I wish I had never existed

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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.

The Analyst & Peter Pan

Holding tears beneath excessive eye-make-up

not smart when pealing secrets from heartache

I noticed the Analyst had cut her hair

in Jewish faith, hair is a woman’s greatest vanity

to cut it, often a sign of extreme despair

I cut mine when I was sick, it fell like a lambs tail

to the floor in red scissored ribbons

in the mirror I looked like a shorn stranger

trying to climb out of familiar eyes

reminding me of the time I sheered it off at 16

my lover left me soon after, he did not care for short-haired girls

I told the Analyst I liked her new look

wondering if there was a story behind it

the never-never velvet glove of Pan’s world

his need not to be a he or she or have a Wendy

instead to be free as we are at ten when

nothing of this world can truly touch us

gender becomes a learned yoke in the future

she recalled her sheer days of freedom

wishing to return as we all do, to a kinder time

I do not know if I am this or that

but I know what I am not

I felt it was honest, when you do something big

there is always more of a story behind an act

I sat looking out of the small office window

remembering sitting there before

sick and heaving

thin and fat

slump shouldered, bare-faced and dolled up in war paint

I remembered

driving to you and dancing in my limbs

as I saw you look up and wink

changing the light with your smile

knowing

I will never leave that office and find you again

because you were gone even then

I just hadn’t known it

too sick, too set on denial and fever dreams

perhaps when you know you will never experience

that feeling again

it is harder to let go, watch such a large part of you, fade into background

you are grieving she said

her short hair in her face

I thought of you and the pulse, laying like a long empty road, between us

my heart squeezed with a terrible pain

children flying from an open window into stars

tears splash on my skin, like your touch

which I will not feel again in this life time

so you pronounced with granite in your eyes

and I nodded

dumbly

unable to say anything more

but watch the light

skip in and out of the small windowpane

where once I held

as much pure love

as Peter Pan

debris of the unsaid

row-boat-painting-surrealism-woman-dreaming-row-boat-in-hair-beautiful-painting-art-row-boat-in-storm-paintingOnce

the storm

predicted and prepared for

still

blew away the thatch of your house

sent water pouring like words with lament

and whilst

i was sickening

i thought I heard you row

across the expanse of us

holding your roof as umbrella

your feet bare and needy

opened my cabinet of questions

gave you a draft of why?

to which you descended beneath brackish waters

places submerged in lost question

claiming to surface

a moment where you spun in orange pekoe light

sitting stroking Gato before he

tested his claws on a tree the buyers tore down years hence

i climbed that tree in my high heels

you took a photo aping for the camera

and one fixing your sink in mini skirt

that’s my girl you said

we bathed because then you had a bath and I had heated arms to wrap you whole

the ocean of the past drawing in and receding

with it, debris of unsaid and unchained

time behind and unrecoverable

Once

i told you I was sick and couldn’t swim

you held me above waves with your will

till you decided I weighed too heavy

on the stitch of your skin to keep

we both

and neither of us

strangers and familiar

deciding and without decision

lost that year to the storm

as it set its pulse on our sundial and drank all hope in its spiraling eye

(there are many forms of love, you chose certainty over depth)

and once

i took a raft made of need and dragged the silty water

searching for what was lost

of us

who we were and were not

for you told fate you never knew me after all

an error of thinking … no more

then the storm left and all we knew was flat and broken

even trees we climbed were crushed like sad-faced dolls

as if an avalanche had glossed over the details

leaving behind a shiny surface and no more beneath

but dull reflection

In her cull

Before

Who knew how to die?

That it wouldn’t be instantaneous

As children imagine

A sudden pain, then unconsciousness

Who knew?

Death could go on years

Building and slowing like cold sea water

Burning firework left to fizzle alone in inky sky

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

Who knew?

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

The jarring and bumping eventual colission held at bay

Till forgotten

That it could take you

Suspend you from me and all familiar things

Where the recognition in your once clear and beautiful eyes

Became muddied and clouded with quiet violence

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

Who knew

The courage of fighters

Seathing against their sentence and eventual

Chop chop of parts, scars and marred

Skin once free of blade

A scratch board of operation knives

She reached me

As I sat in my safe world

Pulled me through

I smelt anticeptic

Read her clever whirring mind

Far too smart for this dull world

How can such people die?

She laughs and says

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

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

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

When skiing downhill

Her lips are red, she says

I used to ride horses and can speak five languages

I say

I wish you would stay

I could read you eternally

It’s the macabre and giggling nervousness you feel

Around dying

It brings out the worst or the best of us

I wanted to bolt

Race down the road

But I remain and listen

To the gurgle of her catheter

And saw the bruised clouds grow

As rain came like tears behind pitched fingers

Her humor never left

She knew more than all of us

What a terrible, terrible waste

She said; I can make an authentic French 75

I wanted to swap places, I am not so rarefied

But I am a coward

Before the machinations of surgeons

What devour they do, to our poor skin

Does it really prevent anything?

She asked, laughing at the cat

Who is also old and infirm before his time

Still batting the window when birds come to peck

At crumbs of comfort because it’s those little things

She says, keep you going

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

Reminding me I can still

Breathe

I learn to appreciate life

From her dying

The morsel of me

Though of language I only know two and

Cannot spell in either

It seems

Life is savage in her cull

The bright and wonderful snatched

Who among us had an idea of

How to die?

Then she laughs

Her teeth still white, her skin waxy and hot

And says, oh dear you!

Who among us

Knew truly

How

To live?

Thrift Store Special

teddy1

If I hung in a storefront

I’d have no label

It was torn off in the wash

The store owner lied

Trying to cover a great crime

I’m not gentle cycle, nor wash below 30c

I don’t fluff up well in dryer

Or need ironing on low heat

I’m a thrift store special

Good for a gander, then better cast off

Stuffed in the back of your closet

Forgotten until you move house

When you hold me to the light

Exclaiming; where did I buy this?

A little wistful, a little disgust

Just like a spare thread can run

Through any knit and mar its form

I was shrunk on hot and stretched in cold

Long before you grabbed me out of the lucky dip bin

It was the elongation of my experience

Like wool is malformed turning huge in water

Expanding and reducing, I am the sheared sheep who took off

When the shepherd came to my turn

I never backed down, nor avoided spitting in their eye

My fur smells of energy and emptiness and freedom and neglect

You wear me when you want attention

Or to be someone you’re not

And I’m sequins gathered in a pearls bosom

The knotted mohair and impossibly soft angora

But most of all, I’m the time you left your possessions behind

And rode in the dark without lights

Imagining your bicycle a horse and you …

with your dress catching in the spokes covered in oil

You just wanted him to catch fire on your edges

Sounding the cavorting need you had to bloom beneath

Then you were a water-lily and even years later

You are reminded each time a candle is lit, the smell of wax

How he burned your fingers with his inelegant desire

And you opened like origami to his bewitchment

Then you were a dragonfly, passing through fountain

If I hung in a storefront

I’d have no label

But you’d purchase me all the same

Over again

Smiling

At the memory of

Something you couldn’t quite grasp