Haiku lullabies

It took me a long time to put this together, which is why I’m exactly a day late. But hopefully this can still go on the page for poetry for Blogging Against Disablism Day. Not all of this is tied to disability as obviously as some people might expect, but believe me that the ties are there. Sometimes if only because to have certain experiences, and to have a developmental or psychiatric disability, is to be pathologized for it from the moment anyone discovers them. There’s a lot of poems here, some of which you’ll have probably read before if you’ve read this blog, some of which you won’t have. And you’re welcome to read the rest of this blog. Before my father died in November, he said that reading this blog gave him a lot more idea of who I am than he’d had before that. If a number of the poems are about death, it’s because of dealing with his death — his impending death, and his actual death after the fact. But many of them tell of my own experiences coming close to death, which stem, again, from being disabled. Anyway, no more introduction, just read the poems if you’re going to read them, or don’t if you’re not.

Rainbow Eyes

Abalone shell and mother-of-pearl
Swirls of iridescent light fill my soul
Prisms dance rainbows through the room
If I stare through my hair into the light
More rainbows appear in each strand
Getting lost in rainbows, color, texture
Is all I thought my eyes were for

My Friend’s Dress

My friend had such a bad asthma attack
That they had to resuscitate her
She was still conscious as they took a knife
And expertly slit her dress down the middle
To gain quick access to her chest

It’s funny what we think of at times like this
And I know people would judge her as shallow
But you can’t control the mundane and strange
Thoughts that collide in your head unannounced
And unwanted, during a true emergency

I know of someone else who almost suffocated
She said her biggest reaction was not fear of death
It was annoyance at a body that refused to function
Annoyance that her lungs didn’t work
Annoyance at her airway for collapsing
Not fear, not anger, not guilt, just pure irritation

When they slit my friend’s dress down the middle
My friend wasn’t thinking about how close she was to death
Nor that they took the fastest route to save her
No, instead she was thinking:
I loved that dress, now I’ll never be able to wear it again

Being “Low-Functioning”

Being “low-functioning” meant
Being pushed around in a wheelchair
Like a bag of carrots in a shopping cart
And staff stopping to talk or gossip
Not giving my listening a second thought

“I didn’t sign up for this,” one of them said
“I feel violated, but I can’t tell the director
Because she’s the one who created this mess.”

“You mean the way we have to accept
Unsolicited hugs from strangers, just because
The strangers happen to be disabled?”

“Yes, that. It makes me uncomfortable.
It makes me feel physically violated, like
There’s nobody around to tell them to
Respect my boundaries.”

“It’s worse than that.
They actively want
To tear those boundaries down.”

“Yeah, the director gets an ego trip from
Being hugged by people with disabilities.
She thinks it means they all love her”

“You can tell some of the disabled people
Don’t want to hug her either.
They do it because it’s expected.
They do it because they don’t want
To get on her bad side.”

“They have every right to fear her bad side.
She can be downright cruel to people she
Doesn’t like
Not that she’d ever admit to
Disliking a disabled person
She just blames
The disabled person
Much safer to that ego of hers”

While I
The inert lump in the wheelchair
Heard it all

Gills

A river flows away from all the stones
That hold me on the ground beneath my feet
It carries in its current more unknowns
It holds me in its arms, and moves so fleet
So fleet that I can scarce come up for air
No chance to grab onto the wall of stone
I must allow the river now to bear
My flailing body far too weak to moan
I float away until I reach the sea
I have no means to keep my head afloat
The waves of feeling lash and flail at me
And I will drown, the water fills my throat
But all at once, I let the waves crash through
And gills appear where only lungs once grew

People Like Us

This is my people
This is the people who understand
When I can’t say hello
When I can’t type at all

This is the people who understand
That sometimes not typing is not a malfunction
Sometimes it’s a return to our roots
Where words never grow on their own
And thoughts are mere shadows in the distance

All I Can Say

Obsidian
Agate
I can’t find the words
A smooth black glassy stone
And translucent orange banded with white
I can tell you these things
And you’ll know what I mean
But I can’t tell you what I’m thinking
And after so long
Files deleted before I can finish
Or left in disarray
Rocks are the only thing
The only thing left I can say

Book Report

I dreamt I was in school again
my book report was late
I was to present to the class
the book that most changed my life
the teacher meant us to learn
about ourselves and each other
but my life was not so cheaply up for grabs

the book that laid my soul naked
for the world to see
refused to be written about

if I tried to approach it
with a pen, the ink went dry

with a computer, the screen went black
with a flashing red box
around the words:
Software failure
Press left mouse button to continue
Guru Meditation #00000004.0000AAC0

but pressing the left mouse button
never worked
the screen just kept flashing
that red box with the
meditating guru inside

and the book could not have chosen
a better place to hide

Aging

My foot is cracked and bleeding from the cold
Yet there is beauty in the lines and cracks
My hands are gnarly, wrinkled, leathered, old
Yet every wrinkle hails unnumbered acts
They tell me to be pretty, to want more
“And more of what?” is always my reply
I’ve had a good long life, though I am poor
And poverty has been my shield and sky
I look into the mirror and I see
The greying hair, the laugh and worry lines
That come with living long and living free
For I have no consent to be confined
They look at me and feel I’ve disengaged
I celebrate surviving to old age

Fire

There is a flame that does not destroy
It does not consume
It does not go out
It burns through my body
It burns through my soul
Only looking for a way out, it said
Only looking for a way out

Sometimes it burns so bright and white
I wonder, will nothing be left?
Will they find me a pile of ashes and bones
And nothing to show for it
Nothing to show for it
But for a pure act of theft

But the flame has a purpose
It guides me to make things
It guides me to write things
It makes me crochet things
It makes me paint pictures
And play the violin
With wild melodies that
I can’t quite hold in

It pulls me along
Faster than I could ever
Pull on my own self

It drives me to create
Drives me to write
Prose, poetry, or laundry list
Sometimes it barely matters
As long as I write

It drives my body to dance
Stim is not the right word
It is dancing
It is taking in all of my surroundings
And translating them into movement
And making my body dance
To every sound
Every sight
Every texture
The music of existence

My head whips around
My arms flail and flap and fling
My torso twists like an elastic thing
That has just learned that it can fly

The fire moves through my body
And the fire moves through my soul
And the fire tells me to create
Not just writing
Not just painting
Not just dancing
Not just fiddling
Not just anything
But everything

Wordless

I love you because
I can walk into your room
Talk to you for hours
And you don’t even notice
That I haven’t said a word
And that I left my talking computer
At home again
By accident

Three Lies

“It’s only atypical autism.”
“I’m very high functioning.”
“I’m good at passing for normal.”

The three lies I told the world
The three lies I told myself

Why did I lie?
Because I thought I had to apologize

I thought I had to apologize
For saying “I am autistic”
With no qualifiers

I thought I had to apologize
For being able to speak
Even though by then
I could speak less than half of the time
And less than half of my speech
Communicated my thoughts

I thought I had to apologize
For having gotten through life
Without a diagnosis
Until I was fourteen

I thought I had to apologize
For not being identical
To every single other autistic person
That I ever met

I thought I had to apologize
For not being a real autistic person
Who was diagnosed at the age of two
And never spoke
And had an IQ of 30
And spent their entire life in special ed

I thought I had to apologize
Because what Uta Frith had to say about me
Bore no resemblance to the world I lived in
Same with Bryna Siegel
Same with Lynn Koegel
Same with Simon Baron-Cohen
None of their descriptions of
The world of an autistic person
Bore any resemblance to my world
And they were the experts
Weren’t they?

I thought I had to apologize
Because I had no idea
That I didn’t pass for normal
And never had

I thought I had to apologize
Because I had no idea
That people actually saw me
The way Uta Frith sees autistic people
In fact I had no idea
How people saw me at all

I thought I had to apologize
So I squeezed myself tight
Into the cubbyhole provided for me
My joints ached at the end of the day
But this only increased my resolve
I would fit
I would fit, damn it, for once in my life

And if I had to call myself atypical
Then so be it
And if I had to claim I could pass
Then so be it
And if I had to claim to be high functioning
Then so be it

And then an autistic woman said to me:

“You don’t have atypical autism
You just have autism
The only reason people call you atypical
Is that they don’t know what typical autism looks like
And you are very typical
Of an autistic person”

I didn’t believe her for ten years
But meanwhile
When they changed my diagnosis
To autistic disorder
I began to wonder
And when I ordered my psych records
And saw myself described as low functioning
I began to wonder more
And when people told me
I did not pass
I began to wonder even more
And even more
And even more

I went to a conference
By now, unable to speak, in a wheelchair
But still believing I could pass
I spent all day listening to people talk
Then I typed something
And people reacted
As if the potted plant in the corner
Had decided to speak

I came home
My parents lent me their camcorder
I turned it on myself for two hours
Then I watched what I saw

It was like being punched in the gut
I looked autistic
I looked very autistic
I didn’t look atypical at all
I was scared
And that is when I ordered my psych records
And found out all kinds of things
Nobody had told me

PDDNOS
Atypical autism
CNS disorder NOS with sensory issues
Catatonia
Low to mid functioning
Schizoid features (flat affect, no friends)
Unsalvageable
Severely complex developmental disability
Idiot savant
Developmental disability NOS

Then, a new doctor:
Psychotic since infancy
Caused by the mother
Schizophrenic since adolescence
With descriptions straight out of
Frances Tustin’s 1970s book on
Autism and childhood psychosis

Then back to the old doctor
Who grudgingly called me psychotic
Because I wanted him to
Because I could understand psychotic
And I could not understand autistic

Then back to the three lies
Until I understood myself enough
To close the door on them forever

First Friends

You saw beneath the surface
To the person that I was
I saw beneath the surface
To the person that you were

You were the first person
To ever look three-dimensional
Layers and layers of emotions
And a bright shining core of white fire

And when we got together
It was like we synchronized
We marched around in unison
We saw through each other’s perspectives

But nobody else could see what we saw
They only saw surface appearances
So they dismissed my easy explanation
Of why we got along

“She communicates with me on my level,
She’s the only person who ever has.”

Secret Names

Everything has a secret name
That it broadcasts with all of its might
While people walk by
Not seeing a thing

If you wonder why I’m happier
With my body, my face, my life
I can see my secret name
And nothing else matters

You will find my secret name
In the hairs upon my chin
In my unibrow and the hair
That grows on my upper lip

You will find my secret name
In my double chin and the rest
Of the fat that covers my body
Especially my big belly

You will find my secret name
In my feeding tube and my Interstim
In the “artificial” implants
That keep me alive

You will find my secret name
In the bile and blood that drains
From my g-tube every day
Into cups and bags and toilets

You will find my secret name
In the fluttering of my hands
When they help me understand
What goes on around me

You will find my secret name
In the pain that fills my body
That puts me in bed some days
When I would otherwise be up

You will find my secret name
In the way my body moves
Both too slowly and too fast
At the exact same time

You will find my secret name
In the way my arms don’t swing
When I walk around
Even without a cane

You will find my secret name
In my joints that move too far
In the leg that goes behind my head
And my thumbs that bend to my wrists

You will find my secret name
In the twisting body and hand motions
That mean I’m trying to absorb
My surroundings into my body

You will find my secret name
In the words my mouth utters
When nobody is around to hear
And they don’t match up to my thoughts

You will find my secret name
In the sounds that come out of my mouth
Without any intention —
The meowing, the squealing, the strange sounds

You will find my secret name
Every time you look at me
For my every single action
Is a way of uttering it

Some people may not see it
Because they’re just not wired up that way
And that’s fine
You don’t have to see it to be my friend

And some people may not see it
Because they come to me with malice
And malice can’t see anything
On the level of depth of a secret name

My secret name can’t be spoken
It can’t be translated
It can’t be written down
It is only what it is

But if you ever look at someone
And suddenly a light clicks on
And everything about them
Suddenly makes sense

There’s a chance you’ve found their secret name
Now guard it with care
Because even they may not know
That they have it

Don’t just walk up to someone
And say “I know your secret name”
They’ll probably think you’re stoned
Or up to no good

If you must use their secret name
Use it to make interactions with them better
Use it to show them you care about them
Use it to show them you understand them

Never treat it like a piece of property
Never treat it like a prize you have won
A secret name can only be treated delicately
Because it shows you a window to their soul

And if I seem happier lately
It’s because I know my secret name
And I see it written all over my body
Especially the parts that others say are ugly

When people tease me about my double chin
Or the hair growing on it, or my unibrow
Those things are beautiful, right, and perfect
The way they are right now

Everything I used to be ashamed of
Is now beautiful to me
Because it’s part of my secret name
And that runs deeper than you can imagine

My secret name gives me permission
To be all of who I am
Even the parts people hate
Without shame, without apology

There’s a light beneath everything
And it illuminates each person from the inside
You can see it better in someone
When you know their secret name

And I’ve seen this in people
I’ve seen it in cats, trees, and rocks
But until recently
Until recently
I’d never been able to see it
In myself

Want You To Be

There were flowers growing in the garden
I never know the names
My mother is better with flower names than me
They were white and they were climbing
They had flat faces
And were climbing a garden gnome
Who was pretending to be a statue
And then pointing at you behind your back
Whenever you turned away

The gnome said your secret name
We all have a secret name
Each name is different
But the meaning’s the same
And the gnome was repeating your name
As if your life depended on it
And maybe it did

Maybe if I say your secret name enough
You’ll understand the world values you
Maybe if I say your secret name enough
You’ll hear the way you fit
Into the fabric of the world
Maybe if I say your secret name enough
You’ll know who you are
You’ll love who you are
You’ll be who you are
With everything you are

But the gnome keeps pointing
And the flowers keep climbing
And your secret name goes on and on
Like a song on a fiddle that won’t sit still
Or a flower endlessly climbing a trellis
Your secret name goes on and on
And one of these days
You’ll have to hear
One of these days
You’ll have to hear it see it feel it
Dancing through your insides

One day that dance will feel so familiar
You’ll wonder why you never felt it before
The rhythm will run through your bones
And you’ll feel at home
In a way you never knew you could

Right now, you’re dancing the wrong dance
Your bones don’t know the rhythm
But you try to play along
You try to act like these are your moves
And this is your song
But the only one your fooling is yourself

And that gnome keeps pointing at you
Behind your back
With the flowers trailing behind him
You can’t tell if he smiles or he frowns
But it’s you he wants to see
It’s because he wants you to be

We Fear the Coming of Winter

My father has terminal cancer
My mother has myasthenia and neuropathy
And a list of conditions so long
It would fill a whole page

They live in the backwoods of the mountains
Where there are no home care programs
And my mother takes care of him
As well as herself

She does this because she loves him
She does this because there’s no other choice
She does this because they’ve been together
Over fifty years now and are still in love

She drives with one hand at a time, sometimes
Because the other one has given out
Then she switches hands, hoping by then
The other has the strength to tough it out

Her eyes close so tight they’re like slits
She holds them open with her hands
By pulling up on her forehead
Or putting her fingers on her eyelids

Sometimes she needs oxygen
Sometimes she’s landed in the ICU
One time she stopped breathing
And they had to call a code blue

And every morning I wake up
And I wonder if she’s still alive
Every morning I reach out with my mind
And try to see what I can find

Because sometimes she feels like a cloud
That could dissipate in the morning breeze
And sometimes she feels like a film of ice
That could crack into pieces on top of a creek

And sometimes she feels like a tiny star
Too far away to see
And I wonder if she’ll get the chance
To say goodbye to me

Does she know that we all know
The sacrifice that she is making?
Does she know that we all fear
That taking care of dad will kill her?

Does she know that sometimes she looks
Like a shadow dissipating in the noontime sun?
Does she know that sometimes she looks
Like a story ending before it’s begun?

And she’s always been stronger than strong
When I was young she worked two or three jobs
Just to give us kids more than what she’d had
Coming home too late to see her drive in

She’s doing the same thing now
Taking care of my dad, herself, and the house
That’s three jobs at a time, still
It’s still that sacrifice

But I am so scared she will melt with the snow
I am so scared she will crack like a frozen branch
I am scared this time she won’t have the strength
In those huge reserves she’s so often tapped

She has love and grit and determination
But can those things be enough
When you can’t even open your eyes
Without using your fingers?

The winter is coming and that’s what we all fear
The winter is coming and will she disappear?
The winter is coming and what can we do?
The winter is coming and I love you

I love you more than the frost loves the ground
I love you more than the ice loves the branch
I love you more than the snow loves to whirl
I love you more than blizzards could ever destroy

Love may not save you but love will hold you up
Love may not keep you alive forever
But it will keep something of us all alive
But, love or not, the winter scares us all

But, then, winter or not, we have love
And winter or not, we have strength
And winter or not we have a bond so close
It’s impossible to break

We all fear this coming winter
But we all love our mom
And maybe that love will be enough
Maybe something will be enough

Mom, I hope you know we love you
That every single one of us
Knows the things you do
To make Dad’s last days as good as they can

We know what you are sacrificing
We know what you are risking
We know how scared you are of the winter
We love you every day

I love you more than I could ever say
I want you to survive my father’s death
I want to be able to see you every day
I love you more than I could say

I love you
I love you more
Than I could say

Constrained Richness

I spent six years in bed, six years I found
The richness of the love surrounding me
A tree outside my window so profound
From detail comes familiarity
They say that all restriction is a curse
A nightmare from which folks can never wake
But we exalt our highest forms of verse
Like sonnets, which restrict which form to take
And always those who could, would hurry past
Without a glance at me, or at the tree
The richness that they missed, they moved too fast
To see what I and other slow folks see
For life is rich to infinite degree
It’s found in sonnets, and in folks like me

Love and Death

Love is life and joy and happiness
And love is also
Death’s permanent dance partner
Neither would be what it is
Without the other nestled inside it
The closer you get to death
The closer you get to love
And sometimes that scares people the most

What can be feared from love?
Only the total annihilation
Of all that is not love
And that’s not just anything

What can be hoped from love?
Only the total annihilation
Of all that is not love
And that could well be everything

Weaving

When I was woven together in the depths of the earth
I may not believe in your god, but I believe in that
In the depths of the redwood soil
Underneath the Mother Tree
My soul was woven together
Just as my human mother
Wove together my molecules
Inside her womb

I am the child of two wombs:
My body belongs to my mother
My soul belongs to the redwoods
I am fearfully and wonderfully made
Intertwined between the redwood soil of my soul
And the humanity of my body
You knit me together in my mother’s womb

I know how to knit, to weave, to crochet
I know the cord used by any god is love
They weave us together in love
Love creates us
Love ignites us
Love drives us
Love surrounds us
Love completes us

My mother is my mother
And the Mother Tree is the mother of my soul
Her soil has created me and Her soil will transform me in death
Where I will meet Love in its most untarnished form

When I was woven together in the depths of the earth
The redwood sorrel grew all around me
It pushed its way up through the soil
And greeted the sun
Which sang to it a love song
A love song about nourishment
And the redwood sorrel carpeted the ground

When I was woven together in the depths of the earth
The soil was moist, and I absorbed so much moisture
When my friend told me how watery I am, I was confused
I always associated myself with earth
But the earth in a rainforest is saturated with water
Just like the air is saturated with mist
You can’t escape water in a rainforest
So I am filled to the brim with water
(Watery earth, earthy water)

When I was woven together in the depths of the earth
The Mother Tree gave me Her protection
No matter where I go, no matter what happens to me
No matter what happens to Her
I am under the protection of a small redwood forest
In San Mateo County

When I was woven together in the depths of the earth
I was in a small area of the forest
If you look for it with only your eyes
You will miss it completely
You will drive right by it

But if you listen to the music of the Mother Tree
If you feel for the parts of the forest
That shine with a light brighter than you can imagine
If you listen with every atom in your body
Then you will find the place
Humans have our own name for it
Trees don’t need a name
It’s a small section of the redwood forest
But it is sacred

Don’t ask me who it is sacred to
It is sacred
That is enough
It is sacred to me
But it is sacred to itself
And that matters more

I am one human being
Who has been allowed and invited
To take part in its sacredness
To worship with the forest

And it may not be the words of my redwood religion
But it might as well be:

For you created my inmost being
You knit me together in my mother’s womb
I praise you because I am fearfully and wonderfully made
Your works are wonderful
I know that full well
My frame was not hidden from you
When I was made in the secret place
When I was woven together in the depths of the earth.
Your eyes saw my unformed body;
All the days ordained for me were written in your book
Before one of them came to be
How precious are your thoughts, God!
How vast is the sum of them!
Were I to count them,
They would outnumber the grains of sand —
When I awake, I am still with you.

-Psalm 139:13-18, New International Version

So just as I was being made in my mother
I was being made in the earth
I belong to my mother
And I belong to the soil
And I belong to the redwoods
And the Mother Tree
For as long as I live
And as long as I die
There is no gratitude or love enough
For this

Silent Pauses

When ordinary people talk
We talk in poetry
With long pauses between the lines

Long pauses
Pauses long, and longer
So that all the other information
Has a chance to sink in

When ordinary people talk
We talk in stories
Not in academic analysis

“This is what happened the other day
To my wife’s sister Molly
At the Walmart —
You know Molly
She can’t do the sound of the cash register
.
.
And every register going off at once!
And she was plugging her ears
And crouching low to the ground
And people were staring
You know how it goes”

And another long pause
.
.
.
.
.
Filled by rolled eyes
And barely controlled anger

But mostly
Just a pause
.
.
.
.
Where everybody speaks their piece
Without saying a word

And only after that long pause
This long pause
Here
.
.
.
Only then can the conversation move on

Most of the conversation takes place
Inside the pauses
Where people have time
To think and feel

It’s not a wall of words
Nobody has to say out loud
What we know everyone is thinking

Nobody has to explain
How mortified Molly was
To have a meltdown in the Walmart

Nobody has to analyze
The ableism in people’s stares

Nobody has to explain
Why they are so angry
That this one part of the world
Has to be so hard

“Molly went home and
She couldn’t stop throwing up
She stayed in her room all day
And came out pale, sweaty, and shaking.
At least she had her cat
That cat never left her side.”

Another long pause:
Nods of sympathy
Head shakes of disgust
Eyes rolling at the world at large
Grunts like “uh-huuuuuh”
More tone than verbalization

Like Molly, I am autistic
I have learned the rules of conversation
Only with the greatest effort
That people don’t always like when you
Act like a bulldozer full of words

But it has been worth the learning
Because the bulldozer full of words
Split my brain at the seams
And wore me out before it wore anyone else out

The pauses give my brain room to breathe
Being quiet lets me listen
To the music of their speech
The pauses let me watch
The dance of their bodies
Not one by one
But as a group
Each movement
Reflecting off the movements of another

The music and dance
Are my private view on the world
They let me see things
Others don’t see
Understand things
I could never explain
But the music in their speech
And the dance that hangs in the air
Between their bodies
Tell me everything I need to know
And more

So I have learned that
When ordinary people talk
They talk in poetry and stories
And their hands and eyes dance
To a song of emotion that can only be heard
In the pauses

I may be autistic
I may hear the pauses differently
But I still hear the music
I still see the dance
Even if it’s not quite the same
Music and dance
Everyone else sees

Either way, I know
The rhythms and the tones
The movements and the stillness
That only show up in the silence
I may miss the words entirely
But I don’t miss the music or the dance

And those silent pauses
.
.
Filled with music filled with dance
.
.
.
Are the most important
.
.
.
.
.
Part

Lock and Key

If I could hand you just one thing
It would be a Mason jar
Filled with mud
Collected at twilight
On a rainy day
From the ground
Underneath a nurse log
In a redwood forest
In San Mateo County

If I possessed this Mason jar
It would be my most prized possession
I would sleep curled around it
Every night, all night long
I would keep it always
Closed up tight as it could close

And I would hand it to you
So that you could see all my secrets

Because only a trustworthy person
Would be able to find my deepest
And most beautiful secrets
In an old Mason jar full of mud

Anyone not fit to find them
Would never see them in the first place

Mud is the perfect lock and key to my soul

The Mind Bridge: A True Story

You saw me spinning outside
Along the edges of a dance
Asked questions
Were told I was crazy
The first thing you were told
Besides my name

We were so very different
And I had trouble communicating
But from the very first day we talked
You were making inroads nobody had ever made
Ever
Ever
Never in my life
Had someone peered into my mind
And seen me

We were only twelve years old
And you instinctively knew
That the way to communicate with me
Was to find books in common
And talk in metaphors
Gleaned from the pages
Of the books we had just read

It was A Wrinkle In Time, I recall
We classified people as
Meg-like or Charles-Wallace-like
Sandy-and-Dennys-like

For the first time ever I was able
To break out of non-communicative echolalia
By using echolalia from a book
I told you I was Mrs. Who
The character who could only communicate
By quoting the words of others

For a 12-year-old autistic kid
Who had never heard of autism or echolalia
I doubt anyone could have done better
Than we did that day
At building a bridge between our worlds

I didn’t recognize your significance
For a long time
In fact I ignored you
I was embarrassed sometimes
At your interest in me
I didn’t know what to make of it

You saved every telephone number
Of every mental institution
Every residential facility
I was committed to
Even for a day
So that we could keep in touch
No matter what

Nobody else did that
Not even the people
Who claimed later
To have been ‘so close to me’
None of them ever did that

But I’ve seen your daily planner
Full of crossed-out phone numbers
For mental institutions
That I have no memory
Of speaking to you in
Because I was too heavily drugged

When I became nonverbal on the phone
You were the one who devised
Impromptu communication systems
Cycling through the alphabet
Until I tapped out the letters
Not even my psychiatrist
Took me seriously enough
To do this for me
I cried

Then each of us tapped out
The rhythm of a prime number
You took two
I took three
You took five
I took seven
We would go as high as we could
My favorites were seven and eleven

You knew that the rhythm of numbers
Was one of my favorite things
So when I went nonverbal on the phone
You devised the prime number game
There were so many areas
Where we met in the middle
Despite our brains being quite different

I was a highly sensing and sensual person
And I brought to our friendship
A heightened appreciation for
Basic sensory experiences
That you had all but forgotten about
You even took up stimming
To understand the world
As I experienced it

You were undersensitive
And you lived in your mind
A mind full of mathematics
And ideas, and concepts
That were normally too high
For me to climb to
But you carried me up
Specially made ladders
To teach me graduate-level math
And make me think I could do it

You were so brilliant
That everyone knew it
Even in our gifted program
You were singled out
For special tracking
I’d never even heard of
The gifted of the gifted

No one was less surprised than me
When you won the International Science Fair
By discovering a new property of
The Fibonacci sequence
You weren’t just good at tests

I used to wonder what someone like you
Saw in someone like me
Who was already exgifted
By the time I began to know you well
I wondered how a mind like yours
Could see anything worthwhile
In a mind like mine

But the magic happened between us
When we each built a bridge
I built mine out of mud and sticks
And redwood cones
You built yours out of equations and proofs
And lots of geometry
And we were able to stand in the middle
Where the bridges met
Hold hands
And look out over the landscapes
Of our two minds

Nobody had ever built me such a bridge before
Nobody has ever built me such a bridge since
Until I saw the bridge
I had no idea how lucky I was

“I was content to be an object in your world”
You told me once
Commenting on the long time
When I couldn’t seem to understand
That you were offering friendship and love
When you weren’t sure
I noticed you were really there at all

How can an autistic child
Who has only known bullies
Masquerading as friends
Understand friendship and love?

One of my friends
When she was a teenager
Got so confused
By a genuine offer of friendship
That she painted a painting
Where the sky was the ground
And the ground was the sky
And all the colors were reversed
Then she broke down crying

Me, I just stayed wary, for years
When I was vulnerable around you, I waited
For the sucker-punch to the gut
That always came
When I was confused or overloaded
And the laughter that always followed

But the punch
And the laughter
And the ridicule
Never came

Instead of garbage
You handed me a flower
Instead of a locked door
You handed me a key

I unlocked the door
I stepped out into a world
Of living color
And I said goodbye
To the bully-friends
Forever

And I took your hand
And stepped onto the bridge
And we held hands
And looked at the sunset together
You standing on mud
Me standing on geometry
On a bridge
I have never seen the like of
Again

My Level

I spend all day every day
Climbing up to your level
That’s what I do every time
I use a word
Or even communicate directly
Instead of indirectly

Sometimes I want you to
Come down here to my level
It’s not a bad place to be
It’s not full of emptiness
Sometimes it’s so full of light
That I can barely stand it

I want you to sit next to me
Not facing me

I want to pass intricate glass beads
Back and forth
Side to side
As if our hands just happened to be there
To drop the bead
To catch the bead
But never to touch, one hand to the other

I want us to feel the beads with our fingers
And rub them on our faces
And tap them to hear the sounds they make
And hold them up to the light
To see it glitter and flash inside them

Because, you see, I spend all day, every day
Climbing up to meet you where you’re at
But you never climb down to my level

I live down here
It’s not bad down here
It’s actually quite beautiful down here
And if you are at all able
One day, just for an hour
I want to show you where I live

Meeting Death

Don’t think I don’t see
Sitting in a chair
Next to my hospital bed
A lady with long wild silver hair
And a flowing white dress you can barely see
And light brown skin so paper-thin
That the light shines straight through

Don’t think I don’t know who she is
And what she is doing here
Waiting, keeping time
In case I have need of her

Sometimes when the delirium clears
I feel myself falling into her light
The closer I get
The less strength I have
To resist her in any way

I forget who she is
I only know she is telling me
To lie down and rest
But I am already lying down

And my heart feels so heavy
As it pumps my blood
That it wants to lie down and rest

And my lungs feel so heavy
As they move the air
That they want to lie down and rest

And she tells me to lie down and rest
But I am already lying down

It’s a long night
I fall out of bed
And an alarm blares
And a nurse picks me up
And puts me back in bed
Then I fall out of bed again
It feels like a surreal dance
Of UFOs and strange beeping noises
And I don’t know where I am
Or who I am
Anymore

The pain is unending though
And she tells me to lie down and rest
But I am already lying down

I feel myself floating closer and closer
And the alarm blares again
And the glowing lights of my IV pole
Dazzle my brain

And she tells me to lie down and rest
But I am already lying down

I sleep and dream delirium dreams
Of a forest on a hill full of holes
And even in the dreams
The pain is never-ending
Slowing time to a crawl
And making me wish for escape

And she tells me to lie down and rest
But I am already lying down

Next day, they force in
The biggest enema I’ve ever seen
I have more strength afterwards

And she tells me to lie down and rest
But I am already lying down

And I say no, I will not rest
Because it’s not time yet for me to meet you
I say I have friends who would miss me
Friends who are already scared
Because they can see you
And they know who you are
And I know who you are
And it’s not my time
Not yet
Not now

But I can’t fight yet
I can only vow that once I get stronger
I will fight my way back to life

My secret is I want to rest
I want to lay down
I want to give in
You are so beautiful
And so friendly
And to keep my heart beating
Is so hard sometimes
And it feels like your gravity
Wants to pull me in
And the closer I get
The more I want to rest
I’m afraid it will sound
Like I’m a coward
So for now
This is my secret
Alone

But day by day I pry my way away
From the event horizon
And day by day my strength comes back
And it gets easier to fight my way away

But Death turns to me and tells me
It will never be over
She will always be there for me

She says it like a promise
And then she makes a bigger one:

You will never die alone, my child
I will be there to catch you when you fall
Whether you die on a trail in the forest at night
Or in a room filled with family and friends
I will be there for you
I am always here with you
And you will never die alone
Because my love will fill you
With everything you need
And you will die
Filled with my love
Filled with my light
You will be who you need to be
And I will do what I have to do
For I will always be with you
And you will never die alone

My Ideal Forest Death

Lay me down in the redwood forest
With redwood needles woven through my hair
A big clump of dirt to be held in each hand
And redwood cones covering my chest
Lay me down with my glasses on
So I can see the canopy under the sky
Lay me down touching the Mother Tree
So She can sing to me the same songs
She’s sang since my soul gestated under Her soil
Make sure I have all the connection I need
To my roots in the forest floor
Smear my skin with muddy dirt
Put redwood sorrel in my mouth
And let me lie there until I die

Plastic Cyborg Love

Its name in medical-ese is a gastrojejunostomy tube
Or a GJ tube for short
I just call it The Tube

Through nothing more than some tubes
And a syringe
And a feeding pump
I give myself water
I give myself food
I give myself meds
I give myself life
Bypassing my paralyzed stomach

I drain out the life-destroying bile
That would otherwise suffocate me
In pneumonia after pneumonia
Until I eventually got unlucky and died

There are no words for the feeling
Of giving myself a big syringe of cold water
On a hot day
And feeling every inch of it go
Cold
Into my intestines
No stomach to hold it back
No stomach to vomit it up

Maybe the word is love?
My tube is not an inhuman machine
It is a part of me

If love means that you take care of someone
If love means that you save someone’s life
Without thought for your own
If love means that day by day, you do the hard work
Without complaining or tiring
Even when you get clogged up and miserable
Then surely my tube loves me

And I love my tube
It has a personality
It’s grumpy on some days
And happy on others
I try to make it happy

I know more about making a feeding tube happy
Than any of those doctors and nurses
From Gastroenterology
From Interventional Radiology
From Pulmonology

They said I had the mind of a child
That I would pull my tube out trying to play with it
The way young babies do with their feeding tubes
They said I didn’t have the cognitive capacity
To take care of a feeding tube
They said I would fail
They said I would be better off dying
Than even trying the feeding tube
And above all, they said I wouldn’t know
How to take care of it
That it would be a huge burden
That maybe, I belonged in a nursing home
Where they knew how to take care of things like that
And people like me

I just got out of the hospital
The nurses were amazing people
But they nearly ruined my feeding tube
They didn’t know how to make it happy
I’ve been to Interventional Radiology enough
To know that they don’t know the slightest thing
About making a feeding tube happy
Not even the doctors who predicted my doom
Know how to make a feeding tube happy

But I know how to make a feeding tube happy
I have been learning for a year now
Every day, I learn more
Every day, I learn that
If you treat something as if it is alive
And you treat it with respect
Then it will be happier
And it will work better
And it will like you in return
Maybe even love you
And it will give you
Everything it has to give

I love my feeding tube
And my feeding tube loves me
My feeding tube takes care of me
It keeps me alive
It works hard all day long
To keep food and meds and water moving smoothly
And I work hard all day long
To make sure it has the resources to do it with

My feeding tube and me are friends
My feeding tube and me are a team
My feeding tube and me like each other
My feeding tube and me love each other

We have a relationship
My feeding tube and me
We are connected intimately
It is not just a piece of plastic
It is a life-saver
It brought me back from certain death
How can I fail to love it?
And how can I fail to interpret its efforts on my behalf
As its own kind of plastic cyborg love?

I love my feeding tube
I will always love my feeding tube
I don’t care how it sounds
I don’t care if anyone understands
You can’t go through some things with someone
Without finding love there
And with its fate intertwined with mine
Its plastic intertwined with my stomach and intestines
Love is what we’ve found,
Me and my feeding tube
And I will always find ways
To make it happy

Unpronounceable

Your tongue may be able
To pronounce my name
But your mind will never be able
To pronounce my soul

They say I have a pronounced
Case of autism
But I pronounce them
Clumsy and inexpert

With their minds
Struggling to pronounce
What their hearts
Can’t perceive

I pronounce myself equal
I pronounce myself worthy
I pronounce myself real
I pronounce myself deep

I pronounce the word marona
And marona pronounces me back
It pronounces me through redwood sorrel
Through mist and through rain in the soil

The spiderlings pronounce themselves
Alive and well
Flying through the air
On their threads of silk

They fly over me
They fly over the redwood soil
They fly over the mushrooms
They fly over everything

I burrow deep into the soil
Snug and comfortable
And perfectly content
To be unpronounceable

And I Will Dance

I am a focal point
For atoms and molecules and strings and things
I am the place that things connect
And I am not even aware of this
I am connected to the number zero
And zero contains everything

And yet I am flowing colors
And I am things no science or math can reach
I am the place things go
When they have no identity
And need no identity
The swirls of color
The textures that surround my fingers
The tones that drift past my ears
All of these are me as well
No number or formula can contain
The music of existence
The dance of reality
The texture of truth
The rhythm of depth

One part of me
Wants numbers
And formulae
And science
To explain truth

Another part of me
Wants to dive in
Headfirst
To sensory experience
And find the truth there
Unexplained, unexplainable

Both are right
Both are wrong
Both are me

And I will dance in the swirling colors
And I will dance in the numbers
And I will dance
And I will dance
And I will dance
And this is me

Magic Flowers

Sometimes I want to unfold
The beauty of the world
As if it was the most intricate
Origami flower
That had ever seen the light of day

Then I want to wait
And wait
Until the flower blooms for real
Until its velvet black blossoms
Tinged with purple edges
Grow fuzz that you can run your hand over

And I want to hand it to you
And watch you rub the fuzz
Against your cheek
Against your lips
Against your nose —
The yellow-black stamens tickle

And then fold the flower
Back into paper
And put it in my pocket
For safekeeping

I would make more of them
And write secret notes
That only some people could read

They would say things like:

“The most beautiful things
Are concealed all around you.”

“You are a flower and
This is how you become real.”

“You are unfolding
Just like this.
Don’t hurry,
Don’t wait.”

I would hide them in plain sight
And I would hide them in places
That only the curious and observant
Would bother looking

I would hide them in places
That can only be found
When doing shit work
For 22 cents an hour

I would hide them so that each person
Stood a chance of finding at least one
Just one
That told them what they needed to hear
Right now
Just then

Unfold them, they become real flowers
Fold them, they become folded paper
You can do this as many times as you need
Because they are magic flowers

And if you get good at looking and listening
With more than just your eyes and ears
You will find these creations everywhere
Left by someone
With far more magic
Than I will ever possess

You know when you find one because
Suddenly something ordinary
Becomes extraordinary
Suddenly you’ve been let in on a secret
About something you’d seen before
But never seen before

It can be anything from
A spray of mud on your pants
To a pair of decorated crutches
To a butterfly

It doesn’t have to be pretty on first sight
Many times it isn’t
Many times it seems horrible
Until that flash of inspiration
When it unfolds into a flower in full bloom

And then every texture is like suede
And every color is like the deepest blue before dawn
And every taste is like boiled collards with butter
And every smell is the fur behind a cat’s ears

I wish I had the magic necessary
To make these things myself
To fold reality into paper
And leave it everywhere for people to find

As it is, all I can say is
Someone has already done it

You can find these magic folded papers
On the inside of a zero
In the yawn of a kitten
In a feeding tube
In a wadded up rag
In a tangled old root
In a leaf that skips down the sidewalk

And all of them are flowers
And all of them are there to tell you
There is more in this world than you can ever see
There is more love
There is more light
There is more beauty

And you are part of it
Always
Even
(Especially!)
When everything seems to be
Crashing down around you

Can you accept
This magic spell
This gift
From the world
To me
To you?

For My Verbal Nonverbal Friend

When I hear your voice
It startles me
It’s a voice coming out of someone
Who was never meant
To communicate by speech

It’s a voice that sounds so distant
That I know you are at the back
Of a long tunnel

The machine that makes your words
Doesn’t always bother
To connect them to your thoughts

And I hear the distance
I hear the echoes made by the cave walls
At the end of the tunnel
I hear the echoes in your mind
I hear the echoes of books
The echoes of people
The echoes of echoes of echoes
That have formed the falsehood
That is your speech

Your speech is an elaborate lie
It’s a con job your brain pulled on you
When you were too young to resist
Your speech tells others,
“I am one of the worthy ones.”
Your speech rips your brain apart
But nobody notices but me

Mary Margaret would call you
One of the silent ones, now given a voice
And you are one of the silent ones, like me
It’s just nobody can see it
Because nobody understands what it means
When they hear words come out
Of a mouth that should never have been used

But I know what it means
Oh I know what it means
And my heart aches

I know it means endless hours of repetition
I know it means chewing up books
And vomiting them up
While nobody realizes
You’re not talking, you’re being sick!
The bile hurts your throat
But you do it anyway
You have no choice

I know it means a feeling in your brain
As if your brain is about to shatter
I know it means losing everything meaningful
About the way you perceive the world
As every ounce of energy
Is diverted to making mouth sounds

I know it means terrible pain
And never enough payback
To make it worth your while

I know it means fear — sometimes terror
Of what would happen to you
If you stopped talking
The way your brain aches to do
Every time you open your mouth

I know it means that you don’t type
As often as you should
For fear of social consequences
For fear of being accused of faking
For fear of being taken advantage of
For fear of getting hurt in a million ways

When I talk to you
We communicate as naturally as we can
As much like we were born to

We type, but we use the words
Like a carrier wave for something deeper
We never speak except to make emotion sounds
Our fingers flicker at each other
In our own private language
That our bodies made up between each other
On the spot
Every time

I sometimes get inside your head
See the world through your eyes
As you look out at me
And I see myself through your eyes
Looking back at me
With your eyes behind mine
And my eyes behind yours
That is how intimate we are

You can’t be verbal
It doesn’t make sense
Even when you speak
You don’t sound verbal

And you know all the secrets
That nonverbal people learn
To communicate
When we can’t speak

There’s more than one way
To be nonverbal

You strike me as nonverbal
Because your problems with speech
Prevented you from communicating well
Even when you can talk

And to me, what matters is not
What sounds you can make
Coming out of your mouth
Like a dog-and-pony show
For everyone to see

What matters is:
Can you communicate your thoughts?
Can you do so with any consistency?
Can you communicate about things
Beyond superficial descriptions of events?

If you can’t do those things
I have a hard time calling you verbal
I know I’m supposed to
I know it’s supposed to just be a word count
But a word count is just quantity
Whether you’re verbal or not
That’s quality

And
Your
Speech
Lacks
Quality

In too many ways to count:

Your voice is so distant
It sounds like you’re in a cave
Your words only attach to your thoughts
By random chance
And by three decades of nonstop effort
To mold your brain into shapes
It was never meant to take
One minor setback
Can make the whole thing collapse

And people would be so surprised
Because they don’t see
That you were never meant to be verbal
Which means they are surprised
When you don’t speak
And I am surprised — so surprised! —
When you do

You have pieces of fabric
That have been stitched together
The wrong way around
And people only see
That the fabric exists
They don’t see it going
Against the grain

But you know the things
That only nonverbal people know
You know how to communicate
Without the use of words or gestures
You know how to tell
When someone else is doing the same
Your tongue may sometimes be verbal
But your brain is not

So every time you utter words from your mouth
I am shocked and surprised
Every time
Without fail

Because everything else about you
Says this shouldn’t be possible
Everything else about you
Says your speech is a mirage
Water painted on the road
That disappears
When you get close
Or try to touch it

But you can communicate
From the depths of your soul
Without making a sound
And that is where
The real water
Can be found
Clear and deep

So I will stare into the depths
Of that clear and deep water
And I will refuse to countenance
Any mirages that come by
Claiming you are verbal —
I know you better than that

When I Say Love

When I say love
I mean the way the granite feels
When caressed by the sun
On a hot summer day

When I say love
I mean the way redwoods feel
When they drink in mist
Through their leaves

When I say love
I mean how the redwoods
Iterate an entire forest
In one tree

When I say love
I mean the way the redwood sorrel
Always finds its way up
To carpet the forest floor

When I say love
I mean the way roots find water
And help the plant grow straight
While the leaves search for light

When I say love
I mean how the leaves feel
When they turn sunlight
Into food

When I say love
I mean the way one old redwood
In a forest of newer growth
Holds up the entire ecosystem

When I say love
I mean lichen and moss
And salamanders
Who never leave the treetops

When I say love
I mean soil on the ground and in the trees
That allows death, decay, and rebirth
And endlessly creates life

When I say love
My body may be in bed
But I have slipped off to the forest
Through an impossibly deep blue twilight sky
To curl up at the foot of the Mother Tree
And bask in Her amethyst glow
And maybe, maybe
Be brought into the soil
To decay, to grow, to live
To soak up some of Her love

To My Friend Who Is Hurting

If I visited you right now
I would not say a word

I would confuse the TSA agents
By filling my suitcase
With soil and dead redwood needles
And chunks of granite

And when we met
I would hand you
A sturdy piece of granite
Straight from the Sierras

But I would not talk
I would not type
I would not say a word

I would find a place
By the side of the road
Full of rocks and debris
I would sit with my legs
Splayed apart like a W
And arrange the rocks
On the sides of my knees
And stack them
In the perfect order

And then I would arrange more rocks
In front of me
And you would be there

And we would start handing rocks
Back and forth to each other
Trusting each other
To put them in the right arrangement

And if any cats came by
We might photograph them
Or sniff their noses
(If they allowed us the courtesy)
And always respect
Their fundamental catness

I would have bought you
A bag of blue marbles
Somewhere along the way
And I would hand you the bag
And look away
As the sky turned to twilight
And perfectly matched
The blue of the marbles

And I would never speak
And I would never type
And I would never say a word

You speak my language
Do you know how rare that is?
For anyone who speaks my language
And does it so well
I would travel to the ends of the earth
With a suitcase full of soil and granite
And spend the whole day

And never have to type
Not a single word

I would stand outside your borders
With rocks in my hands
And you would stand outside my borders
With rocks in your hands

And somehow
The rocks would exchange hands
And somehow
We would build
A sculpture of rocks
In between us
That said everything
That no word
Ever could

If you wanted
I would cover you in rocks
As you lay in the dirt
So that you could feel
The rocks weighting you down
Tying you back to the earth
Under its protection
Away from the things
That are hurting you
But only if you wanted

These are the languages I know how to speak best:
I speak Rock
I speak Tree
I speak Redwood Sorrel
I speak Soil
I speak Lichen
I speak Moss
I speak Dirt
I speak Mud
I speak Water-and-Earth
I speak Creek
I speak Fire
I speak Autistic (some dialects)

I will speak any of these languages
And more that I have not named
If any of them
Will make you feel better

I may not always be a good friend
I may not always remember you exist
I may go months forgetting about you
But when I remember
I will do anything
If it will make you feel better
What I lack in memory
I make up for in loyalty and love

I can’t guarantee that I will always be there
But I can guarantee that when I am there
I will be there — all the way there
And I will be there for you
To the best of my ability
Because that is what being a friend is about

And I will not speak
I will not type
I will not utter a single word
Through a keyboard
Or a PECS symbol
Or anything else

You don’t need more words right now
You need experiences
You need ties to the sensory world
You need rocks, lots of rocks
You need friends who don’t condescend
You need to see cats
You need people who speak your language

We can hand each other rocks
I can help you arrange them
In a style that blends both of ours
And shows
To anyone with eyes to see
(Which is almost nobody, mind you)
That we are friends
That we have collaborated
That the work is a blend of both of us
And that is our language

For any bystanders
Who may be confused
Reading a poem
About the language of rocks
As spoken by Two autistic people

Each rock that we arrange
Has a place, and a meaning
We know these rocks inside out W
e know where the rocks want to be
And we put them there
It becomes a collaboration

Between you
Between me
Between the rocks
Between the ground

And in the end
It is more than it was
In the beginning

After we are gone from that place
Some people will see a bunch of rocks
Some people will see art
Some people will see sculpture
A very few people will see
Two friends
Collaborating with rocks and the earth
To show all the connections
We can’t show to others
If they don’t speak Rock

And I would not speak
And I would not type
And I would not use picture symbols
And I would not use sign language
And I would not use words
And I would not use ideas

But exchanging rocks
And making rock piles
Would tell us each

More about the other Than any words
But I can’t fly
And I don’t have enough granite
For my suitcase
And all of this
Is just a dream
Of what I would do for you
If I could

So I have to type
I have to paint a picture Using words
To show you what I would do
If I only could
To show you that I care
About your happiness
To show you that
I can speak Autispeak
When I need to

And most of all
To give you a break
From all that is harming you
So that when you face it again
You will face it with renewed energy
Renewed resolve
To face it in whatever way you want to
Not just the way they corral you in

I would give you lapis lazuli
And tiger’s eye
And black tourmaline
And moss agate
And amber
And granite

Rocks in your pocket
And rocks in your hand
Will tell you more about
Your place in the world
Than any group of people
Will ever be able to tell you

Rocks in your pocket
And rocks in your hand
Will dance with you
And sing to you
In words only you can hear
They will give you strength
That only rocks can give

Remember to listen
Hear them singing
To the rocks in the ground
And the sand that once was rocks
They sing of things
That only rocks know

And when you face the people
Who condescend to you
Even about the rocks
Who see you as an adult-size child
The rocks in the pocket
Will weigh you down
So the people can’t push you up
Into the air
Without your permission

I can’t give you rocks
I can’t make rock sculptures with you
I can’t sit in the dirt by the side of the road
And find rocks everyone has forgotten
And stack them in towers on my knees
These are things I can’t do with you

But I want to
And that should count for something
I hope it’s enough
Even if just barely enough
For you to know
I want to do these things
I want to speak our mutual autistic languages
I want to leave words behind
Just for a time
I want to show you
What can be possible

And that is what I would do
If I could do it
But maybe just writing about it
Will have to be enough

And most of all I want to create a sanctuary
Where you don’t have to talk
Unless you want
And you don’t have to let anyone in
Unless you want

And you can take the love of our friendship
Back out into the world
With the rocks in your pockets
And the rocks in your hands

And know that the rocks
Will love you
And protect you
In the way only rocks know how

Fell Out Of Your World

I fell out of your world today
And landed in the dirt
I knew the name of every plant
Of every tree and mushroom

You can’t know what this meant to me
This knowledge without thought
In your world, wit is easily won
It’s your solace and your weapon

In my world, it’s like flecks of soil
That pile up with each passing year
It grows slowly and naturally
My mind doesn’t soar through the clouds

I looked up at your world today
You seemed so happy up there
Because you do soar through the clouds
Your mind eats equations for breakfast

You can’t imagine life down here
It’s too slow and too ordinary
For days at a time I do nothing
But soak myself into the soil

But the soil talks to me
Like the clouds talk to you
And from the underground depths
Understanding flows up to me

I know that you love your life
Where the breeze brings you words
And the clouds carry equations
And you can dart everywhere
With a touch of your wings

But I love my life
I have deep roots in the dark places
Water springs up from the soil
And understanding can only happen
By listening to things without voices

I am a thing without a voice
Perhaps that is why I belong down here
And not up where the voice of the wind
Sings unceasing words of knowledge
To people whose heads fill with words

I fell out of your world today
And I thanked the gods of mist and soil
Of the dark and the damp
Of the roots and the trees

Because you may thrive in your world
But to me, it’s a lightning storm in my head
And I belong curled up inside the ground
At the feet of a redwood tree

In The Air

I may not be
The sort of person who can
Soar through the clouds
As if my intellect has wings
I’ve told you this
So many times
You might tire of hearing it

You might tire of hearing how
The soil of the redwoods sustains me
And gives me a knowledge
Wholly unlike your own

But I am
The sort of person who
Can scramble up the redwood trees
And as long as I remain safe in their branches
Connected to the earth through their trunks
And as long as I remain connected to water
Through the mist they drink in through their leaves

Then I can take in the air, the heights
I can think far and wide
I can put words together

I can do all those airbound intellectual things
Without the benefit of wings
As long as I stay connected
To the mist and the soil

So don’t write me off as saying
There’s no place in my life
To be up in the air
I just get there differently than you do

And my mind works differently
Because of its constant connection
To the ground and the mist
Without which I become hopelessly disoriented
Because my air is not your air
And going where you go…
It feels too much like endless falling
Tumbling without anything to anchor me
— I’ll stick to the trees

What I Missed

I cried and cried
For the child, the teen
Who never knew
That love and friendship could be real
The child who froze hirself up
Like ice
Thinking this was protection
And now the ice was melting into tears
Twenty years overdue

I cried because I’d met
Other people with developmental disabilities
And they had welcomed me
Without conditions
With more love than I’d ever seen
In such a large group of people

And get this straight:
Their love was not because they were pure
Not because they didn’t know better
They knew better:
They told stories of forced surgery
Forced drugging
Separation from girlfriends and boyfriends
And still they loved
Because they were human
And human beings love each other
Not always romantic or sexual love
But love nonetheless

And meeting these people
Thawed the ice
That had been freezing my heart
For twenty years

Meeting people who had
Been thrown out of every part of society
And put into special places just for them
Who found ways to love
Even there

And I could not fully love
Until I met them
Because I could not fully comprehend
The depth of what had been stolen from me

Photosynthesis

Sometimes I have climbed a tree
All the way to the top
And pressed my body into the trunk
Until I didn’t know where I ended
And the tree began

I’ve never liked the feel of sun on my skin
But on top of the tree it’s different
Because on the tree my skin gives way to leaves
And the sun means food to them

It’s a popular thing to say these days
That if a person is different enough from you
You’ll never understand them from the inside

But photosynthesis has taught me that’s wrong
Because I feel what it’s like
To get food from the sun
And to follow that sunlight the whole day long

My skin becomes bar
My bones become wood
My hair becomes leaves
My feet become roots
And rather than hating the sun on my skin
It sings me a food song
A life song
A love song
A light song

And if I can resonate with a tree
To photosynthesize as if I have leaves
Then surely I can resonate with
A member of my species
Who’s different from me
Even if they tell me
It can’t be done

Redwood Lullaby

I can feel the ground wet, soft, and squishy
With a rotting log beneath my head
Where the mushrooms and mycelium
Trace lines on the ancient bark
Young trees far older than I am
Grow straight from the rotting log
And I sink in deep in the blue twilight
And I rest my weary bones

And how weary human bones can get
When we move them all the time
They ache as deep as an ache can go
Till there’s no climbing, not another step

And that’s when I sink into the soil
As the nurse log cradles my head
And I will myself to become the dirt
So I can feel the redwood sorrel
Pushing one by one, towards the sun
In groups too big to count
There’s no ache so deep it can’t be helped
By becoming the dirt for awhile

I’d never have chosen exile
If there’d been another way
I’d never have chosen exile
If there’d been a way to stay

But if I close my eyes
And curl on my side
I could almost swear I’m there
And that has to be enough for a lullaby

Twilight blue is always how I see the sky
With an amethyst glow around the redwood bark
And owls you hear but never see
And mushrooms and slime molds that live inside
Logs so big you can stand up inside them and
Redwood needles and cones carpeting the ground

And that’s where I want to lie down
And that’s where I want to blend into the ground
And it’s where I want to feel every plant
Growing inside me and seeking the sun
And the rain and the mist creeping into the leaves
And mold and slugs, things that live in the damp
And all the things that say life goes on
No matter how much is lost
These things make me who I am

And maybe they’ll make me sleep tonight
Despite the ache in my bones
And the ache of exile
Maybe it’s enough of a lullaby for one night

Blogging Against Disablism Day 2015

Posted on May 1, 2015 by Mel Baggs under prose

Blogging Against Disablism Day 2015

What is disablism? It’s prejudice and discrimination and oppression against disabled people. Most people in the UK say disablism, most people in the USA say ableism, and they mean the same thing by it for the most part.

And if you have to ask if your kind of disability counts, it probably does. It’s an all-inclusive term, and anyone who says otherwise is engaging in the very disablism the word was created to fight. Here are some but not all sorts of disabled people who face disablism (yes, many of these groups overlap, because some are medicalized, some are accidents of history, and some are actual logical groupings of disabled people):

Physical disabilities
Cognitive disabilities
Chronic illness
Developmental disabilities
Intellectual disabilities/Learning Disabilities (UK version)
Learning Disabilities (USA version)/Specific Learning Difficulties (UK version)
Pervasive Developmental Disabilities/Autism Spectrum Disabilities
Emotional Disabilities
Psychiatric Disabilities
Mental Illness
Chronic Pain
Terminal Illness
Disfigurement
People who are perceived as disabled, even if not

And anything else like that. All people in these groups face oppression and discrimination for being who we are, so all of us count as meaningful in discussions of disablism or ableism.

I know I don’t always talk about disability directly on this blog. My mostly-defunct blog Ballastexistenz is where I normally discuss disability politics. But disability is a major part of my identity, and it creeps into my poems in ways you’d sometimes be surprised at. Even poems that don’t mention disability in any way, can sometimes be tied back to my experiences of disability.

For instance, I write a lot about my spirituality, which involves the redwood forest I lived in through infancy, and again as a young adult. What does that have to do with disability? If you’ve ever been in the psychiatric system, any spiritual or religious beliefs you have are considered “symptoms” if you’re not really lucky. That goes double if your religious beliefs come from a “religion of one”, where nobody else shares those beliefs.

The same happens a lot to people with temporal lobe epilepsy, who are told that our religious experiences are all seizures. Even though a religious experience changes you for life, and a seizure that just happens to switch on the “I saw God” part of the brain, doesn’t. There are people quick to make it sound as if ecstatic seizures prove there is no real spirituality, that it’s all just a trick of the brain. My answer to that is the following:

In one of the earliest seizures I remember, I was lying in my crib (which I had until the age of four or so) and a doll appeared in front of me. My mother had had a penpal from Japan, and the penpal had sent her a Japanese doll. The Japanese doll glided through the air and started moving side to side like the needle on a speedometer. (For years I called that “doing push-ups”, but my language skills weren’t that great.) I heard a voice in the distance say “uh-oh”, in a sing-song fashion. Then I started vomiting uncontrollably. And then screaming. And then my mother came rushing in, picked me up, and carried me into the living room.

It’s very typical of complex-partial seizures, to hallucinate something that you have really seen before. By the standards of the people who say God or spirituality is not real because some seizures feel like spirituality, then the Japanese doll must not have been real either. After all, I hallucinated it, there must have been one part of my brain specific to remembering the appearance of the Japanese doll, and that part of my brain was triggered during the seizure. In other seizures, I’ve seen the Dark Mark from the cover of a Harry Potter book. I’ve talked to people who’ve seen paintings from their past, often it’s things we never would’ve remembered if the seizure hadn’t called them up. But all of them were real things. The temporal lobe is involved in memory, among other things, so temporal lobe seizures can cause us to hallucinate objects from our memory.

I’ve had genuine spiritual experiences. I’ve never had ecstatic seizures, but I’ve had ecstatic migraines, which are rare but do exist. There is a definite difference between the two. But again — just because the brain can call up a hallucinatory version of something, does not mean that every version of that something is a hallucination. The Japanese doll existed and still exists. And as far as I’m concerned, genuine spirituality and spiritual experiences continue to exist, and are distinct from seizures that just happen to hit the part of the brain that is also triggered during real spiritual experiences.

And that is how spirituality becomes pathologized, and that is why when I get around to making posts with different categories relating to disablism, my spiritual beliefs will be part of those poems, even if they don’t directly mention disablism. Because there are people who would still pathologize me for the content of those poems.

Anyway, I’m going to keep sorting poetry (I’ve got an awful lot of it on my hard drive, only some of which has been published) and will eventually make it into posts for BADD, although I might fall asleep before I end up doing that. In the meanwhile, check out BADD yourself, it might be interesting to you. Keep coming back all day long, and indeed for the next few days, because usually posts get added into the mix for several days in a row. Disabled people often are late turning stuff in for a lot of things, and this is no exception. It’s always amazing to me to read through all the posts and see all the different ways people see disablism.