zmmiller: February 2010

Saw this on the Age Of Autism blog and thought it did quite a nice job of capturing some of the many conflicting emotions that autism creates in a family - fair warning though, grab a Kleenex!

By Rachel LaViola:

Casually spread
over striped sheets and throw pillows
purple, blue, red
I lie on my bed
phone by my head
chatting away with an old friend
one of those routine correspondences–
monthly
ok, bi-monthly
ok, I should call her more often.
–nothing too circumstantial
simple and pleasant,
but insubstantial
How’s life?
How’s school?
Got a boyfriend?
Remember when?

Years of shared experiences
Compressed like books between bookends
Cuz time doesn’t just “pass”
No,
Time definitely stacks
Condensing years into angular spaces
As others accumulate in adjacent places.

Say hi to the family!
Oh by the way,
heard about your brother…
I’ve got a cousin twice removed…
same deal…
I get it.

And as her words reach my end of the wire,
a silent diatribe from within me transpires
A bull is released into a china shop
Wild and rampant, cannot be stopped
You think you get it?
You think you can relate?
To this,
this the all-encompassing disorder
all of it over a simple
short
circuit in cognition
Wait–
are you, a physician?
Cuz when it comes to this condition
You’re gonna need my permission to talk
There’s a pecking order
And I’m at the top my friend
So let me tell you
You don’t “get it”
You’ll never get it
Don’t try to get it

Every particle
Every cell
Every element of my being
Instantly ignited,
Yelling and screaming
I burn internally,
a Kernel, you see,
Ready to pop
Pop
Pop
Combust?

No.

I don’t actually articulate this tirade,
Hold your breath, erect your blockade
Cold as thick-ribbed ice, a fine fine charade
Cuz inside I’m scorching, I’m teeming with flame
And the chip on my shoulder
Heavy as stone
Heavy as boulder
Expands and doesn’t falter
Now the size of the Rock of Gibraltar
Or some large and ponderous mass
That could be thrown off
Could be hurled
But I am Me Against the World
And in a twisted, strange way,
I want this burden
I want to bear it
Who are you, to think you could share it?

The years of collective memories instantly shrank
All our commonalities, to me, seemed so insignificant in the wake
Of the this gaping aperture between us
Vast and chasmal
An acutely apparent disconnection
A simple phone conversation takes an errant direction
No fault of her own though
Indeed, I had positioned it
Placing it there when I soundlessly commissioned
her silence
Dismissed her with intractable defiance
And so, I detached and disengaged
Behind an impenetrable fortress of resentment
Where I was alone and isolated
But the isolation– I cherished it
Even as it wreaked sad sad havoc on my insides
And broadened a steadily gaping divide
Between my world and the outside

That was how I coped with having an autistic brother
That was how I had always coped
Ever since the day that he was diagnosed
And the grim, grim, ghastly and ghoulish ghost
of god-awful-truth
began haunting us with a terrifying proposition,
and turned out to be more then mere apparition
Forced to drop all our excuses in sorrowful submission
Forced to accept the reality of his condition,
In solemn recognition
He wasn’t just developmentally delayed,
a glitch that could be glossed over with time,
No, this wouldn’t just go away
We had to accept and consign
ourselves to the new trajectory our lives had taken
indeed, we were thrown into a domain forsaken
The autism becomes all-consuming
On a different trajectory your life begins moving
Like entering a Filliniesque place
a parallel plane
Where my normal, to others, seems sort of insane
The biting
The kicking
The banging
The screaming
Was it real?
Were we just dreaming?
So far removed from the lives of my friends
I didn’t think anyone could possibly comprehend
Or understand what it was like
the sadness
the pain
of trying so hard, and often in vain
to obtain
a simple word or a smile
a second of either would make it all worthwhile
Or what it was like to look into my brother
And see a soul
in a body that fails to respond to another

But rather than grieve
Rather than cry
I kept all of these feelings inside
Made it my burden
My own tragic affliction
I was Specially Chosen
to bear this condition
And it sort of eased the pain, the sadness, the gloom,
though a band aid solution,
it did well to disguise the wound

I assumed
no one else could get it
So I kept it behind me,
silhouetted
But underneath it all I was so irate
Angry at others for not being able to relate
Still, I never let anyone pass through my gate
And so, I constructed my own isolation and fate
By keeping myself apart and alone,
I had, ironically, created an autism of my own.