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

 

 

 

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Not over there. Here. (2004)

I saw an outside world
Filled with ideas and people
Who treated me as if I wasn’t there
I dug deep into my mind
Crafted words with my bare hands
To tell the world:

I am here.
No, not over there.
Here.

Those who noticed at all, told me:
You are not trying hard enough.

No, no.
Not over there.
Here.

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.

Delirium

I am curled in a ball
Like a seed that has
Never been born
Nor had the chance to grow

Waiting in the netherworld
For what?

It’s impossible to know

I remember a time when I had fire
And the fire was the blood
That coursed through my veins

But now I am only water
Only floating
Only wondering where I am

I tried to get up and walk
But everything around me was white
I couldn’t get my balance
And when I fell
The falling never stopped

I climbed out of that world
Using only my fingernails
But the underworld still clings to me

I am a pomegranate seed away from you
Just one seed away
But it may as well be a canyon

In the Sea of Nun

You told me I didn’t know what water was
I told you, “There is more to the sea of Nun than you could ever guess”
But you told me words were the only way to wisdom
Do you know what life is like floating without fins or flippers to move yourself from here to there?
Do you know what it is like before those words you hold so dear?
Have you been blown around in the currents?
Have you had to make your life wherever the water took you?
I may have seemed like a sleepwalker to you
Without the parts you use to guide and steer
But part of me has always been wide awake

I sit alone, and time is gone
You come in, and turn into a blur of movement and sound
I am like a statue watching living people fly past
But when I’m alone, time stands still for me again

In between your words is silence
In that silence is the world
Beneath all your ideas things come together on their own

I am awake when you call me asleep
I have a voice when you call me silent
I can navigate where you see only chaos
(In the waters of Nun)

The lines are twisting underwater
I feel them spread and branch away
They twist around the corner
They wrap around me sideways
They double, triple, even more
They slide around and up and down
And still it all makes sense to me
Or maybe it makes me to sense
Either way this is my home
And there is life in the sea of Nun

One day I woke up
There was more than the sea
There was a strange place
I found myself there
I didn’t go there
Make no mistake
I just was here then there

How can I describe it?
You have always had a ghin
What is a ghin?
It’s what you’ve always had
I don’t have a ghin
Something else was built
But how can I describe the building?

You have a ghin
You can never know the steps it took
I didn’t build it
It built up like collecting dust
So the dust settled on me
More dust
More dust
More dust
More dust
Eventually the dust hurt
And more dust
(Ow)

And then a mound of dust
A mound shaped a little like a ghin
But it was not a ghin
I will call it a foom
My foom tried to be a ghin
It had not the. of a ghin
And the foom hurt
And the foom hurt
And the foom hurt
And you said “She is alive, she has a ghin”

And they all danced around
They looked at the foom
They touched the foom
They said “She is alive, she has a ghin”

“Where did she come from?”
(He pointed to the sea of Nun)
“Oh surely not there”
“Nothing from there is alive”
“Nothing from there has shape”
“Nothing from there is real”
“Nothing from there has a ghin”

They set me in the shallow water until I floated
They poked me with long sticks
They watched me bob around
They laughed

I felt the currents underneath me
They could not feel those currents
To them there is only chaos in the sea of Nun
They saw the part of me that was above the water
I lived in the part of me below

And they pushed, and they pulled
And I floated side to side
And they clapped, and they laughed
And the sea of Nun became my tears

I stopped moving
They threw a rope and pulled
I washed up on the shore
They formed a circle around me
Then they drilled me full of holes

They filled each hole with a different machine
And they whirred and they clacked
And I buzzed and I bounced
But the machines all fell out
So they pushed me back in the sea of Nun

And there I stayed and there I dreamed
And there the currents pushed me round
And there I drifted, there I slept
Until I grew flippers