Just a Girl. Trapped.

Imagine the most vulnerable or embarrassing situation you have ever been in. Got that in your mind?

Perhaps it wasn't as terrible as this bear here and you weren't sticking out vulnerable and embarrassed in the middle of a crowd of people. OR... Maybe you were. It's quite possible you don't even remember your most vulnerable or embarrassing moment of your life because it was too long ago to recollect. The story could also be that you just don't care and you're going to live your life without caring of the opinions of others. Are you a confusing mix of all of the above? Perhaps it's that. Whatever it is, I'm sure that you know what you are and can commiserate with the feeling of being vulnerable and at your worst.

This topic is most relevant right now for me because I overcame my most embarrassing/vulnerable situation only today... twice, for four minutes both times, and also yesterday, and many times before this. Most people would say, "How can you deal with your most embarrassing/vulnerable situation more than once? Doesn't a most vulnerable situation only happen only once?" For most people, yes. For me, however, when the situation is more of an often occurrence rather than a one-time event, that's why I can say it happens frequently. Now wipe your mind of your event, and fill it with this...You're standing in the middle of a crowded room, your body sends a warning signal like something terrible is going to happen but there is nothing you can do. It's the most terrifying experience you've ever felt. It's worse than fear, if there is such an emotion... dread... doom. It's an impending sense of doom. You're dying. You feel like it at least, and there's nothing you can do. You stand there, waiting for the feeling to pass, but it doesn't; instead, you lose communication with everyone around you.They don't lose you; you lose them. They continue to speak to you. They are confused and don't know why you don't respond. They call out your name, but you can only stand there as your head hurts and everything goes fuzzy. It feels like forever, even though it's just a few moments. But a few moments without being able to speak or control your movements, are the most terrifying moments of a person's life. They call out to you, but you can't answer even though you want to. All you can do is pray and hope that it passes. You look to your hand and your leg and watch them twitch and move without your control. Your fingers move in a rhythmic beat as though they are conducting an orchestra you've never heard, your eyes, flutter open and closed, move back and forth, and your leg tingles and your toes go stiff, eventually going limp and numb.

Eventually, you are yourself again and you wipe your face, realizing you'd been crying (because that's out of your control too). People hug you, hand you tissues, and offer you meds, but some don't. Some stare at you like you are a freak, wanting to know what's wrong with you, and you aren't willing to give an explanation.You are processing how you were just the girl trapped inside her own body, wondering when it will happen again.

What does it mean to be a girl trapped inside her own body? It means... feeling tired with no explanation, feeling sad and not knowing why, having random body tingles and aches, sporadic moments of deja vu and memory lapses but also a wild and vivid imagination. It also means feeling alienated from those you love because they won't understand your weird obsessions and quirks or your need to feed your brain's excess energy. It means getting unsolicited medical advice from anyone and everyone who has ever been near someone with a remotely similar condition... "Have you thought of trying..." or "Well I know... who tried..."

This same event has been happening to me for more years than I care to remember. Those who know me know I'm talking about my seizure disorder. If you didn't know that, you might've guessed it from the description. Even if you didn't, now you do. I've had Complex Partial Seizures (now called something I don't know...) since I was 14 years old. My seizures are medically resistant, which means they can't be brought into control with any current medications (I'm maxed out on all of the medications that have worked for me and will eventually become resistant to those).

Why do I share this and how is it relevant?

To escape my body, I was given the gift of writing. Not many people understand this idea of being able to write all the time. Most people think of it as a job and then they take a break. Not me. I write every day, all day. I think of writing as an escape from the torment that I deal with every day of my life. I've been living with pain every day of my life since I was 14 years old and have been praying for an answer as to why something like this would happen to me. Now I have this ability to write, and I know this could be part of the answer. Yesterday, after I had one seizure, I wrote 2543 words, exactly. That's double the words I'd written the previous day, and it had much more detailed inspiration.

We live in a society where most things (excluding Twitter...) have an edit button. If we don't like something, we just go back and edit it. It gets redone, and voila; it's fixed. We strive for perfection, no matter the expense, even if it's at the expense of others. We even expect perfection from others, from people who aren't in our control. (Gossip queens! "Look at her shirt..." "Ew, Do you see the car she is driving?" Etc...) If something isn't up to what we think is standard, we are all over commenting on it, even though we might not understand. I know this because far too often, I have been on the receiving end of comments from people who didn't understand about my seizures, yet proceeded to speak nonetheless. My seizures? I can't edit those. There isn't an edit button on real life. I'm trapped in my body, frozen inside something that I don't like. Trying to believe that I'm perfection inside something I can't control at times is a very difficult notion to fathom.

Instead, I focus my thoughts on famous authors who also were thought to have had seizure disorders... Edgar Allan Poe, Charles Dickens, Lewis Carroll, Fyodor Dostoevsky... (There's more!), but I think of them and I try to believe that perhaps I shouldn't think of my seizures as a vulnerability or an embarrassment but rather a gift. It's a work in progress. Seizures... a blessing and a curse.

-MegS.

©Meg S.

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