Come join us for the Summer Stroll for Epilepsy in Detroit at the Detroit Zoo in June. Be an in person stroller, virtual stroller, or just donate to my team. If you can’t do any of that, please share.
for those who live in the US, a reminder to please please vote blue in all the special elections on Tuesday April 1st. Get your friends and family to vote blue as well
Update: especially if you live in Florida and Wisconsin, please vote blue!
Trump basically declared disabled people ‘unfit to work’ as he put it by revoking the Equal Employment Opportunity Law of 1965. It means employers no longer have to legally give accommodations to disabled employees. This will render so many Americans jobless and barely anyone is talking about it because disabled people like me are treated as expendable.
USA people! Buy NOTHING Feb 28 2025. Not anything. 24 hours. No spending. Buy the day before or after but nothing. NOTHING. February 28 2025. Not gas. Not milk. Not something on a gaming app. Not a penny spent. (Only option in a crisis is local small mom and pop. Nothing. Else.) Promise me. Commit. 1 day. 1 day to scare the shit out of them that they don’t get to follow the bullshit executive orders. They don’t get to be cowards. If they do, it costs. It costs.
Then, if you can join me for Phase 2. March 7 2025 thtough March 14 2025? No Amazon. None. 1 week. No orders. Not a single item. Not one ebook. Nothing. 1 week. Just 1.
If you live outside the USA boycott US products on February 28 2025 and stand in solidarity with us and also join us for the week of no Amazon.
Are you with me?
Spread the word.
My meds are 5000 a month and I need VNS surgery every 4 years which is like 20,000. Meanwhile, our dumbass government is trying to cut medicaid, which is my saving grace right now. So let’s make a difference.
There is a new Chrome extension that detects if a video you’re streaming has a strobe in it, will freeze the video and stick this warning up there until you approve it.
WHERE THE HELL HAS THIS BEEN ALL MY LIFE????
[image description: a screencap of the chrome web store, showing an extension called “seizsafe - epilepsy alert for youtube” and an example image of the extension, showing a blocked video with the text “warning: the following content may potentially trigger seizures for people with photosensitive epilepsy.” there is a toggle with an option reading: “don’t warn me again during this video. click here or hit spacebar to continue watching 👆”. end image description.]
“Brain damage” only sounds like a harsh and offensive way to describe brain injuries because people constantly use it as an insult. It’s a totally neutral descriptor of what it is. I have brain damage. My brain is damaged. It’s not ableist to call it that, it’s ableist to call people you don’t like brain damaged because you think it’s an inherently bad thing to be.
(Yes abled bodied neurodivergents, that includes you)
So funny story. In 9th grade, my math teacher was on this long ass lecture, b*tching us out for one thing or another and finally he says, “do you all have brain damage?”
I simply said, “yes, some of us do.” Well I got in trouble for talking back and sent to the office. My mom was called in. She listened to the whole thing and all she said was ,“ Susan has Epilepsy.”
Instantly, my teacher felt terrible and started apologizing. Obviously I didn’t get in trouble
Do you have side effects of seizure feelings even when you aren't going to have a seizure cause I do, and it's scary because I don't know if it is going to happen or not at those times
Yeah. I get Auras and sometimes only auras. Auras are basically small seizures. I have a VNS, so usually I just swipe my VNS and it goes away.
My suggestion is to keep track of when these happen and what it feels like, and if it progresses into a full seizure. Then you can see if there’s a pattern. From there, you can tell when you need to call for help during one or leave it be. But if it is scary, call a friend or family member
I often hear that, for example, take the example of autism they have many disadvantages, but they may have advantages in terms of drawing science, they may be geniuses and so on
are there any strong ones? What are the sides of people with epilepsy in this regard?
are there any positive +?
I have epilepsy myself and I'm wondering
Positives to Epilepsy? I honestly can’t think of anything. Its seizures, side effects of seizures and medications. The best thing is the community. the epilepsy community is amazing and I’m active in the Epilepsy Foundation and thats really awesome.
Epilepsy culture is accidentally making an epilepsy joke in front of people who don't know you have seizures, and then make the whole conversation awkward because joking is the only way to cope
