Behind These Palace Walls

Why shouldn't I fly so far from here, I know the girl I might become here, sad and confined and always locked behind these palace walls..."

When I was a teenager, I remember having the crystal clear thought that I wanted to avoid having to drive until I absolutely had no other choice. Well, I was able to maintain this stubborn avoidance until sophomore year of college, until I was undone by one kidney stone while living in on campus and was forced to move back home. After the hurried purchase of a forest green used Cavalier, and a summer of painful driving practice, I took (and aced) my driving test, and was a registered driver in the state of New York.

And it persisted in this fashion for several years; eight to be exact. Eight blissful years of freedom that I certainly didn't understand before I had it. I held the potent ability to make my own decisions about how to spend my days outside of my place of residence. The world truly was my oyster. I could go buy tampons without the embarrassment of asking my dad to drive me.  I could buy myself food, whatever I wanted, because I drive and get it (and don’t feel comfortable eating in front of people if I have a choice). I could purchase wine without the scathing judgment that seems to sweat off my loved ones.

We're both super bored.

Now, the world is my fishbowl. My cat and dog are like two fighting beta fish, and I’ve got a front row seat to the action (it's sometimes the only action I see). And that's mostly hyperbole; my dog and my cat both spend the majority of every day sleeping, and my fiancé spends the majority of his time working, so I spend the majority of my time binge-watching Netflix, and waiting. I scarcely know what I’m waiting for, but I can palpably feel the waiting as it blankets my waking life. I spend a lot of time sleeping, because I'm so tired of the waiting. 

I don’t mean to sound overly dramatic, but it’s a fundamentally changed existence – one that was forced upon me by hideous conditions out of my control that in themselves are difficult enough to cope with. Having epilepsy takes away your fundamental right as a human to exercise control over your life, snatching away time, memory, and sometimes, even dinner plates.

But it also makes you paradoxically agoraphobic and cabin-fevered. You’re always dying to have the ability to act with agency, to drive to places and take back control of your ife, but you’re afraid of people seeing you have a seizure. I deal with this fear, in my own way, every day. I wake up and go to work because I love my job, and because I refuse to give this part of my life away. But when I’m walking from the train station to work, because I have to take public transportation, I’m afraid that a strong gust of wind might stab me with a potential seizure; that the growing winter chill might sneak up behind me and knock me over, and I'll wake up confused, without a wallet, a laptop, or any memory of what happened. 

And I’m afraid of having friends see me having a seizure, because I know how awful it is to have no control, and they wouldn't be able to help at all. I myself would be horrified if one of my friends starting seizing in front of me, and I have seizures. It’s immensely disturbing to witness, as Thomas has said, and it’s incredibly depressing to feel the weight of self-imposed alienation, the alternating love of your friends with the shame of a seizure disorder and the desire to protect them from yourself.

I try to end these posts on an affirmative, if not happy note. I try to boast of resilience in the face of adversity, and courage when faced with fear. But an idiom, like all language, is just a string of words infused with meaning that we create. If you don’t believe in the meaning, or if you believe you are somehow exempt, there is no way to distinguish it from the litter you see along the back streets of Poughkeepsie. And there are days, like today, when I feel like my brain is full of litter.

But, my brain partially feels like litter because, after weeks of prodding and begging, my neurologist in waiting (before I see the "seizure specialist") gave me a new medication, Topamax, that treats both seizures AND migraines. I am super optimistic about the medication, even though the adjustment period is terrible. I feel like I spent this morning with my head under water, and needed about thirty cups of coffee to emerge and think like a functional human. But, I feel different and more cognizant. I have experienced headaches in the two days I've taken the Topamax, but they've dissipated quickly. I had a small seizure last night, but it was quick and comparatively uneventful. While I'm on a slow taper onto the medication, and can absolutely definitely not drink at all at my wedding (because mixing alcohol and the medication can be deadly), this is the best thing to happen to my brain since excedrin migraine however many years ago. 

There is a light at the end of the tunnel, and when I'm not quite so loopy, I'll be able to appreciate it more. Until then, adios. 

Welcome to crazytown.