Anita

Why do they have to die?

Early and cruel

She was always carrying kindness in her every step

Why? Why the girl with stars in her eyes?

Who has always struggled

Why her?

I beseach nothing and no-one

It is why I feel we are alone

For what God accepts this pronouncement?

Why is life for some so easy and smooth

While others only know struggle and pain?

Those we cannot save

Die before their time, often in agony

And nothing makes that okay

I say, raging at Gods who don’t listen

Wondering what the point is

Where’s the sense or justice?

Evil perpetuates and survives

And you take her? Like she’s only existed to sacrifice?

The platitudes don’t cut it

This isn’t her time, this isn’t a lesson

The orphaned son will carry

Her soul as I shall remember her humility

Better than most, so much better than most

Who do not die and use their time

Unwisely and with selfishness and squander

And she is good she’s always been good

Her husband cheated on her and left her with HPV

The outcome is terminal and what is left of my heart

Shatters into pieces of one great big cry

For good does not thrive in this world, no it does not

We are all upside-down standing on roof tops

And I want to save her so much but nothing, nothing I do has any power

It is the diminishing light and the curtain drawn and closed

I cannot bear

The cruelty and uncaring

Death and its wretched finality

Are a voice in my head

They say

Words have no meaning girl

Being online is a waste of time

Online friends are not friends they forget quicker than a mosquito

Go out into the fucking air and breathe deep

Remind your limbs you are alive

Grieve the inequity of the world

And how women are marked to suffer

Do something real with the time you have

Remember those who have fallen

For no one else

Ever does

Such is the hideous fickelty of the world

Few keep their word

Least of all cancer

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FortuneTeller

People didn’t care

Just like with the Nightingale

The dead bird outside Starbucks

Didn’t warrant consideration

His feathers mottled by hot pavement

I felt

Bad I hadn’t noticed at first

But I’d been watching you walk

And recalling the depth of your coffee eyes

Whom of us lovers, has time

For dead birds

Finally a man thinks he’s brave to kick

Feathered corpse off to the side

Indicative of these times

I thought of the Happy Prince

Giving away his gold and jewel eyes

Enlisting a little bird to pluck

His riches to give to the poor

How I read that in school sitting

Elbow to elbow with sloe eyed kids who

Scratched their dry elbows raw

And the very same week we came across a dead bird

Its grave still beneath the weeping willow

Fastened by a Palm Sunday cross we’d kept unbroken in a book

Where children learn almost by hook and rook

Whether to practice compassion

Or not

I said to you; Oh look, it’s a poor dead bird

I wonder why it died? As if flung from the sky

And your eyes were hurt just as I knew they would

Because you are a grown child

I’d be bound to love

And we’d bury birds together

In every place they fell

Even if only a few care

Beginning in the playground

Watch them

Children will show you

Their future character.

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.

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.