Thursday, February 16, 2012

I'm Not Crazy, I Have Epilepsy

By Tracy L. Karol

I hear voices. Music, even. Not inside my head, like a song you can't get out of your mind. Actual music that sounds like it's coming from the next room, like someone left the TV or stereo on just a bit too loud and you want to yell at them to TURN IT DOWN, except nothing is actually on. No one is talking, "Boot Scootin' Boogie" is not actually on the TV, I can tear through the house like a madwoman (and I have) to find myself completely alone, still hearing the sounds that are not there. It's literally all in my head.

No, nothing ever tells me to kill  people, or that the CIA is spying on me through the walls. There is a perfectly good scientific explanation. I'm not crazy. I have epilepsy.

My temporal lobes fire off excess neurons and cause an electrical storm in my brain. Sometimes this causes me to hear things that aren't there. Or smell odors no one else smells. Even see things in bizarre ways, or have intense moments of strange emotions that you would never understand unless you've had a seizure. Because that's what all of these are - seizures. Not convulsions, though I have those too, at times. But seizures that are much more common. Nonconvulsive epileptic seizures.

The many drugs I've tried over the years have sometimes helped, sometimes made things much worse. The device I have implanted in my chest, which shocks my brain ever 20 seconds, lessened my daily convulsions. But epilepsy has changed my life and the lives of those around me. No, I'm not crazy, but sometimes I feel like I am. The seizures (technically partial, complex and simple) come in so many forms and attack me so often that I can't work, I can't drive, sometimes I can't get out of bed.

March 26 is Purple Day, the International Epilepsy Awareness Day. Please take time to learn more about this terrible brain disorder. I will help you. This small entry is part of a book I'm writing on my life with a seizure disorder.

No, I'm not crazy, I have epilepsy. But sometimes, I admit, I feel like I'm losing my mind.

9 comments:

  1. I never knew a thing about epilepsy. Thank you for putting this out there. I can only imagine how this affects day to day things we all take for granted.

    ReplyDelete
    Replies
    1. I'm really glad you gained some insight, Rachel, and thanks for reading! I'll be writing more - I promises to try to keep it interesting - because this disorder is so misunderstood and underfunded. Thanks again!

      Delete
  2. Tracy, today you are my hero. Thank You for being brave & sharing your truths. I have Epilepsy as well and your writing encourages me to try to be brave and speak up as well. Thank You so much. Be Blessed.

    ReplyDelete
    Replies
    1. Beth, I see you face each day's challenges, often when I'm still too exhausted from meds and/or seizures to get out of bed. Thank you for your kind words. We battle this together!

      Delete
  3. Replies
    1. Thank you sweetie. That truly means a lot coming from a you, and a man of your character. You are my hero. I love you. Couldn't do it without you.

      Delete
  4. i know we havent talked in months. and i know this doesn't mean anything but i do miss our talks. i love this. i know i sometimes think my mind belongs to everyone but me. please keep up the good work. great things are coming your way!

    ReplyDelete
  5. Tracy, you're very courageous and strong. I have yet to share what happened when my seizures started back up, without breaking down. You inspire me so much. We all need to follow your lead and share our battle. I admire you greatly :)

    ReplyDelete