How many women does it take?

It was raining the day the movers truck pulled up

piling furniture into the back, exposed to wet streets

everything dirty and unfamiliar

when you take your safety out of its box

when you unlatch your secrets

and expose the insides of a locket

sticky mouths seek to further that exposure

until nothing of your peace remains

but the belly of your secrets on display

as if you were sitting in class without underwear

as if the abuse etched in your soul were a t-shirt

as if his fingers weren’t in the dark but had been

dipped in luminescent paint and everywhere they went

left their grimy imprint / yet you think

this horror may have been the very best thing

as wretched as exposure may taste

at least it wouldn’t be a case of disbelief

how many women does it take?

for one person to not hesitate

how many must say;

he did this / that happened / we are not okay

because of this / why do I have to prove / with gore

and soiled soul / the truth / why isn’t it sufficient that I say

why why why

did he lay a hand on me?

how many women does it take?

a juror in the Bill Cosby case disclosed the reason for his guilty verdict;

I believed he was guilty because he said he had drugged girls

hearing it from the horses mouth got my vote

are we bidding on a horse? Did you check the inside of his mouth?

what of the SIXTY women who spoke?

their voices do not warrant proof?

were people just speaking words?

to deaf sign posts stating;

move on / get over it / don’t make a fuss / why should we believe you?

one person has lied before / you must be lying / that’s our automatic default

what hope then

for one girl?

one single soul

violated in the dark

of a house when all is moved out

and she is left inside a shell, within a shell

the echoes of trucks taking memories

somewhere else

how many women does it take?

to be heard.

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Conscience

We may depend upon nothing

except the strength of not laying down

our conscience, there in forked roadway

with the languid grace of a woman rising from steam

one direction will be covered over with water

you’ll have to learn to find your inner amphibian

and if you are successful at shucking off your humanity

retreating primordial beneath turbine waves

give a thought to those who toil above you in spirit houses

burning their feet on tar sprayed land

it reeks of our short lived desperation

like stalks of young corn, we blaze from green to gold

the sand of our time, trickling ever faster through thin glass

thinking in a fleeting lifetime we behold

true wisdom

while rivers and seas we pollute, in short-lived wake

remain behind as we turn to dust, then clay

it is not our nature to care what comes after we are gone

our footprints would not singe the serenity of nature so vividly

if gathering mercy outside our own existence, were our way

yet, imagine the unfolding beauty of caring for something outside ourselves

and softly we atoned our fits of rage, in wanting to have it all

before the sun sets for always and another day is born

Of a child

When did you stop thinking

Your bike would be cold out in the rain

Your fish may feel lonely in its bowl

If you missed a step the pavement would swallow you whole

When did you stop caring?

If teddy was wrapped safe in his bed

Or crying over the story of an orphan, ask

Can we help them?

When did you cease

Being, that person?

I think we grow less up than down

If children’s hearts contain truth

Each year we move further away

Let us move backward then to find

The next step capable of returning

The adult to their former compassion

Growing toward not from, the child who asked

Will the ducklings miss their mother when they are grown?

Will you always be here to tuck me into bed?

If I pray for granny in heaven will she visit us again?

When I grow up I want to make all the sick children well again

And I can, because I have the pure heart

Of a child

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.

The best of tales

I fell hard, such is the consequence of a colorful lure

Flickering in shallow water lit by hope

the world was messy, like a thirsty rag soaked with blood

still not gaining sustainence

sickness an albatross, urging me to frail edge

I had yet to learn that words can possess no value

be simply pretty things, we are misled by like Xmas baubles, turned over to reflect pattern

how can a writer realize, words can be emptier than a hollow tree?

people who write them, do so with convincing candor all enveloping like hard sales pitch

it’s impossible to believe they’re just words, without meaning, or worse, deliberate opposite

of truth, that sparten ideal, sucking ice for nourishment

when the wet ass hour comes, and it always comes

those who stay, are not those who wrote long entreaty

not the flatterers, cake-bakers, trumpet players

they are usually the last you’d believe, quiet, unobtrusive leaves coloring your floor

when your loud friends have quit you, it is they who step up and inquire

are you okay? Do you need help?

I learned this directly, as if fed by a poisoned spoon 

the ache of losing louder voices and reward of quiet ones, whom you didn’t believe cared

because you listened for the caucophany and wordsmiths who

know their trade as story tellers, so very, well

and I, who also wrote stories, fell hook, line and sinker

for the best of tales

the one where it’s all about them, and if you fall short you’re out

why it took so long to see, the value of things as they stand

plain in the rain, but firm of foot

is down to the fanciful nature I had

before damp veil was torn off and sickness

cast her long net and kept you underwater without purchase

in that drowning you learned, the only lesson worthy of a mortal

it will not be those who come, bearing gifts, cherry lipped

it will not be those who say; you are wonderful, adorable

it will be the person who seems aloof and speaks volumes

because sometimes a story teller is just that

a teller of stories without depth, milking our need 

they do not stay when you reach out, just the length of the tale

long or short, it always comes to an end and then

they go on to the next book and you are left

dangling with pretty words, tied in useless bouquet

now I don’t know what to call myself

“recovering” of some sort of fairytale lure

and in that recovery I find the simple joy 

of people without tall stories
 

This is to thank so much all those magical folk I did not know would step up and to acknowledge those who spoke loudest and did the least by way of mercy. Each to your own I learned and I grew.

 

Mercy

Though we were afraid
We stood

Though we trembled

We reached

Though we feared falling

We let go

Though you are far 

You caught me

Though you were struggling

You held on

Though we both felt we couldn’t

We did

And the light that bathed our rebirth

Was a mute white

And the song in our mouths

Was of gratitude

And my loved ones passed over

Clambored from their soil and Ash

As beautiful as children again

Clasping my empiness 

They claimed me anew

Standing on the bridge

One side darkness and dusk

Extinguisher of all I was

The other side golden 

You have been so missed they chorused

And at first I couldn’t bear the feeling

Surging in me like a hundred hands

But they held firm, did not let me run, did not excuse me

No death did not stop us

No life is not meant to be half lived

One foot peering over the edge

And when the bird

Red breasted and full

Flew into my room and cast his burning glow

I lifted from my expiry

I left there on the bed

My tears

My certainty of nothing

And light as a dream 

Flew outside

Feeling as if the very first

The pinch of fresh air

Brighten grey

Banish terror

Unplug disease

Renew hope

Lifting their hands to heaven

All those I thought lost

Remind me anew

You are so loved

Cone back to life

Cross the bridge

Watch isolation fade

As a dark ship will receed in fog

All was but a dream

This hand in yours

This family forsook

You are still standing

Even as landscape burned

Your strength found 

In the deep roots of a patient tree

Invulnerable to life’s petty whim

Endure and overhead

Watch the season turn on her slim ankle

And fill us with color

I have been waiting all this time

For permission to breathe deeply

And exhale 

Letting go of fear and the unknown

For those who are never lost

Keep us tethered to the living 

Even as they cross

To wonderment

In sight of land

IMG_0923.JPGMercy is an unexpected hand, steadying

Mercy feels like rain

Mercy hurts as laughter will, the first time you smile again

Mercy is a series of white flowers, forging out of bleached, dry grass

Mercy is a silver arrow, piercing resistance

Mercy is the face you need to claim, before all air is lost

Mercy is the final flood, a lost song, a forgotten book, page 456, line 34

Mercy is your imperfectly knit blanket over my shoulders, smelling of bonfire wood, shivering against wolf pelt, in necklace of thorns

We pull and we pull

Our teeth, our reach, our ankles

Until dearticulated and reborn, pass on our baton of water

Mercy is a legacy

A line in land, seen from air

The silken scar, cut across suntanned throat

Mercy is hearing them again, whether a moment or year since, beholding under solvent skies

The memory of love, held too tight, between clenched fingers

Mercy is the separation between, what we let go and what we keep afloat

When darkness dissolves resolve

Mercy lends hope