As November – Epilepsy Awareness Month – comes to a close, I want to write a little more about my feelings on my lovely neurological gift.
Let’s talk about epilepsy and fear.
I mentioned fear when discussing the feeling of an aura, I believe, but it goes a little deeper than that. As an epileptic, the brain is the enemy. Now, this is true of many/most neurological disorders, but I can only describe how this feels with epilepsy, and with ME and epilepsy, so bear with me.
Obviously the brain is an enemy to the body. The body suffers the physical damage, the injuries, the strain, the daily pains. But it is perhaps an even more powerful enemy to will and desire. In other words, to itself, since will and desire are both born in the brain.
The first thing I do when I get that feeling of dread, the unsettling discomfort that my skin and muscles don’t fit properly, is to close my eyes. I close my eyes and tell myself, “No. No this is not going to happen.”
Now. I do believe that it is possible to have some psychosomatic affect over epilepsy. It is not, however, anything resembling fool-proof, and relying on this method is not at all intelligent. More than once I’ve closed my eyes only to open them to confusion and pain and the disappearance of time. (Having recently watched Interstellar: One second of my time can equal hours in yours.)
So fear is, as it has always been, a warning. A warning that the enemy is preparing to strike. And when you’re away from safety? It’s almost impossible to explain how hopelessness and will, weakness and stubbornness, confusion and determination can clash. And how they can tear holes into your happiness, your security.
The day I watched Interstellar would be a good example. I woke, took my pills, had a small breakfast. I watched the sky to determine whether or not it would be a good idea to venture out and watch a movie. Weather.com suggested caution, but the sky seemed stable enough. So I went.
I made it to Central. I bought my ticket. I moved to the side to put my change in my wallet, and then I felt it. A faint – oh so faint – sense of foreboding. An almost weightless energy in my fingers, making me feel light, drifting. I stopped. Waited. It lingered for a moment, then faded.
And the fear started. It was no myoclonic jerk. No REAL precursor. What do I do? Do I go home? Sit and wait for it to come? Do I go curl up in a bathroom stall and call for someone to get me? But it was nothing. It was gone. But you have to be watchful because the brain is a very sneaky enemy. Subtle and soft until it kicks you in the metaphorical balls and takes a taser-armed jackhammer to your nervous system.
Breakfast had been very light, and I hadn’t had much of anything to drink. Food is often an answer to the problem. Often I’ll read or write while I wait for my meal/eat my meal, but not when I feel that fear. (See complex action/internal process triggers from an earlier post.) I sit, and I listen to what my body is trying to tell me.
I feel nothing. But alerted, the fear remains. I finish my meal. I wander around Central, continually taking stock of myself. I drink milk. I sit. I wait.
Nothing. So, I decide it is safe to watch the movie. I expected, it being a science fiction movie, some strobe effects, but there weren’t all that many. I made it through. But there was something…
I could feel it again. In my fingers and in my scalp. A hypersensitivity. Food-to-go, and a motorbike taxi, and I make it home with no problems. I ate again, I stayed in bed. In a place of absolute safety. But it was hours, if not a full sleep cycle before I felt truly safe again.
Luckily, this is not something that happens too often with me. I’m always AWARE that my brain is an enemy, a danger, but I don’t FEEL it continuously. But there are many epileptics who do. Children who have 100, maybe more seizures a day? Maybe I’m wrong and they don’t feel that fear because it’s all they know and absence seizures aren’t quite the same thing, but good god. How can you trust in yourself?
Fear doesn’t always end in a seizure. Of course it doesn’t. And the fear isn’t omnipresent. It comes and it goes. Maybe that’s why I’m so distrustful of the “don’t let epilepsy define you!”, folks. I’m so happy for people who run super marathons or climb mountains or whatever is being posted on epilepsy blogs and forums today. I’m glad, so glad, that they manage to overcome their fear and do great things, I am. But damn it feels like a mortal struggle to fight that fear while walking to work, some days. I spent all day that day – and so many days before and since over my almost 15 years as an epileptic – going between telling myself I was a moron for staying to watch the movie and calling myself a coward for letting a vague feeling of unease keep me in the house.
So I stayed. But there are plenty of days between ages 15 and 29 when I made the same decision and had seizures in public places. Classrooms and cars (never while driving, though), sidewalks, lobbies. The fear, the dread, the light-fingered uncertainty. How much of it is real and how much of it is defined by will? It’s hard to tell, and so easy to pick the wrong side.
I’m not really sure how other epileptics define the feeling, or how they let the feeling define their life choices, but that’s my experience with it.