Anita

Why do they have to die?

Early and cruel

She was always carrying kindness in her every step

Why? Why the girl with stars in her eyes?

Who has always struggled

Why her?

I beseach nothing and no-one

It is why I feel we are alone

For what God accepts this pronouncement?

Why is life for some so easy and smooth

While others only know struggle and pain?

Those we cannot save

Die before their time, often in agony

And nothing makes that okay

I say, raging at Gods who don’t listen

Wondering what the point is

Where’s the sense or justice?

Evil perpetuates and survives

And you take her? Like she’s only existed to sacrifice?

The platitudes don’t cut it

This isn’t her time, this isn’t a lesson

The orphaned son will carry

Her soul as I shall remember her humility

Better than most, so much better than most

Who do not die and use their time

Unwisely and with selfishness and squander

And she is good she’s always been good

Her husband cheated on her and left her with HPV

The outcome is terminal and what is left of my heart

Shatters into pieces of one great big cry

For good does not thrive in this world, no it does not

We are all upside-down standing on roof tops

And I want to save her so much but nothing, nothing I do has any power

It is the diminishing light and the curtain drawn and closed

I cannot bear

The cruelty and uncaring

Death and its wretched finality

Are a voice in my head

They say

Words have no meaning girl

Being online is a waste of time

Online friends are not friends they forget quicker than a mosquito

Go out into the fucking air and breathe deep

Remind your limbs you are alive

Grieve the inequity of the world

And how women are marked to suffer

Do something real with the time you have

Remember those who have fallen

For no one else

Ever does

Such is the hideous fickelty of the world

Few keep their word

Least of all cancer

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For my first friend in America

Your hand covers mine

we clasp for the camera and smile a 100 watt smile

The American Way

I have learned

how to park a truck

that pale legs are not

as anathema in Texas as in Cannes

I understand, ordering drinks you size up

trying clothes, you size down

topsy-turvy world for a foreigner

lost in her baggage claim.

You made me feel

easy and comfortable like an adirondack chair

smooth wood, deep grain, eccentric shape

this became my town and in so many ways

it was thanks to you taking the time

to show me the way to fit in

the candles dim in the windows of the bar

as if they know you are now gone

where the bird died and we buried it

flowers grow up and a little crepe myrtle

as if forever our steps, will be marked here

mountain laurel blooms wildly

across splayed streets replete with thin cats

seeking their breakfast at Taco huts, the color of watermelon

where I ate among the gladioli without fear.

In the beginning

you were like Tiger Balm

rubbed over my fear, I was no longer shivering

could make my way through the throng

as good as anyone

your watchful eyes on my narrow back

seeing how I did, urging me onward

how will I continue with you gone?

Family, you said, comes from the heart

you may find someone you love in the strangest places

I found you in a Chinese buffet eating Won Tong soup

in my skinny jeans and piss and vinegar

you asked me if I used to be a dancer

I said yes, and now I unravel for a living

you took under your wing, that juniper girl who

didn’t know how to fit in to her new clothes

taught her the measure of her adopted land

like the time we planted trees and you warned

never forget to be merciful, to those less fortunate

the sky was pure blue that day, on the wind

the smell of honeysuckle and river lily

white cranes flew languidly overhead

we shared Limeade and Tortas, our feet dipping in hot puddles

I recall

the first time you were sick

I said, you reminded me of my grandmother

and you frowned; I’m not old enough!

But what I meant was

she had a strength, nobody else could see

every time I went to school she’d wait

in her high-waisted pants of crepe or wool

tight curled hair, wearing oversized sunglasses

below the stairs, nodding with a wink

mouthing the words; You got this

and I’d go into my classroom with a 100 watt smile

not fearful anymore

nobody saw that side of her, just as

people dismissed you as a Jesus Freak

seeing past the strength of your resolve

to live with love

I admire those; who have mercy and compassion

I look to those; who are loyal and unafraid to love

it is the weave of this girl, to follow in those footsteps

bring kindness, do good, lend yourself to gentleness

when I grew sick I saw, how many live with

anger and resentment, undoing their humanity

until they are unrecognizable and only breathe

the exhaust of their bitterness.

To the rose

opening this day

after your passing

I say, O glory, O beauty

live in the sun

as radiant and perfect as anything I have known

and I hear your voice, see your face nodding

you got this

I want to run backward and say

please don’t leave me, don’t go

but I know you have to

and I have to go on

alone but holding your wisdom

your mercy

in those lessons you left

imprinted upon my heart.

Moonshine

(inspired by finding an old photograph of a fancy-dress party I attended at University that I hadn’t seen in years)

One of them is me

but which holds the key? Later perhaps we

shall know our fruiting journey through

maze of youth

and slow pull of stocking

for kind of touch best found

in satiny afternoon glow

outside I hear my dim-eyed neighbor

mowing lawns until he aches silver

because his wife has turned away

nobody touches him anymore with

the dreams of yesteryear

so we sprint toward each

invisible finish line

with emptiness in our hearts

filled with busy distraction

nothing lasting, nothing to

endure or sate cold claim

of climbing into bed

unwanted or alone

the feel of darkness, our shroud

from terrible disappointment

and then

then I had it all and didn’t know

standing on the precipice

we laughed at our indomitable

facility to thrive

not yet diseased

not yet rawboned with stretch marks

nipping their silver lines like unwanted lace

or sagging pieces shaking to no

good beat

not yet diminished on shallow waxen wheel

of male adoration

though for me this was never

a piece I wished to carve for myself

it was the love of a woman I craved

like first drink from fountain

on a hot day with no clouds in sight

languorously we exult

in

crocheted certainty, time will stand still

make for ourselves exceptions and grand entrance

the labor of hope so easy and lubricated

then

we’ll never be shaken off

like a dull wet thing

nor left to gather dust

as something once favored

we are surely, gleaming warm heads

of our own personal state

if I could have heard the warning

should I have been able

to listen?

likely not for

day is long and hour far

we take lovers for bread and jam

hate yet a curiosity

our parents live robust

we can yet still, the freedom to

go home

there are structures protecting

the hollow timber of our hearts

from these days what we can we learn?

as growing up and away

truth becomes stretched and gray

friends falling away

the bounty of never-never coming to claim

her inevitable duality

delight in youth, for contrast is cruel

all should have its value

but we are flippant with our boon

and when the cold night comes

we usher ourselves to greater darkness

in the strangeness of change

not able to see what is portent

nor later

the freedom

released from expectation

to unfold our wings

take flight

no more a shining thing

but something effervescent

and filled with

light

casting its thrall

as long ago, diving for pearls

we claimed the moon

The wounded eyed girl

15Before I knew myself, uttered out loud the words

labeling me a this or a that or a who knows?

I developed feelings for a wounded eye girl

we were kids really, dressing up as Japanese geisha in my room

all festooned in asian print and a little tea set I got for cheap

from china town

we wore chopsticks in our hair and bowed ceremoniously

singing the only song we knew in Japanese

with The Mikado playing in the background

I liked her thin arms and her prominent nose

her knock knee urchin look and bandaged soul

I liked how strong she was even as she looked like she’d fly away

most of all I was attracted to her wounded eyes

for there is something heady and bewitching in

pain

and its infinite manifestations

we’d dress up, I would paint her lips scarlet, we’d put on

funny accents and roll on the floor looking up at glow stars

I still had stuck there with movie posters of vampires

she would fling her arm out across my chest,  tell me of herself

pouring out the suffering of her short life

and it was an awful life before she was

brought to this city we lived in, both from somewhere else

transplants, orphans, ghosts of ourselves with missing DNA

she would tell me of her homeland, how

her father beat her black and blue for

being a girl

why as she got older he took

each of her sisters one by one

and they didn’t come back

whole or even

well repaired

I wanted to lick the pain from her cheeks and hold her to me

until the wound healed

but nothing I could ever do would assuage

the wounds behind her dark brown eyes

so we played as little girls do

building camps and tepees and western saloons

once I played a prostitute and she a cowboy

I cocked my head, snapped a red garter and asked her;

want to have some fun soldier?

she laughed, such a lovely laugh

her black hair and coffee skin, shining with fantasy

she didn’t like being herself anymore than me

we got into our pretend saloon bed

I served her a pretend shot of whiskey

acted ‘saucy’ the way I had learned from TV

she rolled her eyes laboriously like a comedian winking

pulled up my petticoats which were real

and at one point had been my mother’s wedding dress

when she married my father, bare foot and broke

with a velvet ribbon tied around her neck

and our fingers explored each other

as we giggled and changed our voices to all the favorite

TV characters we knew

I think I even tried to be Sue Ellen

I wanted to tell her then, not to stop

to press my mouth to her pomegranate lips

touch her swelling breasts with my own lack of

run myself like a cat across her saffron skin

but even then I knew

damage makes bad bed fellows

we soon changed the game, to cops and robbers

climbing out of the window, swinging from trees

though in every story

there was an element of romance

I thought of the old shows I loved

where the actors were always

dancing around the circumference

of each others heart

how in real life sometimes they married

I told my father; Oh see! Oh see! pretend things can come real!

but some cannot

and she and I grew up

once she told me she had always known I felt like that

I blushed dark red because of course

thinking I’d been subtle when watching her changing clothes

she married a blonde haired man and moved to Australia

had a little boy and hopefully

a ceasing of her alotment of pain

because more than anything I wanted that for her

even more than the beautiful moment

of two girls

laying in sunlight

laughing at imagined things

for the rest and peace and escape

of anything real

 

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.

In her cull

Before

Who knew how to die?

That it wouldn’t be instantaneous

As children imagine

A sudden pain, then unconsciousness

Who knew?

Death could go on years

Building and slowing like cold sea water

Burning firework left to fizzle alone in inky sky

That it would wind and unwind, a mad clock void of correct motion

Who knew?

It could take the very young, wrap them in wool, to cast down wet hill

The jarring and bumping eventual colission held at bay

Till forgotten

That it could take you

Suspend you from me and all familiar things

Where the recognition in your once clear and beautiful eyes

Became muddied and clouded with quiet violence

Your touch so soft, stolen and replaced with flinty brush off

Who knew

The courage of fighters

Seathing against their sentence and eventual

Chop chop of parts, scars and marred

Skin once free of blade

A scratch board of operation knives

She reached me

As I sat in my safe world

Pulled me through

I smelt anticeptic

Read her clever whirring mind

Far too smart for this dull world

How can such people die?

She laughs and says

At least I’ll go young and whilst I have my looks

So long as you don’t show the undertaker my scars

They remind me of barbed wire and grey hair and the lines you cut in snow

When skiing downhill

Her lips are red, she says

I used to ride horses and can speak five languages

I say

I wish you would stay

I could read you eternally

It’s the macabre and giggling nervousness you feel

Around dying

It brings out the worst or the best of us

I wanted to bolt

Race down the road

But I remain and listen

To the gurgle of her catheter

And saw the bruised clouds grow

As rain came like tears behind pitched fingers

Her humor never left

She knew more than all of us

What a terrible, terrible waste

She said; I can make an authentic French 75

I wanted to swap places, I am not so rarefied

But I am a coward

Before the machinations of surgeons

What devour they do, to our poor skin

Does it really prevent anything?

She asked, laughing at the cat

Who is also old and infirm before his time

Still batting the window when birds come to peck

At crumbs of comfort because it’s those little things

She says, keep you going

Like my favorite soup, a funny film, the sun coming over horizon

Reminding me I can still

Breathe

I learn to appreciate life

From her dying

The morsel of me

Though of language I only know two and

Cannot spell in either

It seems

Life is savage in her cull

The bright and wonderful snatched

Who among us had an idea of

How to die?

Then she laughs

Her teeth still white, her skin waxy and hot

And says, oh dear you!

Who among us

Knew truly

How

To live?

Ring

Your friendship is

A ring on both our fingers

We can bury it for years

It won’t tarnish

You crossed over to my world

And climbing through my window

You left muddy footprints spoiling the plain carpet forever

When I go to look for you

I hear your rustling words like music

Taste feelings like rain on my tongue

You made a fetish of me and wear it around your neck

I keep your calipso dance beneath my iron bed

For when I am alone

You are there

Velvet pocketed and never faltering

My love is

A brand I welcome

As we cannot exchange skins

We can remove our fear

Let it hang neglected on a clothes peg

Whilst we kick off our shoes

Feel the vibration of knowing

In each other is the river

Reflecting on shining surface

Deeply felt things, resting below.