Thursday, June 23, 2016

One Year Later

     I always knew they would come back, but I didn't think it would be so soon. It was one year ago today that I opened my eyes and realized my cheek was resting on the warm cement in our back yard. There was no question in my mind what had happened because I remembered the music...Stevie Wonder singing in my ear...followed by the memory of that same song being sung to me when I was a little girl in elementary school.
     My mind had traveled back there, but my body had remained stuck in 2015. It was the same feeling as always, but deep enough to make me go unconscious on the sidewalk. I treated it as I had the last one in 2013, like a fluke, something that had happened because my mind and body were stressed out.
     I could never have guessed the journey that was ahead of me over the next nine months or the way it would change me and how I view my unique condition and myself. Like that seizure in 2013, I thought it was a one-time occurrence, a breakthrough seizure not to be repeated.
     There were only two really bad parts to the many months of active seizing, the car wreck the following week and the reaction I had to that awful drug. When you lose consciousness while driving, the seconds before and after opening your eyes again are terrifying because you don't know if you hurt anyone else.
     It still scares me to remember that I almost had a passenger last June when I was driving down to visit my son in Richmond, and it's hard to describe the intense wave of relief that washed over me when the lady who stopped to help assured me that no, I hadn't driven my car into anyone else's.
     When I called my husband to tell him what had happened, I felt guilty, like I had done something bad on purpose. That's how it is with epilepsy; you are embarrassed even though it isn't your fault.
     Before my seizures came back, I thought there were oodles of new drugs to choose from, but now I know my choices are limited. After going out of my mind on Fycompa, I'm even more wary of the chemicals available to keep my brain from doing its weird little thing.
     The drugs to treat my disease are much more frightening than the illness itself, or at least the version I have.
     Since last June, I've done quite a bit of research online, searching for others with the same seizure type as me. I recently found a woman who described hers as "psychic seizures" and said they had changed her way of thinking from the person she was before.
     At last, I thought I had found someone else like me, but then I kept reading. She had had enough of her "psychic seizures" and wanted them to go away for good. I stopped reading and went back to embracing my freakishness.
     I have made a lot of new online friends, other epileptics who have "it" much worse than I do or whose children have epilepsy syndromes. People whose seizures are under control don't talk, write or blog about it because of the stigma associated with epilepsy and because it really isn't on your mind much when a couple of pills a day keep it under control.
     All I hafta do is look at some of my seizure videos to remind myself how hard I try to hide it. The ones I filmed while outside in plain view of my neighbors look different than the others; my eyes dart around to see if anyone is witnessing my weirdness.
     I had more than 150 seizures before the Depakote Sprinkle made them go away. Only once did I do something I had never done before, and that is try to go deeper into the seizure. I'm not sure what I was thinking at the time.
     Usually, it just happens, and I wait until it's over. If I'm in a public place, I try to look normal, whatever that really means. And if, God forbid, I happen to be behind the wheel of a car, I fight it with all of my being.
     But that one time last winter, I was in my basement when the aura came over me and I sat down on the couch. It was a safe place with nobody else there, and I decided to give in to the experience. As usual, I was going back in time.
     The Brady Bunch was on my mind, which I watched in reruns every day after school when I was so young that my homework was easy enough to do in front of the television.
     There was enough warning for me to film the entire seizure, which felt like it lasted a minute or so. I was surprised and a little scared when I looked down at my phone afterward to find that I had been out of it for seven and a half minutes.
     The video isn't very different from the other ones, except my eyes are fixed for a much longer time and I'm blinking a lot more often. I didn't come out of it with any particular memory of where I had been during that time.
     Like I said, I'm not sure what prompted me to try and "seize deeper" than usual, but it's an experiment I won't be repeating.
     In an ideal world, I would be able to control my seizures at will, without medication. In times of stress or when I needed an escape, I would simply will myself into that other state of mind, long enough to come back with my spirits lifted but not long enough to damage my brain.
     That isn't an option at this time in this world, so I will keep taking my meds twice a day and hope they continue to work because even though I always knew my seizures would come back, I wasn't ready for it to be last June.