It’s always somebody’s awareness day, week, or month, right? November is Epilepsy Awareness month. If you’ve noticed purple ribbons, or purple in general, showing up in icons on Facebook over the past few days, that’s why.
Seizures and epilepsy are part of my little corner of Fringeland. I believe awareness is particularly important to epilepsy, and people with epilepsy, because there’s such a long history of stigma attached, so much misinformation. There are those who still believe it’s the mark of Satan. Hell, years ago, when Flower Child was diagnosed, I received phone calls from well intentioned relatives telling me if I would just pray harder….The fact is, seizures are a misfiring in the brain, and how much of the brain gets involved and where determines the presentation of the seizure; in other words, what you see. Anyone can have a seizure. A diagnosis of epilepsy is usually made when there are two or more unprovoked seizures.
To give a short but clear idea, I’ll just say Flower Child had a favorite EEG technician long before she had a favorite teacher.
Flower Child doesn’t quite “get” the concept behind awareness, but she knows she’s got a great reason to wear purple every day, and has noticed all the purple icons popping up when looking over my shoulder. Being an excellent advocate, she’s letting everyone know. Sort of. In her mind, it’s kind of like letting people know it’s her birthday, or wishing people a Merry Christmas. She also likes to use weighty words, though their definitions get confused in her mind.
So you know she makes sure to tell everyone on the elevator, and in the store (before fatigue brought her down for the day and she wasn’t telling anyone anything), “It’s Epilepsy Appreciation Month! You should wear purple!”
Lots of elderly people in my building, losing their hearing, they all assume they’re hearing her incorrectly if they did in fact hear her words clearly. One wished her a happy birthday. Several others look at me to “translate.” I do, and they do a double take, “Oh, well, umm, thanks for telling me.”
The reality is, my world is pretty small. Most of it is quite tedious. If it wasn’t, I might not feel such a drive to write fiction, and create imaginary worlds. And yet, somehow every day is an adventure.
I’ll leave you with just a few facts:
-Never ever put anything in the mouth of someone having a seizure, you risk injury to yourself and to them.
-Epilepsy is a spectrum of neurological disorders.
-70% of people with epilepsy are well controlled by medications. That means 30% aren’t.
-About 50,000 people die in the US each year from epilepsy. Yes, epilepsy. That’s more than breast cancer, more than skin cancer, more than drunk driving accidents.
-A seizure isn’t always obvious to a casual observer. Tonic clonics, or what used to be called “grand mals” are only one type of seizure.