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once upon a time

i was once a girl

never innocent, never carefree

i was once a girl

living and breathing

sometimes hoping, sometimes praying

i was once a girl

now i am a disease

to be avoided

to be locked away

to be quarantined

examined by the brilliant

the brilliant

with the letters

certifying their certainty

the brilliant

with adjectives

clarifying their clarity

to the brilliant

i am a study in oddity

i was once a girl

nervous system in tact

who loved and who desired

i was once a girl

blood carrying oxygen

dreamed of bits of peace

i was once a girl

but that girl is an apparition

of a psyche broken, forgotten, plagued

i was once a girl

who ate the pomegranate seeds

i was once a girl

never to recovery or emerge from destiny

too much!!!!

it all seems to just pile up until everything topples over.

i have been pretty active, keeping my mind off of all the chaos and overwhelming uncertainty of my illness.  that is kinda how i have to operate in order to just process information.  it’s always been that way…i get bad news and i have to throw myself into some project or work in order to take it in.  then, maybe, after some time i can sort it out.  when my middle son was diagnosed with autism, i went to work and worked open to close for almost a year.  when my dad died, i threw myself into planning his memorial then started a band project then let a crazy junkie hang out.  now i am steps closer to finding out what this illness is and i can’t stop writing or reading or working on the zine, shit i am even trying to start a project to help kids….

then when i least expect it, it dawns on me-“i am really fucking sick!!!!  i am really fucking sick and it is never going to be over….”  i have to fight everyday.  fight to stay at this level of sick, i have to let go of that one day dream.  this level of sick sucks!  medication boxes other people have to fill up because i can’t be trusted to take my meds the right way because my neurons are at war.  walkers, canes, wheelchairs, grab bars, handicap stalls…that is the good part.  at least those things help me do basic things without too much embarrassment.  being in public and having a total meltdown because there are too many lights and smells and noises and temperature changes, and the worst part is i know i am doing it.  i know i am reacting, but i can’t not do it no matter what.  i have to cover my ears and run…well, not run, shuffle as quickly as possible.  getting a coffee is a gamble-is there going to be too many people  who wear too much cologne, is someone’s cell phone with a horrible ringtone going to go off while the lady next to me is gabbing loudly, is someone going to cough on me…

but the worst is the holes…the holes the people around me leave.  it is unintentional.  they don’t mean it.  they just don’t care enough to learn how to not have the holes.  they don’t read to find out what this is.  they see the physical outward manifestations and they want that to not be there, but they don’t see the inside, the swollen organs, the lymph nodes, the nerve swelling, the fear because i forget how to walk or how to urinate.  it’s a non-issue the internal.  as long as they don’t see it, it doesn’t exist.  the holes.  i get so angry.  i get so hurt.  i need the support, but it is minimal.  when i try to talk about it, everyone just shuts down.  i just need some help.  i don’t know how to do this alone.  i don’t know how to see the holes.

it all seems to just pile up until everything topples over.

the long slow kiss goodbye

i am running out of addresses

no more places to hide

i knew if i let myself bleed once

it would never stop

if i exposed one bit of me

i would go up in a blaze of unglory

and here it is puddles of blood

the insides of me outside

for all the world to laugh at

rubbed raw with sandpaper

dried spit from passersby in my eye

there are no more tears left

i gave up on me last night

all the grit all the grime all the fight

i packed it in a neat little box

and started the funeral pyre

the curse is no matter how i beg

no matter how much i plead

no matter how much i bleed

i can’t escape

i am glued to this spot

eyes wide open

watching the world watch the freakshow of me

rocks slamming my head

and then the venus walks up and twists my heart

to remind me how sweet death would be

and how far away i am from it

there is no rest for the wicked

sometimes it’s better to bring a friend

it’s become a roller coaster

my life or what is left of the my in me

a roller coaster with loop-t-loops

giant mountains to click up slowly

there was a time worlds ago

or maybe worlds times ago

the free-fall down the orgasm

leaving a shaky kneed woman

in desperate need of a cigarette

the open air cluster of railroad cars

would stop at the appropriate platform

all passengers would exit-even me

leaving trails of giggles and squeals, virgin joy

i would walk, watching the people

mommy and daddy holding toddler’s hands

those girls and boys attempting

to catch the eye and various other anatomy

some succeeding quickly, fucking in the bushes

others pinned to walls or on the merry-go-round

the smell of bacon, fried food, beer and fear

permeated everything, everyone

i walked through “the house of honesty”

where the mirrors never lie

showing the viewers only flaws

driving the sane to rubbish

because inside everyone lives a demon or two

i paid my coin to the beautiful man

climbed inside the spinning wheel of divinity

a circle of orbs made of bamboo bars

the roof an ancient leather pulled taunt

a drum beat started pulsing

the vibrations shaking primal

setting into motion

the pod, the me, the earth, the galaxy

flora and fauna, the mystic, the naysayer

the gods and goddesses, humanity

all energy, all matter fixed and condensed

shaken not stirred for a second in time

there were sights never seen by human eyes

voices singing songs from other dimensions

walking for days, months, years

elvis the exit had left the building

the sun rising and setting but never darkness

finally the roller coaster again

“o my dear friend, to stir my passion

seduce me into self seduction…

let me see the world again swirling on your rails”

climbing on the heavy bar against my pelvis

the topless tram chugged forward

and the world faded away

i was there, alone, deserted

with no control, my life void of living

i only see the world flying by

small dots of others

skittering and scattering

doing things the living do

i live away from that

despite desire and despair i ride

because what do you do

when the roller coaster

doesn’t stop for you

my body is my bondage

inflammation and dementia

what a lovely party

rolling hills of myofascial tissue

blue streams exquisite and romantic

gondolas carrying red corpuscles

a relaxing contradiction

under it all

beneath the surface

a war is raging

me versus me

where disease runs amuck

mamertine prison

short-term limitation of supply and effort

where traitors are stored

coded messages sent in heart beats

it is international mayhem

fires and nuclear waste

napalm factories in nooks and nodes

leaders with plastic surgery smiles

a small reassurance

conference calls

the ‘yes crowd’ gathered and huddled

drafting demands in guise of compromise

george w bushy 2 is runnin the show

commander and chief of immunology

“WE WILL NOT NEGOTIATE WITH TERRORISTS!”

unless…well, some terrorists…depends really….look at mars

leukocytes get drunk and confused

friendly fire rape and pillage

the hell out of their own team

giant groups of terrorist

and could be terrorist

who were never terrorist to begin with

i am a being destroyed by myself

pain agony suffering torment affliction

unimaginable and almost surreal

there is no mercy or relief

there is no sacred place

no sanctuary

those who promised comradery

have become neutral

avoiding eye contact knowing it can’t be too long

but the joyful must not know

all the floral beauty and sanity must remain

there is only one option

paint loveliness and ignore it all

i love your breath on my neck

the eye in the sky

gathered

collected

calculated

data

enzymes

herky jerkies

all to be deciphered

soon enough

the wires removed

plastic tubes reclaimed

the flat land

void of oak and maple

the horizon

the warm fall air

the truckstops

all psuedo-comfort

and false teeth

making fake smilles

void of compassion

no niches to hide hope

but too many creeps

and abundance of crawlies

used car salesmen smirks

gold-like pinkie-ring

and chest hair

when we

settle back in

routines and holidays

vacation

travel

smells of our beautiful life

the indignities fall away

the indecent melt

brilliance only remains

i want to bathe

in the light

i want to twist

in the air

one day we

will roll down a hill

in moist green grass

one day we

will capture laughter

in mason jar

everyday

as far as

as long as

the sun rises and sets

i will see you

full of light and love

a kindness unseen before

bending the knees of gods

rain writes your melody

as the world sings