Even

Even the light

Is different

Testing the dura

Of oxygen

Without you

Even thirst

Has no desire

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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.

Guilt


Guilt

Is a rare bird of shame

Its plumage

Breathtaking

For guilt

Captures the beholder, willing or not

Averting gaze from all else

Guilt will render paradise dowdy

Comparing freedom with the chains of its capture

Guilt is an old, fond bruise

Reminder of moments left torn to shreds

It will piece them carefully back

Twice as convincing, twice the weight

Strung round your neck like noose of sea pearls

Begging to be drowned

Guilt is a rose bush with bleeding thorns

A shudder as you catch yourself thinking of

Those pursed secrets you’ll never disclose, even to yourself

Snapshots you expunge, that still, listlessly, rise from the depths

Never speak of it, even to the merry faced doctors 

Plunging their needles as far as they’ll go

Guilt

Makes you sick

Wan faced, old before your time 

Aloof in the varnished secret

Guilt

Steals your liberty 

But like a lie

Guilt is not vanquished, even by truth

There are things better never admitted

Keep them so deep inside you start believing the deception

Until

Like a wide eyed bride

Guilt takes your hand 

And plunges you back where you’ve been all along

There’s no solution to shame when it’s too late to undo

The poison that you drink, the person you’ve turned into

Guarding yourself like a wreck against sharp rocks

With less and less by the day to salvage

If you spoke it out loud

Surely the very sky would catch fire

How many of us must carry a spark?

Burning in our secret hearts?

And maybe this is why

You never know another person by what they share

Instead

It is the unsaid

Electric in the air

We recognize in others

The tarnish of shame

As clear as promises once given

Cannot be refunded

The fragile cast 

Tell me again

To be fearless

Tell me again

To depend on myself

I am yet a child

Still holding her toy by the ear

I am feeling you give me

The hard water slap of advice

Cold on my cheek, formerly warm.

You say

It’ll toughen me up

But I already know

It has wrought the reverse

I am not

A leathered creature of your creation

I am already 

Quite changed and mangled.

Whilst you 

Suffered and carved expressions from granite

Still you were told, you were a marvel

I was weighted down only with disapprobation

And your searing brand of tough love

Tore me further without support

Gave me greater fears, made me feel alone

In a room full of sound.

You cannot rob a child of their ego before it is formed

Nor nurture one empty handed and pickpocketed

You cannot protect a child by harm

Broken is broken.

We all require, when we start in this world

The unconditional faith of others

In a look, a knowledge, some portion of belief

In the validity of us

Lifted just enough to see over the edge.

Life already begs to steal the best 

We cannot survive by being cast into fire before we learn to walk

It doesn’t forge stronger bones

We live as ash, insubstantial invalids

Longing for the strength of kindness.

Before you break a child

Think of them twenty years from now

Grown on thin gruel and scraps

We who stand in the tempest 

May appear whole

But in our essence we lack

The varnish of other’s meant to grow us tall

It is in the stained radiance 

We find the courage to face the world

Bestowed on us by those meant to protect

The fragile cast of a child.

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

Tell me then

20150820121056_00001It’s not all about me.

We look up at the sky, wondering who is looking down.

It’s not all about me.

As we age, moments catch us like snags on

favorite cardigans

mended but never the same

too good for charity, too flawed to sell

value in sentiment and what was once

at first glance, flawless

as if such a thing matters after a while

too late we see this

after years of staring into mirrors thinking

if I were just a little prettier they would … love me, desire me, need me

it’s not all about me

or the holes we mend, attempting to recreate

but you find that out after many errors and so

is it any wonder the old will smile wistfully and proclaim

youth is wasted on the young

just as bras that are uncomfortable

are the domain of insecure girls like I was

clinging to images and totems

rather than digging my heels in and

staring upward at the sky

heavy with impending storm

so we left our youth like a shed skin

and not knowing of this wasteland stumbled

catching glimpses of who we were before

fear made us raw

the taste of elements on your tongue

every superstition a reminder

what you don’t know can harm

and then

letting go because the weight is

crushing you into absorbing mud

drying your scream

wondering

what did my ancestors feel? As they walked

witness to the stillness of night and

the unseen murmur of what could and is not

like a giant ships knot

impossible to pick

halts momentum

I stood like an ice princess

poised to act

and turned to fat

turned inside out and back

like a flipping cat will somersault maybe eight times

landing on his feet

my soles are sore

with the burden of myself

all those unlicked envelopes containing

individual tethers to places in time

experiences, terrors, lessons

and the well-worn knees of an ardent repenter

who throws down their sin

and still it sticks to him for one and the same

we become, with our habits and our movement

gliding through the years like ivory comb

will stick in tangled hair and pull

some loose

I dangle

from a mountain of my own making

all the aches, those childish glimmers

reflecting across the lake like

long fingers will create sound

we move to instinctively

tell me then

how to absolve myself of the penchant

for avoiding hard things

tell me then

how we live, in still life, arranged on a table

like hot watermelon, freshly sliced, drips its

sticky insides

tell me then

the exact mixture to eliminate that

terrible awareness you have

mastered easy ways out

only to find yourself

grown over with maze

tell me then

is it too late

when the hour strikes

and your reflection is almost unrecognized

to return and begin again

that clear, straight path

you once believed yourself on

before you lost courage

Wait for obvious things


Was it me?

Crouching rubber hipped

The plane delayed by fifteen hours

Mother’s placating screaming kids

Dry eyed travelers, bent over wilted luggage

Back then I didn’t know 

Rubber can stiffen

I thought

I’d be in supline pose with windows open, aubergine clouds, seeing hope

In hot tarmac with planes, belly full, lifting off

Taking longing to new places 

Is it wrong to tell you?

Twenty years hence, as we fumble to claim waivering identity

That I was more sure then

Crouched, rubber hipped

Than ever since, watching planes taxi in

Spent and decorate with exotic scents

It doesn’t feel lonely if you watch how the world talks

Without humans

Hear the russle of late afternoon

A breeze from far flung continent, chiming in minds eye

Awareness of being, nourishment of movement

Peace wrapping around my shoulder

Just then, conscious

Of the infinite fragility and gratitude

To rise and take, moment to appreciate

Our small place, in this wide place

As alone we are, part of something

Far greater than our impatient wait

For obvious things