Sometimes, Restrictions Only Increase Life’s Richness

I spent six years in bed, six years I found
The richness of the love surrounding me
A tree outside my window so profound
From detail comes familiarity
They say that all restriction is a curse
A nightmare from which folks can never wake
But we exalt our highest forms of verse
Like sonnets, which restrict which form to take
And always those who could, would hurry past
Without a glance at me, or at the tree
The richness that they missed, they moved too fast
To see what I and other slow folks see
For life is rich to infinite degree
It’s found in sonnets, and in folks like me

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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

How To Stay Alive

I can’t struggle
As the world fades to white
Can’t remember the way my home looked
Can’t remember my mind
Can’t remember anything
It’s all faded out
Like there’s nothing left of the world

Sleep, the white tells me
Sleep and dream of nothing
Just rest, just rest
Soft and soothing
No need to think
To remember what is wrong
Just rest
Just
Rest
Shhhhh

*

Drowning
Was I drowning?
I can’t even thrash
But I almost remember
There was a surface
Somewhere

*

I struggle to surface
The ripples spread out
And out
And out

Mostly I float
But I almost remember
Something

Was
there
something?

*

The white fades to a dappled green
Above me
Leaves
Sky
And I remember
Now I remember
Now

I remember trees
I remember the clover
Tangled in my hair
I remember
Oh I remember
Everything

*

The world is
Green, blue
Brown, yellow, gray
The white
Has faded to these things

*

I can move my eyes first
Then my hands
Elbows, knees, and toes
Fingers grasping
At the memory
They could never hold

But

I can move
I can fight
I can live

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

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