Prisoner-Of-War

Somewhere along the timeline I stopped imagining my life...
When I lived in Pittsburgh, while on my Florida hiatus, I would constantly visualize my life and how I wanted it to be.  Somewhere during all this Crohn's-hospital-sickness-life-stealing bullshit I just became blah.  I completely stopped.  I didn't just stop visualizing, but in a way I guess I stopped even thinking about my life in any capacity.  All I could do is just do right now.  And I don't mean "right now" in the Zen "Be Here Now" be present way----- But like, I stopped thinking I even had a future.  Basically, I just STOPPED.
Time became irrelevant, it didn't exist...like when you are in such excruciating pain and ten seconds LITERALLY feels like an hour.  I came to a complete and utter stand still...
 

And years, YEARS have gone by and I have begun to PETRIFY. 

When I was in Pittsburgh I used to visualize how my life would be and how I would decorate my apartment.  I wanted a deep blue couch (I still want one).  And I would think about going to the beach and having a writing career…etc., etc.  And then, I got sick.  And for awhile I kept dreaming.  I mean, it worked before.  I imagined a life and what I wanted---above all else I just wanted to be in Florida.  So, I worked my but off and

I MADE IT HAPPEN.

When I finally got here and Mark and I were back together and he was enjoying the success of his new business adventure, we were both healthy and in great shape.  I had Ziggy and the car I imagined and I was living just three blocks from the ocean…

It was as close to PERFECTION as my life had been… Then

BOOM!

A slow and

      Steady

          Decline

    Toward

                 An

                  Utter

                       Stand

                          Still

                               Inside

                            A

                      Giant

                              Heaping

                                   Pile

                                        Of

                               SHIT.

I guess there are multiple reasons for my petrification.  But one main one—CROHN’S.
When your body fails you, it’s the strangest feeling.  Especially when you are young.  And, if you do NOT have your health, you simply and quite literally CANNOT and do Not have ANYTHING.

                                                    PERIOD.

And strange things begin to happen when you live alone in hospital rooms and alone in your house.  My mind started to atrophy.  I pushed people away and others stopped calling because they didn't understand why I always said I couldn’t go anywhere or do anything.  Unless you’ve been chronically ill you simply DON’T GET IT.

                                                                                                                         PERIOD.

Sadness becomes anger.
Anger becomes sadness.
Sadness turns into apathy.
Apathy evolves back into
An anger and sadness cocktail
That tastes like a whiskey sour
With a bitterness chaser
And a side of Shut The Fuck Up!
Because I can’t decide what’s more annoying…
You and your pseudo concern
Or me feeling like shit for the umpteenth day in a row?

OR/THEN

 Feeling absolutely NOTHING

                               EXCEPT THE

                                STABBING

                                  DEATH

                                        PAIN

                                       IN

                                         MY

                                                 STOMACH…

AND

The long, dark, blank stare sets in and now nothing at all matters in the slightest bit.

Emptier than empty… I’ve entered into the NEGATIVE…

So, as if on auto-pilot I drive to doctor appointments and then head back to the couch (Not the blue one of my dreams).  I answer my mom’s text messages.  I run back and forth to the bathroom, put my heating pad on my pain infested stomach and I stare.  Empty.  Still.  So still. 

Tears drip down my face a lot of the time.  But still, here I sit.
The time keeps ticking away.  With every tick of the clock I miss my life.
Petrified, I do not move
I only lose the tiny bits of life left inside of me.
I exist on a plane of my own
Alone.
There are only concepts here

NOTHING

Is

             ACTUALLY ALIVE

I           JUST

      EXIST…

I’m breathing

But it feels as though this oxygen is just as supporting of the Crohn’s pain
That has taken me hostage.
I am a prisoner-of-war.
Breath is the equivalent of a bullet.
Things necessary to keep my heart pumping
Only feed the enemy.
I am at war with myself.
My intestines are Hiroshima
And the white blood cell soldiers sent in to aide
Are smothering each other.
It’s not safe here.
But you can’t escape your own body.

WAIT…

                                                                       (CAN I?)

WHAT?                                                               (THE FUCK)

Like I said, strange things begin to happen…

The loneliness is my companion.
My blank stare, deep.
And my pain… continuous…

But another strange occurrence…

Today I thought about that deep blue couch.
Somewhere between my morning coffee and more tears
Somewhere between Starbucks and streams down my face---
In popped the vision and it reminded me that there can be hope if I CHOOSE to see it.
If I decide to keep dreaming
If I decide that I want more
If I choose to believe that there is possibility… Well, shiiiiiiitttttt---

Maybe, just maybe there is…

Yes, my body STILL is failing me.
Yes, Crohn’s may be disabling my ability to do a lot of stuff.
But I can still dream and hope and pray and try hard to heal
My body may be still but my brain doesn’t have to be, right?!?!?!
I’ve been thinking a lot about perspective.
And it may seem as though I need to change mine.
I need to “un-petrify” if that’s even a word.

TIME TO GET MOVING!

I’m about to set this couch on fire

And replace it with the deep blue one from my dreams.

ALTHOUGH,

 Once I do that it will be purely for decoration.

'Cause once I take back my life and become an ex-prisoner-of-war I’m not sitting around to stare

NO MORE.

 PERIOD.

"Reality Used To Be A Friend of Mine"

A moment captured.  About a week ago I spent another six days in the hospital.  This was a little over four weeks after my last nine day stint.  My eyes cloudy.  You can see the tubing from the PICC line in my right arm.  After all these years my veins don't work.  Literally, my veins cannot support an IV.  And it usually takes multiple people, multiple attempts to even find a vein that will work for a short amount of time.  (This is a topic that I plan to go into great detail on in the future) I was going to post some of the actual journal entries from this particular hospital stay but they're kind of all over the place.  And like I said, I am severely private, so this whole sharing thing is VERY outside of my comfort zone.  Although, I don't know much about "comfort" anymore.  I guess that's why I finally decided to do this...
     So, I begin with this glassy-eyed sad photo of blinds drawn and palm trees in the distance.  I can't decide how I feel about the palm trees.  They remind me of the beach and being happy and healthy playing in the sun.  So, are they taunting me? Are those trees mocking my "old life"...You know, the life where I was happy and healthy and didn't turn my back...? Or are those trees there to remind me of that happiness and the hope of returning to a life where I am happy and healthy? Perspective.  Mother Fucker. 

Letting Go...

I've been secretly documenting my 21 year battle with Crohn's disease.  It may be time to share some of it...?  If I can help someone than all of this suffering will begin to change form. It could turn into something useful instead of just ruining what life I have left.  It's frightening to be so vulnerable.  If you scroll through any of your social media feeds 99% of it is the positive, happy, fakeness that people want others to believe is their reality.  Well, let's be honest for a moment, NO ONE has a happily-ever-after life.  No one.  So with the risk of sounding like a whiner or a "why me" asshole I am going to attempt to put my ordeal out there.  Honestly, it's terrifying!  I am a SEVERELY private person! However, through all of this there has to be a purpose.  So maybe in putting it out there I will find what it is... And I know there are others like me barely holding on.  Maybe together we can do it... This is all I hope for...