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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Out of time (2)


I’ll save you a place

On those days

Where waking it takes all

To muster gratitude

Yet we do

You and l

Find the fox path through thicket and dence bramble

Where light footed children before us ran

Soft in tow, elongated against shadow

Spilling their amusement like hay seeds

And stubborn burr, clinging to wool coat

Just in case it should grow cold

Then from our tree house

We’d forage for kindling

And brighten the alcoves of elm and foxglove

Just like when you were gone

Sealed in a room like you’d boarded a ship and steamed

Through hectered expanse, combed wild with distance

So far I could no longer hear your metronome

When windows flung like outstretched hands, you played Eric Satie

Able to conjur emotion without perfumed love letter

When all I had was a supple back and trained muscles

Dry with chalk, head bowed, waiting to mount and vault

Gymnast or star catcher, seems likely both

Such peacefulness in throwing out fears

With a twist of wrist, a spring and leap

When you do not hold back, that’s when you see

This world’s underpinning like a great silk train

All the seasons following in ivy headdress

Who knows the mood, a temperature of pick pockets

Punished or saved, sometimes hard to tell

We are like an indigo building storm

When weather is calm you can never tell

Invisibly, out of sight, burgeoning swell

Blowing cracked cheeks, gathering momento

If you keen into white noise, leapfrogging over din

Whispers on wind, gentle turns to fierce

We are so like our Creator, twisting at whim

Or by design

Either has the thickness of a stranger’s hide

Not our timid hearts, cowering at first lighting strike

Out of time, urging forward despite ourselves

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

Last night


Last night, The Devil called

He said

I’m calling in my marker

You have the wrong stiff, I replied

I’ve been scared stiff too long

I calcified

Turned into crystal

Split apart under armadillo sun

Melted and became a resin lingua, beneath surface, hearing murmur

Of half forgotten plea 
Smoke me if you must

You’ve got the flame

Though displeased not to gain my soul, ponder this …

What you cannot snap in two

What resists

Will one day be called beautiful

And all that pain it took

Just to keep walking

When the sun burned you to clay and turned you finally to river mud

When the last ounce of yes I can

Si su puede

Became Holy Lord I cannot endure

When you felt yourself

Wilt like wax candle of the saints, in midday sun

From alive, to oil, to fire and back again to blood

When Demi-Devil’s mock human weakness

Whispering in your shellac ear
“Try your hand at Lady luck”
You know

As sure as the pain

Will come and sear that moment, right from you

A ripper of joy

Wielding guts by the garter

That no ideal lasts as long as your breath

Captured in entreaty
Oh Great Ones

Who stand, past and present

And know what we, of salinated water, shall never know

Lift us up from our pain

The fear gnashing blind over tattoo soul

Lift us up high enough, to see beyond the mountain of defeat

And like children from their deep sleep, we feel renewal

Fingers of comfort, rounding in caress

You see, evil has no hold, over courage

And still it is okay to say

I am scared, I am weak

When in our transformation we will become

Light

Extinguishing a little of the fear gripping the recess of survival

Refusing to drown 

Say it once

Say it every time

I am still

And the wind blows cool

On my wet face

I feel you near

I know I am not alone

I open the window and whisper

You can still

Hear

Skate


Sickness is my latest Paramore

She is more attentive

Less fickle

She sticks like late season honey to the insides of my fever dream

A purple moth with nectarine probiscis

She hears my chest rise and fall

Like carefully tilted chess pieces

Will release balance and find

Greater purchase in uneven defeat

Yet

I remain undefeated

As if by whim

A last horrah

Like a Rosy cheeked girl with retrouse buttocks

Tips her mirth at the crowd

Who in unisen rise 

Fat, thin, butter fingered and pianist

To cheer her abandon

As I turn my hot cheeks your way

Facing one another in the skeleton of dawn

I see your need of me

So insate and thundering

And though selfish mayhaps

I entreat

Pick another

I spent much time unraveling

Yet I remain

Stubborn and glassy eyed

A drunk patient of witchery

Somebody without many pockets

Containing Combs and honey

Yet my lips are sweetened by the shape

So simple and elongated

Of one more turn

On this thin ice

I bring

Few coins and less 

Courage than a child

But if you release me

I will have 

Remembered yet …

How to skate

With the beauty of her temperature

15319260_10202291446205021_9072796197672683666_nConversely, paradoxically it has come to

envying the mania

a relief from sorrow

where creation can once more grow

unimpeded by sloth of emotion

covering us like autumn leaves bury unaware

I suffocate every time the heavy hand comes around

and when it is gone I come up for air

but the passage between light and dark is not extreme

not like the mercurial soul who soars high above themselves

I watch them fly so far

I can never muster that much

my energy is a stone well without water

during the darkness hibernation

and when the light shines it only

lightly pierces

like a ray not even sufficient for hope

will wake the sleeping from their nightmare

long enough to know

yes there is another world out there

but you with your rubber gloves around your head

cannot plug yourself in

you are restrained by the amount of light

weak and far ahead

where angels fear to tread

and mania dances hedonistically

with the beauty of her temperature