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[wordsdontmeananything]

undiagnosed: five years of chronic pain

it starts like this:

you're 21, junior in college

and gradually, like a

frog being boiled

you feel a pain spring up

in your shoulder.

the denials are first:

just sore,

it'll go away in a few days.

and slowly weeks creep by and the pain

is not going anywhere and

it spreads to your back and hips and legs

and you lay on your couch curled up

and moan

more days than not -

and then the doctors.

they start with the obvious:

you have failed in some way.

excuses include:

too little exercise,

poor diet,

weight gain,

anxiety,

dehydration,

bad posture,

sleep deprivation,

backpack is too heavy -

you consider yourself

in relation to your peers

and realize: i am no worse at these things

than any of them.

the question occurs to you:

why, then, would i have this pain

when they do not?

it is a logical deduction,

and yet your mind slips off it.

it is so easy to blame yourself.

so, for awhile, the excuses are enough.

until, suddenly, they are not

and you demand something more.

back to the doctors.

the usual suspects are considered.

by this time you have realized

that doctors can be fallible,

so you have done your own research.

you follow along as, one by one,

conditions are ruled out.

the deficiencies: your b12 and d

are within acceptable ranges

but, i don't know,

give it a try?

so you get shots of b12

and you take your vitamin d once a week

and hours spent moaning on the couch

remain relatively stagnant.

now for mechanical causes:

x rays and orthopedics.

minor flaws in your bodily anatomy are noted

and suggested - mild scoliosis,

slightly bulging disc,

shallow hip joints.

none of them fit quite right.

the blood tests, of course

inflammatory markers,

rheumatoid arthritis and psoriasis and

lupus and lyme,

eagerly you await the phone call

that gives you the answer,

that fucking answer,

here is what is wrong and now

we can finally try to fix it

or at least, slow its progress.

or, at least, name the thing.

and you are told

that there is nothing they can find.

with each negative test

despair wells up inside you.

in between visits, you research.

collect possible suspects

and pick your favorite

to cling to.

this will ultimately do nothing

but disappoint you

and now the doctors get

a little more creative.

you see specialists -

rheumatologists,

neurologists.

Ehler's Danlos,

ankylosing spondylitis,

multiple sclerosis,

all bubble to the surface and

you hope with every test

for something to finally prove

that you really actually are feeling this pain

that you aren't making it up

and every time

you are crushed

when the MRI is clean,

when the genetic test is normal,

when the symptoms

just don't match up.

you start to doubt

you're feeling anything at all.

there are some days

you try to reason with your brain,

convince yourself it isn't hurting

what you're feeling isn't pain,

this is how every human feels

and you're just too weak to handle it.

your depression

is cavernous.

and the time between appointments

stretches,

shuffled from specialist to specialist

six months, a year of waiting

to be seen,

the pain ebbing and flowing

and getting better and getting worse

without reason

and you try to track

what triggers it

but come up empty

as you wait and wait and wait

for the next doctor

to tell you the next test

that will come up negative once again

and send you into despair all over.

and with every negative test, you hear

"well, that's good!

one more thing to rule out."

but your list of candidates grows smaller

and what happens

when they're all crossed out?

the word "idiopathic" looms in the background,

tossed into the bargain bin of diagnoses,

the implicit failure of the science

you used to trust with your health

admitting that your symptoms

are a ghost in their machines.

at some point during this process

you find it impossible not to cry

during each new appointment.

you ask for copies of your scans

so you can look at them,

praying to see evidence

that the radiologist missed,

skimming medical journals and trying

to teach yourself,

while also trying not to convince yourself

of something that is not there.

and you are so, so tired.

it's easier to just stop trying.

live with it.

it's not really so bad, most days.

and the whole world

is against you, anyway.

but, you realize

that there isn't another way.

you cannot give up

you can't let your doctors

forget about you

you have to fight

you have to make them listen

you have to believe

that your body isn't lying to you,

that something is wrong,

you know yourself,

i know my own body!

i know what pain feels like!

i feel it!

i feel it!

what i'm feeling is fucking real!

and, once again, i write down

all my symptoms,

collect my records,

and make

the next appointment.

[wordsdontmeananything]

i'm going on a walk today

i know it's gonna hurt

i want it to

i need to be reminded

that the hurt is real

i don't do much these days

too tired

too bored

it doesn't hurt so bad these days

i do not moan i do not

curl into myself

chasing away the pain

fighting against myself

it doesn't hurt much these days

makes me wonder whether it was real at all

so i go for a walk

to remind myself that it hurts

this doesn't make it any better

this doesn't fix me

but it is real

for a moment

and i am real

for a moment, too.

[wordsdontmeananything]

when i was a child i wrote stories on loose leaf paper

in purple pen

in the back of the class

and i dreamed of the day

when i would create the Work.

and as i grew the Work changed forms.

it was a young adult novel,

it was a video game,

it was a graphic memoir.

but the Work has always been with me

and the Work is me.

it is the only thing i am.

my life has no meaning except as a prelude

to the Work.

and that is the way it must be,

because the Work is all that matters.

it's all that could ever matter.

but now i cannot find my way back to it.

the Work escapes me.

the Work, the Purpose, the Only,

it is divine and it is within me,

i have to believe it is still inside me,

that one day i will put pen to paper

and the Work will flow freely from it.

but when i look inside myself,

trying to find the places that i used to know,

i realize that something has died at the center of me

and the Work has died with it.

i cannot accept this reality.

the Work must exist because i must exist

and if i must exist there must be a reason

and the only reason that could ever matter

is the Work.

so i keep writing poems

knowing one day, ill find the Work again, i must.

i must.

[wordsdontmeananything]

new content!

consume me!

consume me!

why aren't you consuming me!

am i not palatable enough for you?

i'm ripping off pieces of myself

take them

i'm offering

are they pretty enough?

how does my blood taste?

is it warm enough?

eat me

am i good enough for you?

am i damaged enough?

is my damage aesthetically pleasing?

are these scars shameful or beautiful?

tell me i'm beautiful!

tell me i'm beautiful!

consume me!

rip me apart with your teeth

i do not care that it hurts

show me to your friends

share me

tweet me

rip me open and expose

the red inside me

put me in an advertisement

for mental health services

or nutritional supplements

or eco-friendly clothing lines

and eat me

let other people eat me too

let me sit at your table while you do it

let me in

i want to be looked at

i want to be something

why isn't anybody looking at me?

am i not interesting enough?

is my strangeness aesthetically pleasing?

i can be strange in a safer way

i can be abnormal in a way you find palatable

please

consume me

i need to be useful

i need to be seen

please share me

consume me

look at me

do you see my chest ripped open

on your screen?

look at it

please

the gaping cavity

it's yours!

it's for you!

consume me!

this is what you wanted

this is what i wanted

do you like my pain?

i made it pretty for you

please consume me

i want you to love me

i want you to look at me

do you want me to open my heart again?

i can do it

please

don't leave

keep looking at me

please look at me

please consume me

[wordsdontmeananything]

I let my eyes go fuzzy dark so that

I do not see too clearly the sin

I am made up of.

It’s all about the redirection, isn’t it?

I wipe my mind blank because it would

Be better if it was, I would be safer and

I would feel like I was not simply a collection

Of failures or laughably unimportant victories.

See, I’ve been told I need to see

The bigger picture, and oh, trust me, I do,

It just doesn’t see me. What does it mean

To be the only thing you can know and yet

So small, so nothing?

My mind flatlines at the thought,

So I let it and I think of something pleasant,

Something good that can sink

Into my veins and make me

Worth the universe’s horrible attention.

It burns me from the inside out.

[wordsdontmeananything]

And in the end, when

The sun has burned its way

Down past the horizon line,

Who is to say what

Ever really mattered?

The pink clouds are quickly consumed with

The black of night,

The memories are ripped like

Cotton candy from your head.

And, in the end,

Who is to say what really, truly mattered?

Is it the stuttering, the

Muttering and giggling I can

Just faintly recall, is it the

Breaking off and shattering,

Arguing, loving, holding,

Does it even really matter if

It’s over? And what

Was it for? Was it for me or you?

Was it for an outsider observing?

Did I mean anything?

Do you hurt some days?

And what is hurt, what is the point

Of pain? A reminder of

The losing of time,

Fracturing relationships that

I did not bother to try to catch

Before they shattered on the floor.

And it stretches on, and

We grow old and we

Forget. I remember pain

So clearly but the smiles

Slip from my mind, the pain

Is solid in my hands and eyes and ears

And tears no longer

Flow because I have forgotten how

It feels to let it go.

And does it matter?

And did it ever?

To you, or to me, or to

Whatever god is watching?

Are you a page ripped out

Of my story? Or am I

The villain in yours?

Have I failed one too many times?

Did I ruin the feeling I kept

So close to my chest, behind the

Aching swell of progress, change

Unwinding every second until

The clock ran out on us?

And did I try?

And do you care?

And does it matter?

And is it really over?

The sky is black and empty, now

The stars all blotted out with clouds

And light pollution. I think

I might remember how you grinned at me.

A deep, resounding rightness in my chest.

And then-

It’s over.

[wordsdontmeananything]

Growing Up

And you get older

And you get stronger

And weaker and

Stronger in turn, you grow

Taller and you grow

Smaller and you grow

Wiser and you

Fail.

Is reality a dip in the

Perception we all share, this is just

Some mass hallucination, you know?

I think, therefore I am, but

Do you?

I trust that you do.

You wouldn’t ever lie.

When you’re growing up you learn so much

More than you were ever taught.

You learn how to make mistakes, and you

Learn how to make it right, and you

Learn when to let it go, when nothing

Will ever make it right again.

You love and you lose and you

Forget how to love and you

Find people to remind you and you remember

That a kiss isn’t the answer,

Not always.

You reach with empty hands and find

Them clasped in a friend’s embrace.

You miss them.

You’ve never met them.

You’re fucking this all up.

You’re doing your very best.

You are a sinner.

You are a saint.

You are trying.

You are not enough.

You are getting older.

The sun always rises, while

You sleep away the morning, sleeping off

The late nights chatting about

Things that certainly aren’t important at all.

But it is important, isn’t it?

Isn’t life all just the little things?

That’s what they say, isn’t it?

What do you do with a brain that remembers

Only fragments, split seconds of

Laughter around a lunch table, or

Fingers flying across a keyboard, or

A thought too fragile to whisper when

The world is already broken enough?

What do you do with a mind that only

Takes the terrible parts, and prints them

In full color?

What do you do with the memories that

Hurt, and do not stop?

What do you do with the pain of

The used-to?

What do you do with the fear of the

No-going-back?

Is there an answer in that bottle, in that

Blank notebook, that knife,

That offhand remark, that

Moment of weakness, that

Moment of solitude?

Is it an answer from a brain that

Chooses only pain?

You know yourself. You

Try your very hardest to know yourself.

You hate.

You try your very hardest not

To hate yourself.

You fail.

But you really did try, and

That must count for something, right?

You whisper to yourself,

You giggle at the noise in your

Headphones spinning stories, singing

Melodies so softly and so

Loud and confident,

They laugh sometimes, and

So do you, you

Remember how you wanted it to be

When you were nine and life was

Large, now you’re twenty-one and life

Is still so big and you

So small but it feels like your life

Is ending, and you miss the way

Things used to be, and you feel the pain

Of nostalgia worse than the knife,

And you know that even back then

You felt this way as well.

You give love where you can, you

Remind yourself that you still can.

You are in control, I swear it.

I close my eyes and pray I will not dream

[wordsdontmeananything]

I don’t really like birthdays, I’ve

Decided. There’s too many eyes

On me, and growing up has lost

It’s shine. Life keeps going,

Though, so loud and suffocating.

Is there sunlight?

I’ve learned not to hope

For things because the hope

Is what poisons the

Joy you might have felt.

I am trying.

I am alone.

I want-

I want-

My mother gifted me earrings because

She wants me to look

Prettier, and I don’t mind anymore

Because I’m used to it and I guess

The earrings are pretty,

But they always itch too much for

Me to wear them, and my mother’s

Face crumples in disappointment.

Of course, it’s not

My body anyway, but still.

I don’t like the discomfort, the

Physical pain that

Beauty always demands.

I don’t like

Looking in the mirror.

That’s not me.

That’s someone’s daughter.

And I am getting older.

Who am I becoming?

A placeholder, a promise

Of a someday that will forever

Be a tomorrow?

Am I becoming?

Or am I just stagnating?

She’s proud of me,

But I don’t know why.

I have universes inside me, but

I can’t hold them, I can’t

Feel them. Everything is

Inside of me and it hurts

And I have nothing, I cannot see

Three feet ahead of me

And this body aches and bleeds

Because my brain forgets

To prop it up correctly.

I’m not sure what

Who

Where

Why I am, I am just

Floating, is that enough?

And-

Life goes on.

I turn in my homework, and

I turn on my alarm.

[wordsdontmeananything]

The paranoia is only a problem if

It doesn’t always turn out

Exactly as you feared so fiercely.

Will he steal a kiss from you, and will

You have to suppress your shudder?

Worst of all, would you let him take it?

How far are you willing to go

For the sake of escaping conflict, of

Avoiding rejection? How much not-you

Can you stuff inside til you

Are filled to bursting on the chaff

That isn’t lovely to your heart?

The bitter taste of lies you’ve swallowed

Up so greedily, so desperately?

Oh, darling, growing up is hard.

When I paint, or when I draw, or

When I write the life inside me flows

From some deep place that has no name.

I think that must be real,

Insofar as anything truly is.

I am a person, cogito ergo sum,

I am,

Is that enough?

I think.

When I create I do it as

Rebellion to the nothing kissing

At my heels with its lonely embrace.

Slipping into it would be so simple,

And so final. It would be softer there.

But instead I make and fill the

Empty spaces only I can fill, as

Shallow and as narrow and as

Small as they may be. I do not know why

I took up this mantle but it is mine,

I know I chose this for myself so

I wear it like a badge of honor,

And I do not cry as life continues beginning

And gently and violently ending.

Will it really matter in the end,

The yearning for connection, for

Creation that means something, for

Everyone to see for just one goddamn second

With their eyes unclouded by

The fog of hurt?

Sometimes I too feel that electric glow

Spread through my chest and face and arms

And legs and I

Forget how it is not and I am,

I forget it has no purpose and I am lost

In the soft roll of it, musical riptides and

A sea of words tugging at my bare feet from

The shore. The clouds are works of art that

Pinch at that holy nerve that tells us

What is real and important and interesting and

Necessary for our hearts to keep from bursting.

The wind howls its assent and caresses

My bedroom window with a soft shudder.

A reminder that I am not alone.

I do not need a “him.”

[wordsdontmeananything]

Remember that

You will die.

If you let your mind just kindly

Wander, gently guiding

You to greener pastures, eventually you

Will find something that might

Be worth living for.

I mean, I doubt it.

But maybe

Who knows.

People cave into each other and cry

Under the weight of sin

Uncaring in its burden.

The desperate shouts of god and man

Do not convince the bystanders.

And a dizzy truth comes

Into your mind, knocking

At your everything like it has

A choice whether to stay or go-

It tells you of the way

The world is, cold and cruel and

Changing, ever changing.

Your curse is to

Be always left behind.

Your truth is that

The world is full of hate,

And that hate will fill you up and

Consume you.

And, honestly, the truth is that

There is no goddamn reason.

Just hate for the sake of hate,

Hurt for the sake of hurt,

Shit spewing from our mouths in

Unstoppable regrets. Why even speak

For fear of the oppressor?

Does it even really matter?

Does it really make a difference,

In the end?

Will we all find a purpose or

Just fall into the nothing?

And, truly, what is happiness

Without the hope of hurting?

[wordsdontmeananything]

Every feeling is so interconnected.

It’s normal to feel the tug of heart

In so many different directions at once.

The struggle to survive is not glamorous,

Not in the slightest.

Life is not so glamorous.

The point being: we are all interconnected.

The language of life that binds us is

Not so easily broken.

No matter where we go we tie each other

To each other,

Feelings real and terrifying.

[wordsdontmeananything]

Liquid Courage

She isn’t sure which parts of her

Were invented by someone else.

She isn’t sure just how much of her is real.

She feels great now, though.

She feels invincible.

And she must be if she feels it so strongly.

She does not dread her consequences,

Because she forgets them for the moment.

But that aching fear settles solid in her gut,

A cannonball just underneath the

Surface-level bubbliness.

She tries even harder to forget it.

Always it remains.

She fears so deep she’s forgotten how to feel it.

She and the sun are

Closer than close,

So close it hurts to breathe.

[wordsdontmeananything]

And now your valley rises

Up to collect you from the shallow peak.

It’s a cradle, of sorts,

A comfortable panic, a soft

Sadness. The arms around you are not real,

And they never will be,

And that thought tugs gently down on you,

Sinking you even further.

You can’t bring yourself

To mind. You’re very tired, here.

And it is so very warm.

So familiar, like a blanket

Fresh out of the dryer,

Wrapped carefully around you by a parent

Whispering so as not to wake you.

You aren’t asleep, not yet, but you

Don’t try to disagree with them.

It’s nice, the muttering. It reminds you

Of a home you never had.

(Won’t ever have.)

Home is where the heart is, your mind

Quietly reminds you, as

You slip into a dreamless sleep.

[wordsdontmeananything]

Confusion is a soft familiar memory

Running rampant in a mind

Forgetting its reason.

It’s nice, I guess, to wander

For awhile, forget all purpose.

But it stings like salt

In the wound of passion,

So I create a vague something

To fill up the empty sea.

It’s nice, to make something

From the ether. It’s-

Not easy, not light and lovely, but-

Full. Whole. Making

Just to make.

A vision in the sea-spray.

A meaning in the madness.

[wordsdontmeananything]

Red

Everything is vague, again,

Confused hope springing up

From old wounds,

Blood watering the

Hungry grass.

It’s hard to tell what’s

Metaphor and what’s

Desire, in this in-between.

Grass is green,

Sky is blue,

Blood is red,

Soul is black,

Something creeps into my fingers

Trying to convince me of a truth

That might be lie.

Something dark, and something

Noble. A destiny of hurt,

A story told a thousand times

Yet never ending, never

Closing to completeness.

So many loose ends,

Even now. A hero rises,

Like always. A hero

With a soul turned red with

Hate and with despair.

A hero saves me from the flood

And I can beg and scream and cry

But redness overtakes me.

[wordsdontmeananything]

Cure-all

It’s May again, season

Of ending. Warm endings,

Beginning-endings, but

Endings all the same. Yes, the yellow heat

Of new is tinged with

The blue regret of the used-to-be.

It’s just a little too cold for spring,

Just a little too old to be refreshing.

A little stale.

But June approaches softly, stepping

Right into the fresh-rain grass

I forget the pain of ending and hold

The gracious hand of summer.

[wordsdontmeananything]

Blessed saints of holy grace

I swear to thee my sole embrace

Remember how the sweet despair

Caught hold your face, wrenched free your hair

And sought so deep to hold you down,

Defiled your heart and stole your crown.

And- in some chamber, soundly sleeping-

Retribution, softly dreaming.