Looking Both Ways

Every two hours in the U.S., a pedestrian is killed by a car. Moreover, "Pedestrians are 1.5 times more likely than passenger vehicle occupants to be killed in a car crash on each trip," according to the CDC.

When we are just young children, (hopefully) someone teaches us to look both ways before crossing the street. After all, as we grow into bigger children, and eventually real-life adults, we find ourselves face to face (metaphorically, of course) with automobiles almost constantly.

The definition of pedestrian is, "a person walking on a road or a developed area". Duh, right? But the adjectival version of the word is of particular note; "lacking inspiration or excitement, dull". I suppose there is something very pedestrian about being a pedestrian; watching the world whiz by in its fast cars while you slog on an uphill battle moving ever so slowly towards your destination. And that's what I'm getting at, the first definition contains an active verb (walking), but being a pedestrian (at least to me) implies a reduction of agency.

Not to be confused with hyperbole, what I'm doing is setting up the metaphor, and luckily we've arrived (kudos for staying the course). When you have a seizure disorder, especially one that remains uncontrolled and undiagnosed, you're ever so pedestrian in both definitions; your life becomes a boring pattern of consistency punctuated with horrific moments of complete loss of pattern, overwhelming fear, and complete desperation. You cannot take the wheel because you're literally not allowed to drive, but also, because you're too afraid to go.

That is what life is like for me. That is what I wish my neurologists that treat me like a number understood. That is what I wish my neurologists nurse understood when she took the five messages for my doctor that weren't returned because my case was obvious not dire enough. That is what the people that believe I am faking my seizures could understand; because no sane, competent, reasonable [insert any synonym for breathing intellectual being] would ever fake such complete humiliation.

Life for me is like crossing an intersection, looking both ways, and knowing that I might still get hit by a car. When you have a seizure disorder, you could have a seizure anywhere - in the middle of the mall, in a public bathroom, in the shower, walking to work, on the train, while cooking, and while at work. Your seizures can cause minor harm (like bruises, cuts, and body pain) or could kill you. And that's just the seizure itself; the environment in which you have the seizure can intensify the injury tenfold, or even be fatal in itself.

Today, I was afforded the opportunity to be completely and utterly humiliated after busting open my lip on the bathroom sink at work, after trying desperately to keep my seizure private and hidden away. Choosing a concrete bathroom was a very poor choice, but I have tried to keep the ugly underbelly of my seizure disorder my dirty little secret,oftentimes compromising my personal safety to protect  my professional reputation. Today, though, with my mouth dripping blood, my entire body shaking, and my head vibrating so violently that I couldn't orient my field of vision, there was no way to hide the truth written literally all over my face.

Today was a painful, painful reminder that my attempts to control this roaring lion of a seizure disorder are laughable imitations of this thing I used to call control. I'm only doing it to try and protect myself from the fear that shadows the seizure disorder - the fear that I could literally die from a seizure, perhaps my next seizure. I could have one tomorrow, crack my skull open, and die. I could have one in three years, and after three years of seizures, my broken and fucked up brain could go so haywire that it never comes back. And that would be the end of my story. Finis.

I came across a meme that said the slogan of epilepsy is "carpe diem." At the time, I thought the meme was a bit amateur. But sitting in my bed with Angelina Jolie lips and swollen eyes after literally sobbing through a conversation with my neurologist's nurse, who had the gall to tell me "not to get upset"; I am overcome by the quiet truth of the idiom's application. If you asked me yesterday what I thought my Tuesday would look like, I would've spouted off the list of tasks I needed to accomplish at work - an afternoon in bed with my ears ringing like Christmas bells and a swollen upper lip would not have even occurred to me.

And so I don't know about tomorrow, or the day after that, or the day after that. And in eighteen days, I hope that I will be able to have a seizure-free wedding, but I don't know about that. And in a few years, I hope to have a seizure-free child, and eventually, a seizure-free life. But I don't know about any of that.

What I do know is that I have the choice to fight back or to feel sorry for myself. Believe me, I don't always fight back. After an afternoon of feeling very, very sorry for myself, I can admit that I am not the strongest or the bravest. But I also know that I wear an invisible bomb strapped to my head, and there's some phantom that holds that controller that I might meet one day, and it would suck very much to have a list of regrets should that day come. Every day is another day where I don't have to kick that guy in the balls, and more importantly, a chance to get better and have the seizure-free life that has to be possible,. So I will do what my wise and compassionate coworker advised, I will be my own advocate (for real this time), bring my hunky hubby and notebook into my appointments, and sit my brain-addled tookus on the chair and refuse to leave until I have the promise of progress. Because every life is a story, and every story is worth telling until the very end - and I am not done yet.