Ring

Your friendship is

A ring on both our fingers

We can bury it for years

It won’t tarnish

You crossed over to my world

And climbing through my window

You left muddy footprints spoiling the plain carpet forever

When I go to look for you

I hear your rustling words like music

Taste feelings like rain on my tongue

You made a fetish of me and wear it around your neck

I keep your calipso dance beneath my iron bed

For when I am alone

You are there

Velvet pocketed and never faltering

My love is

A brand I welcome

As we cannot exchange skins

We can remove our fear

Let it hang neglected on a clothes peg

Whilst we kick off our shoes

Feel the vibration of knowing

In each other is the river

Reflecting on shining surface

Deeply felt things, resting below.

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Balm

Just when you constructed your best notion of life yet

little occurences surprise, like rain on your neck

she is a woman of verdant verbena vitality

she lives in the tropics with the song of Finland

angels arrive, winging oceans

her voice wrapped in this time and others

lends a balm, sincere and lasting

like a fairy touching glass

turns dream to day

(For Raili. đź’“ ILU.)

Rune

They ran through markets

elms strung with sari’s

bedecked with jewels and

girls kenning their heads

babes at their breast

growing crowns of red and indigo

she pressed into my palm

the spell of her rune

smelling of Finnish water stone

rubbed over and over beneath time

leaves still containing their flung pigment

where slippered feet ran and picked them

casting their glass throng to glory

she has the shiny hair of a child and

cheeks full for her pressed size

she who is gone and now returned

talking in other languages with Irish accent

she who manifests and disappears and is reborn

doesn’t look large enough to give birth

or sing at the top of a road the song of her

we were

separated by water and fear and longing

broken in sea, put back together by current

I was always swimming in her direction and the

light tread of her spring

she is a carnival of paper-cut outs

wearing scarlet hose and rings on her toes

yet upward / yet down in earth where

roots inform her choices as well as ancestor

she is of me and I

am stranger and intimate

familiarity is a rubbed sleeve on silver

her thin knees beneath duvet

twitching dreams caught in muslin

tents in high wind holding their claim

sheared gravity, she is lifted from her sail

and through the tarot of her eyes

I see each snapshot and Rorschach blot

when they told us friendship will expire

they did not know

the language of ink and how

it leaves itself

swirling for paper

on which to draw

us

Stranger

Stranger

Has eight letters, two vowels, six consonants

Can be chopped to negative connotation, or extended to romantic suggestion

Strange people can find each other and feel …

Less estranged

Strangeness can become, familiar

Like the day before a storm brings the brightest day

There are angels walking among us

They may have sagging skin and loose jowels

Dirty fingernails and missing teeth

But their smile is a beacon, guiding lost ships to harbor

Only today I met one as I held the post office door open

She said “this will be your year” and her warmth was a well tended fire in my heart

We marry strangers who have become loved ones

Strange is stronger than blood

You have never been a stranger to me, the day I met you I forsaw

Us walking beneath wet trees, the deer, sillouetted between bare branches

Our wet gloves smashed together

Holding tighter

Than the fierce grip of Winter

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.

 

Radiance

Do not become bitter

When friend you thought is none

When calamity strikes her skin drum

And those you relied upon do not come

The world

Is a magical place of nonsense

What you know is often undone

By the whim of mercury and emotion

Little stays as you may have assumed

But in the hour of your isolation

Witness miracles

From the trees they unfurl

Familiar in compassion

A true heart rarely demonstrative

A kindness never published

Those with mercy on their tongue

Seek no recompense

Silently they stand at your side

Holding you when others did not show

Too busy in flamboyance

For the meak shall inherit trust

It is they who need make no false promise

Sincerity is not shouted from rooftop

Actions are louder than fancy words

Seek not the grandiose, who say they love

Take instead the slowness of certainty

You know when you fall 

By the tenderness of unexpected visitor

By gentle compassion and

The companion who you never knew you could

Rely upon 

Such is the mystery of things born in hard times

And the redemption of hope

Blooming

Blocking out disappointment with her

Soft and steady radiance

This poem is for those who selflessly were there in a supportive letter or word during the hardest part of my life. Please know it was you who got me through and my gratitude cannot be expressed enough but to say your kindness was everything to me. Thank you so very much. I have learned that true goodness comes often from the least expected corners just as those who pretend to care are often just hot air.