Thoughts in light

She has written herself off

or so she says

watching youth inherit the mantle

she stares at her own flaccid chest

in unforgiving morning sun

and tries to convince herself to gently let go

light pouring in through the bay window

creating a halo effect in surround

she is bathed in unexpected warmth

her pores absorbing hungrily

that urging intensity, a happy blindness

as if the world paused in its toil

to tap her on the shoulder and whisper

it’s not near over yet girl

go out, gather your arms full

live

live

live!

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In search of wonder

nobody reads in between the lines

or maybe everyone does

the day she removes her wig and stands

bare skulled for all to see the shroud of mud

her halo, her halo, he is four feet under, he is

not still, neither she, neither we

the ancestors who

fallow the earth, when heaven is closed

from their potential remains, beauty emerges

like a song setting the vibration in your pores

a string instrument without music

pushing back to the day before you

realized you were weeping uncontrolably

as you cycled along overgrown tow path

in search of blackberries, to stain the urge

a badger or a fox would do

something with color and freedom in its movement

take me, take me, I am not content or part

of this stifled world of pretend

I cannot even stitch straight

I see in the glassy eyes of the stuffed, pressed

hotly behind restraining glass, their silent

screaming visage

please let me become part of your make believe

I would live as Mr Fox did, beneath the earth

and brew my cups of magic there

as the irregularity of goodness atests

there is nothing worth waiting up all night for

not now you are broken, not now they are all

left, their footprints ash inside my mouth, a

late form of christening in Winter’s lament.

I miss you, the people whose faces I knew, part of me

part of nothing anymore, they are the last of my kind

what kind is that? When all was pinching and no more intact?

I am broken in ways, mosaic cannot even repair

there are chinks in my armor so raw, unpolished, without spit

sufficient to wipe the dread

they weep blood before I know they are there

no oil, nor prayer can save , no benediction

nor virgin kneeling in fecund earth with all the days

of her life ahead like fresh laundered sheets ready

for their slaying

those with eyes to the sky

they see not gods, I fear

but the winged parallel of our loss of mercy.

I am tired before I am awake

my eyes open to the sound of water

drowning is like the advent, it proceeds over a series of

days, as we attempt survival, urging ourselves to dress, button by

button, the tender details, crashing like hungry waves

against recalcient rock, what will bleed when it

is devoured? What will remain whole in spite?

Remembering your touch, electricity galvanizing

withered skin to longing, growing restless beneath

layers, your reach of me, the place no one finds

I dreamed of you, leaning over, a painting in motion,

your small hand

tethering me to the furnace of your eyes, a language

I couldn’t hold faith in, Je voulais tellement te croire

who is to say, you do not possess beneath your

candle light skin, the fur of ravenous wolves?

How to sustain faith? The thirsty plant, gaping curtain,

the light that gets through

falling on our faces as we watch dust particles

collect like lovers in ever shining quiet

whilst we grow old with the fatigue of loss,

its shroud a warmth against cold nights alone

thinking of the furvor of youth, its glossy coat

shaking off trouble like a lean legged hooker will

stand straight backed even in snow. Our tempest

for life, an appetite, whetting, scuttling blatently

down deserted roads, the roam of longing,

I tie my hair back, pinch my cheeks redder,

watch the violet play of day and night run

her unwashed glass through my eyes, leaving

a smudge of blood, a tinge of what’s to come,

the descend of love, as it bursts full and redolent

throbbing in our ears, like shells pressed tight

blocking out the stifle, hearing her thinning,

each year, a chink of life, apportioned into past

a transaction of dying in
silhouette, the boy swam

against the tide, his muscles straining, ever deepening

wade of escape, we all

keep to our tea stained hour

the rustling moment they were there and photographed

haltingly and aching behind inherited furniture

their eyes like mine, covered over with

old coin

sent to another realm, behind, stand behind

time and her exquisite fangs

drinking the lost salt of this land

her daughters

her sons

they grow weary of watching

and turning slow like dials

in dusk

their shape sharp

against the ochre

bleed of diminishing

sun

elongating until

their form is

altered ever

more.

Flowers grown in dark

Photo by Pixabay on Pexels.com

For so long I learned how

to unlearn living

taking from myself the stuffing of hope

letting it sink into water

to become sea dragon.

For so long I learned how

to unravel my sense of self

until she splayed like un-knotted parts

lost to sense, blown away

by wind and rain.

It is hard for me you see,

to understand the codes others live by

grasp a secret language of self-worth

belief in the core, where others cultivate

confidence or ego in neat parcel.

I had instead, a drive-through approach

shake-n-bake

leave the oven open

for patients to escape the asylum.

I was born a weed

between dirty post-war concrete

little watered, little attended to

I grew and persevered alongside

dog piss and empty coke cans

my color brighter than the cultivated plants

in your garden for my contrast to

yellowed grass much bleached by

urine and exhaust.

But weeds and thin things of little substance

need more than a little luck

to grow up whole

at some point I stopped leaning toward the sun

chose moonlight as my mistress

where over the oval of my sadness

I mistrusted the rest of the world

for she seemed to me then, full of

unkindness and pinches from cruel people.

In safe-guarding ourselves so long

we can easily forget

the chime of purpose

the rain of love

we think we can subsist on existing alone

that’s what I did,

survived without living.

It was long ago now, but still it seems

only yesterday at times, I met you

with your bright electric eyes and your

shocking lack of restraint, how your

madness compelled you forward with

a lightning rod as your scepter

I felt your hand reach for me

and I was undone by the intensity

of us. A jewel within a cave

that for so long held no light.

When you stopped loving me,

it rained for forty days and stayed

dry at night, I walked empty roads with

bare feet and saw flowers like I had

once been, growing fitfully by the side of

street corners, not knowing yet, what they

reached for or whether fate

or courage, would give them

wings.

If you take someone broken who didn’t know

how to be whole and you give them

love, they will either break it accidentally

in their desperation and fear, or love will

consume them and leave them unable

to live without it.

I felt without you;

incomplete, erased, unwilling

to live on, there seemed no point

for I had not learned to love myself

and perhaps I never will,

it’s in my blood, my DNA to be

shockingly empty of self-worth

I exist without living and it has become

a nasty festering wound refusing

to scab over.

You went on with your life because

for you, living wasn’t dependent upon

anything but hope, you had enough of

that to last several people’s lifetimes

it was, I think, the bequeathing of your

sickness. A magician claiming to

turn things to gold, when all he

possessed was slight of hand.

I however, did not know

how to forge hope or find reason beyond

habit for waking each morning, every

day I did, the burn grew ever deeper, never

really resisting the urge to

consume me whole. I heard voices

they would sing lullabies of

jumping from tall buildings

as others would have dreams

of flying. Mine was bent toward

destruction, a solace in the imagining

of ending this charade.

Tarnished people with little reserves

are good bait for hungry souls

who feast on their need to be wanted

with the savagery of a nation.

Since you, I have lived with dying almost

every day, the punctuated purpose of more

than wiping the slate clean, devoid

of consciousness, tantalisingly distant

I am haunted

by memories of joy like a slow

sword delivering poison

too intense for most of the world

I remain alone in my grief

binding it to me like a silent

child.

You knew this when you met me, you let

the dogs of your heat devour what

little strength was left, for survival

isn’t easy when there’s no water in

the deepest well.

I blame myself of course, as all

good victims are taught,

occasionally I wish for anger

to cleanse the pain away

even if it left just charred parts

and blackened ruin, it might

be easier to bear than

regret and memories

as potent now as the very day

I let my defenses down and you

walked in, radiant and unafraid.

WE are shelters for the needy

but so often, the Narcissist chooses

the same abode and for those of us

who grew without succor, or enrichment

there is nothing easier than our undoing

at the hands of a cold heart.

If I had a daughter I would never

let her flourish trapped between concrete

I would watch her until she grew

strong and had within her, all it takes

to ward off those who seek only to

bleed and consume what is good

and untainted. Perhaps it is too late

or maybe one day, I will learn

a way to keep growing

not just existing, and it is possible

in time, the scars of you could be

replaced by someone else. If such a

person existed, I cannot fathom, for this

world is often frozen in its

eternal demand for the cruel and

the unkind to conquer

and dance on the

fallen necks of

flowers unable

to keep facing

toward sunlight.

Still.  We.  Exist.

Perhaps in time

we will do more

than simply survive.

MAKE ME

When I’m not telling people

I am the least competitive person you’ll meet

I shouldn’t have moved to America, I am an anathema

I am nevertheless, competing with myself

to survive

the breakage, subtle and merciless of my whole

appears to be my greatest talent

should they look me up in the dictionary

I would stare out bleakly at Consequences in Fetus of Nicotine In-Utero

it began before words were formed, a slow

incompleteness quite unlike the robust energies

of my relatives

a thin, wan girl, slow to learn, I made up for it by being sporty

denying the gnawing, gnarling pain in my stomach

was more than a night terror

swimming for medals was competitive after all but

didn’t feel so when, head under water, the cheers sounded

like waves breaking on distant shores, easy to forget

noxious rinse of chlorine in verruca filled inner-city

swimming pool where small measure of fame could be found

among cast-off plasters.

Beneath water I felt powerful, unmolested, not burdened

by sandwich of pain in my gut or how

no-one for me sitting among keening spectators

when I came up for air.

Since then, fantasy has been my succor, I can’t deny it

perhaps I have lived half in petri-dish and tree house

with ‘here be dragons’ written on its door.

When teachers told me; I wasn’t behaving like a good girl

I said ‘make me‘ and spent the afternoon kicking muddy

kid shoes against linoleum hallways

what do they think we imagine as, willful, disobedient, opinionated

we are shunted from our positions as ‘well behaved’ to the

shrine of sinners lost in plastic corridors?

We learn the company of other Reparates

is oddly comforting, no-one to remind us we cannot

make sense of numbers and still struggle with spelling

soon I gave up trying for A’s

locking lips with strange boys who wanted my best friends

instead of this disinterested girl

briefly kissing felt like swimming underwater

but coming up for air was much harder.

I am teleported now into a body and time I never imagined

surviving this long or sitting at this table, watching birds

battle their pecking order outside in a hostile green world

I rarely visit

it’s not reluctance or shyness, they have grown comfortable with

the shifting skin of me

something that happens when you begin to leach

that essence of youth and vigor

realizing, if you can make it out of bed today

you’re doing better than the day before.

I hear in my head, the scold of my mother

who believed I gave myself this illness

and much as they’ve told me that’s madness

I am often found returning to those words

as if they have some clammy power over me

which of course, they do.

I know I was well and then I was not

just like you can remember the day you lost your virginity

or survived a car accident or inherited a country cottage

it’s a day when colors and sounds change

in this case, terror walked into my throat

sucking on me, whispered; bitch, this is your new normal.

Fight as I may, these years have unfolded like those

paper flowers I used to buy in joke stores

put them in water and watch them bloom

only long enough before turning to ink and

wet tree pulp

it’s a form of flaying when strangers are kinder than

those you expect

angry with yourself for not learning sooner

expectation leads to disappointment.

This could be why I didn’t

enter many races or attempt to claw my way to the top (of what?)

better to stay low and wait it out until

you can have your turn

only sometimes, waiting uses up all the time you have left

then it’s almost too late and you have to change

everything.

Nowadays I compete with myself

can I cure the beast that’s become constant companion?

Will it matter if I do?

What happens afterward?

Fear is mauve and dives and swoops like unmated Mockingbird

I hear the kitchen clock and fast thud of my tired heart

Somewhere, I’m still the girl in the treehouse who says ‘make me’

perhaps one day it won’t be disappointment but

something lovely, I can only hope

though my body likes to punch me in the gut

as I fall asleep and try to dream

thump, thump, thump, my mother’s voice

this was something you did wrong

thump, thump, thump, my own voice

no it wasn’t this was an explosion taking the long way around

even getting half way there would be some kind

of accomplishment

which is why I always said it’s not about winning

but making the effort

to which I was told, that’s pretty negative foreign-born-girl.

Where’s your sense of spunk? I think I lost it somewhere between

throwing up for 4 months on end and the doctors saying

maybe it’s incurable…. ho ho ho …. you see

I’m not from here, I don’t belong

though where I came from I hardly know anymore

so I will forge ahead, outcast or survivor, pick a damn straw

with every passing year I realize

I can’t win, I but I will fight

MAKE ME I whisper to myself

bloody well try to MAKE ME stop.

 

I AM A TOTEM OF MY OWN BRANDING

I’ve been told I’m a chronic pain in the ass

after all, it’s easy to destroy a child in an adult’s body

with past-tense words

and now in the time I’m meant to be at my strongest

chronic has visited me and stayed a long while

on a good day I think; This will not be forever

but temporary has always been a long way off

the doctors love to tell us; It’s incurable, get used to

living like this, hostage to something unknown and strange

as if that’s a normal thing to do

but if enough of us live with chronic illness, it will become normal

and that is not a good thing.

Before this …

I took chances, because you think

I’m invulnerable, sometimes I can fly

health, you take for granted

though I truly convinced myself, I had checked the boxes

right weight, exercise, organic, vegetables, no pre-made meals

(well, this is what I told my doctor, sometimes a couch counts as exercise, right?)

if I ate a slice of pizza, it was a treat with friends

though I like root beer, I never drank it

maybe making up for cigarettes, smoked in my twenties

but I thought if I keep jogging, if I keep living healthily

I won’t be felled, because you ARE WHAT YOU EAT.

A few months before I got sick, I recall

feeling strong, climbing through snow drifts and laughing

boundless energy, working long hours, feeling intensely alive

people saying; you look so healthy, your skin is radiant!

Those are not things people say now, unless

I apply a lot of make-up, to camouflage my fraying edges

instead it is me, who declines invitations

I am sorry I cannot go with you to eat, even though eating out

is the number one leisure activity where I live

because my stomach is ruined and I cannot digest much

I live plain and simple (and boring), like a nun and I am numbed

to the pleasures of wine and sauces and garlic, spices and oils

not recognizing my bloated mid section in the mirror

from the girl who once was told

she had an hour-glass figure, with a wasp waist

could run for buses and catch them in three-inch heals.

I know everyone has their burden

but when you get sick and it doesn’t go away

life becomes a series of scolds and let downs

you find out who really loves you and who harbored an anger

used the opportunity of your downfall, to insert a knife

it is the cowards way of course, but freedom of sorts

for none of us need, that kind of negativity in our lives

there is a blessing in disguise, when you find your tribe

the people who care and know the real you

not wanting to tear you apart, because it’s easy to kick you when you’re down.

But blessings do not salvage, the hours you spend sickening

remembering how you were rarely felled in past years

strong of body, sound of mind, juicing and walking ten miles

everything is turned upside down, inside out when you find

a burnt fuse, at the end of your outstretched arm.

There is no cure, there is no future

when you live, in a jar for the jarring

for a long while, I blamed myself

maybe in part, because someone I trusted told me;

“It is your fault, you must have somehow caused it”

easy to throw stones, at glass houses

I was a glass house, with many windows

break one and I cannot repair it

the wind will come in and make of my space

chaos

the sun will come in and make of my peace

madness.

Those things that brought me joy, were gone

instead, the regiment of illness strode in and stood firm

you cannot feel passion, when you are sick

ageing in hours, rather than decades, trying to stay above water

it is hard to feel hope

you rely upon the kindness of others

which is hard to do, if you are not used to it

and when they lift you to the light, you promise

if I can recover, I will try ever so hard to never be ungrateful

but with every mercy, is a dark day in hell

those days take it all out of you, like a scourge

the sickening can age you, more than a nightmare

one minute you recognize yourself, the next you are unknown

vulnerability, of not being able to take care of yourself

the expense and fear

your world crumbling around you.

These are things you get used to and when you have fallen

to the bottom and can no longer get up

that is where the truth lies

that is where you can find

your true self and the end of fear.

They tried to tell you that you were insane

making it up, all in your head, something’s wrong with that

crazy lady who pounds her fluttering chest in vain

tries to catch the eyes of doctors, with beseeching side-glance

SEE ME! HEAL ME! SAVE ME! WHAT IS WRONG?

WHAT HAS HAPPENED TO ME? WHY DID I WAKE UP ONE DAY

SICK AND IT NEVER WENT AWAY?

And yes ! Something was wrong with me and still is

not my doing, not my causing, not my dreaming

despite you saying; You bothered us, when you called and were upset

no mercy, no mercy, no mercy, that is not love.

Helped me let go. Don’t hold on to negativity.

Oh doctor, get it outt!

and if you can’t, then give me the key, the saw, the pick

so I may survive myself and somehow continue on.

Am I to label myself chronically ill, or in recovery?

Surviving or dying or all of the above?

how do you define what doesn’t go and doesn’t kill?

Spending all your money on alternative treatments that

don’t even know what they pretend to cure

how do you describe one good day, followed by one in hell?

others won’t understand, because they are well

what I would give to return, to that safe water place

but even if I did, I would not be the same

you live years with a loaded gun to your head, everything changes.

I am not me anymore

I cannot see out of my left eye

I cannot lift heavy things, with my weak foreign arms

I can walk ten miles and not break a sweat despite this and be told

by friends and foes; OH YOU DON’T LOOK SICK

I am an apparent scar of contradictions and pain

I hurt every day, my stomach feels like

something is eating me from the inside out

it convulses and retorts and shouts

“you will never win, you will bathe in pain the rest of your life”

but I will still try

because I don’t know how to give in to enemies, I cannot see

and even as I cannot eat normal food

one day I am good, the next I am dying green

even as nausea, has become my constant companion

and bottles of pills and vitamins rattle in my pit

even as I fight to be gracious in the eye of the storm

and those I thought would stand by me, try to drown me instead

I know there is still a moment

I am well enough to remember who I am

never to find that peace of mind again

but maybe recover to another state of being.

I wake in the night covered in sweat and the disinterested doctor says

“get used to not sleeping, get used to all of this, it is what you must suffer and many others do”

as if it is normal to be like this, as if it is something we should not mention

I will never think it is normal to be hijacked!

I jog into the forest, because it reminds me I am still living, my feet still work

I fight with wilted hands, when they tell me there is no hope

that I should just consign my former glories to a picture album and put

my feet up for a fifty year occupation of sofas and couches and day time oblivion

because THE POWER OF ME can overcome the power of negativity and this I believe

as I see in the mirror a girl who doubts but stares back unblinking.

I have lost my will at times

I do not write as much,  I have less energy

the last time I had a romantic dinner was in a dream and I

sleep with a heating pad on my stomach every night instead of a lover

but I still pay my own way and my own bills

I have a pride in pushing back against status quo

DEFYING the prescription of HOPELESSNESS.

they tell me go on disability. Just give up

I am not going anywhere, but to the finish line

I learned

by losing everything and having nothing but

the sheer will and dim light of my existence

I can do this without those I thought I had in my corner

because I am stronger than I realized

and this grieves me, as well as reassures me

but I come from a long line of stoic, strong women

and it seems sicker than I am, that we should hate each other

because life, surely we have found out, is fragile

and love is all that makes sense

but even without love I will continue and not

let the flame go out.

Sometimes I ask myself why?

why not just give in? Take the knife, swallow the pill

to oblivion or some non-sign-posted destination

I don’t have children to protect

it would be easy to slip out of this world and its sword edge of pain

but somehow I feel I should protect myself

maybe because others did not

maybe because you defend yourself in the end

when everything else is fallen and you are still

somehow, standing.

I am weak and tired and prematurely aged into

a hunched over version of myself

hair greying with shock, skin is sloughing off and my

body is tied to the rhythm of a sickness that purges and gluts

I was told this kind of disorder was permanent

but nothing I have found, is ever guaranteed

so I have chosen to ignore this and believe

we can all fight and overcome

anything

even a death sentence

even betrayal

even silence

and when we know this

when we are strong for our weakness

realize our tears are just water and salt

burning the frustration of our visiting menace

then, we know nothing can hurt us, more than it already has

and we are free to dream

of a future without so much pain

where death stands to the side and lets us regain

some of our former dignity

for there is nothing dignified in sickness

and you don’t know me when you said I was glamorous

that is the last thing I am

I am beautiful for my courage

beautiful for my fear

beautiful for my survival

beautiful for my defeat

beautiful for my mercy of those who have no mercy for me.

And life is a wax and a wane

life is a torture and a friend

I am the totem of my own branding

I may live in a time where nobody else of my kith and kin remain

and once that would have filled me with pain

now I know you cannot rely upon

labels of safety

it is only by looking into the hearts of those

who stayed by your side when the storm hit

even if it is one, even if it is naught

you remain behind

the tempest cannot roar forever

eventually even agony ceases.

I wish now, to be everything you were not

to love others unconditionally

care for those who are in need

be the change I want to see

I want to find myself

at the end of all of this

I want to tell you, sickness

you do not win

you are just a miasma

I am a spirit with a soul

I will endure you

the me, of me, will remain

long after, to remember her worth.

Before this all began and through it, learned

only the fierce remain

only those willing to FEEL

and not those who run from feeling

with the ease of the damned.

We Will Not Be Silenced – available now

The Anthology, We Will Not Be Silenced: The Lived Experience of Sexual Harassment and Sexual Assault Told Powerfully Through Poetry, Prose, Essay and Art is now available via Amazon. https://www.amazon.com/Will-Not-Silenced-Experience-Harassment/dp/1732800006/ref=sr_1_1?ie=UTF8&qid=1543429811&sr=8-1&keywords=we+will+not+be+silenced+the+lived+experience+of+sexual+harassment

PLEASE consider purchasing a copy or several as proceeds go toward sexual assault awareness, education and prevention and you will be actually making a difference with your purchase. We worked hard to get this project completed by the holidays so it would be timely given all that has happened this year.

All four editors of this Anthology met on WordPress and many of the contributors to this amazing publication write on WordPress and call it home. I really hope I can count on my WordPress friends and family to show some support of this much needed Anthology. ____________________________________________

We Will Not Be Silenced: The Lived Experience of Sexual Harassment and Sexual Assault Told Powerfully Through Poetry, Prose, Essay, and Art is the brainchild of Kindra M. Austin, Candice Louisa Daquin, Rachel Finch, and Christine E. Ray. The four indie writers and survivors felt compelled to do something after the strongly triggering Kavanaugh Confirmation Hearings. Ultimately, they decided to advocate, educate, and resist through art.

They opened submissions for only two weeks to women and men around the world. The response from writers and artists was overwhelming: the final anthology includes 166 pieces of writing and art from 95 contributors around the globe.

The editors decided early on that this was a project of passion and compassion, not profit. 70% of the royalties raised above the publishing and promotion costs will be donated to organizations that provide services to sexual harassment and sexual assault survivors. The editors have prioritized making the book accessible to as many individuals and organizations that could benefit from it. The retail price is only a few dollars above the publishing cost to keep the 300-page plus Anthology as affordable as possible. They have also created a Wish List so that individuals and organizations such as rape crisis centers, gender studies departments, and public libraries who might not otherwise be able to afford copies might be able to receive one.

The truth matters, our stories matter, and you can help.

We Will Not Be Silenced is available in print and Kindle editions.

 

Special thanks from myself to WordPress’s own fantastic mind Merril D. Smith for her incredible foreword to this publication.

When a lover replaces the ghost

You always said I was so beautiful

in your arms I let myself believe

in many things

now I do not have those assurances

it’s like being born again and starting over

i want to tell you, because I think you’d understand

whom else would I ever share this with?

how difficult it is for your girl

to no longer be that person

I have to grow up, grow beyond you

I’ve been living in your rule book and my own intoxication

maybe it’s like a recovering alcoholic

we took our share of hard knocks

I’m going out on my own and it scares me

I hear your voice in my head saying I can do it

find myself believing I can

on the far side of pain and loss, meeting myself again

leaving the sick room and its soft slow death

closing the door on you when you passed from me

there was only the outline left in cooling sheets

someone unrecognizable in your place

an effigy, an imitation with nothing of your gentle ways

I want to tell you I found someone

a girl who leaves me breathless, with eyes like french glass

but there’s things we can’t speak of

for some wounds, carry their own salt

we were the best of friends by the end

still, neither of us needs to know

when a lover replaces the ghost

I still feel so alone since you died

thinking I can hear your answers

on the breath of each nighttime wind

maybe I imagined you all this time

slowly forgetting what it felt like to be whole

and silence has always been my music

now I lay you down here, in the quiet dark earth

to rest, become a memory without strength

for we who continue to live must

shed the weight of sorrow

rising beyond what we thought possible

run forward when we are beckoned

until we can

run no longer

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?

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

For what they did yet not know

You thought it was bad when

you got your first zit

and the unblemished skin of your youth

erupted like Everest

you thought it was bad when

you got your first stretch-mark

and the smooth thighs and breasts of your growth

betrayed the camouflage

you thought it was bad when

you got your first scar

a thin line of emptiness which they said

the bikini would hide

you thought it was bad when

you sagged and you spun with weight loss and gain

in the span of twelve fevered months

and then it seemed

unimportant

because those scars

the immature loss of vanity and adulation

crying over not fitting into yourself

the lament of sudden change

was less than the stubborn plant of your feet

in survival

and you went to your neighbor

who was missing a breast

both of you shared

the disjointed humor of pain

and you went to your preacher

who had lost his testicle

he joked about being single

and you went to your park

saw women with brain tumors cut out

walking their high energy dogs

and you saw

this silly game of magazines and perfection

of I will stay 20 and flawless forever

of men who would leave when you get cut up and bleed

how it is but part of a bigger picture

that of sweat and guts and fear

and surviving through gritted teeth

even if he left because you were no longer perky and up for it

because you threw up at midnight instead of

giving him head

even if the girl at work could wear heels and short skirts

and you hid your swollen stomach behind swaths of cotton

or couldn’t get out of your bed

because then … just as everything seemed

to be wrinkling and disintegrating and rebuilding

into something unfamiliar and changed and partially incomplete

another man with light in his eyes

who didn’t care about such things

smiled at you as you walked beneath the yawning trees

because your medication said

avoid direct sunlight

and he said

I have the same problem which makes it hard living here doesn’t it?

and you talked and he smiled

and said

I like the way your eyes twinkle

and you said

I get that from my grandmother

even when she was eighty-five she was

proposed to by farmers who thought

she looked like a kind of Katherine Hepburn

and he said

I can see that

red

would you like to meet here tomorrow again?

and you saw the way the world really worked

underneath the adverts for boob jobs and butt lifts

and reality tv that’s nothing of the sort

his hand brushed yours and you saw

sunspots on both

it made you laugh

a little like a hiccuping hyena

and he laughed too

the survivors

beneath the canopy of life

snorting like five-year olds

as skinny joggers with air-brush tans ran past

with sad empty looks

for what they did not

yet know

Family photo

Draw a line in sand

She’s the border of one side and the other

At times unteathered

Without prediction

There’s a mystique to change if it’s bidden

And if not …

Galloping down flights of stairs in Wellington boots

Doors unlatched, bodies surge toward the wild

Leaving behind tables of cups and saucers

A black current stain on her dress, she didn’t

Care what others thought

Letting little boys see her private parts, beneath the weeping willow

Hers was the reaction

A swinging, uncovered, naked lightbulb

Denied its right to be switched off, to sleep without searching hand

She learned, the way of obedience, had a sharp taste in her throat

Better climb out, scale the walls, tear your hands than

Be mounted with his collection on a pinkering wall

To dessicate and lose color, for each pulse of his filthy yen

A gamble necessary to quit and never look back

Running on bare feet with feathers in her mouth

If she left the earth would she sink or float?

Going over the edge, empty-handed and savage

Yet .. children survive

Incomplete and clean of doubt

Their enemy known, in the family photo