Feature Story - Tell Your Story
Straight from a serene, average moment, I can feel sudden intense terror and shattering defeat, all in a fragment of a millisecond, out of nowhere. I have epilepsy and my seizures start in a spot where emotions, images and memories originate. So when they come, they bring along strange, horrible, indescribable feelings with them.
My epilepsy is felt as bouts of horrific, foreign sensations that can last a fragment of a second or for gruelling waves that just keep coming for an hour or more. They stop when they see fit, and generally leave me in a broken state; too exhausted, devastated and afraid to eat, think, see, or be. They might stay around for a few weeks, looming in the shadows, waiting to pounce any moment of the day, or they might leave me to my life for a few weeks, maybe a month. But they always come back. And they are always breathtakingly terrible. So in this life I live, the one certainty is uncertainty.
I don’t know when they will come back but when they do they will own me. This simple fact makes even the time without seizures exhausting, as the fear of their return corrodes my mind with sickening concern and worry.
This chronic and looming fear is something that I believe is common to most epileptics, and I dare say, to most people. Constantly fearing the inevitable bad times can control us, if we let it. But not one of us know what our future will bring us. None of us know what will happen, or when it might happen. So maybe it can free us instead.
When my seizures come, all I am able to do is try to ‘play dead’ and wash through the waves of my misfiring brain’s fresh form of manifested hell, like a piece of trash bobbing through a shark infested ocean. In practice this generally entails me hiding as best I can under the circumstances available, as I try not to let the evil feelings take my consciousness away from me, while they ambush and abuse my innocent, terrified brain.
And this, I believe, may be the easy bit. Although, in even writing this sentence, I am offended by myself for the flippant disrespect to such a profoundly horrid experience.
But in scrutinizing this ‘seizure situation’ from a safer viewpoint, I believe that, it is what the fear of a seizure experience can do with the rest of the time left in my day, that can become the true chronic battle against my rightful life journey. Because the fear of it coming again can consume me with never-ending, sickening stagnation as I ruminate, decay and paralyze myself with uncertainty about when they might come back again. This anxiety can be worse than those seizures, in some ways, because it never needs, or knows, to extinguish as my seizures do. It just keeps getting stronger, tighter and more suffocating as it slowly cuts off the pulse of my essence… that is, if I allow it to.
And, the fear can give birth to the seizures. In worrying about the seizures, I can effectively be germinating the next hell for myself.
It is indeed a fact that I can never know when the dysfunctional misfiring in my brain is going to wake up and take power and control over me and mind. But, as an epileptic, as a person, if I am going to live assertively, and completely, (as I deserve and desire to) I need to live as if I am not afraid that a seizure will come and derail my plans, my days, and the safety of my piece of mind, despite the fact that I am afraid, and despite the fact that it inevitably will come and do just that.
Regardless of and despite the bitter truth of my situation, I know that I need to keep making plans, and that I need to (safely) keep pushing my levels of comfort, keep telling myself that things will work out when the time comes to do what I am planning to do, because all of this is also true, even if it isn’t (entirely, or always) true.
It feels like I am telling myself to walk a giant tightrope over a deep cavern of sharp stones and glass. But this is not at all what I am asking myself to do. I am, in fact asking myself to live like I can do more things that I believe I can, and to believe that I deserve to try things. And even if the plans don’t go as I would hope they would, if I go in safety, respecting possible challenges; no matter what does happen, it will be worth the experience (and the possible discomfort.)
I deserve to have the experiences that only pushing myself could let me have. And my seizures are not what my life is. And, I don’t know how to see beyond them when I am in them. But I do know, from 18 years of living with them, one certainty, in something conceived and birthed in uncertainty, is that they do subside. They always subside. And my life does carry on after. And I will probably never be able to believe that small piece of tried truth while experiencing the seizures. But luckily, I don’t even really need to know it now. As long as I remember to try to live like I believe it -as often as I can.
Because if I don’t do that, I won’t give myself the opportunity or the right to live the life that I deserve to live. I wont allow myself to get to the things that excite and inspire me, make me proud, bring me to the people that I love to show that they are not as alone as the think they are. I won’t get to see them smile or to make the connections that I have missed out on for all of those lonely years.
Of course it’s terrifying. Most things worth doing are scary. And the other choice is to hide, and wait silently for the inevitable: I have gruellingly learned, that they will come regardless. There is no effective hiding from this hell that has found me, and clearly has decided to stay for the long haul. There is only hiding from life, until the seizures come. So the hiding becomes an inadvertent, misdirected punishment and not remotely helpful, only serving to stunt my life and possibilities, as I stew in my own fear of fear.
We can hide from life, but we cannot hide from fear. It is an empowering truth, if we treat it as such. Or it can be a tragic plight, if we treat it as such…
So, I will push myself to do things that terrify me, if they are also things that I’d love to try. They are glistening with uncertainty, the unknown and most brightly with unfathomable possibilities. And they have the potential to make my life even better and more exciting than it is. Not one of us have any idea what our future may entail, no matter what. Sometimes things happen the way we expect them to happen. Sometimes they happen the way we want them to happen. Sometimes they throw us for a loop. And sometimes, pushing ourselves into uncomfortable situations, brings on the most amazing possibilities and opportunities, beautiful things we could never ever have imagined.
This is my life. I have been having seizures for 18 years and I tried to hide from them for a good 15 of those years. Turns out, all I could hide from was my rightful life. The seizures, they still came, and they still come, regardless of my location or attempts to be illusive. So, no more. This is my life and I’m going to live it: loud and proud; regardless of the challenges. Im going to push myself. And if things derail, I’ll figure it out in the moment, or somebody else will help me figure it out. I won’t let a misconstrued version of ‘being careful’ take me out of my life anymore. I’m too inspired and wonderful not to try all the things that I want to. And so are you.
We can do this.
Let’s do this
We are fearless perfection,
(even when we’re afraid)