Saturday, January 30, 2016

Postictal

     I'm postictal, which means I just had another seizure...minutes ago.
     It wasn't anything to write home about, not like the one yesterday that caused me to lean my head back and smile into the sunshine like Stevie Wonder in the middle of a tune.
     This was my typical "zone-out" where I stared into space for two minutes.
     I even managed to hide it from Jessie, my neighbor's dog, who knows my habits well. She had her eyes on me the whole time.
     As I stared back, while coming out of my seizure, I thought to myself, "Maggie would know something was up." (Maggie's my dog, btw.)
     She would be close to me, touching me by now...her little body pressed right against me.
     That's what I was thinking while I gazed at Jessie. Sometimes I find Maggie in my seizure videos when I look at them later, not even realizing how close she was when filming.
My little photo-bomber
     Maggie licks my face when my head is on the ground, I thought. She wakes me up.
     The seizure began when my mind wandered into the danger zone of first grade. Nothing bad happened there; it isn't like that.
     I know this because I feel so good when I come back again, like I've been to Sesame Street.
     I walked around a little bit, too, I must confess, but only five or seven steps before sitting down.
   While walking, I reminded myself why I had to go sit in the open, why I couldn't zone out in the corner and enjoy the moment.
      "I'm doing this for us," I told myself, "So I can find out how much control we have when our minds are being pulled somewhere else, by our brains."
     That still makes sense to me now, but it's hard to explain while postictal, so I'm going to skip it.
     While returning to here, as I looked into Jessie's eyes, I thought, "If I can fake her out, I'm getting pretty good at this."
     It's harder to fool dogs than people, for some reason.
     I gave her my best smile...not the Wonderful one from yesterday's deeper seizure but the conscious smile I give everyone.
     I was back.
     She turned to go inside, and I got up to do the same. Over her shoulder, before walking into her house, she barked.
     Maybe Jessie is onto me after all.

Friday, January 29, 2016

Up in the Clouds

     It's 2002. I just went up in a hot air balloon, one of my childhood dreams come true. My husband is with me. I think we drank champagne up there, but I can't quite remember for sure.
     If so, it must've felt naughty, even at that age, because my parents were babysitting the boys. I probably felt a little bit like a college kid again, mints tucked away in my purse for the drive home.
     My chemical seatbelt was working great that day; I didn't get faint or dizzy on the way up. There was no feeling of panic, simply elation and awe at the sudden feeling of floating above the world.
     It was nothing like the time I flew in a private plane in college, another childhood dream come true. That was when I had seizures but still called them "spells."
     I started to feel sick almost immediately in that airplane; it had something to do with the sudden change in air pressure and noise, I think.
     We only flew to Chapel Hill and back, which is a short trip from my hometown, even by car. But I started to feel sick almost immediately and had to "fake it/hold it in" so I wouldn't freak out my boyfriend and his friend, the pilot.
     If they had realized how sick I felt, it would have alarmed them too much. My instincts told me that would make things worse, that it was better to wait it out...in my head. Nowadays, I would take deep breaths.
    At the time, I wasn't sure if I was going to faint or throw-up or both, but my impulse was to get safely on the ground where I could lie down...on the ground, literally. I don't remember it feeling the same as a "spell" because it was scarier and more "out of control in a bad direction."
     It may have been a panic attack, now that I look back on it. Whatever it was, I knew the best thing for me was to "keep my head together and get home."
     I did it, too, without any chemical seat-belt to guide me at all, prescription or otherwise. There was no champagne nor anything else on my breath that afternoon.
     I'm sure I prayed and probably recited Psalms and Shakespeare in my mind because I have it memorized so well, and that's what I do sometimes. It's a  mix tape that plays over and over...like scripting.
     I managed to tell my boyfriend and his friend, the pilot, that I felt bad. I probably said I was about to pass out or get sick to my stomach.
     Once they looked at me, they knew it was time to turn back, so we did. It was  was a short trip, and I don't remember much of it.
     I was buckled in, literally, the entire time, so it wasn't dangerous for me at any point. It only felt dangerous inside my head, and once I realized that, I was okay.
     I no longer felt sick to my stomach, and neither did I have the urge to lie down on the pavement at the airport the moment our wheels touched ground.
     Instead, I could take the time to unbuckle and walk over to the grass.
     I didn't fall along the way.
     I was back,
     home.

Monday, January 18, 2016

Neuroplasticity

     Don't talk about us like we aren't there.
     We hear you.
     We aren't deaf.
     Even if we were,
     we would know what you're saying by your lips.
     They move when you talk.

     That's how it works.
     People who are not using their ears
     to listen
     find other ways
     we can't even think about
     because our brains are too busy
     hearing
     through our ears.

     It makes sense
     if you think about it.

     You probably won't, though.

     .....or did you?



Thursday, January 14, 2016

Theory of my Mind

     Has anyone seen the connection yet?
     Do you know what Forget the Label means?
     When you think of me now do you see the same person you saw last month or last year?

     What is my label?

     Labels are supposed to make life easier, aren't they?
     You need a label to receive services.
     That's what my Intro to Disabilities prof said.
     But I don't feel like I have a disability.
     I fooled everyone for a very long time, didn't I?
     So, do I have a disability?
     Do I need your services?
     Only if I say so.
     I hope you are beginning to understand
     my message
     here.

    To me,
    It's been obvious for a while now,
    But that's how it is, sometimes.

    Does that mean I have a Theory of Mind problem...

                                                                                                           Or is it You?

Aglow

     I'm starting to miss my Depakoted life and my hidden disease no one knew about.
     However, I'm not doing much to get that life back again.
     According to Virginia state law, I would have been able to drive again on New Year's Day...if my seizures had stopped after the wreck.
     I knew the rules before the doctor said I had to give up my license, but still, I burst into tears when the words came out of his mouth. It takes a lot for me burst like that, so quickly.
    The doctor was nice and tried to make me feel better by reminding me it would be something to celebrate for the new year. 
    At the time, in early July, it sounded so far away...but here I am, without any real plan for getting my driver's license back. It just doesn't bother me like it did then. 
      I'm post-ictal at the moment, and it feels really good in a way nobody else seems to understand. 
      My mind isn't racing with a million thoughts about stories I need to write, like most mornings.
      Instead,  it feels clear and calm.
      Before the seizure, there were too many ideas bumping into each other, and now, some of them have gone back to sleep.
     No one talks about this part of the kindling effect because they don't feel it.

     The kindling effect is what happens when one part of an overexcited brain touches another part and they get hyper together. The excess energy can keep going like sparks touching other places to spread the fire.
    
     Only I know what it feels like when those tiny sparks begin to fly between the deepest parts of my brain...The doors to my memories open up one right after another and take me places beyond my dreams and feelings into somewhere else...better.
     Can your brain do that?

     Everyone else sees the effects of those tiny flames, but I feel the warmth.
     You just can't understand.
     Today I felt like I was glowing from the inside.

Wednesday, January 13, 2016

The Midnight Disease

     I know there is much more to be discovered about this thing called epilepsy because the rules have changed so many times over the years.
     The questions have changed, too. Neurologists ask behavioral questions now, lots of them.
     My favorite one is, "Do you have a bad temper?"
     Until a few years ago, I said no...
     But in the back of my mind (my broken hippocampus?), I could see a little girl running out to the apple orchard for private temper tantrums.
     She doesn't care about bee stings on her bare feet because she doesn't even feel the grass. She doesn't want anyone to see her stomp around and cry. She doesn't care about the teasing to come later for acting like a baby again; she has to get out before it comes out of her.
     I don't know what it looks like from the outside because I only feel it on the inside.
     I'm writing in the present tense because it still happens sometimes.
     Doors slam behind me, and I have no memory of how much force I used to close them. None. Zero. I don't remember anything after that first rush of freedom as I pass through.
     Sometimes, I don't even hear the door slam at all. Then I become  confused because I can't understand what happened or why the people on the other side are mad at me.
     I would rather have a seizure because it's easier to hide, unless I pass out. Most people don't notice, and they don't punish me...even if I break things, like cars.
     In both situations, I do things that I don't remember later.
     Please read the above sentence again in case you don't understand it's full impact. Let it sink in.
     Sometimes, there's a big mess to clean up. It's easy after a seizure, but not after slamming a door because I have all those mad people to apologize to without being quite sure what I did wrong.
     Dr. B said I have the syndrome, but remember, most scientists won't even write about it because there isn't proof. He said he could see it in my mannerisms and the way I dress.
     I took him seriously for many reasons, but mainly because he started practicing medicine when I was seven years old and has seen many, many broken seahorses in his time.
     He also said to find a different job where I could fit in better.
     I knew he was right, but it hurt to hear a medical doctor say the words out loud.
     That was four years ago, and I worked my last day as a public teacher the following month.