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.

Tuesday, January 26, 2016

The best Coach

     "All behavior is learned," she said.
     Inside, I cringed.
     Outside, I didn't say anything. It hurt...a lot..but I held it in.

     "Who taught me to have seizures?" I wanted to ask.
     "Who taught me to drive into a house?" I wanted to ask.
     "Who taught me to DO THIS THING THAT I CAN'T CONTROL?!!" I wanted to scream, but I didn't. I held it in.
       (Most of them didn't know about this thing, btw.)
      I put on my mask and pretended to agree with her.
      She wasn't hitting all the right notes, but I liked her tune, and so did the children. They danced to it, the way they were supposed to, usually.

     "We're all here for a paycheck," she continued, "It's the same with our students. Give them something to work for!"
     "But I'm not here for a paycheck," I said to myself.
     If that had come out of my mouth, I would've fit in even less than I already did.
     They weren't there for the paychecks, either, not really.
     They cared too much about "getting it right" to only be there for the paychecks. It didn't make sense, that part of her argument.
     They cared about the children, especially my little misfits. I could tell.
     Why else would they listen to someone half their age telling them how to do their jobs better?
     They listened so closely to her because they wanted to understand our secret ways of getting the children to behave themselves in class. They saw it working for us and wanted to learn how to do it, too.
     Coach was there to show them the way, and this reporter kept her mouth shut so she could.

Monday, January 25, 2016

Take your pill

At first,
I thought he had a speech impediment,
but I was wrong.
He didn't have anything,
not really,
except a label.
It helped him fit in,
caught him up,
they said.
But it made him stand out,
too.
He wanted to stay in,
all the time.
He did fit in,
almost all the time.

When someone said,
"Isn't it time to take your pill?"
he didn't fit in.
If it really was time, he left,
and went to the nurse.
If it was a rhetorical question,
he didn't say anything
at all.

It was an accent,
not an impediment,
that faded away
along with his label
years before
he walked that stage
before my smiling
eyes.

Magic

Don't hang up our jackets.
 pick up our pencils,
 tie our shoelaces,
 wipe our faces. or
 pull up our pants.
Instead,
Say, "Good Job!"
after we
do it for ourselves.
Don't grab,
 chase or
 threaten.
Instead,
Catch us being good.
It happens all the time...
just look up
and notice!
Smile at us,
for not stimming or scripting or whatever it is we do
that makes you so uncomfortable.
It works.
You don't hafta believe me
to try it.
Instead of noticing
every little squeak
and flap,
You could notice
every little pause
in the action.
Try it,
for a class or two
and see what happens.
Maybe you, too, can do magic,
like me.

Saturday, January 23, 2016

Inclusion

She looked up with desperate eyes,
wanting me to stop a behavior
neither of us understood.

Her eyes belonged on the teacher,
His stayed down,
reading books,
but also paying
close attention
to everything
else.

"Make him stop, please!"
That nervous glance,
first at me,
then his hands
down in his lap
under his desk.

No, he wasn't doing that.
He was flapping,
and it made her nervous.

He could learn this way,
but she couldn't, not as well.
I went to the coach for answers.

If we try to make him stop,
he'll start doing something else,
Coach said.
Show him
a different place
to put his hands so it won't be
a distraction.

It made sense.

The girl felt better
when she could see his hands,
because then she knew he wasn't doing
that.

You can still move your hands,
I told him, but not underneath your desk.
You're in sixth grade now, and we need another plan, I said.
He understood and started trying, right then, to change.

It's okay to do it in the open, I said,
as long as you keep your hands here,
by your sides.

They tried to return to the safe place,
under his desk,
again and again,
but he caught them along the way
and sent them on a different path.

There were lots of reminders at first,
but not out loud.
"You're doing it, again," I said,
every time I passed by his desk too closely
during social studies.

"You're doing it, again," I said,
with my eyes..across the classroom.

That was enough.
It was that easy.
Soon, his hands were openly flapping
by his sides
in social studies class
instead of hiding under his desk
the way they had
for years
and
Her eyes no longer slipped over
to mine
because she was
listening to the teacher.

Lift-Off

He's going to stand out no matter where he goes because
he's so beautiful.
The glasses throw you off at first,
you know there's a problem
but you can't quite figure out
what it is.

You want to reach out and touch him,
especially his hair.

You stare,
catch yourself doing it,
and look away.
But then, you look back again,
for a quick glimpse to
see if he's real.

It's okay,
he's used to it by now,
seems to like the attention,
especially when girls
are giving it.

He walks right over to chat,
tells them about his favorite Disney movie.
He knows all dialogue,
delivers every line the same way
it's said in the movie.

They giggle
and talk about how cute he is.


You can touch him,
but don't grab, not ever,
or his mom will know,
and she'll get you
for messing with her little boy.

She'll know because his skin
is magical.
It's the tattletale.
His mother will find
your print.

Then he will tell her
exactly
how it happened.
He's different,
but he isn't silent,
not his mouth, and definitely
not his skin.

She may hear the story
in a jumbled mixture of  Disney plots,
but she will hear it.

I saw him try to outrun
his teacher and principal one morning.
He was picking up speed,
the silky hair flying,
when they came up on each side and scooped him up,
under his elbows.

It looked sorta fun, like they were teaching him to fly
and this was the take-off.
Three giant steps and he was back in his classroom.
They made it look easy.

I wanted to be able to do that, too.
So, I went back to school
to learn how.

Tuesday, January 19, 2016

Grease is the word...

     She loved Grease.
     It radiated from her when she listened to it on her headphones....Love.
     You could see her imagining to be Sandy, or I could, when I watched her listening. She was in another world, the way I used to be, when I listened to those songs...a world where she can decide which Pink Lady to be.
     So many choices are made for her.
     I always picked Sandy, but for all I know, she could've been attending Rydell as Frenchy or Rizzo or even Kenickie, I guess.
     But something tells me she was Sandy. That's the name I hear her saying in my head.
     "Sandy!"
    Grease was an escape from all the demands placed on her. and oh, how it took her away.
    It took me away, too, the intensity of her joy.
    I could see the feelings wash over her note by note because she didn't try to hide them like the rest of us do.
    It just happened, and she let it.
    So, in this way, her breaks became my breaks, too.
    I could hear the music leaking out, she played it so loud.
    She must've realized early on that, like her, I knew all the words, even though we didn't sing together. I sang them with her in my head, going back in time to middle school...late nights, dancing with my friends, trying to figure things out before it was our turn for real.
    It was easy to see who her Danny was because she did little things throughout the day to get his attention, like knocking his toothbrush into the sink...nobody else's, just his.
     When it tipped over and got all germy, her efforts were rewarded by the thrill of hearing his frustrated little squeal.
    It made her giggle. Me too, but not out loud.
    She was always up to something, barging into his quiet with her music and mess, and his eyes were always slipping her way, waiting...
     I felt like a voyeur, seeing something I shouldn't, but unable to look away.
     I wasn't remembering my middle school years any longer, nor was I seeing the bouncing ponytail of Olivia Newton-John.
     There was a more spectacular show going on around me with an updated cast of characters.
     My quiet boy, who spent so much time in a world I couldn't enter, came out of it to be in hers.
     Danny loved Sandy, too, and I think she knew it.

Monday, January 18, 2016

The Substitute

He doesn't want me following him around.
He wants his old teacher back and lets me know by
asking for him every morning
when I'm there
instead.
He's looks down at me,
disgusted,
like an old man being forced
to take medicine
and begins to walk
so fast I'm taking giant steps
to keep up.
He prefers to keep me several steps  behind
but slows down when
she comes by.

We are safer together,
bunched up.
She's going to pick on us.
It's the same every time.

"Look at me!"
"Look me in the eye."
"Stop walking on your toes. Stand up straight."

That's our daily greeting,
not "Good Morning. How are you today?"

He does it, though.
No complaints.
He looks her in the eye,
and they go through the routine until finally,
she's gone.

Then, he's back on his toes
and the space between us widens
again.

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?



Sunday, January 17, 2016

Nonverbal

It's cold and there's nobody on the playground but us.
He's little but strong,
a bundle of muscles and brown curls
that never stops moving
Running toward, not away.

Others run from him,
but I follow...not too closely.

I could take my time if I wanted
because I know
where he's going.
It feels like he's mine sometimes
because I know
him so well.

He grabs things
from people,
and they let him
because
They're afraid
of what he'll do
if he doesn't
get his way.

They get embarrassed,
not hurt,
by the things he does.
They want to look away.

No one wants to be there when it happens
because it isn't pretty to watch,
but I can sit there with him until it's over.

The crackers make him "worse,"
his doctors think.
So his parents
and teachers
and little friends in class
try to teach him
not to grab for Goldfish
and to be happy
with something else
instead.

His snack is different,
weird-smelling and greasy,
like pork rinds.
Nobody grabs for those,
ever.

I watch his eyes, looking for something that will tell me
how to help.

I see joy when he's in the air
on the swing
or in the arms of the teacher
who lifts him up
like a dad.

They are fierce when he colors
on the page
so hard that he squishes the crayon
through the paper onto the table
underneath.

His eyes have another look I know quite well
but try not to see when I think of him.

They are the eyes of a little boy
who wants to play
but is afraid
he'll do something
to scare everyone
away again.

I can't think about
those eyes for
very
long.
It hurts too much
because I know
what those eyes
see.

They see too much.

So instead,
I remember him
running for the swings,
across an empty playground
ready to take off
and fly.


Saturday, January 16, 2016

Happy Face

He could tell
before anyone
else
Almost as if
He knew
the moment
I stepped into
the classroom
that I was in
a funk.

He could
feel my bad
morning
around
me.

"Happy face?"
That's what he asked
to make sure we were okay
every morning.
It was his version of,
Hello, how are you?

He was worried about me,
I could tell
without him saying
another word,
but he did it,
anyway,
just for me.

He said two,
of course.

"Happy face?"

He needed to see
it to feel safe.

And besides,
If I didn't put it on,
Someone
besides
us
would notice
it was missing.

I had to find it
for my sake
and for his.

He waited, pleading
with  dark eyes.

I paused, pleading back,
with dark eyes.

Give me a second.
Or two.
I need it.

He hesitated, and
It was long enough
for me to find
my Happy Face.
I said it back,
and we were
both
okay
together.


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.