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.

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Water


Do you believe?

In

Things greater than 

Yourself?

Do you believe?

In 

Miracles?

Do you believe?

It will end and you will 

Rise up

Out of your bed of pain and fear?

That it will be gone

Dissolved like thin snow or frost

A beautiful nightmare?

Vanquished are the ghosts

You will in time not

Recall the laminate corridors

Antiseptic sting and gag reflex

A night nurse plunging needle

The faces behind morphine dream

Your room mate gasping as if 

Being ravished by herself

A chink of light through heavy curtain

Of hope

A scarescrow angel, you kept the hounds at bay

And mark, in my heart, pressing jewels to forlorn crown

Each gummy bear, red, violet, purple

Like bruises and flowers lain slow

You visit me there, in the crook of my arm

Where anihalation takes her naked bow

You wipe my cheeks of salt, bestow your own token

Posies of disease, viruses for the clean

Small bird bones picked lean, glossy in bleach

They watch her take the boat too far from land and wink out

Like a smudge on the line between life and horizon

They would 

Ask her to turn herself around

Return to the ward, the pill bottle, the undergarment of her lurk

But she has already begun 

To dissolve

Like fine powder

Moving on the swell of clouds

All around birds make noise

And drown out 

The feeling that

She has nothing left to burn

But the thin blue line holding

Our faces out of water

The memory of fire

Most habits

Are learned lazily

Incorporated into being, before aware 

Of what it means to be.

A habit is a slothful fellow

Whispering in our ears;

You’ve done it before

Come sit by the fire 

And watch others rush at life

Put your aching bones close to the warmth

Feel the security of what you’ve gone and done

So many times

And if you were asked

To break out of your stupor

Throw water on the fireplace, dousing heat

And with no preparation

Launch into a violent rain storm

Obscuring your direction

Lashing your sides with chill

Would you follow?

Thrill seekers maybe

The very young, the chronically overlooked

That girl with braces who wanted to be the busty blonde

Maybe they’d fall like extinguished stars

Into the storm

And from their yearning to matter, to win 

They’d keep going long after the memory of fire was lost

Fighting without knowing why, on the off chance

Suffering brought you nearer

To really living and grabbing by the throat

Its beaten heart

Or you may forgive yourself

The hesitancy of those

Born fatigued by knowledge

This world’s loose knots and fallen heroes

As a splayed chess board can be used

For kindling

I used to imagine outside my window, the clamoring future

Now

I sit staring at flames 

As they consume and turn to coal

Painted stages

And it is the soft stir of moonlight

Lifts my gaze 

Watching the edge of time, rub herself dry

All things will come and go

Whether we chase or remain rooted

It is the repetitive homage of a circle

To revisit ourselves

Standing beyond shelter

Contemplating beneath infinity

Our place in the universe

Seeking wholeness


My core may seem

Tired

The flame dimly lit

My eyes may be glazed with

A heaviness that will not lift

And yet

I am also

A firebird

And yet

I am also a child of this Earth

You can

Force me to surrender

But I remain

A little defiant

I used to fight back

I forgot the art of war

In adherence to well trodden rules

I bent into something lost

But I am not

Broken

It is my nature to dissolve

When four rivers convene

It is in the terror I see

What must be done

For when we wish most to end

So we have

Begun

And it is time to take that journey

To light 

The far tower

That it be bright enough

To bring back

All that was 

Whole

Step outside

The doctor

who is 47 and wears a baseball cap

she doesn’t look her age, even her hands are unlined

but she knows her stuff, telling me, it’s a virus

got into you, maybe by the loosest thread and working its way up

attacked your spleen like, a well placed fist will split even hard skin

opening up secrets, spilling them like spaghetti squash, reveals its jewel

thumbing through test results, her eyes raised imperceptably

we both joked at the irony of finding a virus, good news

by then I had, a long list of debtors, thinner wrists, curled with many knots, my mouth was parched from staying open

who knew I’d learned so well, the art of begging and beseachment

and the phone, if it were not disconnected, would not have rung because I’d found out 

those who stand in faded ink on birth certificate, are not interested in, the lurch of misfortune

you see, some people, they need warm weather, even in Wintertime

and cannot abide, a cold chill or sudden snap

and I, poor dear, had quite broken my luck on the roulette table, as it spun

a soft sound much like the running of a bath

my turn to fall

their turn to turn, face away, pretending, such misfortune doesn’t happen

they are acrobats of self-deception

I don’t condemn it

it gives me the outline of which to begin, a new family tree

it will not have many branches, perhaps will look deformed

but as the arroyo dries in hot Summer, lines leave scores in red earth, pointing a way for journiers

and there are people who come

from almost nowhere

bringing solace

like a well tended light, burning from animal oil

keeps alive, that creature within us

needing, oh so needing

I touched them, with burning fingers and blistered lips

I couldn’t form the words to say, how much it meant

walking in their step and how

the measure of their coming lifted me

from a place i’d never been nor wished to return 

emptiness is not, an acquired taste

the doctor, she can attest to that

I see grief in her stride and hope in the words she feeds me

as we create over the loom, something resembling a coat

to wear when the weather gets cold

and you have to step outside

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.

 

Vibration


The teacher

Her grey hair thick and spilling

Chanted Om in quiet room

Filling with vibration

The beat of our efforts

Twisting, turning against, Winter’s pinch

She places her wide palm

On my pain

We say nothing

The movement is our language

I see my thin arms

Draw in unknown strength

Holding me up, though I would lapse

I remember being seven

A year since my mother was gone

The door still too heavy to open on my own

Practicing in a room of adults

One lady had a long back and narrow waist

Another, cast her shoulders against

Cold draft of late arrivals

I was relieved to be 

A child

Not yet held to standard, free to swap error 

Watching others

Pile obligations on their shoulders like camels

Bending low to earth

Forgetful of the impulse

To stare into the sun