I wrote a slam poem. I included an audio recording since slam poetry is best heard. Sooooo here it goes.
https://vocaroo.com/i/s0ZJiDZ6QVXM
Spoiler
I used to think about getting better,
Bullshit positivity ad nauseum,
Chin up,
Don't be sad,
Just stay positive,
Don't give up,
It can't be that bad
#firstworldproblems,
Because the only real disability in life is a bad attitude.
Am I right?
But then, I was diagnosed.
No not cancer,
My golden ticket,
The stub read incurable genetic disorder,
Well you seem to be doing better,
You look so great!
I'm so happy you're feeling well,
But what part of incurable don't you get?
I used to think about getting better.
But now I think about dying.
Not because I want to die.
I'm just so tired.
When I woke up the first time,
After my first brain surgery,
I was so thrilled
It didn't matter that my left side felt like a flaccid dick,
Weak and boneless,
Because I had made it.
I was cured!
But the second time,
The second time I woke up,
I just wanted to go back.
Back to the anesthesia induced nothing.
I used to think about getting better,
People still ask how I am sometimes,
But they don't actually want to know,
They just want a nice story,
If I had cancer, that'd be easier.
I mean you either get better or you die.
Am I right?
There is no better.
It's just a slow agonizing crawl to death.
And I'm supposed to gleefully greet every damn day.
Like I'm blessed.
Even the days I piss myself,
Because gravity and human anatomy are married
Because I have to lay flat for two hours,
So my surgical site doesn't bleed,
Even the days I almost die in the shower
Because I had an attack.
And I dial 911.
And the paramedics try to calm me,
As my muscles seize up and I am paralyzed
Shiloh, you could have died,
You could have gone into cardiac arrest
Have you been starving yourself?
You have no potassium.
Oh no, that's just my incurable genetic disorder.
I used to think about getting better.
But my illness is an oncoming train,
Poised to push me back down,
Just when I thought I was well.
And my grief is unending.
And that's why I fantasize of dying.
It's not because I don't want to live.
I don't meticulously plan my death.
I just think about driving over that bridge,
Every damn day,
I just can't be positive anymore,
I don't want to be your inspiration anymore,
And it isn't going to be okay anymore,
But you don't look sick,
You're too young to need pain management,
Because age equals pain
And only old people have The-capital T pain
Nevermind the dying children in the NICU.
Nevermind that time I quietly screamed,
Through the versed and fentanyl as
The surgeon pressed on,
Pushing the angio-sheath through my scar tissue,
We are almost there, they lied
Heart rate escalating,
Blood pressure rising,
Quick give her more fentanyl,
She can feel everything,
You're doing so good, just try to relax,
She can still feel it,
She is having a hard time breathing,
Just hang on, we are almost done,
It wasn't a lie this time.
Sometimes it still hurts there.
You're probably wondering when this is going to end,
Honestly, me too though,
Because you're tired of committing and caring,
But I'm tired of another pill
Another surgery
I'm just so damn tired,
You ask how I am,
I'm fine but I'm lying
I'm tired of laying awake at 4am in pain,
When all I can do is write and recite
This shitty slam poem,
By me.
I used to think about getting better.
But now I think about dying.