Merry Epilepsy!

Mercury EEG

Mercury EEG (Photo credit: Max ☢)

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.

Their Purple Moment

Their Purple Moment (Photo credit: Wikipedia)

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.

Epilepsy Awareness Ribbon

Epilepsy Awareness Ribbon (Photo credit: Cynr)

 

 

15 comments

  1. I get it indeed. It can be both a silent disorder on one hand and one filled with stigma on the other, very frustrating. Progress is slow on the awareness front, as is bringing in needed funding.

    Advocacy is a tricky thing. My son was very private about it and wanted no one to know he had seizures. so he never wanted a part in fundraisers or other awareness events etc at school and I’m careful of my privacy settings and how I refer to him in public forums in reference to his hx of seizures. My daughter, so far, is ok with it. As an adult, putting yourself out there is a tightrope of risk vs benefit.

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    1. Definitely a balancing act, but still one that makes me think about a time when cancer was only whispered about and called “The Big C.”

      Did you ever read “The Spirit Catches You and You Fall Down,” by Anne Fadiman? A very different perspective indeed.

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  2. I just read an article in a UK magazine recounting the life of an epilepsy sufferer. She said the worst thing about it wasn’t having to be on permanent medication or even the fits themselves, but rather the indifference of the general public. She recounts having seizures in public spaces and people just stepping over her; and in one instance being mugged while having a seizure.
    This just shows that awareness is badly needed …

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    1. 😦 Sounds like an excellent, but painful article. Several years back there was a video captured here in the US of a man being mugged while having a seizure. To me, the shocking part isn’t that one twisted or desperate individual would mug her/him, it’s that no one else would step in to stop it.

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  3. Staggering facts about epilepsy. I knew that epilepsy was a neurological disorder but I didn’t realize that people could actually DIE from it. Without the risk of sounding too ignorant, may I ask you if it’s something people are born with? Can epilepsy also be triggered from a head injury?
    Thanks for writing this insightful piece!

    Liked by 1 person

    1. Ask away, I’m happy to share info and help spread epilepsy awareness. Another post you might be interested in is https://mrsfringe.wordpress.com/2014/07/ Some people are born with it, others it develops. Epilepsy is defined as 2 or more unprovoked seizures (meaning no immediate injury, fever, drugs/alcohol, etc). Epilepsy goes along with many disorders, and also has a number of “comorbid” disorders that can develop among people with epilepsy. 70% of epilepsy cases are idiopathic, meaning unknown origin. But yes, significant head injuries can leave some with epilepsy, as can certain illnesses, like meningitis. Everyone has a “seizure threshold.” For some it’s a lower threshold than others–why some babies might have a seizure at 104° and others can hit 105 or 106.

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