Summer Balloon Mind (2004)

Forgotten fireflies in the dark
Dew shoved hot into my face
The balloons and my mind
Soared high with a short tether
Air thick with the certainty
Hypnotic draw of the unspoken
But alas, not the unspeakable

Punched holes in a muggy brain
Thrust and pinned against a tree
We bounced against the branches
Searched up in the sky
Flitted with the air currents
Chased the misty mirages
Never expected the sun

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“Good” Institutions (2004)

The visitors came and talked today
About how wonderful this place was
No bars on the windows of this cage
Sparkling walls showed no shit or blood

They said everyone was treated well
The food was fresh and tasty too
The people could walk outside if they want
And then get better and go home

They extolled the virtues of this place
In language amazed and sickening
For it held its secrets, just as dark
As any torture chamber you’d know

How do I know this? Because I heard
It all from my table in the back room
Chained and drugged — invisible —
For the comfort of visitors everywhere

The Singing Tree (2004)

She said the ocean, she was sure
We retraced our steps down the rocky cliff
Stars staring down pinpricks into my head
The human condition, she said
The fog obscured my frantic blundering
World whirling in the rain at the top of the tree
We sang a wordless melody
The air sang back to us
She said the ocean, but I was sure the tree
Dug roots into our hearts

Everyone’s secret the same (2004)

Mind-secrets blow through the air like dust
Secure but surprisingly uniform
Some fly through the cracks of universal masks
Some sink through crevasses of fear
People wander in, exploring the twists and turns
Grasping at the dust, forgetting plain sight:
The biggest secret, no secret at all
Waits patiently under our feet

Taut, searching minds
Huddled at a run in artificial dark
Turning at breakneck speed
From what they fear the least

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.

Tube Love

Drawing of a GJ feeding tube.

Tube Love

Its name in medical-ese is a gastrojejunostomy tube
Or a GJ tube for short
I just call it The Tube

Through nothing more than some tubes
And a syringe
And a feeding pump
I give myself water
I give myself food
I give myself meds
I give myself life
Bypassing my paralyzed stomach

I drain out the life-destroying bile
That would otherwise suffocate me
In pneumonia after pneumonia
Until I eventually got unlucky and died

There are no words for the feeling
Of giving myself a big syringe of cold water
On a hot day
And feeling every inch of it go
Cold
Into my intestines
No stomach to hold it back
No stomach to vomit it up

Maybe the word is love?
My tube is not an inhuman machine
It is a part of me

If love means that you take care of someone
If love means that you save someone’s life
Without thought for your own
If love means that day by day, you do the hard work
Without complaining or tiring
Even when you get clogged up and miserable
Then surely my tube loves me

And I love my tube
It has a personality
It’s grumpy on some days
And happy on others
I try to make it happy

I know more about making a feeding tube happy
Than any of those doctors and nurses
From Gastroenterology
From Interventional Radiology
From Pulmonology

They said I had the mind of a child
That I would pull my tube out trying to play with it
The way young babies do with their feeding tubes
They said I didn’t have the cognitive capacity
To take care of a feeding tube
They said I would fail
They said I would be better off dying
Than even trying the feeding tube
And above all, they said I wouldn’t know
How to take care of it
That it would be a huge burden
That maybe, I belonged in a nursing home
Where they knew how to take care of things like that
And people like me

I just got out of the hospital
The nurses were amazing people
But they nearly ruined my feeding tube
They didn’t know how to make it happy
I’ve been to Interventional Radiology enough
To know that they don’t know the slightest thing
About making a feeding tube happy
Not even the doctors who predicted my doom
Know how to make a feeding tube happy

But I know how to make a feeding tube happy
I have been learning for a year now
Every day, I learn more
Every day, I learn that
If you treat something as if it is alive
And you treat it with respect
Then it will be happier
And it will work better
And it will like you in return
Maybe even love you
And it will give you
Everything it has to give

I love my feeding tube
And my feeding tube loves me
My feeding tube takes care of me
It keeps me alive
It works hard all day long
To keep food and meds and water moving smoothly
And I work hard all day long
To make sure it has the resources to do it with

My feeding tube and me are friends
My feeding tube and me are a team
My feeding tube and me like each other
My feeding tube and me love each other

We have a relationship
My feeding tube and me
We are connected intimately
It is not just a piece of plastic
It is a life-saver
It brought me back from certain death
How can I fail to love it?
And how can I fail to interpret its efforts on my behalf
As its own kind of plastic cyborg love?

I love my feeding tube
I will always love my feeding tube
I don’t care how it sounds
I don’t care if anyone understands
You can’t go through some things with someone
Without finding love there
And with its fate intertwined with mine
Its plastic intertwined with my stomach and intestines
Love is what we’ve found,
Me and my feeding tube
And I will always find ways
To make it happy

Art and poem by Mel Baggs, art 2013, poem 2014.  This is my contribution to Gastroparesis Awareness Month (August).  To learn more about Gastroparesis and related forms of Digestive Tract Paralysis, go to the G-PACT Website.

I also wrote a longer and more serious post about my life with gastroparesis, which you can read here at Gastroparesis Awareness Month: A Day In The Life.

It’s scary to let go of words, when you’re trapped inside them.

Because there’s a moment when you’ve let go of the words
And you realize that once you let go, they won’t come back
And you’re hanging in the air between the words and the ground
And you don’t know how high you are in the air
And you don’t know how hard you’ll hit the ground
Or how many bumps and bruises that will cause
Even though you always feel better with your feet on the ground
And you desperately, desperately want to be on the ground smelling the earth
But you’re afraid to fall
And you’re afraid to hit
And you’re afraid how much effort it will take to get back in the air
Or whether you can get into the air at all
So you cling and scrabble
Until your fingers break
And you hit the ground fifty times as hard
And stay there fifty times as long
Too stunned to take in
Everything you normally appreciate
About being on the ground

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
broken
difficult
damaged
destroyed
nonexistent
unfeeling
uncaring
noncommunicative
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
Not
Ever
Again

Love Be With You

What do I do
When I know anything I say to you
May be the last thing I ever say to you
But at the same time
I never know
Which day will really be the last?

How do I say goodbye
When I don’t know if this time
Is really goodbye?

How do I know what to say
When all I want to do
Is crawl into your lap
And play with your beard
Like I did when I was too young
To know what goodbye meant?

What do you say
When you know this time
One of these times
Goodbye will be forever?

Goodbye — short for
God be with ye
And that much
Is appropriate enough
Love be with ye too

The Name of a Tree

If you want to know the name of a tree, you’ll have to listen with more than your ears.  Human is not a language they speak.  You’ll have to listen with parts of you, you never knew you had.

Feel every groove in its bark.  Trace its branches against the sky.  Listen to its leaves or needles rustling in the breeze.  Sit in its crown with your back to the trunk and feel the way the wind blows each branch.

If you want to know the name of a tree, don’t ask me — it can’t be pronounced.  The name of a tree can only be enacted by that one particular tree.  It spends its whole life shouting its name to the world.  Shouting it loudly, shouting it quietly, shouting for anyone to hear.  It’s a rumble beneath the earth, a whooshing against the sky, a creaking, a subsonic rattling cry.

And once you’ve heard it?  You’ll never forget for as long as you live.  And you’ll learn to listen to the names of other trees.  You might move on to rocks and boulders and mountains.  Or tiny specks of sand.  You’d be surprised how much of the world is shouting its name, and how few people stop to hear.