Friday, April 15, 2016

Drift Away

     This is the song I was listening to when I wondered if I really am going to find anyone like me tomorrow among the crowd of people participating in the National Epilepsy Foundation's 10th Annual Walk.
     By that, I mean someone who would rather take drugs every day than be cured. It shouldn't be too hard to find other people with temporal lobe epilepsy/complex partial seizures.
     I was delighted this week to make yet another new Instagram friend, this one sounds like she could be my twin sister, separated at birth but living in Philly.
     Still, we didn't chat long enough to find out how good or bad her seizures may be compared to mine, how they make her feel..in her head.
     She wasn't born this way, as my doctors have suggested about me, based upon how mine suddenly appeared at the age of 16 with no traumatic brain injury or high fever beforehand.
     Also, I have at least one close relative who had seizures that are gone forever I hope, and my great-grandfather had a really funky brain. He could write his first name and his last name at the same time, holding one pencil in his left hand and another one in his right.
     Go ahead and spend a few hours trying to do that one. I'm guessing my trance-like seizure/spells come from his genes, but what do I know? I'm not a doctor, just the person who has been experiencing them since 1980-something.
     I could go look it up in one of the diaries I've kept since I was seven years old. One of my neurologists said my journal-writing habit is a symptom of the syndrome that may or may not exist.
     My own theory is that it's a skill learned long ago by someone whose short-term memory wasn't so great, perhaps someone who discovered she could communicate much better in writing than out loud, where people made fun of her when she became too emotional.
     The same thing happens with other children who can't communicate well out loud; they write it instead or find another way. I learned this when I was teaching children with autism. There was something wonderful inside them that I saw immediately and then spent my days trying to make sure everyone else could see it, too.
     If I find others with similar personality traits, we could have a grand old time, hassling the drug companies for their continued efforts to keep us under control. "Good luck with that!" we could say, but they will be the ones laughing all the way to the bank.
     I wasn't laughing as I listened to this song, knowing I will never get in line for a cure, unless my seizures become debilitating.
     That's because I can't imagine not being able to go to that wonderful place again, if I wanted. It's impossible to describe how it feels to go there unless you have been, too.
     It has to be what heaven is like, for those of us who believe it exists, a place beyond this world.
     I'm not sure why I was picked to be lucky enough to get a taste of it in this lifetime the way I have, but it's a much better place than here and now.
     Some drug trips are euphoric but they don't really take people "away" like my seizures take me when I have them.
     The proper word to describe them is "ecstatic," I know that, but it's very hard to find people who have epilepsy and feel a sense of bliss and magic from the experience. Maybe tomorrow, that will change. I'm going to try not to get my hopes up, though.
     It's hard enough to sleep at night already.