It started with a nap.
The monster of a headache that had plagued me for three days
with no subsiding
no matter what I did
had consumed me.
This monster bore another monster,
than the pounding headache.
Later on, and for the next three years of my life,
I would be battling this beast.
“Something’s happened to my sister!….
I don’t know! …
I don’t know!”
Was that a crash?
Were those lights?
Why couldn’t I breathe?
“She’s having a seizure, Grandpa.”
“Yeah, right…you let me know when it’s a real one.”
Cameras clicking and I am taken again.
“Why does your friend keep staring at my boyfriend?”
The long and drawn out
“O-o-o-k-a–a-y” that is still tainted
with annoyance and anger
when I hear a friend trying to explain
what an absence seizure is.
“Is that a seizure?”
I’m screaming inside to tell them yes.
These police officers.
Designed to help.
Designed to protect.
Designed to believe that
I’m drunk or on drugs.
Waking up in a hospital.
Strapped to a bed.
Bruises everywhere and I am told
that I struggled.
A nurse tells me the truth with tears in her eyes.
“I know you have Epilepsy because my daughter has Epilepsy.”
Friends and family who are well aware of my condition lie
(and I’ll never know why)
and tell the staff they don’t know what’s wrong with me.
No matter how hard I try to explain,
their fluorescent lights,
and the high stress of being questioned
over and over
about which drug I took to do this to me
causes me to seize.
Again and again.
It takes days for them to realize that the answer is
that they made a mistake.
I hear nurses whispering about it.
“That poor girl doesn’t belong here.”
I wonder where I do belong.
Thunder and lightning rumbling.
But I can’t tell if it’s real or not.
I hear beeps.
I tried many of the doctors’ treatments.
To a T.
Taking meds on time and in proper doses.
“With time, these meds will build up. You’ll see. You won’t have seizures anymore.”
“These meds are making her worse.”
“I’m sorry…you’re just too sensitive even to the smallest dose of the medicines.”
“We’re sorry…so sorry…so, so sorry…”
I’m sorry too.
I’m still saying sorry after every seizure.
Because I’m a burden.
A burden with a burden.
Hands are touching me.
Don’t they know they aren’t supposed to be touching me?
“Stop! I think you’re hurting her!”
Sometimes I know the voices and sometimes
I can’t remember if I do or not.
“Are you here? Are you with me?”
I hear that way too much.
And when I am there
and with them
they often talk amongst themselves
as if I’m not.
“Oh, she didn’t know what was going on
because she was twitching.”
Happy moments do exist:
When I am splashing
When I hear a good song
and sing along.
When I am laughing
or eating a delicious meal.
When I see a movie
that makes me cry.
When someone tells me
they understand and
I know they do.
When people hug me
with smiles on their faces
and not with pity
in their eyes.
When I can write.
When I can read.
When it’s cool
and I see
a shooting star.
I keep going.
When the monster is
in the background
to strike me down again.
These are still reasons
I am glad to be alive.
Because I often imagine
that one day
it may just end
with a nap.
And then the pretty dreams
that I have quite often
that I cling tight to
even on the darkest
of days and nights
will come true.
Forever and ever.
And the beast will have nowhere
else in me to go.
Epilepsy will move on.
Not just for me.
But for all of us who know it.
That hope is always enough for me.
© Jennifer Patino (2012)