Aphasia

Aphasia Feb 2021

For you

Sometimes this world is a little too big,
Sometimes the day is a little too long,
Sometimes the room is a little too loud,
Sometimes the words are a little too wrong.

Today all the walls were a little too small,
Today when you said you were scared to go home.
Today when you could have just buckled and fell,
Today when you said that you'd face it alone.

Tonight will be phone calls.
Tonight will be protective services.
Tonight will be investigations into the people who are supposed to love you and keep you safe.

Today you are 18.

Maybe tomorrow will be sunny.

#disability #abuse

Aphasia Feb 2021

This Morning

"Everybody get down!"

Those were the words that started my day.
Running feet, closed lights, locked doors.
Don't panic. Don't panic.
Silenced phones and shaking hands.
Whispered assurances in a darkened closet.

Not a drill.

All is still.

A false alarm.

Aphasia Feb 2021

Hope

Hope is a thing with feathers--
TOO many feathers.
That flutter and flap inside me,
Threatening to expose
My crippling fear
That things may just get better.

I'm scared to hope, and scared not to.

Aphasia Jan 2021

"You are Strong, and You are Healthy"

I live in split reality
Unreconciled duality
I feel my mind and body split
I'm one part healthy, one part sick.

I struggle with my different roles
The things I can and can't control.
To be so alive, and still aware
I may never live a life without fear.

The doctors have no easy say
I take each moment as today
And wait with anxious, twisting hands
For someone to say they understand.

Another day, another doctors appointment. I struggle so much with how huge my health is as a part of my life and my personal identity, but so many people who know me have no idea about my health situation. I'm lucky to have such good quality of life despite what I've experienced, but I struggle with this duality in my self-perception of seeing myself as strong and capable, but also as chronically ill.

Aphasia Jan 2021

Special Child

'How can I love him?'
She asks me--
Not for the first time.

Like I'm the patron saint of
Unlovable children,
Having embraced my place
as the central fulcrum
of Autism Wonderland.

She shows me a picture
and my heart swells and breaks
for the that little boy
Lost in his own little world.
His birthday bliss,
As, slowly reaching for milestones,
He doesn't know he's missed
reaching
The hearts of family
Who are supposed to love
Unconditionally.

'You know I'm not like that,'
She tells me,
Asking not to judge,
To accept her wholly,
The way she can't
Accept him.

Children and adults with down syndrome have as much love and light to share as every other human. We need only be receptive to it.

Aphasia Jan 2021

The day after

It hurts
The pain echoes through my skull
Bouncing around like a ****** rubber ball
Bang
Bang
Bang
I want to feel better
I want to feel normal
And all the regular things from yesterday
Feel so, so far away
Like nothing will return to how it was
And the fear will linger forever

Migraine is not a headache. I don't know if I can see now, and my entire body is worn out. There is so much pain and fear and uncertainty.

#migraine #pain #headache #aura

Aphasia Dec 2020

"I've missed you"

What a strange way to tell me
That I haven't been myself lately.
I wonder how much earlier
You noticed
Than I did.

Thank you for waiting,
Not knowing when I'd be back.

Sometimes it's hard for me to catch myself withdrawing until all of a sudden I realize that I haven't slept normally in a month and my phone conversation with friends are quiet and one-sided. When I finally start taking care of myself again, I wonder how much earlier they noticed the decline.