“You’re one of the stable patients,” they said
As they kicked her to a dingy corner of the hospital.
With the other “stable” patients.
No space. No privacy.
No dignity.
But hey, at least she wasn’t dying.
She waited months for a specialist appointment.
Because she was stable.
Couldn’t work. Couldn’t read. Couldn’t eat if not for the tube in her side.
Couldn’t lift her head.
But she didn’t look sick.
If you ignored the puffy lines on her face
The way she always looked for a place to sit
The look of defeat in her eyes.
But hey, at least she wasn’t dying.
But what, may I ask, is dying?
Because I don’t think this is living.
Laying in bed.
Staring at the TV, but not really watching.
Sorting pills.
Scrolling through tumblr and twitter
Just to know there are others like me.
Making plans
I can never seem to keep.
I’m not living. And what is the opposite of living?
“At least you’re not dying.”
But I am.
I am dying on the inside.
Dying to live my life.
Dying to be independent.
Dying to work.
Dying to go out for drinks with friends.
Dying to hike a mountain
Or ride a roller coaster
Or spend all day fetching coffee for a boss
Bemoaning the life of the underpaid millenial
So I can climb the ladder of success.
We are dying to have new stories to tell
Because we’re running out of ways to say
“Yeah. Still sick.”
With a smile.
Every day we die in so many different ways.
And we know it will never stop.
I will never wake up without pain
Without fear
Of how I will support myself
Or guilt
Because others must now support me.
And I cheer when I see
Charity drives, awareness walks, new medications
For scary diseases
That I am lucky to not call my own.
And yet,
A small, unsettling, unwilling voice
Whispers
“When will it be my turn?”
We’re not dying.
But sometimes
That’s the scariest part.
We don’t mean to be harsh
We don’t mean to be morbid
But this is our truth.
This is our reality.
And part of that reality is softening our truth
For you.
But today
I just don’t have the energy.
This isn’t a battle we can win.
I’m not “strong enough to beat it.”
My illness doesn’t care how strong I am
How stubborn
How weak
How tired.
Illness doesn’t discriminate.
It gets us all just the same.
I’m tired of dying. And sometimes
I fear
That I will be dying the rest of my life.
Look, I know what you’re thinking.
But these words don’t come from a place of depression.
These words are my reality.
And no medication can change that.
I don’t need fresh air.
I don’t need a new diet.
I don’t need a new supplement.
I need funding.
I need research.
I need a damn miracle
Medical breakthrough.
I need a break from this broken body.
But I’m stuck here.
A prisoner
With no chance of parole
Please don’t tell me it could be worse.
I know
It could be worse.
But it could also be better.
So much better.
-The Invisibly Ill
About the Authors:
Catherine is a 23 year old spoonie living just outside of Vancouver, Canada. She has gastroparesis, a feeding tube and is currently TPN dependent. She spends most of her time crocheting like the old soul that she is and blogs at Finding my Miracle.
Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.