When I started sharing my writing, my fiance asked me if I would want to write something about what it was like to have a seizure, to be able to share the sensations, visions, and feelings that I have during an episode. This was one of the hardest and most recent pieces I’ve written because it’s difficult (1) to put into words sensations that are literally neural misfirings that my brain does its best to not remember, and (2) it’s emotionally complicated to reflect on some of the scariest feelings that I have. This is the best that I could do in that vein, it’s the closest I can get to explaining what my seizures are like. It’s not a perfect description, because there is a lot that can’t be written down in words. I tried to write this piece in the second person so that you could put yourself in the situation and understand what it feels like from that perspective.
Despite how difficult it was to write and how open I am being by sharing this, and how late in starting to write about my experience I wrote this piece, I wanted this to be one of the first pieces that I share because I feel like an understanding of the sensations that I am going through when I have a seizure are important, if you take nothing else away from this. I think that being able to put yourself in the mindset of another person makes a really big difference in being able to understand who they are and what they’re going through. Basic sensations are a good place to start to put yourself in my brain (or what’s been my brain for the last year).
To have an understanding from a slightly more medical perspective, if you’re curious before you read this, my seizures are not typically grand mal seizures (the kind of shaking seizures you probably picture when someone talks about this kind of thing). I have had seizures like that, but more often I have partial seizures. These are not necessarily what you would expect to see, but they are still seizures and they are still really unpleasant. Here is a link to a video and some information that I think captures some of the things I experience during a seizure (https://www.epilepsysociety.org.uk/focal-aware-seizures#.XGIKRFxKhPY). The video has a nice visual, and while the colors are a little different than what I see, I think it is probably a good starting place before (or after) you read this.
Everything starts to feel not right. Deep in the pit of your stomach, a vague sense of anxiety starts to rise. Fear. The most intense panic you’ve ever had suddenly grips your heart, fluttering, skipping beats. You catch your breath over and over and it continues to escape you over and over. Suddenly, you realize this isn’t anxiety. You’re not having a panic attack. There’s something else deeply, horribly wrong. The fear dissipates completely and suddenly and everything feels clear and calm.
Then the visual world distorts. Half looks further away, and half of it moves closer. Tip your head back and forth, flutter your eyelids, rub your neck, it won’t change the way the world is wrong or make it right again. Lights flicker, swim, and flow across the room. Are they real or just in your eyes? You wave your hands in front of your face, trying to brush the lights away like they’re bugs or dust. Corners soften. Edges blur. Streaks of green and purple intrude and glitter away. And you shake. Your body starts to tremble. Press your hands down against your legs, against each other, against your stomach, against anything steady to try and make them stop moving. Cold washes over you. And over you. And over you. And over you.
Shocks, chills of painful cold run down your left arm and make your fingers buzz. You shake your arms to make the buzzing go away. But it won’t. The gripping headache that’s been bothering you all day disappears in a moment and your head feels light. There’s a pressure on your forehead, over the bridge of your nose The roof of your mouth and your tongue tingle and burn. Pressing outward. But it doesn’t hurt. You’re dizzy. The room is spinning around you. You can’t steady yourself. The breathlessness and heart racing returns to the center of your attention. You feel a rush of emotion. You’re scared. You’re sad. You’re angry. This is bad. You feel like you might pass out. You might vomit. No, wait. You’re okay. No, you’re not. Yes, you are. No, you’re not.
You’re confused. The colors get more intense. More glitter. Less vision. Your thinking gets jumbled. The sense of words doesn’t work clearly. Or order anymore properly. Something’s wrong.
You’re scared. You’re lost. You might be dying. This might never end. Compose yourself. You’re fine. Don’t let this happen. You can’t…
Unbearable, excruciating, surprising pain. Searing through your head. Blinding in its intensity. Nausea and waves of dizziness overwhelm you.
You don’t know where you are. Look around frantically. You don’t know who’s around you. Call out for the person you want, someone who can keep you safe. Then anyone who you can recognize or remember. As the moment settles, you begin to think back. Try and grab onto the memories of what just happened before they slip away. They slip away forever so quickly. Everything is moving quicker than you are. Your brain stays slow and the room spins quickly. People talk to you quickly, move quickly, offer you things quickly.
You’re thirsty. Parched. Dehydrated. You need water right now and you can’t get up to get it, because you’re so dizzy. You’re nauseated. You don’t want to drink the water that they went to get for you, because even the water makes you feel like you’re going to be sick.
Eventually that fades, you can get the water down and it starts to help. The truth sets in.
You had a seizure.
You’re safe. You know where you are. You’re going to be okay. The worst has passed.