When we were small we were taught to look both ways before crossing the street. As we grew up we find ourselves face-to-face (metaphorically, of course) with oncoming obstacles almost constantly.
Simply speaking a pedestrian is a person walking on a road or a developed area. But I guess there is something very 'pedestrian' about being a pedestrian... watching the world pass by in fast cars while you slog on an uphill battle... moving ever so slowly towards your destination. And that’s exactly what I’m feeling like now...NOW is a few minutes after I had a violent unexplained seizure...which has left my body feeling like a distorted bean bag!
When you have a seizure disorder, especially one that remains uncontrolled and undiagnosed, I believe you’re a true pedestrian. Your life can become a boring script, punctuated by moments of complete loss of memory, overwhelming fear and desperation.
This is what life is like for me. This is what I wish the neurologists who treat me like a number... acknowledged.
This is what I wish the junior doctors understood when they took my messages for my doctor... that weren’t returned because my case was 'not that serious' enough.
This is what the people who think that my seizures are "all in my head" and I could and have the 'power' to control it as per my whims and fancy, could understand, because no reasonable breathing intellectual being would ever fake or even wish to be in such a complete painful humiliation.
When you have a seizure disorder, you could have a seizure anywhere and anytime, so life now for me is like crossing a road, looking both ways and knowing I might still get hit by a car. Your seizures can cause minor harm (like bruises, cuts and body pain) but the environment in which you have the seizure can intensify the injury (mental especially) tenfold.
Recently, I was completely and utterly humiliated after hitting my forehead on the bathroom railing while trying desperately to keep my seizure private once I felt it sneaking up on me. Choosing a concrete bathroom was a very poor choice, but I tried to keep prove that I can conceal the ugly face of my seizure disorder, compromising my personal safety to protect my egoistic reputation.
Today I realise, with my mouth dripping blood due to my biten tongue, my entire body shaking and my head vibrating so violently, there was no way to hide the truth written all over my face.
Yesterday I came across a meme that said the slogan of epilepsy is “carpe diem.” As usual I had to google to find how was that latin aphorism connected to seizures. But by the end of the day I could sense the precise intention- "SIEZE THE DAY"
I don’t know about tomorrow, or the day after that. I hope to eventually have a seizure-free life. But I don’t know about any of that.
What I do know is I have the choice to either fight back or to feel sorry for myself. I can admit I still am not the strongest or the bravest.
But I also know I wear an invisible bomb strapped to my head, and there’s some shadow holding the controller, whom I would.. (hope you are hearing u evil demon!)..definitely get hold of one day. . for sure.
The bright side however is..I have realised every day is a chance to get better and have the seizure-free life. So I will do what my ever-so wise and compassionate hysband advised: I will be my own advocate, allow my confused self to rest, scribble my mind out and refuse to give up, 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.
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