tw for vagueish description of, um. oh jeez how do i warn for this? ableist assaultish stuff?
As a person with severe and very frequent seizures, I am constantly in fear of other people’s lack of knowledge about my condition. There are a lot of epilepsy myths and whenever someone has a seizure, there is ALWAYS some self important douche that insists he/she knows what she is doing because they took a semester of nursing school in 1976. I have had seizures in public places many times (my seizures are almost daily) and I have had people try to stick dirty spoons in my mouth, their wallets, rolled up cloth napkins and all sorts of gross and dangerous things. I have had people start praying because they think I am possessed by the devil (seriously), and I have had people put me in their car and drive me to their home (which is terrifying, and sort of kidnap).
One of the worst parts about having epilepsy in my opinion is having to trust other people, usually strangers, not just because I don’t trust strangers but also because I don’t feel ok about putting a responsibility in their hands that they did not sign on for. Because my seizures are almost daily, I am almost always accompanied by my husband or a friend or assistant who knows how to deal with my condition and has agreed to do so, but I can’t be watched 24 hours a day.
This evening, I went shopping with a friend who is a bit shy and not very assertive. (She is lovely, I adore her, but she is not used to people’s reactions when I have a seizure. She did not know that there is always that one self important douche in every crowd.) I had a seizure. Of course, that one self important douche was there - a man in his late 50’s who insisted on putting something in my mouth; in this case his wallet which had a metal closure and frame that covered most of it. My friend repeatedly asked him to stop and he did not. Unfortunately, my friend was not very assertive (not her fault, she is just sweet and shy) and the guy pushed her out of the way and took over, even as she explained that you’re not supposed to do that with epileptics. He insisted that in the army in the 70’s, that’s the way it was done. My friend argued that this was not the army, nor the 70’s, but he would not listen and she kind of froze up.
The result is that I now have seven stitches in the side of my left cheek and a chipped front tooth, both caused by the man’s metal wallet cutting my face open.
Please, if you know someone with a seizure disorder, take a few minutes to learn how to deal with a seizure. It isn’t complicated and your knowing and being ready and ok with helping will relieve a lot of fear. Please take the time to pass this on, as it could save someone’s life, or at least their face.
It’s also important to remember not to hold us down. Seizures look scary (I’ve never seen what I look like having one, but I’m very aware of what happens), but holding someone down while in status epilepticus is dangerous both to you and the fitting person.
It’s far more safer to let us flail, drool everywhere and pee ourselves as is so flatteringly common, and then comfort us as we come around, explaining what happened to us.
Far too often I’ve come out of a seizure with someone who did first aid in 1980 putting their entire bodyweight on me. Let me tell you, it’s fucking terrifying. I’ve become aggressive when post-ictal, and once gave the first aid officer at my old work a job in the mouth when she wouldn’t get off me.
Someone coming out of a seizure may be unpredictable. It is far safer for you, as the bystander, and the person fitting, to simply clear the area, make sure their head is protected and then wait for them to come out of it, at which point you can reassure them.