As an adult, I was/am very much all about not letting epilepsy hold me back.
But, as a kid, I felt even more helpless and disenfranchised once adults knew about it because then it was taken out of my hands completely.
Saying that, I feel awful for my parents.
Witnessing your child have a seizure… well, that is torture, especially because there is nothing a parent can really do to stop it or make it better while it’s happening.
Helplessness. That feeling we experience when watching a loved one suffer with chemo or chronic pain, or as they recover from a bad accident, and we can only talk to them as they lie there, suffering, hooked up to machines, and feel force to behave as if it’s all perfectly normal.
Or maybe that’s just me. I’ve received very odd looks from nurses and other people to my “this is the reality… let’s just adapt and roll forward” approach.
But you have to do some pretending things are okay because freaking out isn’t going to help anyone, especially not the suffering party.
Therefore, when it comes to epilepsy, on top of that inherent helplessness, a parent has to watch their child be violently, physically, thrown around by invisible forces and there is nothing they can do to help or stop it.
That’s because there is nothing you can do for someone when they’re experiencing a tonic-clonic/grand mal seizure.
You just have to wait it out.
I mean, don’t just ignore or step on the person having a seizure or anything but also don’t move them or stick anything in their mouth…
This is a good place for this reminder:
A person having a seizure is not going to swallow their tongue.
So many people still think this is a real thing – an epileptic swallowing their tongue – I get a chill.
Regarding so many subjects, we humans, as societies, are largely still stuck in Victorian times with a much more relaxed standard of dress.
For example, here is an average “modern-day person” witnessing a tonic-clonic seizure:
“Well, HOLY SHIT that’s scary and freaky as fuck. DAMN. It’s unlikely they’re possessed by a demon but let’s sure as hell make sure they don’t swallow their tongue and SOMEONE CALL AN AMBULANCE.”
That is progress but… epileptics can’t choke during a seizure because of this tissue in human mouths which prevents it.
Again, it’s virtually impossible for a human to swallow their tongue omg.
That’s not a dare, either.
Most seizures just run their course and all a witness can do is monitor them. And, in most cases, witnesses don’t need to call an ambulance.
I mean, when in doubt, call 9-1-1, sure, or 9-9-9, or whatever your emergency services number is but… in America, ambulances aren’t inherently “free”.
Even if you didn’t call one because you were unconscious.
I’ve snuck out of so many emergency rooms where I’d wake on a cot and, eventually, after I figured out what had happened, grab my stuff from the silver rolling tray where they usually stashed it after dumping my unconscious body on a cot and… walk out of the hospital without talking to anyone.
That’s not an example of derelict practice by the health professionals… there is just… nothing they can do during a seizure besides wait to see if a person wakes up from it.
But the hospital would always find me. To bill me.
When I was in my early 20s and more friends knew about my epilepsy, one of them took a black Sharpie and scrawled, “Don’t call an ambulance!!!” on a white t-shirt for me to wear. This is because I was drowning in medical debt because of the public, daytime seizures I was having while in graduate school and, consequently, I woke up in so many ambulances and emergency rooms and all I’d get from any of that is more medical debt and being a lot fucking farther from where I had been.
But I didn’t want to wear the same shirt every day.
Saying all that, it was a delight to get to meet so many EMTs during all my ambulance rides. I got quite accustomed to their sudden company and how they always knew exactly what to do and how to be.
In September 2003, I experienced the first grand mal/tonic-clonic seizure I’d had in a couple years, and my brain decided to do this in the hallway directly outside the classroom I was supposed to be sitting in on my first day of graduate school.
My brain felt that seemed appropriate.
I later asked my mentor who had been teaching the class whether he and my grad school peers had seen the emergency workers loading me up onto a stretcher right outside the classroom door.
“No. Are you okay?”
And that seemed pretty metaphorical too. It’s amazing to think what is happening on the other side of the walls that separate us.
That particular team of EMTs was my favorite. They were especially gentle and kind. One of them said they were going to take me out to dinner. As I was bloody, beaten, broken and very slow with my brain stuttering on in its system restart, and also mortified I had just had a fucking seizure on my first day of graduate school directly outside the classroom door, it was really the nicest thing to hear.
Like… “All this? No big thing. You look great. Let’s get out of here.”
It was clear we weren’t going anywhere but the hospital but watching them all joke around over and above me, including me in their jokes, asking for my insight as they made fun of each other, while I lay, helpless, weak, limply flattened on the stretcher, was exactly what I needed. I felt safe.
EMTs are the best.
But, anyways, back before I had made my way out into the big, cold world to have seizures in front of strangers, I was having them in the privacy of my childhood home.
And my parents simply had to allow the seizure to have its way with me. They just have to stand there and take it.
That’s sort of instinctually, instinctively, unacceptable for most parents.
But that’s how it is.
Of course, if anyone is bashing their head on something during a seizure, quickly try to inhibit that… find a pillow or gently move their head or the object away.
Anyways. It’s not like this blog is reaching large populations of people but I don’t want anyone to read this and later just stand there and watch some epileptic bludgeon their head on power tools because “Uh, I’m not supposed to touch them”.
True story: Once I bludgeoned my head on a shelf of power tools. I was staying with friends and there was a makeshift shelf which had a few power tools in their guest/storage room where I was temporarily crashing… literally… as that’s where I fell into a tonic-clonic/grand mal seizure. I broke my nose, bruised my eyes, busted my lip… the works. Despite the power-tools situation, I didn’t make much noise and, after I had stopped seizing, I regained consciousness and then waited for my short-term memory to slowly boot up again so I could figure out where exactly I was and why I was on the floor.
And then I walked out of the room and found my friend in her kitchen.
(I’m so sorry, Laura.)
I was supposed to go hang out with a friend in Chicago before flying back to Edinburgh the next day but… I instead spent the day recovering in Milwaukee with Laura.
And the next night I was stared at a lot in the Amsterdam airport as I waited for my connecting flight because it looked like I shouldn’t have survived a horrific accident and the big hat and big sunglasses could only hide so much.
“Are you okay?”
Oh my god, no. But… sure. Go away.
Epilepsy. I’m just glad I got older and had my seizures elsewhere so my parents didn’t have to witness the breakthrough seizures I’d have as the generic medication I could afford wasn’t completely effective, especially during stressful periods.
And, if you think you’re stressed now, try having a seizure on top of it. That really does not help. 😑
Yet, pharmaceuticals have come a long way and now I’m on medication which makes me forget I have epilepsy.
Except for when I read my blog. 😺😁😬😬😬😬😬😬😬😬😬
Epilepsy’s vision is based on mention so I’m high alert lately.
In any case, I’m sure my parents would be happy to know that drug companies now make medication that actually helps with something and that I’m on one of these medications.
So hopefully the parents of young epileptics will not have to go through the hell my parents went through with me.