My, sie’s really let hirself go…

My foot is cracked and bleeding from the cold
Yet there is beauty in the lines and cracks
My hands are gnarly, wrinkled, leathered, old
Yet every wrinkle hails unnumbered acts
They tell me to be pretty, to want more
“And more of what?” is always my reply
I’ve had a good long life, though I am poor
And poverty has been my shield and sky
I look into the mirror and I see
The greying hair, the laugh and worry lines
That come with living long and living free
For I have no consent to be confined
     They look at me and feel I’ve disengaged
     I celebrate surviving to old age


 

 

 

 

 

[By way of explanation:  I find myself fiercely, desperately, wanting wrinkles and grey hair and all the other signs that I have outlived every prognosis I’ve been given.  Other people fear those things, wanting to look young.  When I am old, every wrinkle and grey hair will be a badge of pride saying “I made it.” I have only recently, since diagnosis and treatment for adrenal insufficiency, begun to allow myself to dream of old age again, and what a beautiful dream it is.]

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The Hardest Question

I struggled hard for air with every breath
She looked just like a grandma, or a queen
When I had ventured close enough to Death
To glimpse enough to know what I had seen
So regal, yet so humble, she became
Yet radiant as lit from the inside
So loving, yet such sternness, all the same
The things that left impressions on my mind
She did not weigh a feather by my heart
She did not feed my soul to any beast
She merely asked a question, one which starts
To show what matters most, what matters least:
     “And did you act from love and only love?”
     And after that, no question is as tough.

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

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.

(You Will) Never Die Alone

Don’t think I don’t see
Sitting in a chair
Next to my hospital bed
A lady with long wild silver hair
And a flowing white dress you can barely see
And light brown skin so paper-thin
That the light shines straight through

Don’t think I don’t know who she is
And what she is doing here
Waiting, keeping time
In case I have need of her

Sometimes when the delirium clears
I feel myself falling into her light
The closer I get
The less strength I have
To resist her in any way

I forget who she is
I only know she is telling me
To lie down and rest
But I am already lying down

And my heart feels so heavy
As it pumps my blood
That it wants to lie down and rest

And my lungs feel so heavy
As they move the air
That they want to lie down and rest

And she tells me to lie down and rest
But I am already lying down

It’s a long night
I fall out of bed
And an alarm blares
And a nurse picks me up
And puts me back in bed
Then I fall out of bed again
It feels like a surreal dance
Of UFOs and strange beeping noises
And I don’t know where I am
Or who I am
Anymore

The pain is unending though
And she tells me to lie down and rest
But I am already lying down

I feel myself floating closer and closer
And the alarm blares again
And the glowing lights of my IV pole
Dazzle my brain

And she tells me to lie down and rest
But I am already lying down

I sleep and dream delirium dreams
Of a forest on a hill full of holes
And even in the dreams
The pain is never-ending
Slowing time to a crawl
And making me wish for escape

And she tells me to lie down and rest
But I am already lying down

Next day, they force in
The biggest enema I’ve ever seen
I have more strength afterwards

And she tells me to lie down and rest
But I am already lying down

And I say no, I will not rest
Because it’s not time yet for me to meet you
I say I have friends who would miss me
Friends who are already scared
Because they can see you
And they know who you are
And I know who you are
And it’s not my time
Not yet
Not now

But I can’t fight yet
I can only vow that once I get stronger
I will fight my way back to life

My secret is I want to rest
I want to lay down
I want to give in
You are so beautiful
And so friendly
And to keep my heart beating
Is so hard sometimes
And it feels like your gravity
Wants to pull me in
And the closer I get
The more I want to rest
I’m afraid it will sound
Like I’m a coward
So for now
This is my secret
Alone

But day by day I pry my way away
From the event horizon
And day by day my strength comes back
And it gets easier to fight my way away

But Death turns to me and tells me
It will never be over
She will always be there for me

She says it like a promise
And then she makes a bigger one:

You will never die alone, my child
I will be there to catch you when you fall
Whether you die on a trail in the forest at night
Or in a room filled with family and friends
I will be there for you
I am always here with you
And you will never die alone
Because my love will fill you
With everything you need
And you will die
Filled with my love
Filled with my light
You will be who you need to be
And I will do what I have to do
For I will always be with you
And you will never die alone

[The events of a hospital admission, 8/25/2011-8/29/2011, for a bowel blockage and a very high white blood cell count.  I was delirious the whole time, but I’m convinced Death was real.]