Tag Archives: autism

Plea of the Holy Fool (circa 2003)

Posted on by under poetry

Help me O Lord
For I am surrounded by friends
Who seem as bad as enemies
Save me O Lord
From the twin demons
Of pride and self-hatred
They both magnify me
And place me above you
The worship from the hypocrites
Who wish to turn me
From village idiot to holy fool
Is no less a sacrilege
Than the hate from those
Who view me as empty and worthless
But it is more treacherous
Because it comes in the guise of friendship
I have loved you and will praise you
With every piece of my soul that I can muster
Help me to turn towards you
And away from lies

Outlines and Mirrors and Turning Away

Posted on by under poetry
I am reading
And the words go into my eyes
Into my brain
And I am connecting
Again and again
With a man I’ll never meet
Who doesn’t know I exist
But who is connecting with me
All the same
 
He is one of the rare ones
Who writes with his eyes
Into restless souls
And understands things
That he’ll never say
 
And when he turns the corner
With his mind
To avoid having to explain
I can see the outlines
Of where his words don’t go
The places his mind
Evades and avoids
And it’s as much a communication
As if he’d said it out loud
 
Is it wrong
To be grateful
For his suffering
Because it mirrors my own?
 
Maybe that does make me
A selfish monster after all
Far more than being unable
To cry
 
Or maybe we are all
Selfish monsters
Some of the time
And only believe otherwise
Because nobody is saying it
Out loud
 
And when I try to find the words
To say what’s in my heart
My mind turns away
Just like his
So as not to betray
 
If you want to really know me
Look for what I will not say
Even to say this much
Feels like handing the keys away
Handing keys to strangers
In a dangerous world
 
Well no matter
Because you need more than keys
To understand what you see
When you unlock the mind
Of a person
Like you, or like me
 
You can peer all you want
At the silhouettes formed
By my retreating thoughts
But if you come here with malice
Even just a trace
You will never understand
What’s staring you in the face
You’ll get twisted and turned
Around and around
Until you find yourself outdoors again
Dumped on the ground
 
If you come here as a friend
Then the key is all you need
Come in, you’re welcome
Let’s all plant the seed
For a tree of protection
To grow in this place
So that none of us need worry
About malicious strangers
With keys and with greed
 
You can drink the water
From the well in the ground
I will join you in a moment
And without a sound
We will look past the barriers
Look past the pain
And burrow a tunnel
To keep out the rain
 
Then you and I
Can be the kind of friends
Where the learning
And the sharing
And the joy
Never ends
 
I can feel you right now
Over thousands of miles
Hoping all the while
That there’s someone
On the other side of time
Crossing that line
Without leaving a sign
 
There are billions of people
And millions of years
And somehow we connect
In an underground village
Without fear
Without shame
Without disbelief
Though we shake like a leaf
At the wonder
 
The shadows we cast
Are taller than trees
But the light that creates them
Is brighter than anything
We can stand to see
One day we’ll meet again
Inside of that light
And there we’ll uncover
The end to all fright
 
But until then we live
In our burrow underground
And talk to each other
Without making a sound
 
And I’m no longer alone
No longer in pain
No longer imprisoned
Inside of my brain
 
I wrote my way out
I wrote my way to you
You wrote your way to me
And our life begins again:
 
Unfettered
Enriched
Unlocked
Alive
Anew

High School English Teacher Meets Xanadu

Posted on by under poetry, poetry about poetry
In Xanadu did Kubla Khan
A stately pleasure-some decree
Where Alph, the sacred river, ran
Through caverns measureless to msn
Down to a sunless sea (1)

I asked a high school teacher

If we would study this poem
Along with other poems by Coleridge

Immediately —
“No.
It’s an opium dream
It has no underlying meaning.”

And that was that
I was unprepared for his response
So I could neither process the language quickly
Nor come up with an original reply
With or without words

He thought the knowledge was so obvious
It needed no explaining
If it needed no explaining, then
Why do I remember the conversation
Twenty years later?
A memory of a school
I spent all of three months at
And remember little of the outer world
Only my inner experiences?
Why would my brain pick that
Out of the daily low level bullying by teachers
To remember?

Where Alph, the sacred river, ran

Through caverns measureless to man
Down to the sunless sea (1)
I don’t have to go to Xanadu to find
Caverns measureless to man
I can find them in my mind
Those caverns hold sensory memories
That I have no conscious access to
But inform everything I do
I’m certain my father had the caverns too
But they were scattered on the winds when he died

I am no expert
In the interpretation of poetry
But there is an intense longing there
For a world that cannot be

And if I can wonder these things at thirteen
While a middle-aged teacher mocks me
For even having the thoughts
“It’s meaningless because I can’t
Personally find the meaning!”
Then what is the real problem here?

For I now have the longing
To explore the caverns in my father’s mind
As intense as any desire of a poet
To catch up with a beautiful dream left behind

If not more so
Because his caverns were imaginary
And my father’s unimaginably real
I know they’re real
I have them myself

The poem is about longing
For something gone that can
Never be replaced
And my father is dead and can never be replaced

Good enough,
Mr. Smart Ass English Teacher?
Oh well
My dad never got along
with English teachers either.
And even opium dreams
Can have meaning.

What’s that – you fear me
Because I’m from your future?

Because time ain’t supposed to
Work that way
And I’m fixin’ to tell you you’re wrong

What are all these books you teach

If not time travel portals into the eyes
Of future women, men, and other adults?
Boys, girls, and other children?
You think they wrote the book of Ecclesiastes
So only one generation of literate people
Could read it?
No, they wrote it for posterity

And it’s not the only one
The Epic of Gilgamesh
The Pyramid Texts
The Book of Going Forth By Day
The Shewings of Julian of Norwich
The Dark Night of the Soul

The Poetic and Prose Eddas
These things all had meaning
That stood the test of time
So I am time-traveling as much as any poet
Back to you, Mr. English Teacher
(I have forgotten your name.)
To tell you
What you never bothered to figure out
Because you were too preoccupied
With your desire to be a coach
Rather than a teacher
(Why are there always those
Among English and math teachers,
Who wish, and act as if, they are
Coaching football or something?)
I know now why I had the attachment
To Kubla Khan
Because I could identify with the longing
I could identify with the caverns
And identifying with things
Is both the magic and the horror
Of adolescence
Sensitive teachers know that
You were as insensitive as a brick wall
And I know that there was another layer
To what you were telling me
I’d heard the rumors passed around
By students and teachers alike
That I was a drug user
(I wasn’t, not yet
I became one
Because of the rumors though.)
You were also saying
“You are a worthless drug user.”
You just said it less directly
Than the teachers who were willing
To say it outright
A damsel with a dulcimer
In a vision once I saw:
It was an Abyssinian maid,
And on her dulcimer she played,
Singing of Mount Abora.
Could I revive within me
Her symphony and song,
To such a deep delight ‘twould win me,
That with music loud and long,
I would build that dome in air,
That sunny dome! those caves of ice! (1)
 
What child with communication problems
Could not identify with these lines?
I had such a yearning
To tell people so many things
That were inside me
And no means to get more than
A tiny fraction
To come out in words
Usually, at that age, poetry
Many autistic children
Find their first true communication (2)
In writing lists of words
Or echoing music
Or writing poetry
And we identify with
The universal struggles of poets
To write about that
Which can’t be put into words
If you couldn’t imagine
That there were layers of meaning
In a poem by a famous poet
Of all things
Then you never deserved
A job teaching students about poetry

Continue reading →

My Last Refuge

Posted on by under poetry

Dedicated to Ernest, Blanca, Vanesa, and David.  I hope you all made it out of institutions one day, and that you’re alive, and maybe even happy.

I hid my awareness from you
Because I knew if I gave a response
You’d abuse me more.

I hid my awareness from you
Because I’d seen what happened
To those who came before

I hid my awareness from you
Because restraint is known to be the worst
Physical trauma for an autistic child

I hid my awareness from you
Because I feared looking into your eyes
Inches from my face, so I stared through you

I hid my awareness from you

Because my mind was the only refuge I had
That you had not yet stolen from me
By tackling me to the ground and sitting on me
For the sin of not moving when told
Yes, my mind was still my refuge
And whatever it took
Whatever it took
I was not about to let you in

So you put your eyes as close to my face as you could
And you tried to force me to look into them
I looked through them
I pretended you weren’t there
I pretended I existed in a different world
A better world

A world where children weren’t strapped down at night
So that the night nurse didn’t have to bother with them
A world where people who showed fluctuations in their abilities
Were not accused of manipulating staff
A world where people whose entire bodies resisted invasion
Were not invaded anyway and then blamed for the results
A world where a tiny little autistic boy didn’t run into my room
Every night, silently pleading me to make the staff go away
So he wouldn’t be tied down for the night
A world where I didn’t have to listen
To what staff really thought of us
Since they gossiped in detail about patients
Right next to the isolation rooms

You got right in my face
So close to my face that one adult doing it to another adult
Would be seen as an act of aggression, even assault
And you demanded that I join your world
Demanded that I at least acknowledge your world
I refused

And the more you tried to force me to join your world
The more determined I was to get away

You called this manipulative
I called it survival
The first of many definitions
We would never agree on

The White Institution (circa 2002)

Posted on by under old, poetry

I walked down the street
With my eyes on the building of white
I knew they were like me
Autistic and trained not to fight 

They rocked behind bars and
I knew I belonged there not here
Not out on the streets
With the ones who had never known fear

My body moved forward 
To ocean with sand and with stars
But my thoughts, they went back
To the white institution with bars 

As slugs we might be
But the world it had fashioned a shell
Not home anymore
Not here, not on earth, but in hell

[Events 1999, first written circa 2002, written from memory 2014, May contain errors.]

Opals and Oyster Shells

Posted on by under poetry, Writing prompts

A stranger handed her a necklace on the street
He said “I know what you are, and I know you’ll be angry with me.
But meet us in the library tomorrow at half past three
And you’ll get the answers you know in your heart you seek.”

And then he turned and walked away, abruptly as he came
And she was left so shaken she couldn’t remember her own name
For the necklace was a pendant made of opals and oyster shells
And she dared for just one moment to believe it could get her out of hell

Because hell was this world, that as a child she had just called More
Because it was More than she imagined could have existed before
Before, you didn’t imagine, you didn’t hope, you didn’t plan
You just swam in the colors and wallered in the iridescent land

And Before was so easy
And More was so hard
But there was no going back
Once they bombarded her cranium with words
She could never throw them back
So she learned to adapt
She learned to accept
That her rescuers were praised
They’d pulled her out of heaven
And into hell
But everyone was amazed
They’d taught her to speak
To read and to write
To get along with other kids
And that was all that mattered
She was just an object in their personal dramas
So she learned to live how they wanted her to live

But now she was grown
Standing in the street
Necklace in hand
And every hair on her body stood up
And she turned
And she ran

On automatic pilot she ran to the sea
She knelt down in the sand
She opened up her hand
And saw opals and oyster shells
She put the necklace on
And she cried burning tears
Of rage and desire and self-pity and shame
But most of all they were tears of loss

It had been twenty years
Since her forced exile
From the only place she’d ever felt at home
She’d tried every way she knew to get back
But the damage was already done
Once they’d given her
More words
More thoughts
More contemplation
More More
There was no going back to Before

Oh she was a success for them
She went to a mainstream school
Nobody knew of her past
Though the kids treated her like a fool
But being odd was no problem —
For the ones who rescued her
It was enough that she could talk and read

So she grew up
Got a job
Dated men
Lived on her own
Surely it didn’t matter much
If her heart turned to stone

So she stared at the oyster shell
And remembered that world like a dream
Where you didn’t need to know you existed
You just floated from scene to scene
And the colors in the opal
Brought back memories of light
Of dancing and swimming and wallering
In rainbows cast by sunlight
The oyster shell reminded her
Of the underwater ocean feel of Before
And the smooth pearly light
She had felt such delight
Until the outsiders dragged her into More

In her mind anyone seeing the necklace
Would see right through her
And the lies and broken promises of More
So she wore it under her shirt so nobody would see
But she also showed up at the library
Next day at half past three

The first person she saw
Was a wisp of a woman all in grey
Tiny and slender with black curly hair
Body dancing to a rhythm
That made her look not all there
But she recognized the rhythm
And almost bolted out the door
For the rhythms this woman danced to
Were familiar from Before,

Instead of running she stood in the doorway
Shaking from head to toe
The man from yesterday took her hand
And whispered in her ear “I know.
Some of us are still mostly Before
Some of us are mostly More
And some of us go back and forth
Like a revolving door.
It’s scary at first to see people
From your own private world
But most of us have similar stories
And it’s not so private anymore.”

She allowed him to lead her to a seat
Still shaking like a leaf
The whole floor shook, she shook so hard
And she couldn’t quite believe
But each one had something —
Their eyes
Their hands
Their movements
That gave them away
And that made her feel
Cautiously welcomed
So she came back every day

She learned that most of them
Had been pulled out from Before to More
Though a few — it seemed the happier ones —
Had simply outgrown Before
A smaller number had never really left
And kept one foot firmly in Before

She bitterly envied the last ones
She’d spent so long trying to get back
They made it look effortless
She could only feel her own lack
And yet it was they
Who welcomed her most
Who wanted to find her way home

It was one of them who made the necklace
Of opals and oyster shells
Sensing that it would best remind her
Of where she’d been

It was one of them who listened all night
To her tales of being pulled into More
Of the terrifying moment
When language appeared and locked the door

The opals and oyster shells
Felt like a bridge to Before
Not a bridge she could fully cross
But she could stand on it
And swim in an ocean of sensation, without thought
And now that there were others like her
She could see how lucky she’d got
To feel the currents of Before overtake her
For the briefest moment’s glance
It made her feel that
Maybe
She had a chance

[This is a true story. It’s not my story. But it’s the story of too many people I’ve known. It was written in response to a writing prompt from fullyarticulatedgoldskeleton: the words opals and oyster shells.]

When Daylight Is Chaos

Posted on by under poetry

Intricate stained glass
Shatters into thousands of pieces
Every time I open my eyes
The shards press into my skin
And this is how the day begins
Every time I open my eyes
Webs of gossamer lace with
Impossibly small rainbow dewdrops
Tear and twist into pieces
Too delicate to survive
Every time I open my eyes

And the stained glass
Tears my skin to ribbons
And the lace webs
Fly into my eyes
And the chaos that is daylight
Overflows into my brain
Until all I know is pain
Every time I open my eyes

I want to take my hands
And pick up the shards of stained glass
Unwrap the gossamer webs
And slow, delicate, careful, gentle
Put everything back the way it was
Before I opened my eyes

But the chaos that is daylight
Has overflowed my brain
And all I know is pain
I try to find my hands
But they are flying through the air
Flapping in the wind
Fluttering with a grace I can’t feel
Outside my control anyway
The rest of my body’s the same
My bones are absorbing the chaos
That entered my brain
The moment I opened my eyes

Twilight slowly forms around me
And I can almost feel free
Free of the shackles that bound me
When the sunlight was all I could see

And when the night finally dawns
I dare to look around
At the remnant shattered pieces
Scattered all across the ground

My hands only flutter a little
As I reach out to the shards
Just enough to keep reminding me
They’re here
And I feel my way across the floor
Until I’ve gathered
Every piece
So clear

It’s winter so there’s plenty of night
That’s how I console myself
It’s winter so there’s plenty of time
To fix all that went wrong
It’s winter and the days get short
With every passing day
And my hands flutter round the shards
To remind me it’ll be okay

I spend all night putting the pieices
Back together, one by one
Not exactly how they started
But a new pattern, just begun
I fill the cracks with gossamer
And look on it with awe
For in the night I can see
And I’m transfixed by what I saw

Even at night I see only the parts
But at night so much chaos is gone
My joints still ache from the thrashing
And my skin burns from the light of the sun

And this is not an idle time
It’s not a time of rest

It’s when I pick up the pieces
And I put them back together
One by one, and painfully slow
Painfully slow because
That’s where the pain all goes

My shredded burning skin
And the joints that rattled in chaos within
These things take time and rest
And I have neither

I hear a high-pitched keening sound
It seems to come from all around
My body curls into a ball
And images flash so rapidly
It’s like being there, body and all
Then I wake up
Curled up
Stiff as a board propped up
Drool covers my face and bed
But there is less chaos
It’s gone from my head

Instead there is silence
Like a deep watery pool
That has never been seen or touched
It’s silver like the moon
And as I lean over it
A feeling as if it is deep enough
To go on forever
And familiar enough
As if I’d seen it every day
Since before I was born

The silence is singing
Its own silent song
More beautiful than any
I have heard with my ears

It sings:

Darkness has a shape
And silence has a voice,
And if you reach down inside
You’ll find both
There are wordless words
And silent voices
And dark shapes
And endless silver pools

And it’s all so familiar
Because everyone has this
Deep down inside
Since before you were born

Before you were born
There was room for eternity
And when you were young
You could play at Her feet
Like that big redwood tree
Near the first house you’d ever seen
It positively shone with familiarity

Now child
Let me renew you
I am the voice of the night
I am the darkness taken form
And the other face of light

And She dipped Her ladle
Into the silver water
Said “Drink when you’re able
My child or son or daughter
This will renew you
From the damage of the day
And it’s here every night
Every night”

My hands fluttered again
But this time with glee
With the realization
That at night I am free

At night I am free
As I’m not in the day
The dark and the silence
Renew me

I took a walk outside
And everything was still
Save a few owls overhead
So I climbed up the hill
I saw the silver moonlight
Reflected on the lake
And the sight was so familiar
It made my heart ache

There is love in the darkness
That heals the chaos of the daytime’s light
There are secrets in this world
That can only be found in the dead of the night
There are people like you
For whom daylight can mean nothing but pain
And you’re welcome to find me
Night after night, again and again