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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There is a place

There is a place, to quench your thirst

It lies

Further than you can reach

And 

Nearer than losing hope

For if you fall short

And beseach the void

With nothing more than the scars of your trial

There will be no reply

From the dieties we cut out of paper and hang from the sky

There will be no response

From those Gods of the underworld, intent on war

And even calling upon Gia

She will cast a long weekend storm 

Drowning your faith in rain

Too easy to retrace and see again

The drizzle of despair, mocking courage

Only do not linger there on your knees

Carrying terror along a shiver of bone, knives on sleet

For haunted corridors have no permanent harness 

No freedom to defy, unless permission is granted

Only do not linger there in terror’s savage maw

Past fears may mount campaigns, but you

Sailed away on a blue midnight train

Wreathed in pale smoke and all unspoken dreams

For as long as you listen for fear, the record will remain

Stuck on a slow dance without willing partner

Choose your new shoes, write your own song

Frequent heartburn doesn’t hurt when you transfer to thirst

And drink deeply, for within the spring hope is refound

And God’s? They live not in clouds but within us

Lending the strength to never ever give up

The necessity of being

Men came out

Women emerged

No children

The children were gone

What happened the first month?

Outside bars and cement

Away from gas chamber

When legs and arms, mere bone

Unshackled could move once more

How

Did you pick up your lives then?

Learn the grace of living 

No one has ever said

Something so horrific cannot be vented

It can only transform into fire

from survival we are born, once more

A second life

Not a child, not young

Nor unscathed, but covered in scars

They are our metal, winking silver and rose 

We do not stand in new bones

But those that know the feeling of kneeling

Begging for the end to come

And when it did not

When we survived

Despite their best attempt to smother

It is a land of ash and terror 

To navigate and put back together

Those shattered pieces of self 

Willing meaning from devestation

How? 

With the blood of ancestors, fresh

Seeing them led to their deaths

Courage in silence, in suffering

How?

When nothing is left but the last straw 

And it erupts into flame, burning everything you were

How?

Do you design again a day, a week, a year?

With a face enured by fear

Used to screaming in the dark

How?

To go past the horror and walk into a new life?

We do it by taking the broken pieces of us

Head in the oven, wrists slashed in bathroom

Pill bottles strewn about like flotsum

All our aborted attempts to shut the terror out

We take the gore and the furnace

The golem and the hangman

In our minds eye we stand among graves

Tasting human ash whilst behind us chambers cough out families

And if that doesn’t kill us 

Nothing ever will

Because when you stand on the far side of fear

Your heart extinguished and cold, a lifeless thing

There is only survival

We are the feral leftovers

We rebuilt ourselves from nothing 

Like from clay we came, so again, a second coming

To defy the proximity of evil

We are the ones who refused to cease

Standing when nothing held us up

But the necessity of being

(For all who perished in the death camps and all who survived.)

More than we fear


If I couldn’t

Be relied upon

I would still

Try to stand strong

And if I fell

And those who are my kith and kin

Let me fall, rudderless

I believe I would still

Try to stand once more

This attending effort was not

Born to me

I was a slothful child

Idolent in summertime, slow to come home

Engrossed in the token more than press of life

Missing meaning within magpie’s shiny locket

I may blame a lack of moral structure

But it was ever my way to remain hollow, we are vessels of sound

The rod or the wild, we choose in our forming

I chose the willow path overgrown by neglect

You, it was you, years hence

Bending with an acrobats supple spine

Taught me purpose and value from your own pain

Late and much too past, still never entirely lost

On even the laziest soul, truth can take hold

I thought I knew truth

Until I learned to listen truly

I thought I knew loyalty

Until I witnessed real mercy

It was as if I had ever not, known a thing

And wiped clear of experience

Began anew, shivering in dawn without wrapping

I couldn’t see then, the other shore 

Or how

Waves are measured in metric pulse, known to moon 

I walked among prophets blind

And only saw my own, sorry reflection

I bled and believed myself insightful

When the blood was void of rust

You see, it takes rhat meterlurgic alchemy

To disipher ourselves and then, once seeing, cross that wasteland

I believed my intuition when I only saw shadows

No crucible of real direction I walked without legs, on the back of dry twigs

Until, woven with deception, snap, the pasture denied me 

Even the position of desicated scarecrow

For I was just an approximate, empty inside, tredding fallow

Without hunger or thirst, nourishment naught

Nobody to stand as sign post

If I couldn’t

Get up from my knees, though they were made of lead

And discover the dream, still in embryonic state 

That has been here all along, put away, almost forgotten

For we are, born to dream

Not to linger in collapse but

Leap graceful without weight

The chains imposed, released to fall

Cleanly from their imprisonment

Shackles are no natural state, prisoners of ourselves

Each of us has, a measurement of myth

Wings to fly and imagine if

We let go of shame and doubt

Those habits cast around us in woe

Lift, lift, oh that we could

Find the fabric beneath the world

And swim in unisen to its music

If I couldn’t 

I would not still be here

Trying to prove we are always

More than we fear

Only then

Thinking about strength

What will it take

To change out the crumpled suit

You’ve worn almost to death

Though not yet

It isn’t death you should fear

But not living

Being incapsulated

In redundant urge

Truth is waiting 

Like a small round shouldered girl

Watching herself reflect in cold river

If she jumps she may drown

But staying still is often worse

Easy to ignore when new to the dance

Easy to neglect when all is going well

We learn in adversity

We become more of our stalagmite

Or something transformed

It’s the decisions keeping us from knowledge

A rare moment, often painful, offers the shove

Over a cliff, out of comfort

On our knees begging for Mercy

But she is no God

We carve identity and battle from our own leather

Skinned of illusions

We stand dripping and terrified without defense

Only when it’s all stripped down, pared to the thinnest slice

Believing we cannot survive

That moment

We learn again

To truly fly

For Rick.

Cinder

I hope when we leave this lapsing category of malaise
It is to move toward; “All better now” and “well”

And never look back ….

At those rags that became us

Chained to a monstrous reality

Foisted like gravity

An unnatural disaster, scattering months

As what you took for granted can mock

Even the most stalwert

**

Before we were thrown together 

You were sane and I was whole

Not the vomiting wretch you met

In the dim hallway of limbo

We held onto each other

As broken pieces seek comfort

In the sharp edges of others

Not misery loving company, as pleated savagry

Misunderstood by that exterior world named;

“Those who are well, as we are no longer”

**

It was always night and always day

No difference

No discernment

To starve on the circumfrance 

You understood

The sudden loss of everything

We wrote, as violet penned lovers

On pieces of ourselves

Every tear, every unfurnished gap

Showing where parts of our whole had

Turned to ashen facsimile

**

In our former world

We may never have

Shared a long drawn breath

And here, in a room without clocks

We assemble words like kindling

Speaking of forbidden things

The rest of the world seeks succor from

Sickness you see, is a social pariah

People flee, even family

And the world could have burnt down outside this hospital

With you and I clad in backless gowns

The ribboned IV, a sharp needle with scratched song

Our wet faces seeing only the glue of disease

Dancing like embers at the edge of pinkening day

Rolling into months, as illness will smother whatever you were before

You lost the bet ….

**

Longing to leave this new role with the urgent lust of addicts

Nosing bags of sugar, to reclaim health

Though it were a fabled prize

And maybe it is 

For those shod on soft shoes

Feeling every stone beneath

Something of trauma, acts as language

Only you, only I, understand

We’ll never be the same now

Whether we survived or died

Shifting mystery within, to a new state without

Everything changes, even the taste of day and close of night

A voice

A warning

Unwelcome insight

And you tell me

We are closer for sharing a preview of death

Than friends who laughed together for decades

For fear can make strange bed fellows

**

It is true

My friend found in darkness

Reflection of what we never say outloud

It is my wish we gather everything we have left

Set fire to the pyre

Douse argument

Walk right through

Finding out there is a bridge

Even when you almost gave up

There are hands reaching 

For whatever is left after the fall

Hope

Pitches a tent in the parking lot and waits however long

And it is that 

Or maybe nothing more than will

A will to reclaim

That sets us trying again and again

With the forge of desire

Silver in a cloudless sky