“seizure art” courtesy of Reema Hamdan)
First (not always though) comes the aura… I don’t think you can ever adequately describe an aura to someone who’s never had a seizure… It comes out of nowhere- soft, floaty, like my body’s lifting, as though weightless. And yet, I can feel just enough to know that I’m tingling. Like little zaps of energy flitting across the surface of my skin from head to toe. Soft fingertips flying furiously but gently. Sometimes, I burn like fire, other times, I shake as though chilled. I never know which way I’ll feel. I just know my body is beyond my control. I try to write something on paper- the words clearly in my head, but the ink appears on the page as circles or jagged lines… why won’t my arm do what I’m telling it to??? The frustration begins. So I try to vocalize what I’m thinking and the words don’t come. I make noise but it’s laughable like the babbling of a baby. I feel self-conscious. People (my students in many cases) stare, confused, uncomfortable, wanting to escape. We both do. I feel sorry for that person because he or she is just as embarrassed as I am. I’d like to explain what’s happening but I am trapped inside a body that won’t listen to me so I try to smile and simply ignore. Sometimes, the auras go away after some deep breathing, a private “Megan to Megan” pep talk, or when it’s decided the course’s run… Yet, in other instances, my body is already floating too high, the energy even more furious, the tingling working itself into a frenzy and then I burst, falling over a cliff, screaming inside my head but nobody can hear me. I lose focus, my eyes start to tick side to side, faster and faster, my body tenses… and I’m gone.
I like that I lose consciousness- then I don’t have to see the horror on my loved ones faces or the disgust on some stranger’s. I don’t see judgment, I don’t feel the ugliness. Because it is ugly. I know nothing about my head thrashing, violent spasms, gurgling breathing, jaw-chomping episode is pretty. How can it be? I’m foaming at the mouth, for Pete’s sake. I don’t want you to see, but just like I have no control over the circles of ink on my paper, in this moment, I am like the jagged lines. Broken.
As with everyone’s story, there’s so much more but I don’t know how to package the rest- yet. I like to think I just have too much energy for my body to contain, or maybe I have grand mals because I don’t like to do anything half ass in life. Who knows exactly why this happens to me? We have a lot of theories, but no definite.
I want a definite. And over time I’ve come to find, it’s not me that’s ugly- it’s the mystery behind the disorder…
I like the rawness of your blogs Megan. So much emotion in them. I can feel that you are still juggling your acceptance and your questioning as to how to combat it. I can feel it as I have been there to and still am on some level. Thanks for the blogs
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Thank you for reading, commenting and sharing! It brings comfort :)
Love this description! My auras are somewhat different, but there are some similarities as well. I guess everyone’s aura is unique to that person. As you said, it is almost impossible to describe, especially to someone who has never had one. Just wanted to commend you on a great post!
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Thank you so much for commenting! That’s what I’ve learned- we’re all different in this Epilepsy journey and I’m just trying to share from my pov. Thank you for reading and for the encouragement!