My Secret Name

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

Advertisements

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

For My Nonverbal Verbal Friend

[I have a friend who is partially verbal.  She can speak at certain times, on certain occasions, on certain topics, to certain people.  The rest of the time she types, or does other things.  But she is so much like me, and her speech strikes me as so disconnected from who she is, that her voice startles me every time I hear it.  I wrote this poem about my confusion, about how my instincts tell me she’s fully nonverbal and my brain goes WTF if I hear her voice.  As with other poems, even if it’s about one person, I’m sure there’s lots of others who can relate to it.]

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

What can you see?

In the voids inside my mind
There’s an ocean, deep and dark
At the bottom of the ocean
There’s reflections of the stars

If you can see the stars
At the bottom, in the deep
If you can see the rainbows
That even the sun can’t reach

If you can see me dancing
Unaware of being watched
If you can see the world
Before a mind, before a thought

If you see distant reflections
Of reflections, of reflections
And if you can see the deep, the dark
The silence between worlds

If you can see the void
That stands in front of me
If you can see how full it is
And how empty it can be

If you see what it’s like
To not know at thirty
What they knew at three

But to know things
And to see things
That nobody else can see

Then maybe, just maybe
I can see you
And you can see me

I Am Not A Word-Fish

I handed you a lump of wet soil
You threw it on the ground
Told me never to get your hands dirty again
I didn’t have the words to tell you
That lump of soil was me

You never liked me handing you things
“Use your words” you said
So I used words — my way.

I read every book I could get my hands on
I picked up phrases and sentences
As if they were toy blocks
And I arranged them and rearranged them
Until they said what you wanted

“What a brilliant child,” people said
As I stood there choking to death
On other people’s words
Pouring out of my throat so fast
I had no time to breathe

Do you understand yet?
Every time you call me clever
Every time you call me smart
Every time you call me brilliant
Or gifted, or talented, or gifted and talented
All I remember is choking and drowning

And I am supposed to be grateful
For being waterboarded into language
I am supposed to be happy
For choking and drowning
On other people’s words

And you thought you were helping me
When you put me in rooms full of
Children who swam in language
Like fish in water
Children who used my choking voice
As a joke between them all
You thought you were helping

You think you know something about me
Because I stuffed language down my throat
And vomited it up when needed

You think you know something about me
Because someone confused that
With being a language-fish
And threw me in the fishbowl
Until I almost drowned
Because language-fish have gills
And children
Who stuff books down their throat
For purposes of vomiting later
Only have lungs

And here’s the part
That makes me cry
Every time I think of it

I still tried to communicate
My way

I handed people lumps of dirt
I tried to hand them the mist through the trees
I let my hands flicker around my face
I handed them marbles and little ornate sculptures
I tried to show them the whole world in the color blue

I had tried so hard
To learn their language
That I choked on their books
And vomited their words
All day
Every day

They didn’t even see my language
They didn’t need it like I needed theirs
So I was not only invisible
But laughable

And you wonder why even mentioning these people
Makes me so furious I could choke all over again
And you wonder why I can’t identify with all those word-fish
And why calling me a word-fish makes me want to slap you
Until the flashbacks of choking and vomiting subside

I’ve finally wrested control of words
Against every odds that I started out with
And nobody was around to herald that achievement
Because they assumed I was a word-fish
Not a land creature vomiting words involuntarily

Nobody was around to hold me
When I vomited those words over and over again
Nobody was around to congratulate me
When I finally mastered the real use of words
Nobody was around to listen
When I used objects and body movements
To say more than words ever could

And you wonder why I resent your compliments
And you wonder why I burn with rage
When you ever, ever hint that this was easy
That I was born with a ‘gift’
That I didn’t have to claw my way
Every inch
To language
That I didn’t already have
A language
Of my own