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.

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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

Absolution

tumblr_n7uflxumP11qanheao1_1280I don’t know if there’s hope

When friend turns foe

I don’t know

Where in separation

Yoke and embryo

Glistening placenta gouache

The painter may

Render this potential life

Legacy of strife

In verdant whisker

I could have been born

Elsewhere

Or not

Chemistry

Cellular change

Alchemists with tears as

Coat of arms

We consume tangerines

The smell of orange rind

And cloves

Seasonal with moth holes

Moses climbs from his wicker man

Escaping the fire

And disbelieved share

Their bronze debacle

Lend me the mahogany deep of your voice

Bringing me back

From kimono exile

Remember

I have no power

But the truth

Of nude vanquish

Attributed to

Low lamps, proffered incense

Summoning believers

In thin macintosh bones

We are rubric

To gardens

In the rain

Bird baths for those

Needful of absolution

Those sounds made in silence

In the flat hand of glass

Reflects an outside world

Cold Winter sun calls through curtains

patient window pane lover

trees lose last of their leaves

surrendering to unclothed nakedness with the bravery of a wedding night

disiduous remain full, evoking woody balsam and night spore

surviving knife’s turn in weather

holding heat and color in humbled defeat of season

much like humanity

some can bearly stand the ravage

others seem to make a game of it

sustaining themselves on pride of survivorship

not long ago

I was a tree who lost her green

standing frail and nude

cold uneven feet on linoleum

my insides dissected by machines and tubes

the absurdity of being in pain and still

apologising to the technician

for my exposure, those things I had not adequately prepared

for who shaves their legs to ride in an ambulance?

or waxes bikini line in preparation for colonoscopy?

more men in my cavities than my entire sex life

humor in the macabre on the edge of the world

as all is falling around, the condemned laugh

I think of people fucking in hospitals and

it strikes me as the sanest response

take a stranger’s hand, strike your name on the dance card

feel the strong beat of their heart even as

their valium eyes tell you other stories

we escaped just, but we escaped

touch me where I was piecemeal

finger my edges with your need to validate

desire swells when we don’t die of our maladies

to feel once more, the warm assurance of another

weighing us back to earth

80 pounds, 90, 100, we climb through mist

to gain entrance

I sat in the coffee tinged dayroom

the same sun, the same season, a year ago

what a difference a year makes

then I was as light weight as a dry leaf

last fat pealing off me like a hot coat

nurses, seeing my bones, were mothering to me

they did not know how much that meant

because I have honed the art

of never showing my true feelings

I could be smiling as I wept inside

and you would only remark, how bright your eyes

illuminate the darkness, my love, my love, my love

which is why I need to dance

it is the only time, I am myself

aside when sexing the cherry and that I cannot speak of

for I hardly recall, what it feels like to be held

only the sheer joy of remembering touch

a hand reaching through blizzard

the nurse brought me breakfast

sat me in the iron wrought chair

in a soft voice asked me to try to eat

her caring eyes were my feast

it had been so long since anyone saw me

crumbling beneath my layers, sickness

devouring will

the illness brought me out of my exile

heart thundering

where you had placed your sharp arrows

all of you, who used me for target practice

did you think I hadn’t noticed?

I’ve been your punching bag longer than memory

it’s hard not to fight back, but I stand alone either course taken

so I packed my bags and sailed away

just to stop hurting, the ribbons of life lines

each year grief-stricken like those fish you got

in Christmas crackers, good Jews we weren’t

that curled on your outstretched palm

one direction meant fickle love, the other,

who knew? I was always left-handed

wherever you go, there you are

still injured, the pain lingering like unrepentant stain

a dying man sat down, began telling me his life

he said I was beautiful, did I want a date?

both of us in our backless gowns, how absurd

parody of finer times, when you took me in your arms

spun me around, bit my neck, caressing the

pulse

soon enough, early snow fell, sun still shone

I told myself you were waiting for me, when I got out

but you had lost your mind, many years ago

you didn’t mean any of it, those years didn’t exist

they were flakes of water turned to ice

deceptively beautiful

afterward, I drove over the speed limit, windows down

just to remind myself I was alive

but alive for what? To fall and empty myself in therapies chair

to have so much to say and nothing to share?

secrets in their eyes, glittering there

like drops of Winter, another year passing

how our roles change and still hurting

a nurse put her hand on my shoulder

don’t give up, she bent her lips to my cheek

kissed me like my mother did

once, when I was a good child

feeling in my belly, the sickness and defile

of many months lost and found

where are you now? In the woods?

as the sun sets and night falls

ushering creatures from their lairs

I walk beneath the moon and think

of how I am alone, wherever I am

giving up the part of my heart

who always hoped

I feel I have been awake a year

tossing and turning, reaching for

your touch like a thirsting pilgrim

lost in nightshade

you were never

there

only the moon and those sounds

made in silence

as we live and we age and soon

we return to earth

what we take with us

the memories of

wanting you like

flame burns wood

to create brightness

even as they both lived

one must consume other

in this mad

world

I wish I had never existed

The deepest cut

an-apple-rotten-on-the-inside

It doesn’t take much to knock a bruised fruit to the floor

watch it split apart like rotted glass, shards of damp skin in slow motion

try as I might, I AM that bruised fruit

try as I might, I cannot seem to recover myself back to where

once took for granted, the feeling of wellness

it doesn’t help when someone you loved abandons you

in the middle of your darkest hour

things like that aren’t supposed to happen

people who swear allegiance and loyalty aren’t meant to

be the ones leaving your side

such is the hour and fickle fan of illnesses devour

at least I know I’d never treat someone, that poorly

despite this and because of it, healing is slower

though I suspect anything less than fire would be

I didn’t know these things beforehand

the un-annointed do not possess future perspective

to see how illness strips your childish faith, cleaves you

bare and gasping

where family didn’t need to see me, even as I spent weeks in hospitals

it cut me to the quick, but it wasn’t the first or the last

maybe preparing the groundwork for your deepest cut

they say you get used to it in time

I never have

just as I never have truly understood the cruelty within some, who profess so hard to love

now, I am a changed person

I cannot make plans like I used to, thwarted by my body, haunted by ghosts

my illness is like a cobra, she stays quietly in the leaves

rearing up when I least expect or when I want most to escape

her possession of me, the way she knows how to tickle fear

with just enough venom until I am on my knees

I am sure some would say, this is therefore; psychosomatic

that it what they tell all women of hysterical turn

I saw in your eyes when I told the horror; your own disbelief

until doctors produced the proof, you still wondered

it became apparent to me, just like with sexual assault

being believed is paramount to recovery

alongside having faith in ourselves

I did not do a good job of the latter

finding myself more alone than when I started

and I thought I started pretty alone

I know I am a survivor and I was not destroyed

yet it feels like I was

when I look inside myself and find

so little left, a house without windows

it was only because of you, I kept trying

I told you that, I said, you were holding me up

when you let go

I fell to a place I did not know existed

I wanted to ask; Couldn’t you have just waited

long enough to see me through the worst?

but you wait for nothing except your own need

I had to find a way to stand even as everything crumbled around me

which is the biggest test I ever had and I failed it

I failed it again and again

walking through the lullaby of desiring to die for so many reasons

not least, the never-ending dance with sickness and pain

but somehow I did not die, I turned instead to stone

when people say I am strong now and ask; How did you get through it?

I don’t tell them; I am not through it

I still lurch and shake in the throes of unnamed demons and at night

I feel like an arythmic god has taken me and is spinning me

on high-speed like all my parts are made of jello

I want to ask that god; what is it you are trying to shake loose?

surely you know by now there is no more fruit left

not even the rotten kind

that fell and split and sunk into earth, a long, long time ago

it is only me remaining now; leafless, without sturdy branches

I cannot rely upon myself, I cannot rely upon promises

no longer a young, untouched tree with green shoots

I am damaged, broken and hobbled, by this specter and the unknown

as much as by those I knew and trusted

asking why to the imploring void; why are we stricken down?

to what do I owe my continuing? Even as it is, insubstantial

can they see in my eyes, when I pretend, I am trying not to gag?

my appetite spirited away by the scourge and never returned

I would die of hunger and not know it

were it not for some strange determination

I don’t know where that comes from

but as I stand, it must be a place within me

does not give up, as she did not, all those years ago when

the flames licked the top of my house and burned, everything I knew to cinder

I am not like the rest of the world; stronger for my poison

nor am I able to disguise my scars

if I were asked what recommended me; I could not answer

I would probably open my mouth and howl

because you can reinvent yourself, a million times it seems

I am just one incarnation, coming apart at badly mended edges

you, who are able to vault life in gentle sprint, must mock

I am after all, just a fallen fruit, lasting as long as she can

in imperfect, bruised skin

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.