The refugee heart

Todd Davidson/Illustration Works/Corbis

Before hard faced words and tightened bouquets of spite,

came silence

The child swirled in embryo, unscathed by adult cast of hate

Yet unknowing we inhabit cruelty, like a brand in darkness will

light no way but vengeance, reflecting shadows of lost conscience

against petroglyph walls

stories dissipated in forgetting what is true.

This child who once had temerity and self-worth clad about her, the vestige

of some right to exist, perhaps.

An instinct, as weeds will thrive in exhaust and skinny cats climb insurmountable

to glut on that thrashing impulse, called survival

words now scarred, like badly bandaged souls do not forget the echo

of a tender heart turned wicked, nor that merciless piercing

through skin thought impenetrable, to embrace hot metal

as if it did not catch our very soul on fire.

Once, we all wished for, love, pure and unfettered, blooming as night rose

carrying her scent against warm air, inhaling vetiver magic, aware then, of all things

our cache of hope, restless in the waves, we yield, undulate and count

moon peal across black water, spinning youth into gossamer

too fine to hold us securely.

Those burnt coals raked certain, beneath the old impulse to run

mindful of how we grow, the thirst for something real remains

tantalizingly distant

against the roar of white waves, crashing tirelessly to shore

reducing our ankles frigid with the climb, a vaunted capture

of sea — receding against open hands to places beyond

our feeble reach.

As it grows light, the footsteps of those who walked ahead

finding debris of promises washed to shore, frozen by their spent fuse

and silvery starlight echoing her distant mockery of possessing any

certainty

those, who for some reason remain here, despite themselves

hollow in the want for familiar arms to gather them up whole

pressed to a beating heart, the murmur of security bound in

crescent sky.

A reddening brings the dream, she swoops low and achingly,

casting silvered birds from their reverie

that we not succumb to our collective despair

finding the drawers and cupboards of truth ransacked and emptied

by unseen robber

and instead, wait by the edge, long in the rising sear of sun

blackening our backs with shadow

for the sound of her footfall, across the dunes, sunk in splendor.

Her journey long, she made it anyway, even in the worst heat

of midday, when insects burrow against the burn and her mouth

opened in an O for the drink of your love

a beacon on a jutting rock, watching seagulls mock the air

with white foamy lift

wanting only for you to need

in equaled measure.

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WHAT WE VALUE

Our society worships entirely the wrong animal, venerating them and reducing others to ash.

The news recently devoted a good portion of the sports coverage to how much money certain sports figures were going to be paid for kicking a ball across a field. And this in a time when our jobs are dissolving, our society is being wrecked, our economy may be irrecoverable and certain industries will cease to exist en mass. Put simply, there will not be jobs to come back to folks but apparently we still need to pay these guys billions for their service to humanity?

I cannot understand how ANY society and how any of us can tolerate/accept a sports figure being paid anywhere NEAR that sum for what they do when those who really do jobs worth paying, are dying in droves because they are not receiving enough personal protective gear to protect themselves.

When did we start paying someone to kick a ball millions and a nurse who saves our life, hundreds?

What’s wrong with us?

If I were an alien observing our planet, I would seriously wonder if we all were crazy in our assessment of VALUE. What we value. What we do not. If nothing else, Covid-19 has given us a chance to see this once and for all and try to do something about it.

We have marched for Black Lives Matter during this time because it was over-due and our raw emotions on the subject burst out of their polite shell and filled the streets with ire and a desire for equality but how many of us really want equality? Not all of us that is for sure, look around and you can see it in every facet of life, a desire to be above someone else somehow.

We still routinely under-react and permit by our inaction, serious hideous crimes like rape to go unpunished in this country and others.

It’s the year 2020 and we still think inequality for women is acceptable in some forms and fashion. Let us not forget what Maya Angelou said about wanting to vote for a white woman over a black man. She said – women were the original oppressed group, thus we should work backward until all oppressed parties are equal. I agree with her.

We still think hate crimes against Jews and telling Jews that Israel should not be their country is somehow acceptable, despite those Jews having descended from that country. Would we say the same to Black People about Africa. Of course not! So why do we say it to Israel? Because of the Palestine Question which Europe in particular has decided to side with, uncaring of the history of persecution toward Jews and their right to have some land of their own. Of course we shouldn’t persecute Palestinians either and of course, Israel has made mistakes but it’s now about what optics politicians choose and what side of the story is half-revealed via inaccurate news reporting. It’s essentially about which side looks right to support? Because Trump supports Israel, most left-wing supporters are against it. Yet it is not that simple and never should be. Lest we forget our history.

We still think homosexuality is unnatural and abhorant and that being queer isn’t natural. We don’t say it out loud because it’s not popular to say it, but we think it and we act it and gays know. They know.

We talk about slavery and how horrific it was, but half the time we just pay lip service to the deeper issues, because we don’t know our history so we don’t mention Native Americans and how they were exterminated en mass and continue to be disenfranchised. We’re so proud of ourselves for changing the Red Skins but we think that’s enough. Or how slavery has never really gone away, it’s just changed hands and outfits, but it’s still well and thriving in many forms.

So it’s never enough. Until everyone is equal and inequality and racism are a thing of the past. But will they ever be? With people who seem to thrive on discrimination and putting themselves ahead of others and putting others down? If people think wearing a mask is too much, is it any wonder they really don’t give a shit if you are sick or you are vulnerable? Don’t they just want you to die and bugger off?

Likewise with illness, with chronically sick people, it’s never enough to just have laws that allow them to not be discriminated against because discrimination comes in a myriad of differing forms. Subtle. Unreachable. Devastating. People of color have to put up with this EVERY SINGLE DAY as do women, as do gays, as do sick people. Just one roll of the eye says everything. Says; ‘we think you are pathetic‘ invalidates an entire moment.

Chronic illness is a little like amputation. Obviously anyone who has suffered an amputation will refute this and rightly so. But metaphorically it remains akin to the loss of a limb. You are left flailing, unsure of how to right yourself, and continue as once you were. A part of you is lost.

They talk of periods of adjustment. The stages of grieving: Anger for what you have lost. Shame imposed by a society who now judges you weak. Acceptance of a ‘new normal’ that includes intolerable things such as chronic pain etc. For many, those stages of grieving never really end, they cycle and you go through different dilutions depending upon how you progress.

But progress is perhaps not the right word. In our linear society where so much is expected. For someone to drop off and no longer thrive, in nature they would be left behind to perish. In our society they are carried along but reminded frequently, of their burden, of their ineptitude.

For many who suffer mental illness, physical illness, both, there is a lot of shame attached to their existing after this fact. Even as people do not come out and say it directly (and believe me, many do!) there is a thin veil that is easily penetrable. People know when they are treated differently, seen differently, worse, judged without jury.

Being ‘sick’ in any manifestation is seen as a ‘weakness’ by our society. This invariably goes back to the ‘dog-eat-dog’ notion of surviving. The weakest link perishes or is a burden to the whole. But these days, with our so-called faith and mercy in place, one might imagine a little more compassion? And if you did, you would be sorely disappointed.

Since getting sick in 2017 I have felt intermittently well enough to continue working and ‘accomplishing’. But as with any pendulum, when it swings deeply toward illness, I am right back at the horror point of when it all began, down on my knees, imploring the universe for healing. And for the most part I have done this alone, because as all those who have been sick for a time will attest, most people do not stay by your side. Even those you expect to.

You can’t plan any longer. A trip is a fear because what if you get sick? Then someone suggests; maybe it’s in your head, maybe you are making yourself sick? And no matter how many times you prove otherwise, they think maybe it’s a choice, just like being gay is a choice, right?

Wrong. You can’t rely upon yourself like you used to because you never know how it’s going to be, how you are going to be. And usually you could be relied upon 100 percent and now that’s gone and somehow you still have to plan a future, but how do you plan a future if you can’t rely upon yourself?

I try to take something from every experience I have, including negative ones. Without learning we don’t grow we just regurgitate and I would rather grow even if I’m throwing up and in pain as I do it. I have taken from this experience what is obvious, but I have also tried to take from others experiences, and have noticed disturbing patterns among those I know who have also been sick for a while or a very long while.

People leave.

People don’t care.

Poverty goes hand in hand with illness.

Anxiety and fear are natural outcomes for a plethora of reasons.

Loneliness can kill.

What I have come to see is this. Sick people are TRUE WARRIORS.

They fight the unimaginable that most of us never have to endure. They have to get pacemakers in their 40s, they have to struggle through taking 2 hours to get dressed and STILL MANAGE TO SHOW UP and this strength – this strength is what I have learned the most from my experiences and listening to others. Strength comes in many forms. We dismiss most of those forms but they are real.

I watch people who have seizures and brain tumors, fight and fight and fight and I realize, we’ve got it backwards. We should be applauding these people not marginalizing them. But we do everything backwards, because as a whole we are poisoned by false ideas of what is valuable and what is not. We toss aside those we deem un-valuable when they are perhaps some of the most valuable people in the world.

So if you are disabled in any way, be it in your head, or your body, remember that. You are some of the most valuable people in the world. Let nobody ever let you forget that. You are some of the most valuable people in the world.

This is written for my sister Angie. You inspire me every single day. You are that light in the dark that refuses to give up and because of you, I refuse to give up too.

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

Possess no place

a day may show itself

long or near from now

where pain and fear possess no place

their greedy place at your table outstayed

uninvited guests

came into your life, wrecking balls

fathomless of the despair they could put

as wicked times will have us ensnared

forgetful of former peace

hostages to the ease with which

sickness makes strangers of us.

Who inhabits this body of pain?

when did normalcy include such horror?

what lurks behind the shell of our discontent?

masking the urge to cry out with futile restraint

who do we hide our agonies from? Or is it that obscene need to appear

while and strong? While behind public doors we collapse in mock

no succor for the actor of their own wellness

Give me hope we clamoring souls sing in our flung prayer and rage

let me believe

believe again

find the keys, the healer, the drug, the end of

this

or I think I wish

I never existed

a thought I’ve had many times before

though none are without regret

some of us excel at impoverished thought.

I do not remember the me before

mornings of hurt, nights of pain

was she a creature capable of delight and desire?

did I feel alive?

Sometimes it’s hard to know

the fall is long down rabbit hole

make me

myself again

whomever she was

a better dream

than this

slow living just above not existing

hardly realized

quiet in accepted

thirst

for another grasp at hope

for any

recourse

where fear and pain

possess no place

Only child

I’m sitting in a linoleum room with ghosts, specters and occasional stranger

a girl with long legs like a foal, is pulling elastic pink lines of gum from her full mouth

and snapping them back, loudly

I wonder if I have ever sat so evenly in a chair, if I ever had peach hair, light on my skin like that

it reminds me of my friend who competed in gymkhanas, we made up our own horses, hers was called Mars and mine, BeTwix and we ran

so fast our hearts thundered up her grandmother’s hill in the La Roque-Gageac

her legs were like those of a foal,  even at eleven, the waiters watched her with wet lips

I think of The Object Of Beauty, how Liv Tyler gleamed, coming out of the oval swimming pool

What men must think when underage girls begin to fruit.

My ghosts routinely tell me, I am without worth, they remind me if I had anything worth having

my mother wouldn’t be absent

a life time of inadequacy, wouldn’t be my legacy

I disappoint myself, not just the ghosts, sometimes I think

I don’t belong in this American world, where women are proud to work sixty hour weeks and go the gym at 9pm

still feeling they haven’t worked hard enough.

I think I am forever running in the Nouvelle-Aquitaine, with my imaginary horse

watching a girl turn into a woman, aware of too much even then, and not enough

the specters mock my lack of confidence, whispering in my detached earlobe

nobody likes a wuss, confidence is the American calling card, haven’t you noticed?

Even silly people and indifferent people get somewhere, if they believe in their

silly people and indifferent selves. And brilliant people, who doubt, will fester

like a ring someone lost in a river, glitters too deeply for marbled birds to

pluck it out and restore to light.

I lost a ring once, you’d given it to me when we were 14 and I didn’t have coltish legs

or peach fuss on my skin, but rather, the strong bones of a kid who drank milk with her cereal and got a stomach ache

reading Asterix at the pine breakfast table, with her stuffed toys.

I can still hear the plastic clock and hum of the washing machine

a warm symphony of my childhood, as I delayed leaving for school

and the inevitable crush of humanity, I had long decided was not for me

in fact, my trajectory was so far from that world of push and pull

competition and attention, fan fare and nose-pick small talk

I inhabited the after school hours like an addict of one

rejoicing in the quiet and empty spaces where

my mind could roam and gallop

sometimes I would sit on the roof tops of outdoor storage buidings

eating my soggy paper bag of sweets, stuck together from being

crunched in my pocket, head stuck in a book about

beautiful places with kind people and fantastic things

wild roses growing like thoughts from arching cracks

in concrete, their soft heads and sharp thorns

not the decapitated baby bird, I buried beneath the acorn tree

its silvered blind eyes, swollen and bulging

wings pressed like cries of regret for having never spread

in flight

something horrifying in everywhere you looked

like the terror you feel when you realize you are truly alone.

That kitchen clock would change day and month

but never really the precision of its emptiness

I learned it is better, to rely upon fantasy and avoidance

than the pinch and grope of society.

Often, a stranger would ask

why are you playing outside so late?

I would run away into the eclipsing shadows

behind the corrugated iron fences that separated

the good neighborhood from the skeletons

those bombed, bleached, bones of former homes

where a kid of twenty years ago had lain

watching paper airplanes cycle

above their head, clutching something with glass eyes

and faux fur, as I still did

funny, to find some comfort in the inanimate manufacture

of nature

my toys looked at me in the darkness and spoke

words of love, I needed to consume

their salty fur held

the cups of my early disenchantment

when teachers commented on my red eyes

I said; hay-fever and they believed me

because I wore a dragon tail

this was surely an adjusted child

with avid imagination

cantering alongside her friend

with the honey colored hair and long bare arms

absorbing sun like a shining fruit

I knew then how different I was

how quiet pain, how loud silence

my mother always looked so beautiful in

floral dresses with her trim ankles and long neck

I, the stranger behind her

admiring and shameful in her artlessness.

it was among the lost in forest, I claimed my place

when first love failed, when promises became

paper envelopes containing no letter

dishing out school diner and homework

leaving my scuffed shoes at the door

I climb

into the ivy

away from the party

a reflection I see of myself

gathering stillness like a blanket

she is fetching her best smile

for the emptiness of years

staring into emulous clouds, watching

for signs and miracles and unspent words

the sound of others laughter

rinsing through tall green shadows

like echoes of

someone else’s life

 

 

Grace

If I am anything at all

I am yours

as the sun seeks the center of day to roar her rays

and sake world in golden waves

as earth breaks apart and mountains form

beneath water like temples surge

as your eyes hold me in their sway

the black of them, the holy place

as life lives beneath my skin

only when you seem to exist

there are times

captured and lost

never truly revealed

beyond our understanding

a chime of circumstance and gods

you are the priest to my implore

a song sung in aching hour

the fingers I let loose my soul

you are my gravity

you with your violet and your indigo

soul

there are places so beautiful my breath is stole

yet nothing, nothing, nothing I have beheld

can take the place of you in my heart

you are the missing part

you are the beginning and the circumference

even as I feel your knife

I cleave that much closer

it is my ritual to seek only

that place I call home within your own

we came from the same place in time

I was born of your need to be eternal

without proof of life

I exist and I perish

upon your word

you, the one I turn

you, the birth of me

you, the missing link

you, the key I wear

around my being

let me or deny me

I seek despite myself just one

who will never diminish nor could be

equalled in my heart

for some of us are old fashioned in devotion

a thorn could not penetrate more

that sea within me carrying your salt

if stained glass were more radiant

if storms could pulse with pinkening lore

if the world could find words for such things

I would still be

bare foot running the long mile separating now and then

then when you were my everything

now in the absence of peace

hither no meaning made itself known

for only in your arms I know

that steady belief and spiritual home

strike me dead the day I quit my faith

you are my goodness, you are

my grace

Totems to that absence

It isn’t my weft to self torture

but on occasion, often bidden by

emotions tumbling from rusted cage

I try to restrain them

overtaking my control

then, you are there

in the sunlight streaming through paper blinds

hurting my eyes so that all but a whiteness

is felt behind closed eyes

the unceasing wetness of tears

cause my skin to feel chaffed

even in summer

you would think eventually

they would dry up, but they never do

just as you would think I’d stop

remembering so accutely or

longing so intensely for

things near and far away and closed

as to not exist

except in my urging of them

the you, that you were

confident, slick, arrogant

I have never liked arrogance

but behind it

a soul and a heart

I wished to conquer with my own

urge gentleness out of you

like impatient bird who cries

before it is morning

I often feel, if I allow it

that I was created for you

and despite this

you threw me away

because I could not survive, or pay my way in the world

if I did what you asked

you did not care about that

but only, what you would receive

and though I remember the light in your eyes

dimming and your kisses growing

less in intensity

there are days I wish only

to touch the moments

that for me, were happiest of my life

whether that is absurd or downright

sick

it really doesn’t matter anymore

now we are lost in time and space

spinning away from the other

more and more, with every passing moment

and that hurts as if it were a fresh wound

though it is old and many times healed over

that healing is a lie

because I am never okay

without you and this you knew

when you left, it was to take

the part of me I loved best and

the capture of my heart

the days afterward were

inconsequential even though I tried

to bring meaning back, it was as if

color and sound had fled

only the flowers I bought you

linger in my mind

their lovely pink and the way

flowers must always die

just as

time kills

but does not destroy

the original love

or its resulting

pain

I do not want to spend

more years sitting at tables alone

watching my tears grow cold as

the light captures me in a moment

of you

and how you were

when you didn’t yet know

you would always leave me

the radiance of your smile

still lights my heart

followed by a pain

knowing

that version of you

shall never exist again

that love for me is now

grown over and neglected

by irrevocable doors closing

we did not know, would sabotage

something as true

as the feeling

of us

I still believe if you’d

searched your soul you

would not have let go

for life gives us few

if any

perfect

memories

too often we remain

eternally haunted by

totems to

that absence

And that someone was you

Most of my life I had a steadfast rule:

only date people capable of love

who have the courage to show you their heart

preferably girls who wear glasses, have larger hands, broader shoulders

it was a thing you see …

to stop me feeling like a beast

I had been told repeatedly when little

you’re a damn ungainly child

look at your monstrous Frankenstein shoulders

see your long white witches fingers

myopic squinting from behind trees

coke bottle glasses, badly cut hair, missing front teeth

that’s what I see, when I look in the mirror now

the girl with a fistful of neglect and a dragon tail.

…

I felt like a freak from the get-go

patch over one eye because it was lazy

wetting the bed into double-digits

work on your personality child it’s the only damn thing you’ll have

I was the girl who lived in a coal filled basement

eating would-be-diamonds in French

going out at night picking flowers before they saw sun, turning them into moon shine

then you broke all my rules

in that way you have, that’s unapologetic, visceral and bittersweet

you with your California tan and your miniature temper

you with your indigent words about love and how

some of us just don’t go there

I’d been hiding in my coal mine most of my life

my mouth was blackened from eating rocks, my teeth all broken

you shone a light on me and said

how about being something different tonight?

what would it feel like if you didn’t need promises

what did they bequeath you anyway?

egalitarian, aiming in the same direction all the time

repeat the pattern, more the fool

how would it be, if you left your rule book at home

tripped the light fantastic with me?

…

I’d built up my arguments for everything

they hung in rows like early Danish tulips

I didn’t want to be an ungainly laughing-stock

didn’t want to be the spectacled girl people rejected

don’t want to be told I was no good anymore

you showed me; if you stop having expectations

just let go, then you’re free

I’d spent my life reacting to what I’d seen

my handsome father sleeping around, my mother’s absence

promises broken, lovers lying, the torture of romance

now I realized, it’s not cute anymore, to keep repeating bad patterns

how about you do what you want for a change?

…

I wanted you

as much as I’d wanted anything

I wanted this moment

not tomorrow or yesterday

but now

I wanted your cocksure attitude and

the relief of your certainty, things don’t last

I wanted the sell by date and the last dance of the evening

because I’d be the one taking you home

and you, you were fresh-faced and confident

like only a girl who is sure of herself can be

with your straight back and your ballerina’s neck

it took this long to find out; I’d just been following ghosts

not letting myself out of my own trap

to feel the circumference and shine of life, without fear

find in my escape from self-hate, a world outside rules and confinement

something real and

that someone was you

for 24 hours or a year

suddenly time didn’t matter or what people avowed

you see, nobody knows, and nothing is real

except now

you and me

a girl with dragon tail and penchant for seeing

the glitter of sweat on your thin collarbone

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.

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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.

…

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.

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