I’d meant to say something about this, but it never happened, because the hospitalization and then other bits of life got in the way.
My birthday was in the middle of last month. I hadn’t slept at all the night before, and most of the night before that, so I’d been up quite a long time. But I was going to have a really important Skype conversation with someone, and then I had other things to do, so I didn’t sleep in the daytime.
My memory stops sometime that night. Just… stops. I don’t know what happened in that time, although I can hazard a guess.
My memory starts again with hearing this voice saying nonsense, and my voice making… noises, some of which may have been the kind I use to indicate yes and no vocally. Eventually I made out the fact that I was talking to a 911 operator. Internally I was going “OH SHIT NO NO NO HAVE TO GET OUT OF THIS NOW!” I started saying “uh-uh” a lot, as forcefully as I could. It had no effect, she still wanted to know what was wrong, and didn’t seem to get that I was trying to say that nothing at all was wrong. I ended up hanging up on her.
Mind you, my brain was still incredibly fuzzy at this point. And then everything faded out again, and next thing I knew I was talking to a 911 operator again. Again I had this visceral “GAH GET AWAY FROM ME NONW” response. This time I was very forceful with the “UH-UH!” and they still didn’t get it and I hung up again rather pissed off that I kept waking up on the phone with these people.
So eventually the cops showed up at my door. Just the cops. Which is weird, because normally when someone needs to call 911 for me (and… the fact that there’s a “normally” there says way too much about my life) there’s paramedics and fire trucks and stuff. But all I saw this time was cops. Maybe because they know I’ve gotten death threats and were walking into an unknown situation. I don’t know.
So they show up at my door. And I’m still really fuzz-brained, in a lot of “brain pain” (sort of “someone has chopped up my brain into little pieces, scrambled them, and then stuck them in all wrong”), and not really with it. And they want to know what the problem is. And somehow, I still don’t know how, the explanation that comes out of my fingers is “I was trying to call someone else and my fingers just kept dialing 911 instead of the right number.” I don’t know where that explanation came from. It’s probably a good example of how I handle language under pressure (which basically goes “say anything, anything at all, that might be a plausible answer, regardless of whether it makes sense or not”). But anyway, they asked for my ID and left.
Then I ran over to my neighbor’s house crying so hard I couldn’t communicate, until she finally got the whole story out of me (at a point when I still was too confused to put together that I’d been having seizures). She tried to call the police department on my behalf the next day to explain, but they told her they were too busy to deal with explanations.
And now I’m in a position of having to figure out how to put together something explaining complex-partial temporal lobe seizures to the police department. Because I don’t want to leave it at “this person called 911 for no reason whatsoever”. Not sleeping is one of my major seizure triggers. And this is not the first time I’ve dialed a random phone number during a seizure. I just chose the worst possible one to dial, given that for me seizures are rarely an emergency, and dialing 911 has consequences.
From the Wikipedia page on automatism (relevant part bolded):
There are varying degrees of automatism. Some may include simple gestures, such as finger rubbing, lip smacking, chewing, or swallowing, or more complex actions, such as sleepwalking behaviors. Others may include speech, which may or may not be coherent or sensible. The subject may or may not remain conscious otherwise throughout the episode. Those who remain conscious may be fully aware of their other actions at the time, but unaware of their automatism.
In some more complex automatisms, the subject enters into the behaviors of sleepwalking while fully awake up until the moment it starts. In these episodes, which can last for longer periods of time, the subject proceeds to engage in activities s/he routinely performs, such as cooking, showering, or driving along a familiar route, or may even carry on conversation. Following the episode, the subject regains consciousness, often feeling disoriented, and has no memory of the incident.
Most people who’ve heard of automatism have heard of things like lip smacking. They haven’t generally heard of doing complex tasks that are familiar to the person. For some reason, my seizures periodically make me dial phone numbers, among other things. I have no idea why, but it’s happened before. (Including one memorable incident when I woke up on the phone and had apparently been either seizing or incoherent and confused for ten minutes before I finally woke up and retained memory of what was going on. That time, the other person had almost dialed 911 on my behalf.)
For some reason, I have this deep fear of ever hearing the tape of the 911 calls I made. There’s something that feels intensely private about what I do while still technically unconscious, and hearing the tape would only remind me that other people probably heard me making weird noises or something. I was embarrassed as hell when the cops came and I had to come up with some explanation while still post-ictal.
I’m writing this because most people (including many emergency responders) seem to have no idea what seizures can look like. According to people who know me, the cops should have taken my confusion as a sign something was wrong. But of course they didn’t do anything in response to that. And now I have to figure out how to explain TLE and automatism and complex-partial seizures, on paper, in a way they’ll understand, and for some reason I still haven’t been able to write anything on the topic.