Cyborg

[this would be spoken word, if I could speak]

I am a cyborg
What, you don’t believe me?
What did you expect a cyborg to look like?
Certainly not a fat, ugly thirty-something is-that-a-woman-or-a-man
Certainly not someone
Who can’t even meet the standards of normal
Let alone surpass them
Certainly not me

But I am a cyborg
I am a cyborg
And I will show you
If it’s the last thing I do
Because I think being a cyborg
Is pretty cool

My first implant
My friends call my Bionic Butt
There’s a battery and controller system
Embedded in my right butt cheek
Connected to a wire
Carefully threaded through my tailbonee
And inserted into the pelvic floor muscle

My pelvic floor muscle is spastic, you see
So I couldn’t pee very well
And I kept getting infections
Physical therapy —
Electrodes on my butt playing video games —
Didn’t help enough

So the controller sends a message down the wire
Telling my pelvic floor muscles to relax
And through the combined effort of the machine
And what I learned playing video games with my butt
I can mostly pee enough
To avoid getting urinary tract infections every few weeks
And that makes me a cyborg
Even if it isn’t glamorous

My second implant is called a GJ tube
Short for gastrojejunostomy
It’s a double tube
G tube for my stomach
J tube for my intestines
Food, water, and medication go in the J tube
Bile and other stomach contents get drained out the G tube
I sleep with a drainage bag on thee G tube
Collecting my bile all night
So it doesn’t go up into my lungs and give me infections
Meanwhile the J tube
Lets me bypass my stomach
Which is partially paralyzed and mostly useless
Because most of what I put in it (or that it makes itself)
Doesn’t get passed to my intestines
It just sits and sits doing nothing but making me feel sick
My feeding tube saved my life
And I love it uncondittionally

My third implant is called a PowerPort
My veins aren’t good
The more I go to the hospital
The worse they get
Until I’m seeing six IV nurses
In one day
Because my veins infiltrate that fast
And they are having to use
More and more obscure locations
Smaller and smaller veins
Veins that won’t take the medication
That needs to go into them

A port is a device implannted into my chest
It is triangular with bumps you can feel through the skin
The shape and the pattern of bumps
Tell doctors what kind of port it is and how to use it
It is connected to a tube
That goes to a deep vein
Almost right up to my heart

They can draw blood from it
They can put medications into it
They can put CT scan dye into it
All just by putting a needle
In the middle of the triangle
And they can use medications
That smaller surface veins
Like a normal IV
Would never tolerate
And I may never again
Have to be poked ten times in a row
To get the right vein
That then only lasts an hour
I was ecstatic when my doctor
Finally said yes
Yes to a port
Yes to the end of the IV torture
We both know the risks
But at this point in my life
It’s worth it

I am a cyborg
Because I am a human
With machine parts

But wait, you say
Aren’t cyborgs supposed to be
Able to do things other people can’t?

Well can you totally drain your stomach
Every time you get nauseated
So that you rarely actually throw up?
Can you eat all day without taking a bite
Or even noticing you’re eating?
Can you take medicines
Directly into your deepest veins?
Can you press a few buttons
And change how relaxed a muscle is?
Didn’t think so.

What you really mean is that
Cyborgs are supposed to be
Nondisabled people
Receiving enhancements
Beyond what they can normally do

Which tells me that you think
Disability is outside the normal human condition
Because if disabled people were normal
Then our feeding tubes
And our central line ports
And our bionic butts
And our pacemakers
And our cochlear iimplants
And our brain-implanted electrodes
Would obviously be what they are:
Cyborg enhancements

When you tell me I’m not a cyborg
You are telling me that my enhancements
Are not really enhancements
Because they only let me do
What you can do already
(Which isn’t even true, bt anyway)
And only nondisabled people
Can be real cyborgs
Because you’re the real people
And we’re the broken ones

You see my implants
As fixing a broken person
I see my implants
As enhancing a whole person
And when it comes to being a cyborg

That
Makes all
The difference
In your mind

But I’m still a cyborg

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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

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