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

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.