Like Bees in My Head

My mind is like a hive of bees.

I do this thing called neurofeedback because I’m epileptic. (Isn’t sharing fun? I’m a veritable cornucopia of fun facts.)

Here’s the thing about epilepsy—there’s too much shit going on in your head. Just way, way too much. So neurofeedback is kinda like training your brain to calm the hell down. I get hooked up to a bunch of wires, then I watch a screen with a line graph that shows me exactly how crazy active my brain is being. If the line graph goes up, it’s bad. If it goes down, that’s good. So, I watch the line and I try to get my brain to shush a little.

I move the line with my mind.

Now, this is a totally personal thing, and there’s no way for anyone to show me how to do it. It’s not like picking a lock, or doing the moonwalk, or charging an iPod using an onion. No, I just have to try. Try to not try. Try to not think. Try to shush all the little neurons having a rager in my brain. Calming your brain is actually really, REALLY hard. So hard that it makes me feel like I have bees in my head.

Shed a Tear, Have a Seizure

I heard a story on This American Life a while back about a man who goes catatonic when he feels emotion of any kind. He just grinds to a halt and checks out of life for a while. Even thinking about looking at a picture of a happy time in his life will make him black out. When I heard that story, I thought how terrible it would be for someone to be at war with their own emotions. I was so sad for him. And weeks later…I was sad for myself.

My (brilliant) neurofeedback practitioner and I made a discovery the other day—emotions are a no-no. And here’s what I mean by that: when I get frustrated, or excited, or happy, or nervous—when I have any emotions of any kind—my brain doesn’t handle it well. So, I’ll start out my practice and I’ll see that I’m not doing so well, so I get frustrated. Which makes me do worse, which makes me get more frustrated, which makes me do even worse. But then, somehow, miraculously, I’ll do better. I’ll shake myself out of it. And then I’m doing great, which is exciting so I’ll get happy…which makes me do worse. And then I’ll get frustrated. Worse still. And then…the bees come.

I had seizures since I was around 4 years old. But I wasn’t diagnosed until I was 18, because my seizures are mostly just an eye flutter and if your only education about epilepsy is an after school special that shows a clown convulsing on the ground, then you can’t be expected to know that something is wrong.

This discovery was like seeing my childhood from high altitudes. There were days, as a kid, that I had hundreds of seizures a day. And it would make me upset. And no one believed that I wasn’t doing it on purpose. Which made me more upset. And, truthfully, I was already a bit of a mess emotionally, which made me have more seizures. Do you see the pattern? Isn’t that insane? I had an unknown seizure disorder that was made worse by my unaddressed emotional problems. A kid like that, well, she’s kinda toast.

But things could be worse. I’ll count my blessings that while, clearly, unchecked emotions are not great for me, at least I don’t black out every time I get upset or frightened or ecstatic. Turns out, my neurofeedback practice is enough to have a radical impact on my seizure activity and I can continue on in my usual, if slightly nutty, manner.

Life…it’s weird, no? It’s weird and mysterious and sometimes we get a glimpse of the big picture and it’s magical. Even if also bizarre and seemingly unfair. I’ll take it. Bees and all.

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14 Comments

  1. JT O'Neill

     /  April 15, 2012

    I am so glad I found your blog. I am a school counselor and have had the opportunity to work with kids with seizure disorders. I appreciated your comments as it gives added insights to what these kids deal with all day.

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    • I’d have to say that having a seizure is one of the more un-fun things you can do. Give some high fives to the kids you work with for me. Sometimes you just need an extra high five.

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  2. I can’t do what you have to do with the nuerofeedback thing – how do you manage it? Even though you just told us, I still can’t imagine how difficult it must be.

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    • It’s tricky for sure but, like most tricky things, you get better with time. Week by week, I get better and better. And the treatment’s done more for me than a decade on one of my old seizure meds, so it’s totally worth the challenge.

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  3. Not thinking IS hard. I just tried. And kept thinking about not thinking! Maddening!

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    • If Ghostbusters has taught us anything, it’s that trying not to think makes marshmallow monsters. All of a sudden my epilepsy treatment feels a little dangerous.

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  4. You somehow have drawn me in even more. Whether it was difficult for you or not, thank you for sharing that.

    Also, clowns freak me out.

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  5. i heard that same NPR story…it may even have been on the way home from your place, actually. it reminded me of you. everything reminds me of you. i like to think of your little eye flutters as flirtatious eye-lash batting. and i love that it’s uncontrollable, because that means your cuteness is uncontrollable.

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  6. Stephen

     /  April 11, 2012

    “seeing my childhood from high altitudes” I love that. Like a flying dream – looking down and seeing the you that was and saying – oh, wait, I get it now – sorta…

    “Never give in” – Winston Churchill. Who had his issues.

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  7. i heart you, bees and all.
    i think you are amazing, bees and all.
    i pray for God to show himself to you and to be glorified in your bees.

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