Cachexia

The pain can be insane
It becomes rather ingrained
In your daily existence
No point in putting up much resistance
It’s a permanent part of me
It’s par for the course at this point you see
But I’ll never truly get used to this
It can make all my plans go amiss
It took dreams I’d worked 22 years for
Only to have my life’s dreams locked behind closed doors
It’s acceptance that this is the way it is
Even though you wish to no longer be going through all this
Doctors, needles, medications, tests
When all you wish to get is rest
Listening to the results they find
Feeling like you’re slowly losing your mind
Wondering if there’s a lesson behind this
And if so, what’s the damned lesson I missed
If I learn it will this spell be broken?
Or have I just wishfully misspoken?
The answers remain unclear
But this is truly hell on earth, my dear
Chronic and terminal illnesses are no joke you see
They slowly eat away at your sanity
They make you question all you’ve ever known
Make you beg for mercy until these lessons are shown
Will you learn from them and grow as a person OR
Will you get trapped behind the closed doors
Of closed mindedness- refusing to learn
Until you find your ashes laying in that urn.
So open your eyes
Sure you can despise
The illnesses, but not the lessons they provide
It’s up to you to search yourself from the inside
And decide upon which path to take
Careful not to make a mistake
Because there’s no do overs in this thing called life
Watch out- that grim reaper is coming with his scythe.

Feels like I’m slipping
Like I’m losing my gripping
On that positive outlook
Feeling too shook
Fuming inside
Wanting to punch my spirit guide
And possibly God for allowing this
Yeah I guess you could say I’m pretty pissed
Feeling resentment build up
Worrying I may never have been enough
To make a lasting impact on those left behind
I’ll soon be forgotten and this hurts my mind
I hope I caused enough laughter
And that I didn’t just shatter
People with my bad news six months ago
I just felt you all deserved to know
What’s wrong with me
After going through all you have with me
But now some of you are showing some anger
And it’s making me feel in danger
Of losing even more friends
So before that begins
Allow me to explain
One upping had never been my aim
But when you see people bitch
About that which
Is so unimportant in the grand scheme
It truly can make one seethe
So instead of getting pissed
Maybe admit my point here you’ve missed
I’m just sick of people being so ungrateful
When in reality their lives ARE full
Of so much to be grateful for
Yet Instead they CHOOSE to stare at that locked door
Sorry but not much annoys me more
No I’m not trying to keep score
I just wish you could understand
Wish I didn’t have to demand
That you try to put yourself in my shoes
Before you try to accuse
Me of selfishness
That’s the last thing I am in this whole mess
Still putting everyone before my own needs
To the point that it at times heeds
My ability
To take the time to cope you see
So stop getting pissed at me
I’m struggling like a mother fucker, can’t you see?
I feel like I’m losing my sanity
And no this wasn’t written out of vanity
I’m not so obsessed with my own demise
That I’ve come to despise
ANY OF YOU
Just recognize when you’re acting the fool
Be grateful
My having to say that feels shameful.

“Who would have thought forever
Could be severed
By the sharp knife
Of a short life?”
The song lyrics permeate me
I relate to them so much you see
A terminal diagnosis at 36
This is total and utter bullshit!
Which misdeed of mine
Was such a horrific crime
That this is the punishment
That fits the torment
Of whatever I’ve done
What else is to come?
I’m scared of that answer
I already overcame a stroke and cancer
Add in the Lupus and MS
And you’ll see there’s been much distress
And then there’s the flashbacks right now
Holy fucking cow!
How they mess with me and hurt me
Offering no sympathy
With the images they re-release in my mind
So I try to lose myself in the daily grind
I try make myself busy
To the point of becoming literally dizzy
I push myself too hard at times
Ignoring the obvious signs
That my body is in distress
Aye, when did my head become such an immeasurable mess?
Oh yeah when I was given the nastiest diagnosis
And a terrible prognosis
What more do you expect of me?
I’m doing my very best you see
To maintain that positive, Pollyanna light
To show you I’m made of strength and might
To try to reassure you it’ll be alright
When it’s time for my light
To burn out slow
And yet you wonder why I feel so low... 🤷🏻‍♀️

I’ve been asked what it’s like
To know you’re losing your life
To know it’s all being cut short
Feels like I’d like to sue the courts
Of both Heaven and Hell
Whichever placed me under this spell
Of a premature demise
Must surely despise
My many past misdeeds and flaws
This punishment isn’t without cause
For I’ve fucked up badly
Sadly
But here I digress
My head is just a mess
Because truth be told
I cannot hold
Anyone or anything responsible for this
My fortune has always been a hit or miss
In this life of mine
Though aspects of this are just fine

I no longer take my breath
For granted, and I know that my death
Is coming my way
Oddly comforting, what can I say?
To know the fight is ending soon
I’m not facing 50 more years of doom and gloom
Which had mostly been my life up to this time
Not like living this existence has proven so sublime
I don’t mean to come off so dark
Or make seemingly heartless and callous remarks
But I’m blunt and honest to a fault
I say what most of you just won’t
That not an ounce of this shocks my any longer
Though yes, I’d like to think I’m coming out stronger
But what’s it like to be in my head?
To know how close you are to being dead?

It’s like fuzzy TV static
Or being trapped in the attic
It’s breathlessness from panic
It’s switching between depression and being manic
It’s oddly wishing for the relief it will bring
It’s getting angry and needing to scream
At times it’s a calm stillness in my heart
While other times gut wrenching that my son and I must part
It’s creating bucket lists
Of all the experiences you’ve missed
Knowing most of which you’ll never do
It’s seeing that all these dreams you had are never coming true
Probable missed graduations
And wedding celebrations
Missed grand parenthood
Even though you know you should
Still be here
It becomes very clear
That time is not your friend now
So you go between extending your head up in the clouds... to burying it deep underground

It’s hell.

I was diagnosed as terminally ill with Cachexia due to Multiple Sclerosis 6 months ago. I’ve been going through a lot of turmoil inside since then and this poem helped me express it. I hope it helps someone else in a dire situation too. ❤️

I’m paralyzed
Guess I never really realized
What I could hide behind bright eyes
All the pain I could disguise
I’m paralyzed
I no longer feel things that I try
To feel- this paralyzation is all too real
I’m paralyzed with fear
I feel panic with every tear
That I drop down
Forcing smiles where there’s frowns
I’m paralyzed with anger now
And I questions how
I keep my sanity
With all the madness that resides inside of me
I’m paralyzed with fear
And until you’ve been handed a death sentence dear
Don’t try to act like you know
A painful knowledge you’ll never know
The knowledge that your time’s nearly up
Fearing in this life you may have been to corrupt
To end up in a good place once you pass
So you pray this life always lasts
I’m paralyzed with sadness
Just trying to cope with the madness
That is in my brain
Would drive you insane
But I’m paralyzed
Never knew I could so despise
A prognosis so grim
It seems worse than great sin
I’m paralyzed with fear
And until you are near
Death’s door
You won’t understand this anymore
Just know that I’m paralyzed.

15th September 2019
6:55pm