A few people have recently asked me to describe what it’s like to have a seizure. I sat down to do so but quickly hit a massive and obvious roadblock: though I’ve discussed my auras and the postictal phase in previous posts, I’m unable to write in detail about what happens during the main event since my seizures almost always involve a loss of consciousness. What better reason to surprise my significant other, the witness-of-seizures, with an interview at 10:30 on a Tuesday night meant to help fill in the gaps?
(On that note, over Korean food the other day, my husband said that he thinks that it’s a blessing that I’m knocked out while I’m in the middle of a seizure and that he’s glad I can’t remember the experience later. I agree: I have no desire to relive traumatic moments, especially when I have him to witness them and relay any important information to me after the fact. We make such a great team.)
I would like to thank my husband for being coerced into doing this interview with me. I met with him on the couch in our apartment, where I ambushed him while he was playing video games.
Do you react differently now than you did when I first started having seizures?
Obviously I react a lot differently now. There’s definitely a sense of urgency, but there isn’t a sense of panic anymore. That same kind of fear still kind of grows over time, I think, as you’re having the seizure and haven’t woken up yet, but I certainly know how to handle myself now, and it’s completely different than it was when it first began.
Can you tell I’m going to have a seizure before I have one?
What are the signs?
Sometimes you actually just have an aura and you say that you’re going to have a seizure, sometimes you act slightly confused or disoriented, and even though you may insist, as you sometimes do [editors note: fine, I’m stubborn even during the seizure process] that you’re not about to have a seizure, you often are, but it’s almost like an indescribable sense more than anything, just a change in how you’re acting.
What do I do during a typical tonic-clonic seizure? What’s your role?
[Nervous pause in which I give him an “it’s ok, you won’t embarrass me” look.]
Well, I mean, you collapse to the floor, convulsions wrack your entire body in what seem like almost rhythmic motions. My role in the most immediate sense is usually to protect your head from harm because sometimes during the seizure itself it might repeatedly slam on the ground. Other than that though, I mean, I mostly just protect your head and wait for it to end. After it’s over, I turn you on your side and just wait, and again make sure that you’re as comfortable as possible. I might try to put a pillow under your head, but I’m not going to try to interfere with you too much.
Do I do anything besides convulse? Is there anything else to it? It’s weird to think that I don’t have a good understanding of what my own seizures look like.
It varies. Sometimes you’ll make sounds. Sometimes it seems like you might be biting your tongue. It’s hard to describe from memory because actually the other seizures that aren’t tonic-clonic seizures are easier to describe because there’s less going on, and so it’s easier to see or hear what the focus is.
That brings us to the next question. How does a complex partial seizure manifest?
You have several kinds of complex partial seizures.
OK, what’s the most typical complex partial seizure for me?
The most typical complex partial seizure is that your eyes are still open, which they are with tonic-clonic seizures as well, you’ll often smack your lips, and your hand will close into a fist or grip as hard as it can.
And now, to lighten the mood: what’s the weirdest thing I’ve said or done in the postictal phase?
Well, you once called me a “funny little man” and said that I could fit in the palm of your hand.
Is there anything else you’d like my readership to know?