Outlines and Mirrors and Turning Away

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
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Poison Oak Fears

My fears are growing like poison oak
There are phone calls every day
They say “Come Skype with your father,
Though he’s feeling very weak today.”

Video chats with my father
Are the best conversations I’ve had
We don’t talk, we just sit and look at each other
And the love blooms like flowers befween us

My father can no longer hide
How bad he’s feeling
Sometimes parts of his face turn bkue
And as if he has become translucent
The light of eternity shines through him
Sometimes he clearly struggles to breathe
Sometimes the pain jolts through his body
Sometimes he has no energy
To do anything but lie there and look at me
Out of half-closed eyes

We have little need for words now
What can be said has been said
He can read on my face unconditional love
I can read on his body both love and suffering

So we lie in our hospital beds
Thousands of miles away
And we stare at each other and feel the love
As if we were still hiking the ancient forests
He hiked me through as a child

Those forests were filled with love
And so are we as we stare at each other
Each of us falls asleep
He sometimes loses track
But love — the important part —
Still blooms like redwood sorrel
Carpeting the forest floor

But fear grows like poison oak
And I fear that one of these days
The message will no longer be
“Your dad may be well enough
To Skype with you a little today.”
I fear that instead it will be
“Take your dexamethasone right now
Because your father passed away.”

Will I cry?
Will I go numb?
Will I be enraged?
Will I throw myself into projects?
Will I become unable to function?.
Will I be able to be there for grieving relatives?

One thing I know
No matter what shows on my face
My tears will outnumber
The drops of rain
In a redwood forest in winter

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When Daylight Is Chaos

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

Bone dry

I believe that I'm strong —
Resilient I say —
Like rubber you push me
I push back, away

I believe I can handle
What the world throws at me
But then the world throws it
Too fast at me for me to see

It hits me in the head
I fall and hit the ground
My mouth is full of mud
I cannot make a sound
I guess I overestimated
My resiliency
I'm bawling like a baby
There is no dignity

Nobody wants to see it
Everybody looks away
When they see someone
Crying in this way

It's not demure
It's not polite
It's not crocodile tears
It's not sweet
It's not cute
It's only primal

It's loss of control
It's “I want my mommy”
And “I want my daddy”
And “I want whatever gods I believe in”
And “I don't care, I want them NOW NOW NOW!” <stomp>
I told you there's no dignity here

But I can't ask for my dad to solve my problems
He has no power to stop his own death
I can't ask my mom
She's got to take care of my dad
Without dying herself

If grief is love then my heart is breaking at the seams
If grief is love then it is only echoed in bottomless screams
And fearing to cry for fear I'll never stop
And crying in the least dignified way
Wailing, screaming, bawling my eyes out

And people ask if it makes me feel better after a “good cry”
It just makes me feel weary and tired and bone, bone dry
So I try not to cry, to no avail this time
For I am going to wail until the end of time
And it won't be demure little upper-class tears
It's the screaming and shaking that plagued my childhood years

I know now it stops
I know my resilience is real
It's not just hubris or pride
I really can endure most anything

But sometimes
Like now
That's just not how it feels
And I wail till I'm bone dry
Bone dry

 

 

 

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

Intimacy with Friends and Forests

Part of a blue lapis lazuli ball on a brown background, slightly out of focus.

Part of blue lapis lazuli ball on a brown background, slightly out of focus.

I sink into my body, and it feels like sinking into the moist brown soil in a redwood forest, full of fungus and forgotten redwood needles, and plants, and decay, and life, all at once. I may have left the forest in body, but in my soul it’s right there. Waiting for me to deepen and put down roots.

I can feel every joint in my body as I curl up in a ball and lie on my side. They ache, but also say hello to me, tell me I’m alive, their voices  indistinguishable from the aching.

I stretch my senses out and out and out. I don’t know how I do it. I don’t even know exactly what I’m doing. I just know that even though my bed is my permanent home these days, seldom left except for doctor visits, I’m able to connect to the world more thoroughly than I ever thought possible. I can become the floor of a redwood forest or the sun hitting a granite mountainside. And I can see what most people can’t. Aspects of the world I know some others can see, but seldom talk about? Because how do you describe it? How do you explain it to anyone who isn’t already aware of it? I don’t know.  These things are as ordinary as rocks, they don’t need to be put on a pedestal. But they’re so central to my life I have to talk about them.

I have a doppelganger of sorts. Sometimes it feels like the two of us are branches of the same thing,  connected at a fork. But if I follow the branch back to where we intersect, I can be part of her as well. I can feel the world from behind her eyes.

I love to do it when she’s concentrating on something she loves. She becomes so focused and so delighted, nothing else in the world exists. Other times, though, after a long day at work, she feels buzzy and confused, like her brain just wants to take a nap. I am so glad she works with feral cats. She does so many things I’m not able to do. But I experience them through her, and doing that relieves me of any regret that I’m unable to do those things, as me. It feels like I can do them as her, and that’s enough.

This sounds bizarre, but I’m told by people who know, that there are levels on which identity doesn’t work how people think it does. Maybe it’s really possible for two people to be part of one whole.

It would certainly explain other experiences I’ve had. Where I connect to the world in just the right way at the right time, and suddenly I’m having the experiences and emotions of a mother who lost her child over a century ago. Or even stranger, I slide into the collected feelings of everyone who has ever had a certain experience. It hits me hardest when someone murders an autistic child, and suddenly I want to tell the world that we were there, we saw, we knew, we understood what nobody thought we could… except who is we? I slide in and out of those experiences without trying, and the anguish  becomes mine for that moment before I’m just myself again. I’ve talked to other autistic people who experience the same thing after one of us is killed. It’s involuntary and heart-wrenching.

But when I connect to her, it’s not by accident. I know how to find her. It’s like placing my fingers ever so lightly on a filament too thin to see. And then pulling backwards ever so slightly. And letting myself be guided slowly forward. To the point where we connect.

I do it when I want to check in on her. I do it when I am too weak and too tired to communicate with anyone else, in any other way. I can touch her and know that she is real, that she is out there, that she knows I am here and recognizes how I feel at that moment. I do it almost instinctively when I am in unbearable pain. I touch her mind and she touches mine back, like holding hands with me only without the overload and exhaustion of having someone in the room. And in emergencies. True emergencies where I don’t even know if I’ll pull through. I reach out without even trying, from the stretcher in the ambulance, and she contacts my friends to make sure her instinct that I was hospitalized is correct. She’s never been wrong.

Being around her is like the best parts of being alone and being near someone at once. We can communicate with each other about things that we don’t have the language skills to tell anyone else. We can tell each other things that are impossible to talk about without shared experiences. We know each other as deeply as it is possible to know anyone. And yet we have clear boundaries, we don’t bleed into each other in an unhealthy fashion, we are connected at the core yet separated on the surface, as it should be.

And I lie here curled in a ball, leaning my side on the upward tilt of my hospital bed. I don’t have the energy or cognitive ability to write, to put things into words. But I can hope that at the right time, the words will come and I will be able to describe the inner life that is so hard to explain or describe to anyone but her.

I soak in the night, as I soak in the earth. I reach out into a blue place. A deep shade of blue that glows like the sky above the beginning of a sunrise or the end of a sunset. I’m told that shade of blue has a meaning, but all I know is I catch it hanging around a lot, and that it’s a powerfully good part of the world. Sometimes I have dreams where the entire sky is that shade of blue, and they always seem amazing and important. I try to incorporate it into my paintings.

A lot of what I do at times like this is listen to the world. Listen to it with my bones, even the pain that runs through them seems to enhance my ability to listen. I don’t listen with my ears, I listen in ways that don’t have words. They feel like the forces of gravity, pulling in directions, as if my bones have been replaced by magnets. I listen in gravity and color and in the ability to lose myself inside of things, places, and people.

This is my first language. All of my early memories are of textures, gravity, movement, and colors, blending together. When I was very sick and hospitalized, I had a dream that told me to go back to that, to listen in that way, to root myself in those early experiences of the world and keep going as far as it could take me. So, when I remember, I do. I sink into my body and I listen to the world, I feel its movements inside me, I see color and texture. And most of all, my entire body feels connected to the rest of the world in such a deep way that there aren’t words for it. I can feel where my place is, where I belong, and that I am there all the time.

I prefer not to give these ways of experiencing the world a lot of words. I don’t even bother explaining how it works, other than that the world is different than many people think it is, and that my best mode of thinking and understanding is perceptual rather than conceptual. But I know these things are real, because other people who experience the world as I do feel the same textures and see the same colors. When I connect to someone, they know it and we talk about it. So whatever else this may be, it’s more than imagination.

And for me, is one of the most important things in my life. This is where I get my strength. This is where I get my sense of connection, of having a place in the world. This is where I go when I’m too exhausted and in too much pain to do anything else. This is how I have come to know that my body is me, not a thing separate from me that I fight with. And this is how I know that I am much more than my body at the same time. That identity, time, and a lot of other things, don’t work the way people think they do.

This is how I know that however else I feel about them, my disabilities are deeply embedded in my individual body, in the physical manifestation of my existence. They are not tacked on as an afterthought. And they are sometimes deeply involved in how I do this. My ability to see the world from this perspective at all is deeply connected to the traits that get me labeled autistic. Sinking into my body like that means constant awareness of pain, of things struggling to function but not always managing. Being bedridden for years has somehow enhanced these abilities, and so has encountering death up close and personal.

Speaking of death, I could swear that as a young adult living in the redwoods again, my surroundings talked to me about it, in their own way. About how when you die, all these different life forms live off of you. Bacteria, fungi, plants, animals, trees. They all eat you, and you become a part of them. And in being part of them, you have been absorbed into the rest of the world. And there’s something profoundly beautiful about the way that death is part of life, and life is part of death.

And that is why death holds no fear for me. But for now, I am alive. And I sink into my body. And joy is as deep and physical as pain. And they are as intertwined with each other as life and death. I feel my way towards my friend. I feel her focused delight in existing. Then I feel the sun on the granite, as if I am not me, but some combination of sun and granite, right where they intersect. I feel the sturdiness of rock that is part of mountains. I feel things that have never been given names, gravitational magnetic forces tugging deep in my bones. I never feel as if I leave my bedroom. I am firmly anchored right where I am, no matter what I feel, I feel it here. But I feel like I can touch other places, other people, without leaving this place.

So I am curled up, leaning against the tilted bed. But I’m also curled up leaning against the base of the enormous redwood known to people from Redwood Terrace as the Mother Tree. I hear singing, without hearing a sound. And besides its normal colors, the tree is also a shade of lavender that exactly matches my amethyst ring. And also transparent to a light so clear it’s invisible. A solidness sinks down into my bones. I stay there until I fall asleep.

My Head Is Wrong, But Things Will Be Alright

I did more today and in general this week than I should. Too much exertion. Too much work.

My skin burns everywhere.

The world is shimmering. There’s a background flicker. Then there’s orange and yellow shimmery spots everywhere.

My ears are ringing in a very high pitch that nothing can block.

My tongue is weird.  It’s poised for verbal tics. Poised in a highly unpleasant way. But there’s no words or noises. Just the threat of words or noises.

But there are words in my head. Or ideas, just before they get formed into words. They are flooding every which way.

My head is buzzing.

All the above things are connected together, part of the same whole.

So the words flicker and the flickering buzzes and the buzzing is orange and yellow and the orange and yellow are made of words and three words burn.

Please stop please stop please stop.

This is not me. This is me, lost. This is me, lost in the world of words. If it would only be quiet and still again I would be me.

This is the world I lived in made my own barged my way into no matter the pain, from the ages of approximately seven to twelve.

And then and then the words fell apart and everything was fragments and I was picking up the pieces.

But I was just that much closer to me?

At least now it is only minutes hours days instead of weeks months years.

I finally find it. .

I tell my mind to be silent, to stop telling itself stories, the lies we all tell ourselves about the world.

Silence.

Silence.

Silence.

These things are not me.

They are outside me. Bombarding me. But the prickly burning ringing orange words are not me.

I tell them to leave.

They have no place in my mind. My home.  My life.

My brain does not need to accept this world of words, let it worm its way into my head, tell me how to feel, how to live, how to be.

It’s an intrusion into my life. Not a thing to aspire to or identify with.

But I have deep roots in places no words can go. And those give me an immunity to the kind of words that exist only to delude and invade.

Those words can’t touch me.  They can’t even see me.

If I reach down far enough I am made of clarity. I am made of joy.  I am made of strength. I am made of love. I am made of silence.

Silence.

That’s what matters.

Silence.

On Writing (circa 2005)

I am weak
I cannot hold up my head
Nor type without my arms supported
The effort of movement
Clashes with the effort of words
Clashing again with the effort of thought

When I move
Thought comes in formless swirls
No longer the crystalline clarity
That comes with stillness
I grasp at the remaining fragments
Struggling to piece them together
And turn them into words

I cannot predict my body
As it shifts from stiff to limp
From rhythmic movement
To rigid stillness
And staccato jerks
It gives little warning
And no apology

Luminous clarity changes suddenly
To searing pain
Detail beautiful enough for tears
Passing an invisible threshold
Soundlessly shatters
Laser-sharp focus
Giving way to electric fog

I am a collector of fragments
That sit within my mind
Weeks, months, years
Before settling into their places
In the patterns of my thoughts

I write as a historian
Not a reporter or newscaster
My specialty is remembrance
Not narration

My mind can burn
With the desire to tell it as it is now
The drives of a writer and a poet
Clash with the mind of an observer

I pound my head and wordlessly yell
As if this will hasten the process
That changes experience to thought
Thought into words
Words into movement
Intricate lines that branch
On the shell of a tortoise
Marching in a straight line to the sea

But my body does burn
With the effort of this chronicle
Eyes flash on and off
And words recede
Head rocking from side to side
Legs undulate unbidden
Fingers flick rather than type
Fragments collect again
The poet flees

I struggle now
As words dissolve on all sides
To adequately display
The meaning of fluctuation

Easy would be
To call this hell
Torture, imprisonment
To evoke the overlay
Of several shifting principles
Unsynchronized with each other
With their abhorrence of change
A body here, a mind there
Each sense broken into pieces
Jagged electricity interrupting
As I burn in unceasing pain

Too easy it would be
To acquiesce
To end with this description
As the inevitable flood
Of my internal rhythms
Drowns me out
As I try to shout over the waves
That shift through my mind

That I see waves and the poet
The rhythm and the cry
The weakness and the beauty
The struggle and the change
The fluctuating movement
The lines on the shell
Unpredictability and pain

I see them
They drown me out
They propel me
I shout over them
That I can’t see the tortoise
Without all of this
And as such
This must all be my home