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

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

The way

Yes
You can take away my last wrapping

That I am lain unclothed, on that unwilling baptism

Behoven to the whim of mankind’s mercy

Or 

Whether chance shall triumph 

Playing her arched long game in red taffeta

Or

The turn of weather vein encompassed betwixt fate

For surely

It rains where rain is least required

As once verdant lands, feathery and skeletal in need 

Their leathered thirst a distant drum beat

We may rend our chests in trying to reconcile

What seems without mercy

As the seeds dry before they reach

Nourishment

As the sun turns away from its hungered crop

As a girl is dragged off, just for showing the ragged hem of her ankle

We who comprise of water and salt

Sweeten nothing if spent in pursuit of filched agrandisement

Forgetful of those who once were brothers, sisters

Pausing toil to climb the jagged mountain

Sharing water beneath wide branched tree

Who has seen the come and go of little things like ourselves

Heard the speeches and secret vanities whispered into night air on polinated breath

Whose roots alone dwarf our fidgety pretention

All at once magnifying

The worth of an honest man, a kind neighbor

The brilliance of a blue throated starling

As language most timeless can be found in the grateful eyes of a stranger

Taking the long road together, as water shall run

Again in dry river beds

And show us our rightful way

Breathing

It’s just a story we tell ourselves

We will be well

And even Gods forged of longing, cannot always save our plea for preservation

And please, some peace

For the weary, are not the old

They are the ones who know the sear of unwanted pain

An ache rising like wave again, merciless in return

The loss of dreams comes softly as snow

We dream ourselves complete

Waking unable to breathe

This sheltering land sometimes permits tornadoes

When all around shakes, we are battered and bruised

And because we still stand, others never witness, the deep sink of our soul

Or indeed, that dark place we go

When night only burdens with unseen fear

A temperature, a loss of balance, this unknowing doctors touch, with gloved hand

As we find ourselves, subject to midnight

We, who have never been this person

Arising, as if we could separate and escape, inevitable places

Was it really me? Who gasped for breath and cried out to spirits never tested?

As has always been for each life line

Thinking invulnerable, tugged back to truth

All of us wear a harness, all of us hold an allotment

It is the wicked mirth of terror when first we gaze into our future and see the end

No amount of protest will stave

But maybe, maybe with light and courage

With nothing more than salved persistence

We can hold back that day and spend one more

Breathing

The last

250px-Scared_Child_at_NighttimeNothing is always a hard and fast rule or outcome

we cannot predict as well as we might think

divining over two sticks to find the source

I know this as I know my own heartbeat

for myself and many others

not having children makes you hold onto yourself too much

you value the debris and memories and fixtures of your past

with emotional microscope, unable to grow beyond reflection

as if they were your child’s blanket, your child’s first tooth

you look at self portraits

feeling the emotion a little less of love approximating love

self-love isn’t always narcissism

it reduces however like a sauce

until there is less than more

while loving another expands

until it lifts us off our feet and sends us into the air

that kind of love frees us from preoccupation

obsessing and writing ourselves over and over

this is my life, this is my dog, this is how I am, look at me!

your gaze shifts to another, you learn how little you matter

how to open yourself up, love someone else without end

suddenly you are not important and unconditional is

 

it is funny to imagine my mother knowing this more than I

it is sad to think she was a mother and we do not have that in common

she has walked where I will never walk

and though it was hard for her to accept

she knows more from having been than I ever will

I who still hold onto, my own memories of me

the only child who wasn’t meant to thrive

living up to her proportion

not obsession or self-love but a lack of other

diminishment in legacy

there will be no follow-up

no future after I am dust

the line will simply close

like it was cauterised and sealed, never having existed

 

at times I feel I owe those in the past

something more than quiet death

or history forgotten and emptied

dressing corpses with semblance

but I have nothing more to offer

no search for fame or history

I am simply myself

who at the close of day will inherit the sum

all who came before, all who will not carry on

an envelope licked and sealed

sent away to the dead letter depot

 

I look at my hands they are empty and long

I think they look wistful as the feeling inside of me does

if I could stop considering myself

hording small memories in tight boxes

holding on because if I let go

there is just an empty glass

neither half full nor half emptied

gone is the liquid of the future

I am it … this is all

now

and it feels disquieting

wrong at times

to be the last of my kind

I think of how it will only grow stronger

as they die and I remain

watching memories like old films damaged by time

 

this may seem bleak but if you stand solitary

watching the entire world play out their multiplication

like a concert with different scenes and costumes

you feel yourself evaporating knowing there is nothing more

no heaven for the empty. no hell for the sinner

and purgatory

is here on earth surely

I suppose that’s why I do what I can

now

sometimes that is not possible because

my heart is wrapped in butchers paper and thick with sorrow

a doom perhaps, just a shadow of future

when I am strong enough I stir and reach

when I am weak I stay so still air is louder than me

at times I do not exist though I live

I am just a poor transfer

a smudge of a fingerprint left on glass in an empty house

vanquished of plan

 

what will I do when they depart?

how will I cope being the last?

it was my intention to gather other lives around me

a blanket of DNA my home-grown spun family

nature didn’t permit such outcome, possibly

with our inheritance this was less cruel

than leaving children to grow into

miniature versions of disease’s burden

the curse and the lightning of uncertainty

mental illness heating mercury

like fevered flag

 

some would say, abuse ends

when there are no more left to collect

it is a relief to think of sleeping undisturbed

unaware of beginning and end

but at night I admit

sometimes that terrible fear curls around my neck

and I remember being a child

alone in the dark

knowing one day

it will be

permanent

as I am

the last

Legacy

landscape detailsmTurning

touches the stubbornness in some people

depression lifted

how long for?

time enough to notice once more the flush of warm blood and brief vigor as if disturbed from dying we galvanize under rushing water

how the chime of life can bewitch even the leaden hearted with its churlish promise

I would chase with first sound of bird call

dirty my feet in sprint of dawn to watch the thickets light up golden like fairy crowns

feel within a burning longing to forever breathe deeply like a thousand drums

to run then

nay, to hurtle

from weather-vein legacy