I wish I had never existed

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She told me, don’t worry about it

We’re sitting talking about how we know

You’re making me laugh at jokes, about Hannibal

How I only like Gillian, because she’s a bit like you

And I can’t tell anyone, including you

You reminded me how I knew, I was still alive

In the video of you dancing, uncaring and wild

That’s how I’m reminded why

I know beauty

How women

Are the possessors of

All that is beautiful

With your downcast eyes, the color of absinthe

Hair falling in your pale face, cut cheekbones and grace

The switch of your merciless, marching intelligence

The sorrow, the humor, the passion lines

How you make me laugh hysterically and blush

Pouting, pulling on your cigarette, getting me aroused and nervous

Without trying, you command all attention

Your wit is sharper than a sword

When you didn’t talk to me

It was like a blonde flower, turning her lights out

The night was darker

Still I heard

That song you made immortal

The sway of your slim hips and secret smile

And I’m speaking to you in a language, I outlawed

Because he dirtied it for me, forever

But you sound so lovely talking in the fog

I know I have to stand at a distance, or I’d reach out

Grab the concentration from your lovely brow

But to be in your blazing aura

The tiny, angry, intelligent, firey soul

You inhabit like no other

You were the girl who woke me up

I’d give anything to dance with you

To that exact song, in those same clothes

Your then blonde hair, a chaotic wisp

The crunched concentration on your francophone face

There’s classic and there’s disheveled-perfect and you’re both

I’d take your hand and say

Don’t worry, I know the rules

But for fucks sake we’ve both been here long enough

born the same year

You got the small chest I always wanted

And you said you liked my eyes

Same color green as yours

Not narcissism

But sisters

Lovers of

Pain and hard living

We only trust those like us

Who smoked and drank and have to show on our tired faces, the weariness of living

Where boundaries are never crossed

But fantasy is free and inked

And you like being adored

I am good at loving

Sad, happy, gorgeous girls, with crooked smiles

Who hold my attention with their spark

Catching in the darkness like a skinned rock, thrown out to sea

On Brighton beach

Where we’ll always be young and beautiful

Me chasing you in the cold sea

You disappearing into green waves

Not even ourselves

Why and when did people stop being interested?

as kids we would sit on benches and talk about our pain

there seemed then, such a mercy in the air

it hung like cobwebbed dew around us and

despite the hardships we bore, our friends were

our succor

Why and when did people stop being interested?

and grief was labeled an annoyance?

why does growing-up mean we no longer write

poems like this

do we no longer feel the same

or just hide it away?

and if it is hidden how does it stay so

with the swell and the surge and the blistering salt

I hear rain falling into a tin can somewhere

and briefly I remember eating out of cans in summer

my lips sticky with apricot

it was a luxury then and my grandmother carefully

spooned each peachy globule out and added ice-cream

I hated the taste of ice-cream and I loved

the feeling of lying high in a big tree smelling apple leaves

in those days

when tragedy struck

we children who are called resilient

had the hope or the armor of youth

and the cherish of our friends

I saw her running toward me across the fields separating our houses

her red hair and freckled face red with exertion

we ate stale cucumber sandwiches left over from her mother’s

garden party and she held my hand in her own

clammy seedy palm

as if I were a starfish

I told her of my disappointments and the ache in my chest

all those who had forsaken and gone their own way

with the wisdom of child she wrinkled up her eyes against the sun

told me what I needed to do was pretend I didn’t care a damn

because one day you’ll grow up and nobody will be able to hurt you

I held onto that advice like a piece of paper framed in my chest

but it wasn’t true it wasn’t true

and I wonder where she is now

if she has children

if she is the same kind of mother she was as a friend

if I could see her again I would say

thank you for giving me the hope to get to this point

maybe it wasn’t true, maybe adults fool themselves into

thinking they are not children with ageing hearts and

brittle bones

maybe being an adult is harder than any childhood

because you don’t have afterwards to dream of

and the future as yet unsummoned

with all your magic and all your wistfulness

seen through the eyes of someone not old enough

to know the reality

I would tell her don’t tell your children the truth

let them dream as we did just a bit more

where I can still hear my grandmother knocking over pots

as she makes an apple pie and the smell

of summer is all about us in a haze

and your red hair makes mine look blonde

and your freckles tan your legs whilst mine remain blue

and your hand in mine is the first hand of friendship

I would thank you for running when I called

because nobody has run since and I suspect

adults have ways of doing things

us children never quite understand

I’m thinking if I could choose a side

I’d go through time and clasp your wrist and run

into the high grass fields out the back and where

nobody would find us

not even ourselves

years from now

TLDR is bogus / we should read, we should care and take the time

TLDR is now in the dictionary (which I think is pathetic). Unfortunately this post is going to be too long and you don’t have time to read it fair enough but I’m writing it anyway because I have to.
Today I found out a very lovely girl I recently met (nothing is random) has Gastroparesis. It really affected me. See I had put all the awful horror of last year and the early part of this year into a box and avoided it. That’s what you do when you feel traumatized and are just trying to get your life back. How lucky am I to even have that opportunity?
Seeing those who continue to be sick, year in year out, through no fault of their own, makes you so grateful for any renewed health. After getting suddenly and violently ill last year in March with a suspected Noro virus, I got better quickly but remembered the awful feeling of unending nausea. I had two more brief bouts in May and June the last one sent me to the ER for the first time in my life because I had what felt like heart palpitations. Then in August of last year I got violently ill out of the blue, half way through the day, and didn’t get better for nearly a year. One of the hardest parts is how badly let down you can be, by people you thought cared about you, but on the upside, you also find out who really loves you and who doesn’t and that can be powerful and freeing.
I had to quit work for the first time in my adult life, I went into massive medical debt and I was suicidal for the first time in my life. I’m not saying this to make anyone feel sorry for me,I feel lucky. I’m saying this because I didn’t know ANY of the stuff surrounding this before, I was taking my health for granted, I thought being healthy living meant I would avoid bad things, it doesn’t always work like that.
It is thought Gastroparesis and other similar extreme illnesses are primarily caused by either Diabetes, complete breakdown of your autoimmune system, physical causes like gastric-bypass surgery or something you are born with, but most commonly is considered to have NO CAUSE. However if you do some research it becomes clear that VIRUSES cause the latter onset. Why women get it 9/1 over men and why pre-menopausal young, fit, healthy women get it, is also unknown, although studies show having a full Hysterectomy can reverse it so it clearly has a link with ESTROGEN.
I was told after being so violently ill for months without ANY cause found that I must have Gastroparesis. Gastroparesis is actually very rare but has become a catch-all umbrella term for anything the medical industry doesn’t understand. Supposedly the ‘gold standard’ test for this is the gastric emptying test but I found it is very unreliable and can vary from day-to-day. I was put on REMERON which is supposed to help a bit, if anything it made me worse. Fortunately for me, the city where I was at that time living in, San Antonio has one of the best Gastric Research Centers in the US I was able to see them and what I was told was life-changing.
My doctor told me I definitely did NOT have Gastroparesis and that in his experience 8/10 people diagnosed with non-diabetic Gastroparesis don’t have it. I had an EGG which showed my stomach was literally flipping and lurching and not emptying fully because it was ‘dumping’ too fast – this is called Gastric arrhythmia and is almost the opposite of Gastroparesis. I was horrified that they could have got it so wrong.
I was put on a very low dose of a medication that slows your stomach down. I’d lost so much weight it was dangerous, I couldn’t eat, I was throwing up all the time, I had constant diarrhea (which interestingly most Gastroparesis patients don’t have but they completely ignored how illogical it was to have constant diarreah despite this being almost the opposite of what you’d think of when you imagine a ‘frozen’ or non-working stomach which is the definition of Gastroparesis). The medication changed my life.
I had been suicidal for the first time ever because I decided if this didn’t get better I would not want to live. It was too awful. I didn’t have any family support, I felt so alone day in day out, that’s the worst part about something like this. That’s why my heart bleeds for those who are going through it. I had so much medical debt and couldn’t work and was nauseous (really, really severely not a little bit) 24/7 it ruined my life. The medication changed everything I’m still sick but I can finally work again, I can eat normally although my appetite never came back and I have to force myself which sucks. I have put on more weight than what I weighed before I got sick (as a precaution) and I am on the road to recovery. BUT I keep thinking of those who are still going through this.
I feel finding out today this lovely friend has what they thought I had, not only means I must do more to help others, because I KNOW how they feel, and what they suffer, but because we need to find out why this disease and others like it, are happening so often now when they used to be super-rare. It isn’t because people aren’t eating organic, most of the people I know with these things did eat well. Many of the doctors dismissed the link to Epstein Barr Virus and it was my PCP who finally decided to test me. My results showed I had EXTREMELY high titers of EBV in my blood. I worked out after contracting the Noro Virus last March I must also have either had a reactivation of EBV from childhood (90 percent of us get it as children or young adults) or I had never had it and got it for the first time.
Either way I realized EBV TRIGGERS Gastroparesis and Gastric arrhythmia. Somehow the autoimmune aspect of all Herpes Family viruses (like Shingles too) trigger various illnesses. The most common you think of with EBV are ME, Chronic Fatigue, MS, Fibromyalgia, Stomach Cancer. But more and more doctors are seeing stomach issues like Gastric Arrythmia and Gastroparesis. The medical industry says Gastroparesis is incurable. I don’t believe it is. I have read that if you can get your EBV down you can get over Gastroparesis. Many times if this is the cause then beating the virus beats the symptoms.
The only current treatment for EBV is high dose Vitamin C. I could never handle the acidity of Vitamin C. I found that Dr. Mercola made a Lypoic version that doesn’t hurt your stomach and I began to take 4000mg daily. Ideally if you can then IV Vit C works even faster and better. Once the EBV is reduced in your body the symptoms of the Gastroparesis may abate. The information online is awful and inaccurate, it basically says you will have it for life, but I have known people who overcame it, through diet modification, managing stress (which can exacerbate any serious illness) , adequate rest and treating the CAUSE which doctors never talk about because they want to treat the symptoms.
During this time many things changed in my life, at first I thought those changes were bad but I have come to see sometimes you have to force yourself to change, and what you think is a bad change, actually is a blessing in disguise. This illness forced me literally to reexamine my life, I realized I needed to make changes, which included moving and living elsewhere, as well as redirecting my energies into things I’d neglected such as teaching dance again and not giving up on my writing. I had let the awful experience dampen my hope and the truth is, when you survive something that awful it gives you a chance to find your joy again which I have in so many ways. I’m still on the road to recovery, I still have pretty bad days, but I am mindful of how far I have come and that along with support from loved ones makes all the difference.
If anyone you know is having severe stomach issues and they need help please give them my details because I want to help people. So often people are isolated and uncared about when they are sick. I have known many who have chronic illnesses and they are neglected by their families and invisible in our society. I felt totally alone when I was at my sickest it was the worst feeling in the world, which happens to most who experience long-term illness. The hardest part being since serotonin and other brain chemicals are actually made in the stomach, when you have severe stomach problems you get extremely down and anxious. On top of that Gastric arrhythmia produces a physical anxiety that had me crawling out of my skin, something I never had before.
I am truly blessed for having a chance to recover, but I believe in paying forward and I also believe if any of you know someone suffering, some of this information can help that person. The doctor I saw was in San Antonio, Texas and he was really, really good and I’d even say flying there to see him would be worthwhile, he is the clinical director of the National Gastroenterology Research Center in America.
If it wasn’t for him, those who love me and doing research I KNOW I would have either killed myself or spent the rest of my life suffering. I want to help anyone else get as well as they possibly can. I truly believe viruses are the cause of most things (cancer, etc) and we can fight them. You are NOT alone. Pass this on please to anyone you know who may be suffering. Thank you for reading if you did. We need to bring awareness to rare diseases like this that are growing in number and striking healthy young people in their prime. Never give up.

Vapor

V005

Your head moves under hot lights

thrashing

a passion as you open your mouth wide

roar your words

small teeth, thin lips

skin colored by strobes

I want your impulse

your brave furious eyes

your mad flung acrobats anger

it’s the addiction to throwing aside

caution

striking out like match on ink

permanently marking your stride in heat

I watched you take a whole roomful

swallow them whole with your flame-thrower energy

spitting them into stars and tilting laughing

as they adored you and didn’t know why

your mercury vapor left them reeling

clasping my hand in the car with headlights off

driving blind down blurred country roads

inside me with urgency born of

thunder and trees struck silver

firing in strange shapes of want

it felt like flying, I grabbed a tuft of you

spun like a catherine wheel in your orbit

time was fast and everyone watched as

we climbed buildings in our wonderlust

they’re crazy, they’re so in love

they’ll burn out, they’ll extinquish each other

we never did

not until the key stuck, didn’t turn around anymore

rusted and tired of pushing wooden horses

tired in their paint and festoon

oh I would have made them well again

as I did you

just for one more shivering impulse

riding your coat tails as you took in

the capture of your swell

kissing me beneath table tops

our faces glittering from thrown aside masks

hands reaching, climbing up skin

dance of thundering hearts clamoring to be

still

as you lay now, white out, no sound

I dance contorting to cause a smile

there is none

only a wick, half used, half submerged

in waxen reproduction of what was once real

give her back!

give her back!

I yell at rooms without inhabitants

tables missing their chairs

windows containing no view

your fingers trembling in mine

if I could have

I would have

made us one

save this image; a kiss lasting past quitting time

you pull away and reach in again

no ending,  just softness

a song we live inside

calling us home

there we go

hand in hand

through the vapor

vanishing

 

The Analyst & Peter Pan

Holding tears beneath excessive eye-make-up

not smart when pealing secrets from heartache

I noticed the Analyst had cut her hair

in Jewish faith, hair is a woman’s greatest vanity

to cut it, often a sign of extreme despair

I cut mine when I was sick, it fell like a lambs tail

to the floor in red scissored ribbons

in the mirror I looked like a shorn stranger

trying to climb out of familiar eyes

reminding me of the time I sheered it off at 16

my lover left me soon after, he did not care for short-haired girls

I told the Analyst I liked her new look

wondering if there was a story behind it

the never-never velvet glove of Pan’s world

his need not to be a he or she or have a Wendy

instead to be free as we are at ten when

nothing of this world can truly touch us

gender becomes a learned yoke in the future

she recalled her sheer days of freedom

wishing to return as we all do, to a kinder time

I do not know if I am this or that

but I know what I am not

I felt it was honest, when you do something big

there is always more of a story behind an act

I sat looking out of the small office window

remembering sitting there before

sick and heaving

thin and fat

slump shouldered, bare-faced and dolled up in war paint

I remembered

driving to you and dancing in my limbs

as I saw you look up and wink

changing the light with your smile

knowing

I will never leave that office and find you again

because you were gone even then

I just hadn’t known it

too sick, too set on denial and fever dreams

perhaps when you know you will never experience

that feeling again

it is harder to let go, watch such a large part of you, fade into background

you are grieving she said

her short hair in her face

I thought of you and the pulse, laying like a long empty road, between us

my heart squeezed with a terrible pain

children flying from an open window into stars

tears splash on my skin, like your touch

which I will not feel again in this life time

so you pronounced with granite in your eyes

and I nodded

dumbly

unable to say anything more

but watch the light

skip in and out of the small windowpane

where once I held

as much pure love

as Peter Pan

debris of the unsaid

row-boat-painting-surrealism-woman-dreaming-row-boat-in-hair-beautiful-painting-art-row-boat-in-storm-paintingOnce

the storm

predicted and prepared for

still

blew away the thatch of your house

sent water pouring like words with lament

and whilst

i was sickening

i thought I heard you row

across the expanse of us

holding your roof as umbrella

your feet bare and needy

opened my cabinet of questions

gave you a draft of why?

to which you descended beneath brackish waters

places submerged in lost question

claiming to surface

a moment where you spun in orange pekoe light

sitting stroking Gato before he

tested his claws on a tree the buyers tore down years hence

i climbed that tree in my high heels

you took a photo aping for the camera

and one fixing your sink in mini skirt

that’s my girl you said

we bathed because then you had a bath and I had heated arms to wrap you whole

the ocean of the past drawing in and receding

with it, debris of unsaid and unchained

time behind and unrecoverable

Once

i told you I was sick and couldn’t swim

you held me above waves with your will

till you decided I weighed too heavy

on the stitch of your skin to keep

we both

and neither of us

strangers and familiar

deciding and without decision

lost that year to the storm

as it set its pulse on our sundial and drank all hope in its spiraling eye

(there are many forms of love, you chose certainty over depth)

and once

i took a raft made of need and dragged the silty water

searching for what was lost

of us

who we were and were not

for you told fate you never knew me after all

an error of thinking … no more

then the storm left and all we knew was flat and broken

even trees we climbed were crushed like sad-faced dolls

as if an avalanche had glossed over the details

leaving behind a shiny surface and no more beneath

but dull reflection