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Not Apologizing For My Disability
Sun, Jan. 18, 2026
I woke about midnight and toileted myself 🥳! But was not going back to sleep 😞
I started a new audio book, Golden Girls Road trip by Kate Galley and have gotten just under halfway through.
Yep, I’m back to the night owl sleep routine 😩 I couldn’t sleep a wink all night.
Relief, So Much Relief
Sat, Jan. 17, 2026
Slept over 17 hrs. Less seizures than I expected yesterday at the clinic. More mobility than I expected today. Loopy. Still postictal.
What I celebrate is…
Going to the clinic yesterday and being able to stand up tonight, do some low key stretches, move my muscles freely, talk and think mostly ok, have no eye damage, and got so much deep sleep!
Where and/or when did it happen?
Today at home, in bed
What emotions does it bring up?
Relief, surprise, happiness, so much relief
What do I notice in my body?
Calmness, semi awake brain semi tired body, relief, so much relief
What opportunities does it create?
A faster recovery, possibly an ok next meeting w a gyno/surgeon, mostly a faster recovery
7, 12, and 21.
7. What shirt are you wearing? i’m wearing a grey tank top cause it’s 34 degrees celsius here
12. Who told you they loved you last? my dad
21. If you were the opposite sex for one day, what would you look like and what would you do? besides the typical funny stuff, like pee standing and sexual stuff, i would like to walk around a city and maybe see the actual difference i think it is there, i would love to see how different i get treated, for how i would look like, i would look fucking amazing, shoulder length hair, skater vibe with an elegant aura around me, kind of how i imagine bunny corcoran??
unusual questions!
#RepostSave @stagesofepilepsy with @repostsaveapp ・・・ The Aura, Ictus, and Postictal Stages of Epilepsy are the three usually recognized by organizations making campaigns for Epilepsy Awareness. If someone with Epilepsy documents their seizures, they might find there are a number of daily and monthly patterns, some leading up to the Aura and others on the days following the Postictal. #epilepsy #epilepsyawareness #endthestigma #epilepsywarrior #epilepsyfacts #seizures #seizure #epilepticaura #postictal #epilepsywarriors #stagesofepilepsy (at Roseville, California)
#sadbuttrue #forlorn #postictal #beautyinsadness #brokenheart #epilepsy #epilepsyawareness #myboy #myheart #myBrutus
how I feel after a seizure
anterograde amnesia
You'd think that the worst part of a seizure is the convulsion. Your body writhes, contorts; you fall to the ground. Your limbs hit things, or your head hits the ground. Maybe you get injured. Whatever. Or maybe the worst part of the seizure is the aura. Terrifying hallucinations; senses crossing over; "like being on acid, but without the fun parts". Having to deal with your reality warping around you, while you have no control; knowing that the worst is yet to come. ~~~ I keep going to write a blog post, but I can't string my thoughts together for long enough to work out what I want to say; what I'm trying to say. ~~~ Losing control is never an easy thing to deal with. Those brave enough to experiment with it turn to skydiving, or hallucinogens, or risk-taking. Losing control, or maybe never having any control to begin with. But having a seizure is like nothing else -- you can't even control the fact that you enter into a situation which you have no control over. It just hits you suddenly: one minute you're peering into the innards of a router, exploring each system inside and trying to see how they work together as a cohesive whole. The next, you're hit with a wave of deja vu so strong you pause in the middle of a sentence, and it takes every effort you have, every little bit of willpower, to struggle over to your bed to lie down before the universe falls to pieces. ~~~ I keep writing notes to myself, as I think of things that I want to write here; and coming back to them minutes later having no idea what I wanted to say. ~~~ There's not many good things to be said for convulsions, or auras, except maybe for the fact that they're nowhere near as bad as the aftermath. Waking up confused, sure, but that's just the beginning. Recovering to the point where you can stand up, and talk; but you still can't remember what year it is. ~~~ I have to keep reading over what I've written so far, so I can remember what I'm even trying to write about; so I can remember what I'm trying to say. ~~~ The immediate period after a seizure is pretty sucky, but at least you're still mostly unaware of what's going on. Your processing is very limited; maybe you're only aware of the fact that you're in pain; maybe you notice that there are people around and don't they look funny. If everything hurts too much, you can always slip back into unconsciousness, knowing that you'll know slightly more when you next wake up. ~~~ I keep looking for things, and not knowing how to find them. Or maybe I find them, and I forget that I've found them, and keep looking for them. ~~~ Your brain drops everything on the floor, again. You probably even remember that this is a side effect of your medication -- stack frame corruption; backtrace stopped. ~~~ I keep running into objects from earlier in the day, and suddenly remembering what I used them for; what memory was attached to them that I had otherwise lost. ~~~ "Anterograde amnesia" pops into your mind, as your brain grasps at straws, trying to understand what's going on. You can't remember where you put your phone, or whether you've even seen it today; but you can know that you usually have your phone and probabilistically it's probably around somewhere. Maybe you can even remember that you put your phone somewhere, sometime recently. ~~~ And then I remember that I've remembered a whole bunch of other things today, similarly, but I no longer remember what those things actually were; more memories lost into the void. ~~~ You wonder if you'll ever be able to remember things again. ~~~ I'm still not entirely sure whether I have a point; whether I ever had a point, or if I was just driven by a need to create some sort of meaning here. ~~~ You remember the time the anterograde amnesia lasted for weeks after a seizure. You don't remember the seizure, or much about that time period; except for a few snapshots of finding yourself somewhere and not knowing how you got there; or of the systems of writing notes for yourself you used to keep track of things. ~~~ I lost my phone, earlier. I wanted to take a photo of something, and so I looked for my phone. I couldn't remember where I'd already looked, and it never crossed my mind that I could call it from the internet or from my watch; and I couldn't find it anywhere, until I found it on the floor. ~~~ Anterograde amnesia is pretty interesting -- you can remember that you took your watch off earlier, but not where you put it. Or, maybe you're just noticing that your watch isn't on your wrist, and creating the illusion of remembering that you took it off from your observations. You ~~~ I ~~~~~ Your head hurts. ~~~ My head hurts.
