2022) dir. Channing Tatum and Reid Carolin

Summary: Jackson Briggs, a former US Army Ranger deemed unfit for service after suffering a brain injury, travels with Lulu, a military service dog, so they can attend her partner's funeral.

Representation: Jackson notes that his brain injury can cause him to have seizures and has to take medication regularly in order to control them.

Halfway through the film, his medication is stolen and he is unable to get replacement medication because of his time-crunched road trip schedule. Near the end of the film, due to a combination of a panic attack, heavy alcohol drinking, and the lack of meds in his system, Jackson has a seizure while alone with Lulu. The seizure is quick, involves a lot of repetitive hand and mouth movements (such as hands repeatedly opening and closing) and ends with Jackson having muscle contortions on the bathroom floor. Once the seizure is over, Lulu is there to comfort him.

Note: The film includes several discussions related to PTSD, trauma, and suicide.

[Image ID: Three screenshots from Dog (2022):

Image 1: A long stretch of desert road with a car driving down the road alone.

Image 2: A car parked outside overlooking a Pacific Ocean coastline. Sitting in the trunk of the car and overlooking the coastline are Jackson Briggs, a man in a green t-shirt, blue jeans, and boots, and Lulu, a German Shepherd dog. Lulu is looking at Jackson and he is looking at a book.

Image 3: Lulu, a German Shepherd dog, rests her head on a pair of combat boots. She is wearing a beige military camo dog jacket.

/end ID]

[the-twitchy-life]

The trigger I have the most trouble with is blood sugar- I wish people would provide sturdier snacks, so I didn't have to choose between nothing (and getting hungrier) or eating something too sweet and really effing myself up for the next few hours.

At one of the Walks for Epilepsy, they had tubes of peanut butter available as snacks for the keto kids. I want tubes of PB to be a regular snack instead of muffins or donuts.

Epilepticon Day 4 prompt

We talk a lot about flashing lights as a trigger because that’s one of the more well known triggers that people other than our ourselves have control over. But other triggers often get lost in that conversation. What kind of triggers do you have for your seizures and are there ways that other people can either help with these triggers or be more respectful and mindful of them that you wish more people were aware of?

#actually epileptic #epilepticon day 4 #epilepticon 2023 #epilepsy

[the-twitchy-life]

I think the traditional decorations should include:

-wreaths made up of free clean clothes for folks who have soiled themselves -nap areas set up on everyone's porches (tents, fuzzy blankets, pillows, etc) -altars to the Epilepsy Fairy -pharmacy bottle garlands -snack tables (free for epileptics but otherwise taking them is punishable by death)

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?

#actually epileptic #epilepticon 2023 #epilepsy

[the-twitchy-life]

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

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?”

#epilepticon 2023 #actually epileptic #EPILEPTICON GO!

[the-twitchy-life]

We've got some new folks at work and I've got to tell them "this is what to do if I _____." Clearly I've forgotten how to say things nicely bc they all look alarmed and horrified. One of them keeps checking if I'm okay and offering to help with stuff. Nah man, I'm disabled but I can carry heavy boxes just fine!

I make funny little jokes about my medical problems then remember they are debilitating illness and they aren't so funny anymore

#oops #scared the ableds #actually disabled #actually epileptic #to be fair the new guy's first day of work was a bad meds day #so I was kinda staggering #not a great first impression to make with an abled person who I'm trying to convince that I can actually do my job

[the-twitchy-life]

medically, logically, just generally shaky over here.

New term for epilepsy unlocked

#actually epileptic

[the-twitchy-life]

This is why X-Men works so well as an allegory for disability. If your disability is 'my metal bones make me super heavy but also I'm super strong and heal really well,' then you're not eager for a cure.

But if you can't touch anyone without killing them, then heck yeah you want that cure. You want to have a normal life.

Some disability is only a disability because society makes it so. If there were curb cuts and subtitles and content warnings and adjustable lights/volume, etc, it wouldn't be an issue.

Some disability is disabling no matter what. The best conditions aren't going to stop my brain from electrocuting itself, or cure someone's life-threatening allergies.

And nobody but the disabled person gets to decide the "right" way to feel.

So this might be a hot take but I want to talk about those people who say it's bad to cure disabilities or that it's bad for a disabled person to want to be cured. Yes, in media it's generally bad to see disabilities be impossibly cured, often times used as a reward of some kind. But that doesn't mean it's bad for disabled people to want to be cured or to seek out a cure.

It's incredibly privileged to say 'you should embrace your disabilities and learn to accept them as a part of who you are' because not every disability functions the same way. Missing limbs and blindness aren't on the same level as chronic pain, for example. And I have not met a single person with chronic pain who didn't wish for the pain to stop. If a disability is causing someone to suffer, then who are you to tell them they should just accept their fate and not desire anything better?

It isn't about if people with disabilities should be cured or not. It's about their autonomy to decide for themselves how they feel about their disabilities and if they want to have those disabilities or not. No one should be shamed for wishing to be more abled.

To put this a little more in perspective, let's say we have two people who are color blind. One person may want to see the full color spectrum and opt to try out the special glasses that were developed to allow them to. But the other person may be fine with what they can see and have no desire to see the colors they can't see. And both of them are valid. What is not okay is for anyone to tell them how they should feel.

Does that make sense?

#actually disabled #actually epileptic