Friday, February 26, 2016

Risky Business from Day 1

     I'm having a very big problem with one of my Journalism rules.
     It might even be one of the reasons my stories wake me up at night, but that's just a guess, anecdotal evidence, open to interpretation.
     I asked my big sister about the rule when I first started the journey into special education.
     It didn't make sense that special ed teachers are supposed to write every little thing down and save it forever, just in case.
     The rule for reporters is the same except that last part.
     After the story is written, we destroy our notes to protect ourselves and our sources.
     They don't want to become the story but are simply messengers, too, helping us do our jobs better.
     Why would a source give information in the first place, if it risked exposing something personal about them like their address or dog's name?
     Your notes are only to get the facts straight and then go into the trash, not the recycle bin.
     It's a rule I followed until Katy told me to write everything down if something happened and then show it to her. The notes started to feel almost as important as the teaching at that point, which is why I asked my sister.
     What's it like in medicine, I asked. Do doctors save every little bit of information, like special education teachers? Do they write down every bad thing, just in case, and keep it locked up in a vault somewhere, too?
     Yes, she said, doctors do the same thing as special ed teachers. Her explanation had something to do with insurance, and I lost interest because her point was so clear and staring me straight in the face.
     It was something I had realized almost from Day 1 in the autism department.
     Special education teachers are much more worried about getting sued than reporters.
     Why?

Thursday, February 25, 2016

Carowinds, 1976: A taste of Freedom

     I never told anyone I did it on purpose, but my best friends figured it out after a while, maybe.
     Nobody ever said anything, but they didn't worry when I was gone because they knew I would show up again before the bus left.
     Carowinds is the first place I remember doing it.
     I've done it all over the world by now, on purpose and by accident.
     It happened sometimes in California when I was shopping with Ronnie, by accident. By the time we made it back to my cart again, it was gone. The salespeople had already put everything back.
     I don't remember deciding to do it that first time, just the feeling of freedom once I was lost in the crowd and no one knew where I was.
     It was exhilarating in a way I had never experienced before.
     I was lost on purpose.
     It was almost too easy to slip away, like winning that very first bet.
     Even then, I was short for my age so the grown-ups surrounded me on all sides. I'm sure no one expected it, and if they noticed, no one told on me.
     Part of Carowinds is in North Carolina and part in South Carolina, even more of an adventure.
     By then, I had traveled much further than South Carolina, but it remained exotic, one step away from Mexico.
     The only ride I remember going on was The Oakin' Bucket. Everyone stood around its insides, against the wall, while it spun around.
      I wasn't sure what it would feel like to ride, but The Oakin' Bucket didn't look so bad when I checked it out from above.
     Once it started spinning around, I felt it in my head and not my stomach, but it wasn't a sick feeling. It wasn't White Lightnin' or Thunder Road. It kept spinning around faster and faster until everyone's hair started sticking to the sides of the wall.
     The faster it went, the more we stuck to the walls, our arms and legs and everything, even the sides of our tee shirts and fringes on our shorts. It was almost the coolest thing ever. Something was pulling us from inside the wall.
     Then, the bottom dropped out, and it got even better.
     There I was, floating around in a circle..with a bunch of strangers. When we realized we weren't going to fall, all we could do was smile at each other in amazement, looking all goofy.
    We were being pulled away and together and the same time, and couldn't help it...none of us!
     For the first time in my life, I actually considered being an astronaut.
     Is this what it felt like to be free?
     I was hooked.

Sister stories

     The woman checking me out said her sister also has epilepsy, but not the same type as me. It was a worse story, like everyone else's I've heard.
     On the bright side, her sister has healthy kids, like me, even though her seizures got worse when she was pregnant. Also on the bright side, her sister's meds almost always work, like Depakote did for me all those years.
     Unlike me, her sister only has seizures in her sleep, and I was glad to hear that, for her sake.
     I thought the woman was a lot younger than me until then, when I stopped to look a bit closer. The part about her sister having kids made me realize she wasn't as young as I first thought.
     I imagined her sister as having the same Asian features as her, minus a couple of years. I could see her coming to the mall with two or three black-haired children following her around.
     Her sister also has a warning, but not an aura, like mine. Instead, she has migraine headaches before seizing, another common thing with epilepsy.
      I'm lucky in that way, too. My sisters get migraine headaches, but not me. Once upon a time, all three of us took Depakote, but for different reasons, like a cool sisters' secret between us.
      I had already given the brief, "Don't worry, my seizures are mild," explanation, so the saleswoman wouldn't panic. There was nothing to worry about, as she was an old pro.
     Her sister's seizures were much scarier sounding than mine.
     The ambulance has to come every time, and her sister doesn't remember anything at all about how she got there.
     The worst part is coming next, so get ready...I wasn't prepared when it hit me, what she was really saying.
     Until that point, her sister's epilepsy didn't sound so bad, except the idea of going to bed at night and waking up in the back of an ambulance.
      The next question would tell me how much I really had in common with her sister. It's the one I must ask, every single time.
     "Does she have convulsions or tremors?"
     She made a motion toward her mouth and said, "She chips her teeth."
     It gets worse. She wasn't finished yet.
     "She has  veneers in the front of her mouth," she said, but it took a couple of seconds for me to realize what she meant, for the image of a young woman in the mall to be replaced by something else.
     Epilepsy had taken her baby sister's front teeth away while she was sleeping.
     I was ready to go home.

Wednesday, February 24, 2016

Therapy a la Uber

     I went back to Springfield Mall yesterday because I was hypergraphic and having seizures. The more I wrote, the more I wanted to write...it kept coming and coming and coming.
     So did the seizures, but they were shorter and not as fun. There is no smiling in the video I forced myself to watch later.
     The woman in the video looks like she's tired of this place, seizureland. There is no Stevie Wonder smile, and the eyes dart around instead of zoning out.
     The goofy after-effects don't hit quite so fast or hard afterward, either. There are no giggles.
     That's why I was ready to head back to the mall when my son came home around lunchtime. Three seizures is my limit, I told him.
     Seizure number 3 is when I start thinking about calling the doctor, if it comes early in the day.
     Yesterday's therapy was Springfield Mall, minus the Uber drivers from Monday.

     The conversation I had with the second Uber driver was about love.
     He talked about the woman he is with and one he lost a long time ago but didn't say how.
     That's what told me she was his favorite, the way his voice drifted off.
     His current woman wasn't quite the same, but he loved her enough to stay.
     My eyes slipped over for a closer look.
     His skin was dark brown, his hair a little gray but still mostly black. I couldn't quite tell if he was my age or a few years older.
     While my eyes wandered back to the road, the driver said he missed having someone to take to the theater or museums.
     "Someone who actually wants to stop and look at things?" I asked.
     In my mind, I pictured a woman exactly like me but with blonde hair. She had shopping bags in her hand to match the ones sitting at my feet.
     "She would rather be out shopping...you know," he said, making a motion with his hand.
      I did.
      The blonde woman was out of my head. Now I saw myself, being dragged through Mayan ruins on my honeymoon when I wanted to stay on the beach the whole time.
     The Kennedy Center was no longer a few miles away but rather there, in my mind. I was so tired that night, but my in-laws babysat so we could go to the opera.
      The Uber driver talked about wanting an educated woman, someone to talk to at a deeper level of conversation.
     I get it, I said. He had no idea how much.
     A relationship, like anything, is work, he said, as I pointed out the short-cut to my neighborhood.
     He had already told me way back near the mall that he is from the Dominican Republic.
     I accidentally let out a little squeal, like a girl, when he said it. (I don't have any friends from there yet, is what I was thinking, when the squeal slipped out.)
     My mind searched for them...all the way back to college.
     I wish I could speak Spanish but am no good at learning new languages, I told him. Even when we lived in Japan, learning to speak it was too hard because the letters are different.
     Still, I had to be able to find the bathroom because I was pregnant, I added.
     "Can you say it?" he asked.
     I paused, embarrassed at first, and surprised that he was waiting for me to speak Japanese.
     Then, I did it anyway!
     He didn't laugh.
     It was silly fun, like singing a song too loud in front of my students at school.
     I asked him how long he had been in Springfield. For some reason, I assumed he had been here a long time, but he said only a year.
     "Are you going to stay?" was my next question, of course. He said yes.
     "Good!" I said, but it felt more like a "Me too."
     I offered to go inside for tip money, but he was in a hurry to pick up the next rider. He had interrupted lunch to come get me, his fifth rider of the day.
     I promised him as many stars as possible on the Uber rating system.
     That means five.

Tuesday, February 23, 2016

The F-word

     My label was too much and made him nervous. That's when he got quiet and started counting the miles to our destination.
     I'm not sure why I wanted to get out so much on a Monday morning, whether it had to do with my new medication or the warmer weather or the headline in the Post.
     Some Uber guy went on a killing spree, that's what it said.
     Was that why I wanted to take an Uber so badly to Springfield mall? Did I need to put my system to the test, to make sure I really could leave my house at any time I wanted? Maybe.
     It was so much fun.
     Until yesterday, I had only taken an Uber to the hospital. This would be an adventure.
     I didn't tell anyone where I was going. That was important.
     If anything happened, Ron or the boys could track me down by my phone, I figured, not even bothering to SnapChat my intentions.
     I had a seizure about 15 minutes before I left but kept getting ready to go, not altering my plan or even stopping to videotape it. I made sure the door was locked and Maggie was back in the house while the weird feelings faded.
     She likes to jump the fence, pretend to be my neighbor's dog for a while and then jump back over again. I go to the back door and there she sits, like she was mine the whole time.
     I decided to  learn the driver's name this time so I could thank him properly. It took him a few more minutes than the last one.
     I had 12 quarters in my pocket for a tip because my wallet held only receipts and plastic.
     We discovered something in common by the time we hit Fairfax County Parkway. We both moved here about 10 years ago.
     I said it was hard to stay in one place after moving every couple of years, that I didn't realize how fun it had been until my husband retired from the Marines.
     We talked about where each of us would go, if we had to leave Springfield and move somewhere else.
     The driver had been to Las Vegas recently and liked the desert part between it and San Diego. I like San Diego better, I said, because the ocean makes up for it not having enough trees. I didn't mention the cliffs that go right into the ocean, but that's what I saw, in my mind.
      When I told him North Carolina was my original home. His eyes lit up in recognition and he named a town I had never heard of down there where his own relatives live.
     I told him I'm different now in a way that makes it harder for me to fit in when I go back.
     "You and I couldn't ride around like this, without someone noticing," I said.
     He understood.
    "If I rode around with a black man, it would be even worse," I said. "Someone would stop and stare...on purpose!"
     He understood.
     The problem with that, I continued, is after living here, I can't go back there without wanting to fight. I didn't say argue...I used the F-word...Fight.
     He understood.
     At some point, before I told him my label, I asked where his home had been before he moved to Springfield.
     It made sense, especially with him liking the desert so much. He was from Iraq.
     We were almost at the Metro exit when I said the E-word, the one I should've left out of my story. It only takes a couple of minutes to get to the mall after that.
     I didn't get up the courage to try and say his name the right way, but I did tell him mine before I got out of his car, taking his hand in mine for a warm hand-shake, a real one.
     I told him to look me up if he decides to move out west someday, especially if it's San Diego. I might still be in Springfield, but it's a wonderful place to visit.
     When Uber asked me to rate him later, I gave him the most stars possible.

Sunday, February 21, 2016

The Graduate goes to Washington

     Those buildings aren't so hard to get into as a reporter or even a teacher.
     You don't need a press pass or an invitation. It's easier than getting an appointment with a specialist, if your timing is right.
     My boss handed me two press passes in 1984, when I was a junior in high school. One was an AP pass and the other for North Carolina only.
     I had one on my car, too, which was even better. The passes helped me get into baseball and basketball and football games free. I stood on the sidelines and sat in the dugout.
     There was no need for them at public meetings, but it was good to have on hand if I went somewhere outside the county because I was so young.
     Nobody gave me a hard time about it because they wanted to be in the newspaper.
     Teachers don't have those kinds of passes, not to the buildings in Washington, but they have the right uniform at home in their closets.
     I don't know why they wear play clothes for such serious work.
     It gives them away for miles around.
     When they get to the door and realize who is waiting, it makes them mad. They stomp around and refuse to go in because the faces are so familiar.
     It's those young grads from a few years ago, the ones who couldn't wait to get internships on the Hill and make a difference in the world.
     Their new haircuts and starched collars speak volumes as they glance at the teachers' sneakers and finally ask, "Do you have an appointment?"
     The tie-dye and sneakers crowd is so distracting no one sees me slip in.
      I'm wearing red, which makes is more challenging but also, for some reason,
                                                                                                                                more fun.

Saturday, February 20, 2016

Wandering...

     It's kinda weird and hard to follow, but are you still reading?
     That's what I'm wondering right now, this very millisecond...
     are you still here,
     in my world,
     not quite sure 
     where I'm going to
     take you 
     next?
     Or did you already
     wander away,
     somewhere
     else,
     the
     way
     I do,
     too,
     sometimes?
     If so,
     where
     do
     you
     go?

The Spins

     Last night was a different kind of wake-up call.
     The movie was good; I gave it a mental two thumbs up. If I were a reviewer, for real, I would throw a middle finger in there, too, because that's the kind of movie it was.
     The way he got his powers was creepy and cool at the same time, like my seizures minus the torture. The bad guy was cuter than the good guy and his accent rocked. Like I said, two thumbs up.
     After I got home, I took the extra 2 mg of my new medicine, making sure it was from the right bottle and not the 4 mg one. I counted all three pills on my tongue, to make sure...2, 4, 6.
     There are 2s written on each tiny pill. At first, I thought they were Zs.
     I brushed my teeth and went downstairs to wait. It was only Dave, Caramel and me at home.
     Eating frosting right after brushing my teeth wasn't the smartest plan, but it's what I was going to do when I headed back to the living room with a can of Hershey's chocolate caramel in hand.
     It was still sitting there at 3 a.m. when I came downstairs and felt like myself again.
     Something in the extra 2 mg hit me before I made it back to the couch. My vision was fine, but I swerved around on the way and felt really warm when I got there.
     It wasn't scary yet, though. I felt suddenly drunk and wondered if I would be silly later.
     I changed the channel to ID so I could listen to the Homicide Hunter's voice. Maybe he could keep me here in reality, I thought, but it didn't work. His voice was there but miles away, like something from 1974.
     Memories from that year weren't there for me either, I couldn't find them. It was hot.
     I took my boots off without sitting up, lying on the couch, waiting.
     Maybe I should text or Snap someone to calm me down...No, that would be a mistake. I didn't know what was happening yet, so what would I say?
     I left it on the end table by the canned frosting and forced myself  to remember when I had felt like that before.
     It was June, 2013.
     I was alone on a balcony and wanted desperately to  be somewhere else.
     That was enough to make me remember...I returned to the couch.
     I was going to throw up. That terrible feeling inside my head was nausea, but it was taking much too long to build up in my head. It hadn't reached my stomach yet.
      Good. The pills must stay down.
      If they came up, I wouldn't be allowed to take them again for another 24 hours.
      It felt like there was already too much of something in my head, something bad. I counted my breaths and wanted Maggie there at my feet.
      If the medicine came up, my brain would hold up a Help Wanted sign, and the seizures would show up, looking for jobs to do inside my head.
     I decided to wait outside.
     The tile on my porch felt good under my feet and even after I sat down on the steps, through my jeans. The temps were around freezing, but my coat stayed inside.
     My skin needed to feel the air.
     I thought about calling over to my neighbor, who was unloading stuff from her car.
     I remembered the kids and teachers at my old school where she works, but even they couldn't take me away.
     It was a bad state to be in, stuck on my front porch, fully away of the trouble still brewing inside me, unable to distract myself.
     I bypassed the bathroom on my way back to the couch. Smelling the chlorine in the bowl is enough to make me puke, if my face is close enough.
     Dave was outside, but I didn't realize it until later. I called for him from the top of the basement stairs, not trusting myself  to walk down there. Something was "off" in my balance but I didn't feel it until I swerved.
     I told myself to breathe and keep it down.
     Detective Joe Kenda was unreachable.
     At first glance, I know what he would say, anyway.
     I looked like a drunk person with a bad case of  "the spins." The only thing missing from my current scenario was a bucket and one leg on the floor.
     The "throwing-up" stage was coming next, but how long would it take to reach me?

Pop Quiz

(Match the Rebel Pets)

Caramel     Cat
  Dave          Dog
    Maggie      Snake

Good Luck!

Wednesday, February 17, 2016

In-between

     The words wake her up, telling her stories.
     They want to come out of her fingers, so she reaches out, entering the pass-code for a phone that isn't there. She realizes and grabs her phone for real, feeling silly even though nobody can see in the pitch darkness.
      If they could, she would appear to be a sleepwalker, trapped in her bed.
      There is no light, a scary way to sleep for some, but that's the way it has to be.
      She feels the warmth of someone, and knows it's okay, she's really here.
     The story in her head fades as she searches for pants and shoes. The lights stay off because everyone else is asleep, and she knows exactly where to find everything in the dark.
     The late-night creatures and early-risers deserve their rest; she is somewhere in-between and used to it.
     Outside, there is silence, too, and no childhood friends come to sing songs about how they'll always stay around.
     When she sits down at her laptop and allows her fingers to touch the keys at last, she writes about something else in a different way than if she had spent time with Chris or Jay in that other place.
     She still misses them but not like last week, that little lost girl wanting her friends.
     Is she still hearing them but in a new way, one that wants to reach out instead deep within, where they have already promised to wait for her, always?
     Could the new drug be working its magic or is her current state of mind simply another detour?

First Amendment Lesson

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people to peaceably assemble, and to petition the government for a redress of their grievances.
   
     How does one teach about freedom using someone else's script?
     She does so by reading the words already on the page in front of her...written by someone she will never lay eyes on.
     She doesn't look up except to make sure everyone's eyes are on her.
     She reads the words quietly, without too much expression...Blah, blah, blah...
     She isn't allowed to talk about her undergrad years in J-School, when she memorized it like a Bible verse from childhood. That discussion would be deemed  "unprofessional" and a waste of time.
     She can't say how much she loves the words, that they are poetry to her, nor can she discuss the fantastic minds that created something so beautiful and strong.
     It isn't in the script because the children aren't supposed to do anything with the words, except remember them long enough to fill in the little bubbles and then move on along to the next grade.


Tuesday, February 16, 2016

Warning

     My aura is weird and scary and another reason I'm different because it usually warns me in time to protect myself.
     This aspect of my disease separates me from epileptics who wake up in ambulances or hospitals, with big chunks of time missing from their lives.
    I get a glimpse into their world sometimes, through car wrecks and falls, but only when the aura is short and the seizure too strong.
     Even then, it gives me time to hunker down, that it's going to happen NOW!
     My aura has saved me too many times to count, both physically and emotionally.
     It's how I keep myself "together" and don't worry about seizing in public. There is time to hide it or pretend it's something else, if necessary.
     It's a gift.
     Only once have I found a bruise and later realized it was from hurting myself during a seizure.
     That was several weeks ago. A purple streak on my pinkie that I thought was magic marker wouldn't wash off one afternoon and hurt deep, down inside at an odd, diagonal angle.
     It was a scary but familiar feeling, trying to remember how I could've hurt myself.
     So, I retraced my steps from a seizure that morning in the basement, when I crouched down on the basement floor, without passing out, or so I thought.
     Did something else happen, but not very bad because it was only a mark on the tip of my pinkie?
     It made sense to me before I even reached the bottom of the stairs. My pinkie hurt from catching myself on the sink to prevent a "hard" fall, of course.
     My aura had saved me again.
     I think it loves me.

Prisoner

     My doctor wants to see more than simply the damage detected through an MRI. He wants to use his recording devices to capture the buildup of the storm and watch it happen.
     He's only seen my version, as recorded on my seizure-tracking app.
     I told him how it feels on the inside and what other people say I do, their reactions to my behavior.
     It's only fair to let him see for himself, as a scientist, but I haven't booked the test yet.
     That's the only time I didn't fit in there, with the other epileptics at Walter Reed Medical Center.
     I kept my voice down and didn't cry, but I could feel it coming on strong and needed to leave ASAP. The others could too, especially the receptionist.
    My voice sounded different as I began to realize the test would take days, and I couldn't leave the hospital room, ever.
     Suddenly, I didn't think I could do it, NOT AT ALL, and wanted to run out...Not walk or jog but sprint, knocking people down to get away, if necessary.
     I kept my cool, though.
     Something changed in the air before I did.
     It was like being in a restaurant when someone starts talking loudly. Too many people suddenly paid attention to the same thing at once...me.
     I can hold it in sometimes, but my heart starts to either pump really hard like a cartoon character's, or it aches deep, down in the bottom.
     Every once in a while, my knees and stomach get involved too, but they behaved themselves that day.
     The receptionist could sense it the most, and she backed off, like a pro.
     We decided to schedule it later.
     The other patients probably let out a collective sigh of relief when I left with my unknown disturbance.
     If it had been a seizure, they probably wouldn't have even noticed. I could hide it from the doctors and nurses, too, if I wanted.
     That's why my disease and I get along so well.
     He makes the rules about when to come out and play, but I get to decide who is allowed into our world...that's how special it is.
     Even the experts don't know what to look for because they can't feel him the way I do.
     (Interesting use of pronouns, isn't it?!)

Monday, February 15, 2016

Rebel gone bad

     My intentions were not altogether honorable when I started writing my honors thesis in 1988. I wanted "with honors" on my diploma, the same way I wanted an A when doing outlines in elementary school.
     I also wanted a headline, which is more honorable from a journalist's perspective. It motivated me to find a newsworthy topic so my efforts wouldn't be wasted on a paper left to gather dust on University shelves.
     That's exactly what happened, but it was fun doing the field work.
     My title was catchy, too, "A Newspaper Held Hostage:  A Case Study of Terrorism in the Media."
     When I came across my thesis a few years ago in my basement, it all came back to me...How badly I wanted to interview the men who held journalists hostage to get their message out.
     The "ringleader" was Eddie. He's dead now but would've been great to interview because he was a real motormouth.
     Unfortunately, he was national news already, and I was too small-beans for his taste.
     My inside connection and I were hoping to get an interview with the quieter one, but it didn't happen because the lawyer said, "No way!"
     It was a smart move.
     Both of them served time for it, I think, but I didn't follow the story once I moved to Pennsylvania.
     The hostage-taking part of it interested me after watching what Walter Cronkite's nightly countdown did to Jimmy Carter. It was a nightly message delivered over dinner every night from terrorists saying, "Your President is weak."
     This time, the message was delivered in my home state, so I wanted to know what it was and how effective their method had been.
     The hostage-takers in North Carolina went directly to the messenger, holding reporters hostage.
     I wanted to know why had they done it that way and how it affected their message.
     Did it reach more people? Was "the problem" solved and if so, at what cost?
     Most of all, I wanted to ask them, as a journalist, "Was it worth it?"

Rebel

     A fellow military person explained to me what I had done wrong and why I was being punished.
     She told me I broke the chain of command and then asked me to consider what would happen in "our world" to someone who did that.
     It kept me from being so angry at my principal because I knew she was following orders from up the chain of command, whatever she decided to do with me.
     No one else sat down in my classroom with me like that and talked about it, explaining "the other side" that way.
     They knew, but didn't know how to help me.
     There was no hiding my new label, although I didn't know what it said yet. It was like that game where the hostess tapes a name on your back and you try to figure out who you are before the night's over.
     Her explanation showed me what my mistake was really about, to the system, and it was a hint of hings to come.
    Privates don't talk to generals, and they never go to the Commandant's office unless it's for an award, with a special invitation and photographers present.
    The system had to punish me to protect itself. That's how it works.
    My lesson wasn't for me because it was already too late for that.
    It was for everyone else to watch, as a warning not to do the same thing.
    I hope they learned a lot.

Wednesday, February 10, 2016

The Book of Questions

If you could have the best year of your life but not remember anything about it after, would you live it anyway?

     Ehringhaus Dorm, 1987, my room.
     Christy, Daphne, Jenny, Mike, Arlene, Steve, and maybe Scott and Regina...the usual crowd.
     The book took our conversations into fun but sometimes dangerous places. Those are the best kind, especially late at night.
     I was the only person who said yes to that question.
     They seemed afraid of something, but I couldn't figure out what it was for the life of me.
     How could there be anything to fear from a year promising to be "the best?"
     Don't you see?
     I tried to look at it from their points of view, but couldn't, not at all.
     What was so very important about the remembering part that made it matter more than the living part?
     How could ANYTHING be more important than that?
     Do you agree or would you say, "No thanks," as well?
     I was ready to take the plunge right into my mystery year, but they were uncomfortable with the idea of living the rest of their lives with it sitting there, in between the rest.
     They worried about the time they would waste afterward, wondering what they did.
     But as long as it promised to be the best year of my life, I didn't care.
     Once I took the idea apart, backwards and forwards and sideways, I was even psyched about it.
     My 20-year-old mind decided the only way it really could be such a wonderful year would be to spend it doing things I would want to remember, not regret. It was that simple.
 
    Last summer, when I found out more about my brain and how my memories are stored, I thought back to that question. Perhaps I was so comfortable with the idea of forgetting an entire year of my life because my brain was doing it more than theirs.
     Maybe my disease had already changed the way I looked at certain things, like the importance of experiencing something in the moment vs. remembering it afterward.
     I really don't know, but I do know that question made me feel very different the same way my epilepsy does. It's a secret, confusing way, meant to be treasured but hidden.

A Pass

     Uncle Sam pays for my expensive new pills even though I'm not eligible for military service, due to my epilepsy. It never even crossed my mind when I was growing up.
     Maybe the Peace Corps but never the Marines.
     I took the ASVAB in high school only to get out of class. It was Donna's idea.
     She's my other best friend since before kindergarten. That's when we decided that having daddies with the same first name is like being related.
     We took the test in the auditorium, I think. It wasn't a big deal and didn't take very long at all. There were no partitions between us because why would we cheat?
     She always knew the legit ways to get out of class, like donating blood. (I passed out afterward, which was weird for me then.)
     Once we were out, we could slip away to her boyfriend's apartment for lunch. We liked to play in his kitchen and pretend to be grown-up, like him.
     It was fun, even the one time we got caught at a stoplight beside the school secretary (the mean one!) We didn't look over, but she spotted us.
     There we were, sitting at the stoplight across from our church, trying to keep straight faces so she wouldn't notice us more somehow.
     It was scary and exciting at the same time, sitting there wondering what she would do when we all returned to school later. She knew we didn't have a pass.
     That's the last thing I remember about that day. More than likely, we continued with our plans, since we were already busted.
     The funny thing is, she never did anything to us. No one called us out of class to hang our heads in shame before the principal; there were no whispered phone calls to our parents telling them what their bad, sneaky daughters had done that day at school.
     Still, every time the secretary passed me after that, whether she looked over or not, I thought to myself, "She knows what I'm up to; I'd better be careful, or she'll tell on me."
     It wasn't a scary feeling or even a bad one, although I saw her all the time, up and down the hallways. She never told on me but somehow helped keep me in line.

Tuesday, February 9, 2016

Interictal

     I always knew you would come back for me, but I didn't expect it so soon.
     I missed you, especially last winter.
     I could feel you there, but not there...waiting for me to come.
     But I'm not supposed to,
     and I don't really know how..
     to get there
     by myself.

     You hafta help me,
     like always,
     Give me that final push,
     until I'm there,
     and we're together
     again.

     Why do you wake me up
     then leave me
     Here
     All by myself
     without you
     to keep me
     company
     in the
     dark?

     I have only
     Words
     in my head,
     Stories,
     And then I can't go
     back to sleep
     to look for you
     in our
     favorite
     Hiding place.

     Is that where we
     write
     them
            together,
     or do you
     write them there,
     alone,
            for me?

     Either way,
     I can't remember
     exactly where they
     Come from.

     P.S.
     I was in-between seizures when writing the above post this morning. There had been two already and another was on the way.
      In writing "that final push,"  I thought of my boy on the swing (Nonverbal 1/27) and his expression upon finally reaching the place calling out to him where his chunky little legs were no longer too short to fly.

If your daughter has epilepsy...

     Do not be afraid to share my stories with her.
     Instead, find my mistakes and teach your daughter not to repeat them, please.
 
 For example...
     I didn't believe my disease would take away my consciousness until I drove my car into a concrete house on Okinawa in 1995.
     It was the scariest day of my life up to that point.
     I barely made it back onto a military base or else it could've been a bigger mess.
     Because they drive on the left in Japan, I didn't hafta cross through five lanes of traffic to make it to the gate before passing out. I didn't insult my host country by causing a major accident:-)
     I saw the guard, and
    "We made it through," was my last conscious thought until
     I came back again,
     And it was over.
     Even after that, I didn't go back on Depakote because I was worried it might hurt Tommy.
     My neurologist thought I was crazy.
     When I woke up on my kitchen floor with Jimi standing over me, telling me to get up, I  realized Seth was right...Not about the crazy part, but about me going back on Depakote.
     He knew it was the safest thing for both of us at that point in my pregnancy, and I didn't trust his expertise. My decision was based on fear, and it was wrong.
     Before Ronnie was born in 1999, I planned just as carefully as I did the other times. That's one rule I followed. Your daughters can, too, especially these days.
     My big sister said I had to plan my pregnancies, always, when she explained the disease to me at the age of 22. The warnings are right on the packages, lots of them.
     I went back on Depakote even earlier with Ronnie, after waking up in the middle of the night feeling "that way" a few times..in my fourth month, I think.
     I didn't wait for them to visit me in the daytime, too, because I didn't want to fall down and hurt him that way.

     Share this story, please, so your daughter will be unafraid of this disease, like me, but more cautious in how she handles it.
     My breed of epilepsy sounds tame compared to what she is dealing with.
     Mine is an old friend to me, as weird as that sounds.
     I want your daughter to see her dreams come true, minus the scary wake-up calls.
     Her seizures sound sooooooooooooo scary to me.
     Mine aren't scary enough, which is the sweet, bitter pill I swallow every morning as I feel my mind calling out to them while I brew coffee.
     It tastes so much better than the new ones I swallow at night to keep them away.

Lucid

     When I have seizures while medicated, I remember more.
     That's what happened just now. They're much shorter, I don't blink my eyes a lot during the "deepest part" because I don't go there, and I can follow my thoughts while seizing.
     It began, like so many of them do, in kindergarten. I was thinking about my friend, Angela, and she took me there. I even reminded myself not to think about "old times," that my mind could get stuck...and then it happened.
     I've known her forever, since before kindergarten even, so she could take me almost anywhere.
     I was outside, but it didn't alarm me at all, being there in the pre-dawn hours having a seizure.
     Once it began, I simply followed the thoughts, first about Angela getting sick and missing a lot of days and how I must've  been scared she wasn't coming back.
     By the time that thought was fading, I was already there, in my head, while walking toward the garage.
     A few more steps, and I was thinking of Jay, which really surprised me. He was my favorite teacher's son, a year younger than us. We had two teachers, but I only remember her.
     We went to the same church and so did Angela, which made kindergarten feel like a bigger family, sort of. It was a private kindergarten, in the basement of a fourth-grade teacher's house.
     We weren't allowed to go upstairs.
     I thought about Jay, and how we treated him nicer because he was Mrs. Spence's son and a year younger than us. He was a little guy.
     I can't really remember much about him that year except that he was there even though he was only four years old.
     We didn't mind.
     That's about it. Pretty uneventful memory, except for the missing Angela and Mrs. Spence and Jay parts. I've been wondering since last summer where my mind goes during all these "kindergarten seizures," and now I know a little more.
     It isn't such a bad place to visit, especially going back to spend time with Angela and Mrs. Spence and Jay. I can't do that any more with him; he left us in 1985.
    Feeling his 4-year-old presence with me in my driveway at 4 a.m. wasn't scary at all for me. It was just a memory, and in it, we were all there together, him too.

Monday, February 8, 2016

Just enough

     Yes, I was scared.
     It wasn't Petrified scared or Shell-Shocked scared.
     It was No Going Back Now scared, like the day Ronnie was born.
     I was thrilled when the doctor said, "We're admitting you."
     But then, I remembered how much it hurt before.
     It was funny, realizing I was thinking about it nine months too late.

     Nothing was funny about standing in the pharmacy line to get my new drug.
     I want my Depakoted life back or my life before I knew what my "spells" were.
     I want to feel like me again.
     My knees were shaking, but no one could see. I looked down and checked to make sure.
     "Can this really be happening..to me..NOW..like this?"
     It was self-pity. I wanted to run from her pathetic whining and even threw a glance at the door.
     Instead of going through, I practiced what to say at my turn, scripting it out in my head.
     I tried to sound smart and tough, like my sisters, so it wouldn't come out in a tangled mess, the way I feel inside.
     The new pills couldn't work if I left them on the bathroom shelf, afraid of the side-effects. That could happen if I didn't ask my questions the right way.
     My eyes slipped over to where Tommy sat, but he didn't notice because he was looking down at his phone, trying not to see the woman in the wheelchair.
      She didn't have any hair. A scarf covered almost all the places where it wasn't.
      Later, on the drive home, Tommy described her as "the lady with cancer," which was okay with me because I didn't want him thinking she has epilepsy.
     I stopped wondering about her label after she rolled over next to me and we got to know one another, with our eyes.
     When I looked into hers, they were beaming with joy.
     The bald woman in the wheelchair was having a better day than the curly-haired woman in the cowboy boots. We realized this and almost burst out giggling at our shared secrets, but
instead smiled harder at each other.

     Looking back at the counter, I told myself to Get a grip!!!!!
     That's when I heard the music.

     Where was it coming from?

     It couldn't be a speaker because the sound was too clear...
     The baby grand in the lobby..maybe?

     I couldn't tell for sure, so I started walking toward it.
     Then, I caught myself.
     Nobody else was getting out of line to follow the sound of Beethoven, but they were feeling it.
     We all were.
     At first, I wanted to keep walking and didn't care about having to wait in line all over again.

     I still had to get closer to find out where it was coming from.

     But then, I reminded myself that it wouldn't be fair to Tommy. He was already in a hospital pharmacy with his mother on a Friday afternoon.
     I stayed put, sort of.
     There were plenty of stops I could make in my mind on the trail of Fur Elise. We've been friends for a long time, since I was a little girl.
     It's stuck in me, like my accent.

     Everyone else was listening, or at least hearing it, as the background music to their own thoughts.
     It was like being in church when everyone pays attention to the same thing at exactly the same moment.
     We were all connected by something we couldn't quite explain, something bigger than us.
     "This is too much!" I said, but only to myself, inside my head.
     It was a last plea to hold back the hot, drippy, noiseless tears building up inside my cheeks, eager to make their debut in public, the worst place.
     But they didn't come out.
     The music wasn't too much; it was just enough.
     I stopped wanting my sisters to walk me to the counter and say the words for me, in their strong voices and instead found my own, ready to speak.
     It was finally my turn.

Saturday, February 6, 2016

Wait Until Dark

     It was the one movie we all watched together every year, in the dark...on the floor, because it was so scary.
     There was even a part where my mom jumped and squealed, which didn't usually happen when we watched T.V.
     I was little, five maybe, and that big city fascinated me.
     It was scary, too, because it was so different from where I lived.
     The woman was beautiful but not in the same way as my mother. She was more like Marie across the street. They dressed the same, too.
     The movie scared me in a different way than it did my mother. She thought the bad guys were scary, but I didn't, not really.
     I was scared the moment I realized the lady was blind.
     How could she walk around like that, all alone in New York, looking so calm and pretty the whole time, like it didn't really bother her at all that she couldn't see?
     I couldn't take my eyes off her long enough to even be scared of the dead lady hanging in the plastic bag on the door. All I kept thinking was, "How did she do it? How was she not afraid all the time?"
     My mother talked to me during the movie, and that made it more fun. The more she talked, the less afraid I was. She explained the ways the blind lady outsmarted the bad guys, noticing little things they didn't because they were too busy seeing and being mean.
     By the end of the movie, she was the coolest woman on earth, and I wasn't so scared of that kind of darkness.
     It was almost as if she had special powers, but I knew she didn't because my mother explained that, too. All through the movie, she showed me how the blind lady saw things no one else could by using the rest of her senses more.
     To my five-year-old eyes, it was obvious she was using something else more than the others, too:  her brain.