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

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

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, sie’s really let hirself go…

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


 

 

 

 

 

[By way of explanation:  I find myself fiercely, desperately, wanting wrinkles and grey hair and all the other signs that I have outlived every prognosis I’ve been given.  Other people fear those things, wanting to look young.  When I am old, every wrinkle and grey hair will be a badge of pride saying “I made it.” I have only recently, since diagnosis and treatment for adrenal insufficiency, begun to allow myself to dream of old age again, and what a beautiful dream it is.]

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 opportunities
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

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.