Could I be more?

If the grips of anxiety didn’t choke me until I feel constantly on my last breath
If PTSD didn’t rid me of sleep
If sadness didn’t settle in my bones and weigh my body down
If BDD didn’t starve me figuratively and literally

Could I be more?

Special is the word they use when they talk about me

They assume that my diagnosis fully defines me

Sometimes I wish I could only be heard and not seen

That’s what I often think about when I daydream

I live my life on an island,
and my world is small.
I stand for hours on my shore,
waiting for the plates of the earth
to shift beneath me;
to carry me across the oceans
to continents that I will never reach
on my own.

Oh! The seas of negativity
Snickers, stares, and sneers
Lost and drowned, no opportunity
Trapped within our jeers

And (Look!) we swim and find our way
Confused when they get left behind
Worked twice as hard for no delay
Dismissed outright with (Never mind!)

Oh! Our eyes of pity stare
There with care, but not their friend
They not seen, only the chair
Proud to show the hand we lend

Yet they ignore those smirking eyes and brush those pity eyes
And proud they stand, work times ten: Knowing themselves the wise

people ask me if my brain has started rewriting itself
If my consciousness expanded to take up the space left behind in these two months of rapid decline
Maybe in the week my eye has refused to read street signs and text messages

I am asked If I start hearing people’s locations as my sight slips further out of my reach
as if this is a neotech drama about self awareness and I am Neo
I just need to wake up, take a pill and I will harness the Matrix

more aware of my lost ness of my smallness
Of how I am I insignificant and absorbed into the collective strangeness of a crowd

It is not a different kind of light or of seeing but a falling darkness and sensing things in the night, when bats are flying low and recklessly close. When I feel the current swell around me as the unknown let’s me escape in previously grandfathered ignorance.

Tonight I am not ignorant. I am looking at a blank and dismal map. It is not filled in in the slightest.
I am rust and berry pulsing within a thick cracked skin in a sea of unbeing, only aware of where I touch the raw, colorless, and endless universe
Intensely attenuated to my body curled in fetal position
against the thickest nothing I have ever encountered.

like a slumbering geode
Filled with colorful secrets
Poised to bloom
I wait
But rocks sleep forever

How do you decide?
Decide what to do,
What the future holds for you?
I don’t understand, one goal,
One goal that somehow
Supersedes them all.

How do you choose?
When passion flows through you,
For not just one, nor two,
But many life paths, careers,
It all means something to you?

I feel lost, thinking of the future.
I’m floating by, trying to find,
Something that could spark
More than mere interest,
Something that could captivate,
Hypnotize me for long enough.

Because you see, I flit from one
Passion to the next, one minute
I am drawing, the next sewing,
The next it’s animals I love,
Or how about teaching children?

And I sit here empty, not sure
Which path to take, which goal
To make, to work towards,
Because right now, I’m in
The inbetween, no job,
Not in school, what do I do?

But the reality is, I’m trying to find
That one magic passion,
That somehow works with my
Disable body, since almost everything,
I find it all exhausting.
And my mind is spinning circles,
A dog chasing its tail.

Why can’t I do it all?
Why can’t I just enjoy life, enjoy
All of the things it brings,
And take my time, because I’m
So tired, of trying to figure it all out.
Tired of planning, I’ve never been
Too good at planning, when there’s
So many things occupying my mind,
So many things that I desire.

But even then, even then, if I could find
A goal to work towards, a dream job
For right now, well that takes work
And it takes time, because it
Turns out it’s all a ladder that
We all have to climb and being disabled,
Well I feel left behind, not sure
How to move forward when
I also have to go up, and going
Up has always been so draining.

I must work now, to somehow
Get somewhere I would rather be,
But what do you do when most jobs
Require me to be on my feet,
With my level of experience,
And education, limiting me?
It’s like I have to hurt myself
In order to hopefully some day,
Live a better life, I guess that’s why
So many say, ‘suffer now, and
You’ll get your reward later’

I tried university, tried college,
But you see, being disabled,
Has made them  difficult for me.
At least, in the ways that I was pursuing.
And now I’m stuck, trying to find my way,
How to get out of this rut, this mess,
All around me while being limited
By my own body, when I’m so used
To trying so hard to keep up
With the rest of them, charging
At how much money they can earn.

Money, it always comes back to money.
And money stresses me out,
Makes me more sick, gives me more
Pain that I would ever like to be in.
Well, apparently, money is
Supposed to be the solution.

Not so easy when the job market is crap,
I didn’t come from money, so I had to
Start off with nothing, and make my own way.
But where do you start, when
All your ‘now’ prospects seem
Rather lackluster and all you can do
Is prepare for a future.

Strange to think that we’re told to
Live each and every day like
It’s the last one we may ever live,
When we have to spend our beginnings
Stuck in preparing, deciding, and striving
For a future, so hard to make,
When all you started with was
A journal to write in.

I just want to live now,
I want to live everyday,
I want to spend more time
Cultivating all this passion inside
Of me, it’s bursting inside of me.

But there’s this rut, this anxiety,
This fear, of having to build a life,
No, a career. So that I can live
In the future, instead of now,
So that hopefully, we can get by,
Scrape by, by the skins of our teeth.

Tired of working crap jobs,
That I don’t really like, where we’re
Unappreciated, and paid to barely live.
Overworked, underpaid, I’m in so much pain.
My body, can’t stand in this pain,
But that’s all I can do is stand.
In pain, at a cash register,
Or making drinks, no consideration,
Of the struggle it is of being disabled.

Because we all have to able.
Able to stand, to push, to work
Your ***** off, until there’s nothing left,
You’ve given all you’ve got, and then
Some. Soul *******, career bent,
Work too hard, to fit in.
You got to be a workaholic to fit in.

Well I can’t keep up with that pace,
And I see it wearing people thin,
People that have more strength,
More drive than I ever did.
How are we supposed to live,
When you have to work to live,
And, in turn, live to work.
It’s extremely exhausting.

All of this jumbles inside me,
I can’t breathe, can’t decide,
How I’m supposed to live my life
When everything screams
On all sides, that I’m supposed to be
Running, supposed to be rushing,
And that all seems so wrong.

I just want to live a life that has meaning.
Something meaningful to me, that I can
Actually enjoy each moment as it passes
Us all by, I don’t want to rush life
Before it all ends, I’m so tired
Of trying to run in this ‘rat race’
It’s not a race, I need a slower pace.
I demand a slower place.
No more running, no more racing,
It’s time to live in the now,
No fear.

Chronic illness isn’t
Some beautiful
Pale
Girl sitting under a tree,
Book in hand.
It’s no romantic tragedy
Or heartfelt tear-jerker
It’s
Sitting on the floor of your bedroom
2 am
Trying not to cry because
You wanted to be in bed three hours ago
Your body didn’t.
It’s
Obsessively tracking every
Food and drink
Symptom and medication
It’s
Juggling four doctors and work
All at once
It’s
Trying not to *****
Struggling to stand
Fighting
To exist