How I spent my birthday

Standard

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

15 responses »

  1. Well, a small part of an explanation of TLE and automatism is here in the post you have written…….

    Do the type of seizures you experience share any similarities with “absence” seizures? We have a friend (formerly roommate…..but were separated because of too much drama) who has those…….she says they make her space out, stare into space and not respond……but I don’t know if her brain goes “scrambled” afterwards or not…..

    re: the important conversation- your health is also very important. I’m in no way saying that conversation was not important…….I have no idea (nor should I…….not my business honestly) what it was about, and I have no doubt that you’ve heard from many people…..lectures/otherwise about why and how you should be resting more and taking care of yourself………but really, please do take care of yourself. *If* there are people in your life that you trust enough to either partially take over or even fully take over certain things you hold as very important (like advocacy and the like……speaking up for people who have been or still are in situations like the ones you’ve described in various posts……you might want to seriously consider that. Perhaps a friend (or more than one)you trust very deeply can field answers to questions people post on message boards that you post on…….of course, keeping you briefed on what they post….[this part might contain sensitive information. Sort of the way J8 farms out different aspects of Autreat planning to people xe has chosen to be on the Planning Committee…….because xe can’t do everything xyrself…..of course your situation may be very different….the various things you do……but a modified approach to a committee might help at least for now……you would still be in charge……

    I’m not entirely sure what to say concerning your birthday. “Happy birthday” doesn’t seem fitting because you were probably sick as hell…..or else very overloaded……hardly things to be happy about. However, it was your birthday……and you survived another year in a world in which people tried to kill you more than once. If you find yourself feeling vengeful, even momentarily, consider your revenge on the people who tortured you, that you’re still alive and kicking, and speaking out loudly about the abuses you have endured, to try and gradually make it so others don’t have to suffer what you suffered.

    Sorry the cops were less than competent.

    Take care of yourself.

    Get enough rest………or at least try to. Conversations, however important they are, CANNOT be had very effectively if you’re running the high risk of having seizures due to lack of sufficient sleep.

    Sorry about the long lecture……you are very right that language does a horrible job of really getting the point across…….

    Ivan

  2. I have a couple of information sheets I did on partial complex seizures for my professors. They’re pretty basic, and they’re quite me-specific because of a couple of quirks that can cause a LOT of misunderstanding (ahem. like fight or flight being turned up. Yeaaaah).

    Would having one for a template be at all helpful? I think I still have last year’s.

    (this year’s has my brain on it. Probably not so helpful.)

  3. Birthdays are “supposed to be” about getting good wishes and having nice surprises and maybe having celebratory dinners with friends. Yikes on how this one turned out! I would think a short note from your doctor explaining your type of seizure can result in rote behaviors like dialing telephone numbers and even talking while not truly alert and having the resultant fuzzy thinking and confusion afterward. They should also be told if it happens again they should alert a friend or someone on your health team. This is one medical condition with which they most likely are not familiar and for sure they need to be aware of this. I even wonder if during your seizure some part of you dials 911 subconsciously knowing vaguely that something is very wrong. It has to be very disconcerting to wake up talking to someone in authority you don’t remember calling and not being able to say what is wrong. Having to explain it when your are fuzzy thinking is next to impossible. You might need a pre-printed card that explains what is going on and gives a friend’s number to call and also your doctors number. You could keep it on the back of the door so you could just pull it out and show it if needed.

  4. Mom: I don’t think it was like that. I’ve dialed other numbers during seizures before too, and they haven’t always been important ones. I think it’s fairly random.

    It’s especially annoying because a seizure for me is almost never an emergency. (I’ve exactly once in my life experienced status epilepticus and that was ten years ago and I came out of it on my own. Interestingly, that was another time I dialed a telephone during one of the seizures. Then I apparently spent 10-15 minutes having seizures and never coming out of the phase where I was too confused to be considered anything close to fully conscious. Luckily the person I called knew what was going on and was ready to call someone if it had gone on any longer — apparently I make a specific vocalization during a lot of my seizures and she could hear me doing that.)

  5. Ivan: They’re not really the same as absence seizures. I’ve apparently (I don’t remember them, of course) had absence seizures, but complex-partial seizures are an entirely different type. I’m pretty sure Wikipedia has entries for “complex partial seizure”, “absence seizure”, and “temporal lobe epilepsy” if you’re interested.

  6. I have a few incarnations of seizure letters, The current one has pictures of my brain on it, which is unuseful to what you need but I find kind of great. I can email them to you later. Is the email address I have from DSQ still working?
    (assuming I still have those…)

  7. Hi, thank you so much for this. My son has Complex Partial Seizures and Asperger’s….for years his seizures were just assumed to be the “meltdowns” of Asperger’s. Now that he is on Keppra and the TLE is better controlled, his life has changed for the better….as he describes, it felt like his brain had to always be “re-setting,” after the seizures. A frequent foggy feeling and headaches…I think TLE is very mis-understood and there needs to be much more awareness…after all, I found out that this is the most common type of epilepsy. Thanks again for your description…..Hugs, Sue

  8. Sue: Yeah I know what you mean by misunderstood. Even after they thought of complex-partial seizures for me (which was, in fact, the very first thing they thought when people related what happened in them to a neurologist), I still had to go through years of people who knew I was epileptic saying they were either “dissociative episodes” or “psychotic episodes”. Even though (for the most part, with small variations) they were the exact same every time, to the point where a friend (who’s witnessed tons of them) could go through my psych records and point to where I’d had seizures over and over and over again, gotten worse on neuroleptic drugs (which lower the seizure threshold — to the point where at one point when I was on very high doses, I was having atonic and myoclonic seizures at least once a day/hour/few minutes as well, even though I don’t normally have those often at all), and get better on ativan (which while it’s known as an anti-anxiety drug, also has anticonvulsant properties) and more conventional anticonvulsants.

    I think partial seizures in general (and TLE in particular, because it involves so many weird disruptions of emotion, perception, identity, and so forth) are probably the most misunderstood form of epilepsy. People can understand I’m having a seizure if my arms fling out or my body hits the ground, or even when I have absence seizures, but they don’t get it when I’m just acting confused (one of my classic things, totally unchanged through the years according to others, is apparently to constantly ask where I am and who I am and what’s going on, and to report being in this “other place” with various specific characteristics and “not be able to get out” and “want to get out” and stuff) or doing automatic but highly complex movements while technically unconscious.

    • So much that.

      I have partial complex seizures too-right temporal lobe (but I have split dominance, so they don’t really behave like ‘usual’ right sided ones. Or left sided ones. Or…well, normal anything). And people are so…so…GAH about it. I had one at this restaurant that a group went to EVERY WEEK, and their selection of music was triggering them, and my friends were telling the powers that be that, no seriously, I was having an effing seizure.

      The waitress and the manager? “That isn’t a seizure. I’ve seen them on TV and they don’t look like that.”

      YES BECAUSE I AM CHOOSING TO DO THINGS THAT COULD SO GET ME ARRESTED ON SUSPECTED DRUG USE.

      Dingleberries. All of them.

  9. I’m not sure which temporal lobe mine are in, and since I’m left-handed I also have no clue how my brain is lateralized. All I know for sure is that they found abnormalities in both temporal lobes when they looked.

  10. Hi, Amanda,

    I know this is a bit late now, but you do not need to explain anything to the cops. They really don’t deal with explanations. They moved on already when they left your door. It doesn’t matter what they might think of you, if they believed you, and so on. Now, if you want, you could consider that they did show up to check if you are allright, and send them flowers or bake them brownies or something, as thanks, if you are worried about what they might think about you. Otherwise, just forget it.

    It might help if you prepare for the next day you dial 911, and the police shows up on your door. Have an open letter or something, where you explain that due to your condition you get these seizures and you do things like call a random number, and this time it happened to be 911, or something, give it to them, apologize and close the door.

    BTW, “uh-uh” is never a good choice. “I was having a totally harmless and to me normal episode during which I unconsciously do things like call a random number. I’m sorry I dialed this number, but nothing is wrong, I’m fine, and now we need to leave this line open for someone who really needs it. Bye, and sorry, again.” Or something similar, perhaps shorter, something you can remember to say when you wake up talking with 911 again. “uh-uh” is rude, confusing, dysfunctional, and it wouldn’t unreasonable, if the operator thought you are just trying to be funny or something. Calling 911 without a real reason is criminal, and might result in fines and even jailtime.

  11. Um… wow.

    Okay.

    So, I can’t volitionally speak beyond (sometimes) “uh-uh” and “uh-huh” and assorted similar noises. (I’m not counting vocal tics. They’re first off not voluntary, and second off would often have been far ruder-sounding than anything I could have said on purpose.)

    And, when I woke up on the phone, I was post-ictal. (I don’t know if you know what that means, so I linked to the Wikipedia article. Short version: It means that I was in a state of post-seizure confusion — really only semi-conscious — where I could barely make out the words being said to me and wasn’t in any state to formulate words in response even if I had been able to speak. In fact, post-ictal states can render people who can speak, unable to speak any more than I can. Including some other commenters on this post. So even in a speaking person it’s not a reasonable expectation that they could speak coherently after a seizure.)

    I was still in a pretty confused state by the time the cops got to the door, and wasn’t in any state to work out what had happened or give an explanation that made any sense at all. (When in that level of confusion, I can sometimes come up with words I can type that sound right, but it doesn’t mean that what I said had anything to do with.. well.. anything. I didn’t even know what had happened, by the time they showed up, that came about half an hour later when I started to be able to think straight.)

    And as to why dialing 911 when you’re not supposed to is wrong, of course I’m aware of that and of course that’s why I’m so anxious to give the explanation that you started out by saying I shouldn’t give.

    I don’t even know what to say beyond that. I’m fighting really hard not to be snarky about people who expect non-speaking people in post-ictal states to make sense on the phone (not to mention sound properly courteous while we’re at it), and the assumption that the reason I didn’t do what would have made the situation the easiest is because I just don’t know any better than to not appear “rude, confusing, dysfunctional”.

    This is also the only time the number I’ve called has been 911, if I didn’t make it clear. I don’t know what controls what numbers I’ve dialed, but I had no reason to expect this. It had been years since the last time this happened at all — and it’s always been normal 7-digit phone numbers before now. I still can’t think of any decent way to handle this other than to have information ready for emergency responders once they show up at the door (something that’s already being implemented) — and definitely can’t think of anything better to do, the first time this happened, than what I did. (That is — anything better that I could have done considering that I was only half conscious and therefore not capable of sitting there and reasoning things out. Even if I kept a tape recorder by the phone to play someone else’s voice explaining things or something like that, I really doubt that in a state that foggy I’d have been able to remember it existed or even understand what was happening enough to know it needed explanation.)

    But… yeah, the expectations you have wouldn’t work for most epileptic people who have nothing else going on besides epilepsy.

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