Monday, November 2, 2015

The Rude Awakening

     I was diagnosed with epilepsy in the summer of 1989, just after college graduation. My sister, Grace, put the pieces together while she was still in medical school. She sent me to a neurologist and he knew what I had without even doing a test: temporal lobe epilepsy.
     My "spells" were actually a type of seizure deep within the part of my brain where dreams and memories are stored. It made sense to me because that's where my "spells" took me.
     The possibility that my lapses in consciousness were seizures had never occurred to me, ever. I wasn't scared because Grace said it was no big deal. She's usually right.
     This time, I had to believe her. 
     It was the only way for me.
     I made myself believe that it probably wouldn't worsen, that my seizures might never spread to the rest of my brain, causing me to fall to the floor with convulsions. I forced that possibility to a dark, dusty corner of my mind, where it lingers.
     In other words, I convinced myself that I have Epilepsy Lite and have made up my own rules on how to live with it. So far, it has worked, except for a few minor bumps along the way.

     So, 1989 was the year doctors started taking pictures of my brain, gluing wires to my scalp and flashing lights in my face, trying to "catch me having a seizure" or find an explanation for the storms in my head.
     Everything was normal, but still I had epilepsy. That's how it is diagnosed sometimes. (If it walks like a duck and talks like a duck...) All my tests were normal until 2011, when technology finally caught up with my brain. 
     It was obvious to me that I was in good company with neurologists because they were fascinated rather than bored when I  described the extraordinary feelings I had during my seizures. They were even more interested in those symptoms, in trying to get a very specific description of every sensation.
    Some of the questions they asked were pretty entertaining, too. I'm used to it by now, but at the time they seemed bizarre.
     "Do you ever smell anything odd before a seizure, something like this?" That's a typical question, then a bottle of clove oil is held under my nose. Neurologists are also likely to have patients take off their shoes so they can touch the bottom of their feet and check for a specific reflex.
     I wasn't expecting brain doctors to play with my feet.
     So, yes, I trust neurologists because they seem to be as weird as I am. Why wouldn't they understand me?
     Even the 2011 MRI can't explain why I'm this way. My mother wasn't sick when she was pregnant; no one dropped me on my head. It's just there, and probably has been as long as I have been me.
    That's one of the reasons I don't want it taken out of me.
    There was no discussion about whether to go on medication; it's what you do when doctors find out there are electrical storms in your brain. Storms cause damage, and damage leads to more storms and more damage...In other words, my "spells" were more powerful than I thought they were.
     My doctor didn't tell me any particular rules to follow. I could do anything I wanted except become a pilot, which I never wanted to do anyway. 
     The medicine didn't sound too awful, either. There were better drugs with fewer side effects that wouldn't make me feel dopey all the time like the "old drugs" of last resort.
     My seizures stopped when I started taking Tegretol, but then I broke out in a rash. Still, I gave it another try when the rash went away.
     It made me really sick the second time, and I had to go to the emergency room, but not in an ambulance. I tried the next drug, Depakote, and it worked for 26 years.

June 23, 2015

     I woke up and did what I usually do in the morning..feeding the cat, boiling water for coffee, etc. It was a nice day, so I walked out to my back yard and sat on the warm sidewalk, listening to music.
    My mind started wandering back to first grade, like it often does, when I hear Stevie Wonder's "You Are the Sunshine of My Life." That's what was playing.
     I remembered sitting at my desk in Mrs. Tyson's class with a smile on my face while the little boy next to me sang that song. He was the cutest, sweetest boy in class, and he was singing to me! I was so happy at that moment, I wanted to fly out the classroom window and dance in the sunshine.............I could feel the smile on my face.................................................I was there again and then........somewhere else.....I remembered this place, too, but where was I? ...........
     That morning was no different than any other day when I sit outside, listen to music and let my mind wander. For some reason, I wish I knew why, it went too far that day and didn't come back until I woke up with my face on the sidewalk.