Return to sender: no longer at this address

My mother is a wizard with plants
I kind of knew it already
But when my father was upset
Because he'd never see the morning glories
Bloom again in his life
My mother secretly coaxed
A morning glory vine
Out of season
To bloom, and climb, to bloom, and climb
And she took him outside
To show him the magic she'd done
And that's how much my mother loves my dad

My flowers are my poetry
I coax the words to bloom and grow
And climb and climb into his heart
Even out of season
I use words to express the wordless
And that's one kind of magic I have
And that's how much I love my dad

But one of these days
I'm going to write a poem
It will be full of obscure mountain lakes
And treks across the mountains to the sea
And forest floors that were so much more
And owls hooting up in the trees
It will show him every place
That I could feel his love
Without the emotional bombardment
Of living in the city

And it will be a perfect poem
For that time and that place
It will certainly be better than this one
It will show him that I care for him
(As if he doesn't know by now)
It will show the depth of love
That death can dredge up when you're lucky

And then i will get a phone call or an email
It will start out:
“Go and take your dexamethasone right now.”
And I'll have a sinking feeling
But I'll take the syringe of steroids
And put it in my feeding tube
Then go back to the phone or the computer

Then they'll say
“The news is bad
Your father has passed away
He was far too tired this morning
To check your blog today.”

And all that's left of my magic
Will be words on a screen
Words he may have understood
But will never hope to read

From that point on forwards
We'll be separated by time
We both will have existed
But from that point in time onwards
I will be here and he won't

I wonder how much dexamethasone it takes
To avoid adrenal crisis when your dad dies
I wonder how much magical love it takes
To stand the pain you feel when you realize

That you will never talk to him again
You'll never hug him again
You'll never sit next to each other
With an elderly cat spread across your laps
You'll never ask the questions
You forgot to ask when he was alive
You'll never play with his beard again
And there's so little time
There's so little time

But I'm wrong
Like people are often wrong about time
Eternity is all around us
That's all the time in the world
Eternity is where love exists
Outside of time and space
So even if he never reads my best poems
He'll feel the love that went into them
Just as he feels the love
From that morning glory vine

He feels the love from his two pet dogs
He feels the love from his wife
He feels the love from his three adult children
He says he's lucky to be surrounded
By so much love

So I'm terribly sorry, Ron
If some of my poems don't reach you in time
And i'm terribly sorry Ron
If I try to Skype you and it turns out you're gone
Just know I love you more
Than even the best poet can convey
I love you more than I could ever say

And love is the magic that made my mom
Able to grow those morning glories
And love is the magic that makes me able
To write poems daily after years of dormancy
And love is the magic that connects you to me
It's the way we can feel each other's love
Without any form of contact at all

I hope the place I built for you outside of time
And filled to overflowing with my love
Will see you through

And I hope that I'll continue
Writing poetry to you
Long after you've gone

And I hope it reaches you in Eternity
Or wherever it is you're going

And I hope that even the worst of it
Conveys this message:

I love you
I love you
I love you

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.

Haunted by the Living

I feel like I’m wandering
Through an empty house
And even though the place
Is completely barren
I can feel the presence
Of whoever just walked out the door

I don’t know how I got here
I don’t know how long till I can leave
The walls are white
The only thing that moves
Are the thin gauze curtains
In a breeze that I can’t feel

And I know someone was here
More than one, maybe five
But they walked out the door
They’re not here anymore
But I can feel them

I can feel where they used to be
The places they used to walk
The places they sat down together
To eat, to talk, to play, to be

They’ve left behind a breeze in my mind
That blows the curtains when I think of them
I don’t even know who they are
Or where they are now
But they’ve left themselves behind
Inside these rooms, inside my mind

And I’m left to wander in their wake
And wonder why I’m here
Wherever here is when it seems to be
Haunted by people who are still alive
All the rooms are white
And the breeze is the only sign of life

I sit down on the floor
To stop myself from wandering
I reach out my hand, in my mind
And I can feel you take it

And as I lie here on the white floor
Of the white room of the white house
With the white curtains
In the invisible breeze
That connection
Will have to be enough
For now

When asked to choose between politics and friendship, I choose friendship.

[Note: There are disability slurs in this post, and I deliberately chose some of the worst ones I could think of (as well as some words that can be offensive but aren’t slurs), in order to make the point of exactly how much I will choose friendship over politics.  So don’t read it if the r-word and such are going to upset you.]

If
And only if
You have the deepest love in your heart
And the deepest respect in your bones
Then
You can call me retard
And I will not be offended

If our every interaction
Shows that your respect for me
Has deep roots
That dig into the soil
And bring up clear water
To nourish both of us

If our every interaction
Shows you serving us tea
Made of the water of life
Steeped in love
For as long as it takes

If the music of life
Makes us resonate
Down to the very bones
As if whoever made us
Made our bodies sing
In perfect harmony

Then it’s okay with me
That you talk about my disabilities
As a tragic personal obstacle
That I am brave to overcome

And it’s okay with me
That you call me words
Like retard, and cripple, and idiot savant

And I would rather spend time with you
Oh how I would rather spend time with you
Than someone who has memorized
The list of ableist words
And directed the community to shun
Anyone who says them
Especially the worst of them, retard

I would rather spend time with you
Than with the people who shun you
Gladly and openly
Happy to have a target for their anger
At an ableist world

And understand
To me the two worst words in the world
To call a human being
Are retard and vegetable
And yet I would let you call me those things
And prefer your company
To the company of some people
Who understand all too well
The destructive power of those two words

Make no mistake about it:
These are words that draw blood
They are words that kill
They are words that have already done
More killing than you could ever imagine

I don’t deny
That when you say these words
They strangle me
They threaten to leave me for dead
They draw blood
They punch me in the gut
And you are oblivious to this

But when people shun you
They are saying
“You are a bigot and I am not
Because I hide my bigotry
Better than you hide yours.”
They are saying
“I have the skills to look shiny
And you don’t
Nanny nanny boo boo
I’m the winner
Of the social game.”

Every person I have ever met
Is a bigot in some way
Every person I have ever met
Has viewpoints
That cut, that punch, that draw blood
Even that kill

The people who can hide that side of themselves
Fare better in these parts of the world
That I seem to frequent lately
They can play the social game
They can land on top
Even if they have not an ounce
Of love or respect
In their hearts
Or their bones

Nobody announces to the world
“Here comes an ableist bigot, shun them!”
Even if they are more bigoted than you
And less loving and respectful

You are one of those rare people
Who allows hard-core love
To flow through you
And influence everything you do
Who roots their every action
In respect

But you don’t just say the wrong words
You say the worst words
The words that even I agree
Are terrible, bone-crunching slurs
That rip my heart out of my chest
Still beating
Words that tell me
I may be in mortal danger

So nobody can see your love
They are too busy seeing the slurs you use
To see who you are

Yet still, I love you
I can’t help loving you
Your love and respect
Nourish both of us

I don’t ask anyone to feel sorry for you
I don’t ask anyone to excuse your bigotry
I don’t ask anyone to like the words you use

But I would ask some questions:

Why are you worse
Than the people who
Erase the word retard from their lips
But not from their hearts?

Why single you out
When every last one of us has opinions
That draw blood, that destroy
That maim, that kill?

Why target people for community shunning
Instead of looking inwards at ourselves
And our own secret bigotries
That we are loath to change?

Why do we measure people
By their ability to not do something
That signals bigotry
On a shallow level
Rather than
By their ability to do something
That signals love and respect
On a deeper level?

You have clasped your fingers
Interlocking with my fingers
And formed a connection
That stood against a hostile world

You have stood in front of me
When other people threw rocks
You have taken beatings for me
And made sure nobody forgot
Not to mess with you

You have proven to me
That I can trust you
With my life

You have proven to me
That I can trust you
With the words
That normally take my life away

Retard Vegetable Cripple Psycho Lunatic
You can say them all
And I will trust you
With these verbal weapons
Of mass destruction

I will trust you, you saying those words
Over those who would never say those words
But would never stand in front of me
To take blows that were meant entirely for me

I will trust you, you saying those words
Over those who would never say those words
But would never touch me
Much less clasp my hand in love

I will trust you, you saying those words
I will defend you, you saying those words
I will not desert you, you saying those words
I will not shun you, you saying those words

I will not participate
I will simply not participate
In the way my community treats people
Who say those words

Because there is always context
Because sometimes that context involves
Love
Self-sacrifice
Protection
Respect
Inner beauty
Connection
Community

And all of those are more important
Than words
No matter how much blood the words draw
No matter how much they hurt
No matter how much suffering and death
They may be connected to

I will not participate in social sanctions against you
I will not make it clear to every passerby that you embarrass me
I will not apologize for your behavior
I will not renounce our friendship

Maybe nobody understands
Maybe nobody needs to —
We have something
Much more deeply rooted
Than the worst slur
Could sever

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

Curl up, curl up so tight

Curl up, curl up so tight
Curl up so tight, that you curl in the night
And the night curls down inside you
Like an owl wrapping her wings around herself
Eyes wide open and ready to fly

Curl up, curl up so tight
Curl up so tight that you curl in the earth
And the soil fills your body
Like mycelium spreading itself through you
Waiting to release its spores

And the spores release and the owl flies
And you remain curled up so tight
Your eyes squeezed shut against the night
That when the light turns your way
It takes you by surprise

I curl up, and I hand myself to you
Because you’ll know what to do
You know what marona is
You’ll know when to hold me
On the palm of your hand
You’ll know when to set me down
Carefully so I don’t break

You’ll know when you hear the owl
And smell the soil
And hear the silent music
That I’m here with you too