My Last Refuge

Dedicated to Ernest, Blanca, Vanesa, and David.  I hope you all made it out of institutions one day, and that you’re alive, and maybe even happy.

I hid my awareness from you
Because I knew if I gave a response
You’d abuse me more.

I hid my awareness from you
Because I’d seen what happened
To those who came before

I hid my awareness from you
Because restraint is known to be the worst
Physical trauma for an autistic child

I hid my awareness from you
Because I feared looking into your eyes
Inches from my face, so I stared through you

I hid my awareness from you

Because my mind was the only refuge I had
That you had not yet stolen from me
By tackling me to the ground and sitting on me
For the sin of not moving when told
Yes, my mind was still my refuge
And whatever it took
Whatever it took
I was not about to let you in

So you put your eyes as close to my face as you could
And you tried to force me to look into them
I looked through them
I pretended you weren’t there
I pretended I existed in a different world
A better world

A world where children weren’t strapped down at night
So that the night nurse didn’t have to bother with them
A world where people who showed fluctuations in their abilities
Were not accused of manipulating staff
A world where people whose entire bodies resisted invasion
Were not invaded anyway and then blamed for the results
A world where a tiny little autistic boy didn’t run into my room
Every night, silently pleading me to make the staff go away
So he wouldn’t be tied down for the night
A world where I didn’t have to listen
To what staff really thought of us
Since they gossiped in detail about patients
Right next to the isolation rooms

You got right in my face
So close to my face that one adult doing it to another adult
Would be seen as an act of aggression, even assault
And you demanded that I join your world
Demanded that I at least acknowledge your world
I refused

And the more you tried to force me to join your world
The more determined I was to get away

You called this manipulative
I called it survival
The first of many definitions
We would never agree on

The Watcher (circa 1995)

She leads me down the street
And lets me watch the people passing
Lets me look into their eyes
As we walk on

I see glimpses of their worlds
Each immense beyond describing
I reach out but she pulls back
And we are gone

She bids me not to speak
For to do so would ensnare me
And drag me into their worlds
To lose the light

My mind wants to explode
With the weight of all the people
But she will not let it show
Our face is tight

So submitting I walk on
Leaving all the worlds behind me
Never knowing if just one
Would understand

And while facing straight ahead
I hope one will recognize me
And break through their own disguise
And take my hand

[Posted because it explores some of the same themes as my last post, and I’d forgotten I wrote this at all. The ending is different because I was young and still very much in the grip of this, rather than an adult looking back.]

Afraid to Exist

I saw myself and shook from head to toe
I heard my voice cry out from deep within
I ran away, I couldn’t bear to know
I chose to think existence was a sin
I wanted to join in with all the world
The smells, the tastes, the textures called to me
Around my hand, another’s hand was curled
She told me I would drown if I was free
So interest was forbidden from my face
Lest someone notice I was still alive
I stayed afraid to join the human race
Lest I be carried off by ocean tides
     One day the tide did sweep me out to sea
     Instead of being drowned, it set me free


Awe is where wonder and fear collide
And we stare out to the stars meeting the sea
And we wonder is there a place in this world for me

Awe is where my heart turns into a stone
A living, pulsating stone of many colors
That move out of the way to make room for each other

Awe is where the stones meet the ocean
In caves that took millions of years to erode
And my body tells me this is your second home

Water and earth can mean so many things
The soil of the redwood rainforests
The stone caves carved by water seeking the sea
The river rocks with holes all through them
The monsoon season in the desert rocks
The rivers carving canyons
The tiny creeks wetting tiny amounts of soil
The springs of water flowing out from in between the rocks
Waterfalls crashing down with caves behind them

And all of these things are sacred to me
And all of these things are part of me
But the one that means the most
Will always be the soil in the redwoods

Awe is where wonder and fear collide
I am where earth and water unite
I am in awe of the collision
I am in awe of you and of me
We are made of the stuff of the earth
We are made of the stuff of the water
I have only to look at you
To see a metallic daughter
With the earth kept tight inside
Like a vessel full to bursting
And I have only to look at myself
To see moistened soil from the forest floor
And I could see even more
The plants that grow, wither, and die
And decay to become part of me
The wind with a sigh brings down
Dead redwood needles and cones

And it doesn’t matter where you go
Or who you are
You have only to look at the ground
Below your feet
Or up at the stars
The clouds roll overhead
A thunderclap hits a little too close
And that beauty and awe is back
But you’d better run home

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




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

When we died, we found each other.

I was there
I was there and I felt
Your hands around my neck
Hands on my chest pushing me underwater
Tying me into the car and starting the gas
The hot poker
The bullet
The knife
I was there and I felt
Where is the air
Why isn’t my body working
Why can’t I get air
That overwhelming hunger for air
And then…
And then…

But I was there and I felt

The one person I was supposed to trust more than anyone in the world
And she abandoned me and spat my love back in my face

And I was there and I felt

The one person I never trusted
Even though everyone else said she was a saint

And she was a saint because of me
She was a saint for putting up with me
She was a saint…

…because the only person who would spend any time around me
the only kind of person who would ever want to
the only kind of person who could care for a person as
as me
would be a saint
wouldn’t they?

And since only a saint would take care of me
Then it could only be expected
It could only be expected
That a normal person
Could never handle
The burden
Of a person like me
(and therefore)
That it’s understandable
It’s understandable if
If someone would
Just want
Me to die.

My suffering was over, they said at my funeral
(When I even got a funeral, which was not always)
My mother was sentenced to
Five years
Fourteen years
Twenty years
Of living with me
(Even when she didn’t live with me at all)
She did not need any further prison sentence
For my murder

When I died, I stopped being separate
When I died, we found each other
We found each other
All the murdered disabled children
Cast out of life by those we should have been able to trust
And we held each other
And we became each other
Now we speak with one voice

Understand this first and foremost
No matter what you have heard about us
We loved
We could love
That we could love means
That we felt what you did
We felt it then
We feel it now
We know what evil means
Because we know love

Now understand this:

We were there
We saw
We knew
We understood what you never thought we could

And now we look you in the eye
And in the name of love
In the name of everything holy
In the name of the union we have found
(Which is nothing, nothing, nothing less than the deep universal love that They said we could never feel)

We say

Away (with credit to George MacDonald)

That’s the only word for where I’m going

And I can’t show you the light
And I can’t show you the love

All I can do is become like glass
And hope that through me you’ll see both

I hope through me you’ll see both love and light
I hope through me you’ll see what I see
When I look beyond death
At the back of the North Wind

Don’t be afraid
There’s nothing to fear
Only love
Only light
Only dissolving

Can you imagine what it’s like
To become the greatest love you’ve ever touched
Can you imagine what it’s like
To be everything good in the world

The North Wind told me it would be this way
The North Wind told me not to be afraid
She told me others would fear Her
But I should not
She said my time would come
Like everyone else
And She would be there waiting for me

When She waits for you
The whole room fills with light and silence
She sits by your bedside
Her light chases away
Even the thought of fear
Let alone fear itself:

You can’t be afraid in Her presence
You can’t even remember what fear was
Until She is long gone

Many a time have I woken up in a hospital
To see my whole room filled with light
And the North Wind sitting at my bedside
Patient, impassive, and loving, all at once
She has all the time in the world
And all the place to be there

She told me stories without words
She took me on journeys without moving
She gave me a red scarf to keep my heart warm
In the desperate winter of delirium
She tethered me to reality
When nothing else would

I knew who She was
You couldn’t lie in a hospital bed
With Her sitting in a chair nearby
Exuding light and truth and love
And not figure out who She was

And if you want to keep on living
You have to resist the urge
To stand up and take Her hand
And walk into the light

But when it’s time
And only when it’s time — you will know —
She will help you
And She will love you
And you will become part of Her love
And you will see the land
At the back of the North Wind

If you ask, She will take away your fear
And it will be the most beauty you have ever seen
And it will be the most love you have ever seen
And you will walk into the beauty
And you will walk into the love
And you will walk into the light
And you will become the light
And you will become the beauty
And you will become the love

And when I look for you
I need only look for Love
And that’s where I will find you

Dance partners

Love is life and joy and happiness
And love is also
Death’s permanent dance partner
Neither would be what it is
Without the other nestled inside it
The closer you get to death
The closer you get to love
And sometimes that scares people the most

What can be feared from love?
Only the total annihilation
Of all that is not love
And that’s not just anything

What can be hoped from love?
Only the total annihilation
Of all that is not love
And that could well be everything