Wednesday, December 9, 2015

Drug Holiday

     I'm on a drug holiday.
     It started yesterday, the same day I finally began Christmas shopping.
     I'm going to stay on this holiday as long as I can. Forever would be nice, but that probably won't happen.
     A drug holiday is when someone like me stops taking her meds. 
     Funny, isn't it? I laughed the first time a doctor said it to me, and quickly added it to my vocabulary.
     My doctor didn't laugh when I told him about my upcoming vacation. He was surprised and not quite sure how to react, so I made a quick escape.
     My chemical seat-belt was too tight, and it was trapping me inside.
     I hadn't slept well in four months, so I unbuckled to rest.

Friday, December 4, 2015

Sleepless in Springfield

     I woke up at 4 a.m. again. That's been happening since mid-August. Sleep is something I work for, like a nighttime job.
     Two or three Benadryl tabs do the trick for falling asleep but then I wake up a few hours later when they wear off. Sometimes, I take another one or two around  3 a.m., but they only work until around six or seven at the latest.
      Insomnia has been my nighttime companion for as long as I can remember, but my new seizure meds have made it worse. My mind wakes up "too busy" to go back to sleep, hours before the new day begins.
      Even as a little girl, I woke up at least once or twice during the night. I was the last one asleep at pajama parties, the one tip-toeing down the hall to use the dorm bathroom in college.
     Everyone tells me to nap. I can't.
     Over the years, I have made friends with other insomniacs and nighttime animals like foxes and possums and fruit bats; it's lonely being awake when everyone else is asleep.
     The Internet makes it better and worse at the same time.
     Facebook and Instagram wake up my mind too much because I start to think about people I miss, but Pinterest helps.
     Stephen King keeps me company in bed sometimes. His stories don't give me bad dreams, maybe even the opposite because I really get into his ideas on the mind and religion.
     I try to stay in bed when I can't sleep but sometimes get up and creep around in the dark like a ghost lady until I feel sleepy again.
     I don't turn on the lights because that makes it worse.
     Prescription sleeping pills are too strong. I tried them about 15 years ago when my sons were little, but it was a disaster. The pills knocked me out while I was still on the couch, and I had to wake myself back up to get the boys into bed.
     Ambien gave me nightmares and I flushed the pills down the toilet, like a spooky potion I didn't want in my house.
    Neurologists say it isn't healthy to interrupt my normal sleep patterns with strong pills like that anyway. I had a sleeping test done a few years ago where they glued wires on my head and had me sleep in a pretend bedroom.
     It was the best night's sleep I had in years. The attendant had to bang on the door the next morning to wake me up so he could go home. I think I was taking Trazodone for sleep at the time, which made me feel kinda hungover every morning.
    Trazodone is an "old school" antidepressant doctors prescribe for insomnia because it makes people sleepy right after taking it. My sons called it my "loopy pill" because I sometimes said goofy stuff after taking it at night..funny things we still laugh about.
     My doctor prescribed Elavil for the same reason at the end of October, but I've already stopped taking it because I felt slow during the day and wasn't getting anything done except laundry and dishes. It made my stomach hurt, too, and I had to go to another doctor for that.
     I wish doctors considered sleep to be more important than controlling seizures.
     Then I could be free to just be me, and maybe sleep past 4 a.m. again.

     I took my label off, by the way.
     Nobody wants to talk about epilepsy.
     Nobody wants to see or think about it.
     I would rather keep a dangerous secret than see the look in other people's eyes when they judge me as being defective.

Thursday, December 3, 2015

50 Shades of Epilepsy

     Nobody "gets" my art even though the message is pathetically obvious. It's weird, like most things I come up with on my own, so I keep my finished works upstairs in a room where no one can see and make fun of them.
     I'm fascinated with words, the way they look and sound and combine to start wars and love affairs and political scandals.
     They are beautiful and powerful, even the small ones, and I like to play with them all. I rhyme by accident sometimes and could probably talk in rhymes, like Dr. Seuss, if I really tried, especially if I made up my own words.
      That's something else I like to do, so much in fact that my sons now do it, too. Yesterday, Tommy created the word "trafficky" while driving me to the grocery store.
      Springfield is a very trafficky place to call home;-)
 Rebel Speducator is a nickname I gave myself in 2011, when I wanted to write about education without getting canned as a special education teacher.
     The Speducator part was easy. Then, I added Rebel as an inside joke. I'm from North Carolina and wanted to toy with the Confederate Rebel image, the idea that people from southern states are racist. Part of my rebellion is against institutional racism, so there's the punchline.
    The first mannequin I decorated is in a neurologist's office in D.C. He treated me during the time I created my pen name and definitely "got" what I was trying to say.
     I will write more about him later because he deserves an entire blog post, maybe two.  Dr. B gave me a new label that made me feel strong, almost invincible.
50 Shades of Cat
     He called me a survivor.
    The mannequin I gave Dr. B is covered with print-outs of prescription drug information. I copied the idea from an art studio with painted mannequins in the window.
     I looked at all the stacks of paper describing things drugs could be doing to my body and decided to strip them of their power.
     Liver damage, hair loss, weight gain, indigestion, insomnia, loss of appetite, severe rash that makes your skin fall off, diarrhea, drowsiness, nausea, constipation, sensitivity to sunlight, dizziness, ulcers, double vision...All of it ripped up and redistributed on new, perfect bodies, the way I say.
     It matters how I tear the words and where I place them. Some words/phrases belong near the heart; others belong on the bottom. I rip up books and notes, too.
     There are plenty of the latter to choose from because I write all the time. (It's a trait that goes well with being a reporter but not so well with teaching. More to come on that subject, too.)
     50 Shades of Cat was the easiest project because I didn't need to look at the words very much. They were sex words and phrases that look comical out of context. Not paying attention to the words allowed me to relax more and feel the paste and paper on my fingers.
     Could my desire to rip up words and glue them to dolls be connected to my damaged brain?
     Maybe. There's no way to know for sure but, yes, I think it is.

Wednesday, December 2, 2015


     I had a seizure a few minutes ago when I began writing. Yesterday, I started having one immediately after typing the words "Henry Siler." Before I could write the next word, there I was, in first grade again.
     And no, nothing awful ever happened to me at that school or at my middle and high schools. I never had a "bad" teacher, and I wasn't bullied by mean kids. These unplanned trips in time don't take me back to hidden, dark places.
     If they did, I wouldn't  be writing about it here.
     The moments I revisit are -- like my seizures -- scary, confusing and sometimes embarrassing. However, they are also very familiar and almost comforting -- like my seizures.
     I don't do any of it on purpose. If I could, I would do it in a much different way.

     One of most confusing days of first grade was when we had  Show-and-Tell right after Christmas Break.
     Something didn't make sense to me about the other kids' toys. A really, really poor girl brought in her new doll, a cheap, hollow version of Barbie.
     I couldn't understand why Santa brought her a fake Barbie instead of the real one from T.V.
     She was quiet and never got into trouble in class the way I did, so why did I get better toys? Why did a naughty little chatterbox like me get dolls with soft skin and hair when she had to play with cheap plastic?
     Where was that magical, generous person who made everything okay, at least one morning out of the year?
     I learned the answer during first grade by simply looking around me at the way some of my classmates were dressed, how they smelled and the tangles in their hair...
     And it bothered me, a lot.