When a lover replaces the ghost

je-tu-il-elle-1976-007-naked-women-lying-on-bedYou 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

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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.

For what they did yet not know

140829195756-22-women-in-comedy-restricted-horizontal-large-galleryYou 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

It is in horror, we see truth

horse-2565584_960_7201262177708.jpg

Before

is a color I cannot describe

a place I don’t fit into anymore.

 

Even if I am restored

things will be changed for good

for most of us there are times

that shape our marrow

could be in the form of torment

maybe sorrow, sometimes joy

often the hardest times leave deepest imprint

perhaps it shouldn’t be that way

we should rejoice our luck a little, usually too busy enjoying ourselves

to leave permanent mark or maybe, challenge speaks louder than mirth

it is easy to accept a good day like a hot bath

than deal with a bad and hollow foe

that’s when our quick is sharpened,the story of our lives written

on the tip-toe of endurance

and what if we do not want to endure?

too bad, shit happens, legs break, minds crack

we’re going to end up there at some point

better waterproof our leaking sides best we can

the ocean isn’t a forgiving mistress.

 

When I fell, my mouth filled with salt

even then I didn’t know how far torment, reached down

it was a well, beneath the sea

a second drowning

for those who long to be free above ground

shackles of the merciless kind

only then I wondered at the strength of others

enduring from such an early age whilst I

ran long in the garden, unawares, chasing butterflies without a care

thinking I knew real pain from a momentary hurt

I knew so little

just a moment ago and a life time apart.

 

I am a twin of my previous self

we stand on different sides of the same coin

I am submerged, she is still, basking in the glow of a harvest moon

sometimes I look over at her and feel such envy

anger for my lack of appreciation when I, was her

but you cannot lead a horse to water

you cannot teach a child what she must learn

getting stung on the principle, she discovers through pain

it wasn’t in my thoughts that I should be

the girl on the other side of the echo, pleading to return

I don’t know if I will be permitted

but should I ever, walk again without curse

it won’t be as the same person, but a mixture of two

once you’ve seen yourself and begged for mercy

everything alters and everything stays the same

it’s up to you to be mindful of what you learned in that maze of pain

I learned what we think of as hardship

is often just everyday life

what we believe is suffering

can be comfort compared to other lives

when we don’t think we can change

then we aren’t given a chance, we know we should have

it is in diminishment we find elucidation

it is in horror we see truth.

 

Let me back inside my life again

and I will not be the girl who, took the easy road

for she now knows, just how deep anguish can go

it is in the tangle of the briar

and the wormwood of old trees

whispering advice never heeded

by the youth who believe themselves free.

 

Before

is a color I cannot describe

a place I don’t fit into anymore

 

 

Claim

Don’t open your chest up

let the butterflies out

burn the velvet gloves and seek to trust

hands held over hands in circles

dancing to the gravy of secure claim

Don’t risk dissolution

by the marble hands of your own family

it never gets easier

a little death upon a little death

pursed words kissing with violence

and just as you know all these things

you hang yourself by the neck

that’s the fool who is a child

keeps returning to empty chairs

all fall down

such is the rope burn

when love turns cruel

when love lets you down

family existing to crush the lotus

how then does the bloom float

something wide and spectacular

with waterlogged roots seeking ground

how then does the moon touch water?

reflecting shapes of wonder against glass

the hurt is

fierce and terrible

the tiger is

open mouthed

the knife digs

deep into sound

stars blitz like warm shower

lights echo in soft purr

you can cut me down with one word

you hold the key, you are my blood

and I love you when you hurt me

more than I should allow

how do we learn

to avoid exposure when

our wrists are bound

by family ties and emptiness

perhaps the pain is reminder

life is a knife, it can butter, it can cut

if we try we can surf

the upside more than down

like migrating streams releasing winter’s cold

 

 

Crescendo

Is it an astigmatism or

The blur of a questioning heart

When things are disordered, the very edge 

Clutching bitten sides as hollow city dwellers

Imagine faces looking downward into fast moving water, seeing drowned doves

A predilection for extremes

Where daughters cut their ropy hair

And open like heart chakras beneath festive lighting in department stores

Accents donating starry landscape above

Informing choices as snowbound relatives learning to talk over cold soup

Girls in A-line skirts, boys hiding erections behind glossy schoolbooks

And the heat of asfalt, curling like collars made of beaver

High gloves, no verbs, learning how to dye mouths like hair

Standing on unstable chairs, wobbling with frail grace

Where is moral nerve? Where negotiation? 

Responsibility for one’s life, defines self respect into a set of bronze rings hung from pinched hips

Whatsoever the plan, pinned to walls to hide the cracks

Tension strung like artificial silk, Protection sitting among lotus words

Flattering our need only leaves a sick emptiness

As when your mother left and the heavy latch 

Never fell back

Locking you in

Toys and books and closed looks

Guests who leave their fingers uncurled, will be claimed

As shadows whisk the corners of sobriety, in sating stain

When all is said and done, back to earth we come

Folding our weary necks against soft shove

If you take anything, take the memory of

That first summer before the shimmer rubbed off 

And everyone was golden beneath August, like hot dancers 

Turning their pliant necks to the orchestra’s

Swelling crescendo