From basket deep

Clamboring, chiming, turning inside out for lack of space

Urging in one cold grey wave of fur and teeth

Lolling tongues, hot breath, slobber and frenzy

From a distance, life resembles a dark river

Cutting through early frost, hungry for warmth

And I think of the man who paints this bleeding scape

Of land into water and flesh undulating, back to earth

I wonder if he knows better than us, how close we are to one or the other

By just a pinch of his ink stained fingers, held up

To guage perspective, before he dips his brush and renders

This mist of mouths, graves and birth and sour roots, twisting through

Surviving even as skies douse and sun bakes flat, yet beneath myriad

A soup of souls closing and opening by ritual of tide

And still, life, clops down the cobbled street, hawking seasons from basket deep.

(Inspired by FEDERICO GARCÍA LORCA, especially the line, han venido los perros de plomo.)

Advertisements

Six Months

Illness is the defining point. It tells us if we have been going the wrong or right direction, it forces us to our knees, we find out the truth whether we want to or not.

I’d been blessed with good health. I didn’t even know it. I thought those who were tan and never got the flu were healthy, surely not me, I often felt a little rough. But I didn’t know what ‘rough’ could feel like, I mistook a morning allergy or sleep deprivation or a headache or stomach-ache as suffering. I had no idea.

I could write a book about this. But for now I want to write the most important salient things. Namely, what you learn, where you go and crucially, what you should AVOID.

You should avoid thinking the internet is some kind of medical reference library. The majority of information online is actually negative, it can scare you senseless. It can misdirect you, it can make you give up.

If you Google Gastroparesis you would come to find out it was an incurable, little-understood disease that would cause chronic life-long suffering for all who were diagnosed with it. You would not find out that in many ways, it is an umbrella term, just as many things before it were, that it is completely contradictory pointing to gross error in definition and that there are so many reason(s) for it and presentations, no one size fits all.

I often wonder who decides to write; Chronic incurable disease. Don’t they know what that does to people?

It’s pretty scary when you Google a disease and find so little on it, and what you do, is negative and bad-news. When you are sick you need hope more than anything else. You desperately search for it but all you find are horror stories of suffering.

That’s why I am writing this. In hope that if ONE person who has been told by their doctor they have Gastroparesis and has found the horror-story world of Google, they may see this and have their hope restored.

You may think … what’s the point of having hope if you might end up with a chronic incurable disease? Exactly for that reason. And because there are many things UN said about most diseases and many experiences NOT documented that should be. They say there are no cures for most things but so often there are ways to cure the body that go beyond what is ‘said’ and well documented.

Gastroparesis loosely means a motility disorder of the stomach (it doesn’t move right) which can cause a paralysis of functioning which are known as Gastroparesis attacks that often lead sufferers to the ER. When you experience Gastroparesis it often is 24/7 with cycles of ‘really bad’ and ‘bearable’ symptoms.

What the internet will not tell you and what the poorly trained doctors in most ER’s will not tell you and what the money-hungry Gastroenterologists will not tell you is if you get diagnosed with Gastroparesis, it doesn’t even mean you have it, and if you do have it, it doesn’t mean you will always have it. Yet if you Google Gastroparesis, most sites from the Mayo to the Cleveland Clinic will tell you it is incurable and may even lead to you having a feeding tube.

The first time I read that, I searched and searched the internet and found NO story of someone overcoming Gastroparesis. In that moment I lost hope and everything became SO much worse.

I was lucky, in that my family doctor thought to do an Epstein Barr Virus test on me, it came back VERY positive, suggestive that it was a virus that caused the symptoms of Gastroparesis. If you add ‘viral Gastroparesis’ to your search term, you may find some mention of virally-induced Gastroparesis going away in 1/2 years time.

I found out that it’s what you pair your search words with that brings up the right articles, and by searching in more detail I found tons of examples of Gastroparesis symptoms going away after a virus and the period of time needed for the body to heal from the nerve damage (much like Shingles). The average time being 1/2 years, some longer, some shorter.

Nobody told me this. Everyone told me Gastroparesis is a Chronic life-long disease that you will always have, and there aren’t even any good treatments for it and if it gets really bad you will need a feeding-tube and you may even have a pacemaker in your stomach implanted. Not once was I told there was any hope. If my family doctor hadn’t thought outside of the box due to having a similar case a couple of years ago, I may well have found the highest bridge in my city.

It got me thinking … we need to be more responsible about information and most positive. I’m all for realism, and anyone who knows me knows I’m not always glass-half-full but when you experience the negativity of the medical system and the incompetency (and the sheer cost) and you get only bad news, you quickly realize that something is very, very wrong.

If you are reading this and you have been told you have Gastroparesis or you suspect you might, bear in mind, for every negative story there are stories of cures and remission and complete resolution of symptoms. It depends upon why you got Gastroparesis and how you body copes and how you cope. There are things you can do.

First and foremost, you’re going to feel like never eating again, you may become anorexic unwillingly, because who wants to eat when they are sick all of the time? Nevertheless, keep eating, eat like your life depends upon it, don’t quit, eat through gritted teeth, eat when it makes you cry, because your body needs its strength and this will get you further away from the risk of having to be fed via a tube.

I felt a moment where I could have given in and quit eating, because truthfully I HATE food with a passion right now, but I hated the idea of a feeding tube even more, so now I eat even though I am NEVER hungry, NEVER have an appetite and hate food. I eat enough although it is very, very hard and some days I throw up what I eat and I have to wait and begin all over again. It has been a total nightmare, a complete living hell, and many times I have wept with fury that I ever have to eat again, but I remind myself of those who have NO food and I remind myself of my goal (to get well) and I eat.

Second to eating, when you have the lowest points where you may have to go to the ER to be rehydrated, because you cannot keep anything down, don’t forget that THIS WILL GET BETTER. Keep telling yourself you are strong, you are healthy, you are a warrior, this may lick you but it will not beat you. Remember during a really bad period where you are sick EVERY SINGLE MINUTE that you will recover, you will feel differently. Hold tightly onto that.

I have been BLESSED with friends who have helped me through this. My friend Mark is now my brother, he has been more than I could ever, ever have wished for and I love him dearly. It still astounds me that anyone like him could exist. He has selflessly given and given and given, even as he himself suffers. He is the perfect rare example of a truly selfless soul and has renewed my faith in humanity tenfold. I may not have had much family support but that has been made-up by the support I have had from my friends and it is true, in sickness you find out who your true friends are and often there are more than you realize.

Let me take a moment to thank anyone reading this who has been one of those people, I have thanked you personally but please know, your mercy literally has saved me from the brink.

So if you are going through this yourself and you have anyone – reach out to them. If you do not have anyone, contact me and I will help you. We must be willing and able to help those who go through these things because they cannot do it alone and should not have to. I will write more on this as I go through this – I am going to recover. I am going to get well. I will document what I learn to help others. We need to pay it forward.

Finally (for now) take the experience and grow from it. For me, I have experienced crippling anxiety with the Gastroparesis symptoms, the doctor(s) told me this is due to the nerves being damaged and how the mind-gut connection is so close, what feels like mental anxiety is actually physical anxiety and you cannot tell the difference. It feels like a huge panic attack. There’s not much that works against that, except taking some type of anti-anxiety medication in the short-term or long-term if it helps. I used to think taking pills was a last resort and yet, it’s sometimes necessary, to get through really hard times.

I have learned that if you had any anxiety beforehand (which I did) it will be exacerbated by Gastroparesis symptoms and you may also experience other issues connected to the reason you got the symptoms in the first place. In my case, Epstein Barr often causes very bad fatigue. By understanding what is going on, taking sublingual Vitamin B6 and B12, you can keep your immunity up, and keep your hope alive. After all, even if it’s a year from hell or two, it’s not your entire life.

That is what I am trying to hold onto. I may wake up heaving every day right now, but I’m hopeful that won’t be the case in a years time. I panic and worry that it will go and then return, but what I have to do as my friend told me, is take it day by day and not imagine worst-case scenarios. I can honestly say the advice and support of others is how you get through the worst of days. I may be too sick right now to work and I may be broke but I am more grateful than I have been in years, for the kindness of those who have extended their hands and said ‘let me help you’. Those words are a miracle.

My friend Mark says what helped him the most with his illness was to pay it forward, and focus not on himself but on others. I hear him and I am attempting to do the same. Currently it’s day-by-day, some weeks are unbearable still and I pray to die, whilst other days I can almost remember how I was before I got sick. What I do know is, if you get sick, with anything, don’t rely upon the internet as your go-to, and don’t isolate yourself. In my case it was my family doctor, not the fancy high-paid Gastroenterologists, who found out what had caused my sudden and violent symptoms. I have learned so much from this experience and continue to.

If you’re reading this and you feel hopeless, know that you are not alone and there is hope.

Just when she thought she was complying, she raged and broke apart

Things at a distance …

The child learns

Not to burn herself on cooker top

Not to hold someone to their word

People don’t always return

Love

Things learned at a distance

Words do not describe reality

Reality is not as they say

Life is funny and tastes of rain

One moment it flows then everything stops

Changes course

And you

Child

Sometimes you are forgotten

For adults

Don’t always recall

The necessity of keeping their word

 

And that child

Grew with restraint and without rule

Clad in scraps of query and uncertainty

Unobserved, she learned not to learn

She didn’t sharpen her pencil and master how to take orders

Her mind they thought gifted but her’s was just a glib mouth with fast words

Sounding beneath the press of water, betraying its weight

Underneath she had no end to her dislike of being told what to do

And they told her

You’ll regret the way you are

Discipline helps breed patience

Patience is honed a virtue

She had none

Never learning her multiplication tables or grammar

She slipped as she ran

Away from the rod

He’d hit her you see, too much, and caused a break

Until she didn’t know how to mend her cracks

Only fury lay

Between her fingers spread against the sun

Silly frivolous fury, the kind girls are mocked for

Usually they are scolded, Child don’t you know? Real suffering exists! True pain! And you have so much and you dare say you are discontent?

Even the shame of knowing on the outside she was a white parody of excess and indulgence

With her predictable dysfunctions all signs of a weakness of spirit

Delving into emptying with hands tied by nurture and the unbearable shake of seeing

If you just got up every morning and jogged, if you just put that cigarette down

You save yourself you know

Of course she knew and like a woman weighted with stones she wanted to walk deeper into the water because every scratch of her fabric was flawed

Why did you let me be born?

Why not give my time to a marvelous well-adjusted mind who will study science and never play hooky?

She played it all the time and had nothing to prove nor music within her movement

No piano to learn

As long as someone

Who wanted to learn

Would

 

And she

Wished to walk in olive groves hurting her bare feet with dry shrub

As the Corfu sun burned her scratched arms

Creating ugly stains for how she felt inside

Marks of time mottling her skin

Brands of all the times she tried not to be

Herself

And invariably

Returning to the mirror time and again, a looking-glass behind her eyes

There was her father’s jaw and elongated forehead

His thin red weathered skin tried by the hour

When they found out some DNA was stronger and certain people were genetically likely to outlast others

She laughed

Because she’d known that for years

You only had to taste the quality of their time

and in the future

They ran dry like a Texan Arroyo long baked by merciless sun

 

Her father once said

You reap what you sew

and she has thrown herself into air

With no seeds and no design

Just the bare howl of being aware

Knowing the grief she was ashamed and compelled by

Ticking in her imperfect hiccup of a soul

Unable to avoid the error of her need

To rebel against the majority who never seem to mind

But plod perfectly in time to some hidden chant

While she spun, losing ground, hurting and grasping

Never ready to fit herself into a shape commensurate with moving forward

If there were an edge to the world she’d be the one to push herself

Off

From the outside who would know?

Manon_1Born unhealthy

never bruised

from the outside who would know?

the script runs, ticker tape without parade

bleeds over page

paper makers who grind words flat

pinch their rabbinical noses and laugh

huffing ink turning to night’s best epitaph

words words words

what if no language were taught?

gesticulating without benefit of lamp

deaf to injury, blind to plight

what if I shut you in a box and told you

start over, be something else

when your cocoon matured and sticky with life you reemerged

what would you choose?

if not language then

how to describe the pounding of our skinned hearts

pummeled by trespassing probiscus

or fear or loss or something beyond vowel and verse

such as it is

greatest emotion has only, a mark within person

no color no lines no regular interpretation

I put your citrus fingers on my shoulder

stay the curve, feel the hurt and rhubarb joy

rising and falling collapsing bestowing

levitated notions buried and choking

no accent no ethnicity we come from no place

we are no one

in a world sucking through graceless cherry straw

the fervor of acquisition and absurdity

our stage unheated flat and spartan

we learn no lines no mantra, no soliloquy

the actor stands and reveals himself

without pretense, wig and powder

shining underneath a hot summer pulse

blue raven turns his glassy eye

in shuttered shift of crimson cloud

toward cloth moon and catches hare’s quiet

spring

into infinitum and beyond boundary

speak to me

speak to me

speak to me

use what you have within

 

 

Phantoms of the brain

d9d211db6d31da697392b5cd34a9bdb4

Diana

didn’t intend to develop schizophrenia

which masticated within her brain regardless

of her want

inking pathways and dissecting certainty

a railway of colors lost in submersion

until Capgras Delusion bloomed

the moth of dissociation a star

sewn grossly on her shoulder

branding in disorder

 

Diana

didn’t mean to

self mutilate

causing a bald spot on her scalp to form

like paper becoming chinese lotus

a whirl of follicles perfectly circular

she wholeheartedly believed men made exact copies of people

“screens” that mimicked reality but were not

there were two screens of herself

one evil, one good

 

the good Diana

presented her doctor with a plea for help

I don’t want to be consumed by the whirl she said

biting her nails with reddened lips

the evil Diana considered if

she could reach the pencil and sink it in

to his rotten false arm

you’re obviously a fake she wanted to scream

I can see you! I can see your falseness!

like tar on the beach you wash up dead and stinking!

 

the good Diana kept quiet

this takes time to prove, she thought

sheltered behind her bamboo mask

tight and affixed with unknown glue

where once in a while she’d peer out

tongue lolling against wood

limbic system walking with disabled emotion

feeling like she was looking out of someone else

phosphorous haunting versions or a lighthouse

void of lamp

never finding her way back from cliffs edge

into phantom self

 

(Thank you to Vilayanur S. Ramachandran for his inspiring paper of the same name)

B side

franccca7oise-dorleac-photo_03One

There you play your favorite B side and drive in your mind

fermenting beyond chicory

no-one else knows

basking in old songs

she finds the segment of Clementine

hidden from view in liquor box

melting resistance

as nationalists surge in Catholic crimson

could be now or a light house seeking ship

printed beneath creamy lost voices

 

Two

She could propel herself with saline drying her toes white

transfixed on survival as

Boudicca led bronze and stone fighters

daubed azure over thorny field

if she lived today she’d share a Menthol Salem Light with Stevie Nicks

warning women against Xanax

in Miu Miu sunglasses

capturing the drum-beat of her many-armed dervish

as a little girl learned to spell

sounding out her letters

heroine in slow motion

A

B

C

fire

walk

with

me

Ode to a former eating disorder

4aaa633391cd85cb22d2ded208bc71dcDarkling

I write thee in remembrance

for fourscore years you kept me prisoner

and I held you in esteem

(purge the love / hate the sin)

like any love affair we only broke up

when I wiped the vaseline from the lens

distortion revealing her bent

a thin and lost emotion

buried like an apricot stone

in the pit of my stomach

where a wan tree grew

and nourished me toward

the sky

sometimes I am reminded

of the tight hold you had

like reigns on a horse will

cause them to drive ever forward

even when removed