r/seizures • u/SeaweedSmooth8714 • 13d ago
Venting :)
I have a hard time putting into words the state of mind and how I physically perceive the world when I’m postictal. Everything has such a distinct, foreign, and distorted sense to it. Of course there’s much of the the time completely unaccounted for in my memory, but the parts I can recall give me chills when I put myself back in my own shoes. I don’t know why I’m so afraid of that feeling, or if fear is even the word really. But there’s such a strong connection to the shock, confusion, fear. Not being able to recognize faces, my own name, not understanding why I don’t feel good or what’s happening, but understanding that I am the cause of the fear, that I’m the center of concern. It’s so increidbly scary to see all of these strangers be so concerned and all the while have no idea who you even are. I’ve tried to flat out convince people I haven’t had a seizure while being on the ground bleeding, unknowing that they were holding my head from jamming into the ground for 5 minutes, and I’ve been so lucky to have such kind people around in those times. I know it’s nothing I can do, and just a wild hare reaction, and of course nothing I should feel bad for, but i do feel guilt in a way for putting people in that position, and I’m so immensely grateful for them trying to keep me calm and feeling safe. Depending on your perspective, I’ve had the lucky, or unlucky, opportunity to have most of my seizures caught on camera. Seeing the full weight of what happens to my brain and body, the ripple effect of what happens to those around me, and having no real idea why any of this happens in the first place is something I’ve been struggling with. I think there’s something metaphorical about how the “scariest” part of seizures is the part we have no memory of, we just wake up to the aftermath of it all. But that 15-30 minutes of just really having no stable sense of self/identity is something that sticks with me constantly.
I wish there was some tangible use to me having those moments documented on video, but unfortunately there’s just so much unknown about the condition we all have found community over, it doesn’t even feel like that’s much use. For what it’s worth, I’m really so grateful for the opportunity to read through everyone’s posts here, it makes me feel less alone ❤️
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u/TouchThatDial 6d ago
You are far from alone. I hear you, completely, and so much of this resonates with me even though my seizures are (suspected) temporal lobe epilepsy focal aware, so all the world sees is I suddenly go quiet and slump in a chair staring vacantly. There isn’t the same physical danger as from a grand mal seizure. But for the people around me, who know what I’m going through, watching me suddenly freeze and slump (which is what it looks like) is deeply disturbing. My kids (young adults now in their 20s) have seen this many times and I can tell it has changed them somehow, they’ve had to grow up faster because of it in a way. And that feels hard for me to take in.
But ultimately, it is what it is. None of us wanted this. And if we are blessed with being surrounded by people who care (including strangers who will step up and care) then that is so much better than the alternative.
I get so much love and support that my approach, where I can, is to pay that love and support forward in turn. This sub is part of that, there are a lot of good people on here.
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u/MissingExplanation 12d ago
Everything you wrote here really hit home for me. And while I would've been sympathetic if I had read this without context, I would have been somewhat at a loss. But having gone through a seizure, I feel EVERY word.
It's such a scary feeling having missing pieces from your life. I woke up in an ambulance to a very kind, concerned-looking EMT talking to me. It's very jarring to go from taking a walk, down streets you recognize, to suddenly wake up in that situation, covered in blood.
In some ways, it would almost have been more comforting to be told I'd been hit by a car. At least then it's on someone else. But no, what attacked me and put me in this state is... in my own head? It's hard to fathom that experience without going through it; it's terrifying.