Leaving WordPress – (but you are coming with me)

Please follow me at www.thefeatheredsleep.com I am still showing up in WP Reader and can read your work too. After numerous appeals to WordPress I did not get my ability to follow other WP authors reinstated. It was horribly unfair and ties my hands on WP, as part of my job is discovering and publishing talent. I’m disappointed, but I want to move on positively. In order to do this, I have decided to leave WordPress rather than condoning them.

One of my best friends built me a site. I have WordPress Reader and all those whom I follow (before I was banned from following any more) and all those who follow me (and you can continue to) will be exported with me so I can continue to read you. www.thefeatheredsleep.com

If you are not following me, you still can. When you go to my new page it gives you a way to follow me by email (Subscribe to Blog via Email on the right-hand-side of the page). If you subscribe, I will show up in your WP-Reader. www.thefeatheredsleep.com

My best friends online (although I’ve met many in real life by now) were found on WordPress. The caliber of people on WP is outstanding. I literally have met people I adore. If not for Mark, Philip, Tremaine and Susi, I might never have survived the worst of my illness and those people and others, are life-long friends.

Recently, we had a big loss in the WP community when Sue Vincent died, she was widely respected and I respected her deeply as a colleague. Her bright spirit infused everyone. Her life has touched myself and others deeply in many ways. It was actually the non creative writing that touched me the most. The her in herself. The woman she was. The process of her life.

A few years ago, we lost Paul, and many of us still remember him and think of his face. I have a photo of him that comes up in my memories often, and I never deleted his last message to me. He was one of my first friends on WP aside Eric, Rita, Tony, Pelgris, and Monique and we all knew him and cared about him. His death was tragic and senseless. Monique and I talk of him every time we talk. He walks with us.

When Natalie Scarberry passed, it was gut-wrenching. She had fought so many battles in life, and was such a rare human being because despite being in her 70’s she still had TIME for people, she still could talk about ‘a bad day‘ or empathize with others, and often life beats that out of you, but it didn’t with her. Despite having difficulties with her own mom, she was a surrogate mom to many of us. I keep her photo in my room and I think of her a lot. She will always be with me. Not in the pithy sense, but the truest sense.

Even when sick, Natalie was encouraging and loving. She wrote this on one of my posts;

“You know how a pin ball machine hits all those things that make noise; when you write like this one that is so honest and raw it feels like a pin ball is hitting everything that has ever hurt me or touched me deeply and I have to wonder how that can be. And I feel sure others who read your words are impacted in the same way. You have an incredible way of understanding all the sham of life and the betrayals, we as flawed and broken humans, are subject to. Reading this was heartbreaking and at the same time spelling binding in its profound insights of existence in a fallen and flawed world.“

We should never forget the value of true support and selflessness.

With each person lost, I have felt such emotions that have taught me more value and a greater understanding of the most enduring things in life. I have literally grown in my heart and soul because of knowing these people and being briefly connected to them. I shall never, ever forget them.

I am so proud of every single one of you who has been in an Indie Blu(e) anthology and as our company gets larger and more successful, we hope to have more breadth to share the works of such talented writers and artists – whom we have mostly met via WP. What a sad story then that WP would ban me from following new talent, because of an algorithm? That said, I am determined to continue to support those talents in whatever way I can and balance my day job alongside my Indie Blu(e) work, because it has literally been one of the most meaningful things I have done in years.

Thank you all. I hope you come with me when I go. Because I have learned, in going, you never really leave.

RIP Natalie, Paul, Sue & all our WP friends who have passed, but stay firmly in our hearts. We see you. We love you.

Please consider following me if you don’t already, at www.thefeatheredsleep.com

Also thanks to: Tara, Christine, Derrick & Jaqui Knight,, Jane, Erik, Mark & Chris Renney, Merril, Cordelia, Holly, Monique, Dorlinda, Bob, Aakriti, Sarah Doughty, Devika, Little Charmer, TGFJ, Philip, Helene, Mr Militant Negro, SonofaBeach, Basil, Raili, Crow, Megha, Laurie, Sunshine Jensen, AND SunJesper, Kindra, LIB, Nicolas, SuddenDenouement, Nicole Lyons, Dev, HastyWords, Black Duck, Cyranny Skye/, HMS, Henna, Braeden, Carol, JaneB, RobT, Anya,
Contoveros, Charlie, Nathalie, Sabrina, Em, Richard, Jaya, SNTC, Bjorn, Sue, John, Audrey, Rpoetry, Wallace, NFW, Chris, Peter, Teti, Mani, Amitav, My Jewish Sister, Lunar, slpmartin, OP, SHL, Lamar, SFD, ELR, Tanya, Forrest, Sol, Sheldon, JAGL, Keith, KMF, NFW, MSP, TCFC, GhostWriter, Janet Wright, Vidur, Joseph, Jacqui, Ashley, TRP, Andrew, TBP, Ken, Dawn, YOU, Betty Albright, Ivor, Ogden, TBFO, Penny, EOB2, Smita, Willow, Petru, Earthwalking, David, HLR, Perditus, EFTDN, Poet Pas, Jude, H&R, Carol, Eric, Jonathan, Krissy, EDCW, Ali, robertgoldstein, Merbear, Jasper, Annette, Meg, SliceTheLife, CODS, GC, Vic CigarMan, Bethany, Maureen, Emma, Ameena, BCB, Maria, S&B, Morgan, Kim, Eugenia, Day, ChrisR, Usha, Melissa, mylifeandme, anitabacha.com, Samyra, saynotoclowns, Spiritkeeper, Jade, TTT, PFTP, TH, EOL, SageFemme, Amir, and everyone else.

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WHAT WE VALUE

Our society worships entirely the wrong animal, venerating them and reducing others to ash.

The news recently devoted a good portion of the sports coverage to how much money certain sports figures were going to be paid for kicking a ball across a field. And this in a time when our jobs are dissolving, our society is being wrecked, our economy may be irrecoverable and certain industries will cease to exist en mass. Put simply, there will not be jobs to come back to folks but apparently we still need to pay these guys billions for their service to humanity?

I cannot understand how ANY society and how any of us can tolerate/accept a sports figure being paid anywhere NEAR that sum for what they do when those who really do jobs worth paying, are dying in droves because they are not receiving enough personal protective gear to protect themselves.

When did we start paying someone to kick a ball millions and a nurse who saves our life, hundreds?

What’s wrong with us?

If I were an alien observing our planet, I would seriously wonder if we all were crazy in our assessment of VALUE. What we value. What we do not. If nothing else, Covid-19 has given us a chance to see this once and for all and try to do something about it.

We have marched for Black Lives Matter during this time because it was over-due and our raw emotions on the subject burst out of their polite shell and filled the streets with ire and a desire for equality but how many of us really want equality? Not all of us that is for sure, look around and you can see it in every facet of life, a desire to be above someone else somehow.

We still routinely under-react and permit by our inaction, serious hideous crimes like rape to go unpunished in this country and others.

It’s the year 2020 and we still think inequality for women is acceptable in some forms and fashion. Let us not forget what Maya Angelou said about wanting to vote for a white woman over a black man. She said – women were the original oppressed group, thus we should work backward until all oppressed parties are equal. I agree with her.

We still think hate crimes against Jews and telling Jews that Israel should not be their country is somehow acceptable, despite those Jews having descended from that country. Would we say the same to Black People about Africa. Of course not! So why do we say it to Israel? Because of the Palestine Question which Europe in particular has decided to side with, uncaring of the history of persecution toward Jews and their right to have some land of their own. Of course we shouldn’t persecute Palestinians either and of course, Israel has made mistakes but it’s now about what optics politicians choose and what side of the story is half-revealed via inaccurate news reporting. It’s essentially about which side looks right to support? Because Trump supports Israel, most left-wing supporters are against it. Yet it is not that simple and never should be. Lest we forget our history.

We still think homosexuality is unnatural and abhorant and that being queer isn’t natural. We don’t say it out loud because it’s not popular to say it, but we think it and we act it and gays know. They know.

We talk about slavery and how horrific it was, but half the time we just pay lip service to the deeper issues, because we don’t know our history so we don’t mention Native Americans and how they were exterminated en mass and continue to be disenfranchised. We’re so proud of ourselves for changing the Red Skins but we think that’s enough. Or how slavery has never really gone away, it’s just changed hands and outfits, but it’s still well and thriving in many forms.

So it’s never enough. Until everyone is equal and inequality and racism are a thing of the past. But will they ever be? With people who seem to thrive on discrimination and putting themselves ahead of others and putting others down? If people think wearing a mask is too much, is it any wonder they really don’t give a shit if you are sick or you are vulnerable? Don’t they just want you to die and bugger off?

Likewise with illness, with chronically sick people, it’s never enough to just have laws that allow them to not be discriminated against because discrimination comes in a myriad of differing forms. Subtle. Unreachable. Devastating. People of color have to put up with this EVERY SINGLE DAY as do women, as do gays, as do sick people. Just one roll of the eye says everything. Says; ‘we think you are pathetic‘ invalidates an entire moment.

Chronic illness is a little like amputation. Obviously anyone who has suffered an amputation will refute this and rightly so. But metaphorically it remains akin to the loss of a limb. You are left flailing, unsure of how to right yourself, and continue as once you were. A part of you is lost.

They talk of periods of adjustment. The stages of grieving: Anger for what you have lost. Shame imposed by a society who now judges you weak. Acceptance of a ‘new normal’ that includes intolerable things such as chronic pain etc. For many, those stages of grieving never really end, they cycle and you go through different dilutions depending upon how you progress.

But progress is perhaps not the right word. In our linear society where so much is expected. For someone to drop off and no longer thrive, in nature they would be left behind to perish. In our society they are carried along but reminded frequently, of their burden, of their ineptitude.

For many who suffer mental illness, physical illness, both, there is a lot of shame attached to their existing after this fact. Even as people do not come out and say it directly (and believe me, many do!) there is a thin veil that is easily penetrable. People know when they are treated differently, seen differently, worse, judged without jury.

Being ‘sick’ in any manifestation is seen as a ‘weakness’ by our society. This invariably goes back to the ‘dog-eat-dog’ notion of surviving. The weakest link perishes or is a burden to the whole. But these days, with our so-called faith and mercy in place, one might imagine a little more compassion? And if you did, you would be sorely disappointed.

Since getting sick in 2017 I have felt intermittently well enough to continue working and ‘accomplishing’. But as with any pendulum, when it swings deeply toward illness, I am right back at the horror point of when it all began, down on my knees, imploring the universe for healing. And for the most part I have done this alone, because as all those who have been sick for a time will attest, most people do not stay by your side. Even those you expect to.

You can’t plan any longer. A trip is a fear because what if you get sick? Then someone suggests; maybe it’s in your head, maybe you are making yourself sick? And no matter how many times you prove otherwise, they think maybe it’s a choice, just like being gay is a choice, right?

Wrong. You can’t rely upon yourself like you used to because you never know how it’s going to be, how you are going to be. And usually you could be relied upon 100 percent and now that’s gone and somehow you still have to plan a future, but how do you plan a future if you can’t rely upon yourself?

I try to take something from every experience I have, including negative ones. Without learning we don’t grow we just regurgitate and I would rather grow even if I’m throwing up and in pain as I do it. I have taken from this experience what is obvious, but I have also tried to take from others experiences, and have noticed disturbing patterns among those I know who have also been sick for a while or a very long while.

People leave.

People don’t care.

Poverty goes hand in hand with illness.

Anxiety and fear are natural outcomes for a plethora of reasons.

Loneliness can kill.

What I have come to see is this. Sick people are TRUE WARRIORS.

They fight the unimaginable that most of us never have to endure. They have to get pacemakers in their 40s, they have to struggle through taking 2 hours to get dressed and STILL MANAGE TO SHOW UP and this strength – this strength is what I have learned the most from my experiences and listening to others. Strength comes in many forms. We dismiss most of those forms but they are real.

I watch people who have seizures and brain tumors, fight and fight and fight and I realize, we’ve got it backwards. We should be applauding these people not marginalizing them. But we do everything backwards, because as a whole we are poisoned by false ideas of what is valuable and what is not. We toss aside those we deem un-valuable when they are perhaps some of the most valuable people in the world.

So if you are disabled in any way, be it in your head, or your body, remember that. You are some of the most valuable people in the world. Let nobody ever let you forget that. You are some of the most valuable people in the world.

This is written for my sister Angie. You inspire me every single day. You are that light in the dark that refuses to give up and because of you, I refuse to give up too.

I wish I had been with you whilst you wandered around town alone in the rain today

I wish like

when we were girls

joined at the hip

possessing no cushion

to walk in your stead

same shoes, same size, different spread

yours narrow and delicate

mine bashed and mangled from running

we were used to walking alone in the rain

until we showed up for each other

I recall

how your neck always seemed long even as

neither of us are tall

perhaps the slope of your shoulders or the arch of your clavical

there are illusions and striations even in similars

this we discovered

you could roll a better joint in the dark

and I could stand on my hands and walk – unguided

the carnival rat and the singing mermaid

we grew up on French movies, smoking in the back seats

oblivious to the risk

of feeling everything

and now you are in another country, as am I

two foreign girls without roots trying to get by

I think of you as I think of my reflection and

if I had a sister, if I had a wife, if I had a child

all those emotions and more, embroiled in your fur

like the fox in the dawn

barking sharp and clear

I see you – a red flash – a dart of color against fog

thinking of all the songs we heard and made our own

you possess the key to my memories and my home

as if you were a bee, building a wax nest in a clarinet

you are 17 and your legs remind me of a colt

lean and muscled with no fat, you stand sharp against the ocean

spinning stories of Irish and Welsh, dreams in technicolor

something about your eyes

something in the way you fight without fighting

a strength beneath the quiet

like waves over waves over mouths

I cycled to your flat and we read feminist literature by candle light

those were the times when everything began

and now again we stop and start

clocks without hands without purpose

sometimes it feels like

there’s only the part where we wind and wind up

to no future

and then it begins over

the dance and the memories

unwinding like skirts of sand and ocean

I think of all the places you have seen without me

and how building a life apart we drift like sea weed

I don’t want to lose the link

the key, the way you fit in my heart like

a shell and I can

always hear the sound of waves

in your skirts as you bow your head

and we trip over ourselves to find

that moment of joy

among all the hurt

that’s how you know when you have

an imprint of someone else in your soul

carried on my back, in my chest

like a favorite toy or something deeper

a chant, a eulogy, a suspension of reality

that fusing of one with another over space and creation

when did it begin and when did it become

the stallegmite within me

with your hands encircled

I hear your voice as my own

sister, lover, mother, daughter, woman

the girl with sea in her eyes

I yearn for you

crossing places alone

walking streets without

my heart hurts to think

of us apart, separate, living despite

some of us should be together

I hear you say

yes

like she would say

like the song of songs

and you know, yes,

you have always

known

The wounded eyed girl

Before I knew myself, uttered out loud the words

labeling me a this or a that or a who knows?

I developed feelings for a wounded eye girl

we were kids really, dressing up as Japanese geisha in my room

all festooned in asian print and a little tea set I got for cheap

from china town

we wore chopsticks in our hair and bowed ceremoniously

singing the only song we knew in Japanese

with The Mikado playing in the background

I liked her thin arms and her prominent nose

her knock knee urchin look and bandaged soul

I liked how strong she was even as she looked like she’d fly away

most of all I was attracted to her wounded eyes

for there is something heady and bewitching in

pain

and its infinite manifestations

we’d dress up, I would paint her lips scarlet, we’d put on

funny accents and roll on the floor looking up at glow stars

I still had stuck there with movie posters of vampires

she would fling her arm out across my chest,  tell me of herself

pouring out the suffering of her short life

and it was an awful life before she was

brought to this city we lived in, both from somewhere else

transplants, orphans, ghosts of ourselves with missing DNA

she would tell me of her homeland, how

her father beat her black and blue for

being a girl

why as she got older he took

each of her sisters one by one

and they didn’t come back

whole or even

well repaired

I wanted to lick the pain from her cheeks and hold her to me

until the wound healed

but nothing I could ever do would assuage

the wounds behind her dark brown eyes

so we played as little girls do

building camps and tepees and western saloons

once I played a prostitute and she a cowboy

I cocked my head, snapped a red garter and asked her;

want to have some fun soldier?

she laughed, such a lovely laugh

her black hair and coffee skin, shining with fantasy

she didn’t like being herself anymore than me

we got into our pretend saloon bed

I served her a pretend shot of whiskey

acted ‘saucy’ the way I had learned from TV

she rolled her eyes laboriously like a comedian winking

pulled up my petticoats which were real

and at one point had been my mother’s wedding dress

when she married my father, bare foot and broke

with a velvet ribbon tied around her neck

and our fingers explored each other

as we giggled and changed our voices to all the favorite

TV characters we knew

I think I even tried to be Sue Ellen

I wanted to tell her then, not to stop

to press my mouth to her pomegranate lips

touch her swelling breasts with my own lack of

run myself like a cat across her saffron skin

but even then I knew

damage makes bad bed fellows

we soon changed the game, to cops and robbers

climbing out of the window, swinging from trees

though in every story

there was an element of romance

I thought of the old shows I loved

where the actors were always

dancing around the circumference

of each others heart

how in real life sometimes they married

I told my father; Oh see! Oh see! pretend things can come real!

but some cannot

and she and I grew up

once she told me she had always known I felt like that

I blushed dark red because of course

thinking I’d been subtle when watching her changing clothes

she married a blonde haired man and moved to Australia

had a little boy and hopefully

a ceasing of her alotment of pain

because more than anything I wanted that for her

even more than the beautiful moment

of two girls

laying in sunlight

laughing at imagined things

for the rest and peace and escape

of anything real

 

This is a real world as it is an unreal world

I was going through the list of who I am following on WordPress with a view of clearing out people who had stopped writing on their blog. It’s sad. All the good intentions we have, all the excellent names for blogs, the ideas, the effort, where do they go?

Interestingly; I noticed that many of the people who had depression and/or feminism in their title line were no longer writing. I wondered, is that a coincidence or do things that matter but are not popular (depression/feminism) die out?

Whilst I admire those who continue a blog for years, writing faithfully every day/week/month I would also say that many of the BEST writers are those who start blogs and never continue them. I wonder where they are now? I wonder if they are okay? It seems sad to see their potential and ideas lost.

When I was sick I didn’t write for a few months here-and-there but people knew I was still around. I wonder how long it takes to not be around and not be noticed if you are not around, I wonder how long it takes to vanish or feel you have vanished?

Upon joining WP I met with a small group of writers/poets/thinkers and they were my ‘first’ friends here. What is interesting is of those, some are still my dearest friends and some completely vanished and this after professing love and life-long friendship. Of those who vanished, either into their own egos or others, they were the loudest at proclaiming such undying friendship. Had I known then, they were just saying it, I wouldn’t have invested as much time in cultivating those friendships but not everyone is like that, usually only those who speak the loudest (and I wonder why that is?).

At times I am tempted to ask some of those who never keep in touch, what happened? Where’s the love? ha ha ha! Because they were SO VERY effusive and then like a raisin in the sun they dried up and went onto greener pastures … I guess that’s the whim of the budding author for you! Yeah I met a few of those too. I learned from that fickelty though. No matter what happens, I’ll never feel too self-important for those who were there for me.

Going through the list is like looking back on the years I have written on WP and all the people I have met. I feel so lucky to have met those people, so many of them I really count as TRUE friends and I care deeply for them. Others I may not be literal friends with but I admire what they do and who they are, very, very much. We are basically, a wonderful community and I feel richer for being here.

Let’s spare a moment for those who are not here. In our WP world we have lost people. Those who have died. Those who have become too sick to write. Those who are too depressed to write. Those who are not here and though we do not know why, they are gone. Let’s think about those people we met when we first began here, the faces and voices of those who are not here now for a myriad of reasons. I for one, do not forget them. It’s a bit like first-love, you don’t easily forget your first.

Thank you to Rita, Eric, Tony, Monique, Derick and Sabrina, some of the very ‘first tribe’ who welcomed me and whom I had here on WP, for still being around and still sending your sunshine my way regularly.

Oh, and if this teaches me anything, it is to appreciate someone whilst they are here and to try to always keep writing through life’s ups and downs and appreciate the value of people coming into your life and holding you to the light.

For Paul and Cynthia. We remember you.

 

Ring

Your friendship is

A ring on both our fingers

We can bury it for years

It won’t tarnish

You crossed over to my world

And climbing through my window

You left muddy footprints spoiling the plain carpet forever

When I go to look for you

I hear your rustling words like music

Taste feelings like rain on my tongue

You made a fetish of me and wear it around your neck

I keep your calipso dance beneath my iron bed

For when I am alone

You are there

Velvet pocketed and never faltering

My love is

A brand I welcome

As we cannot exchange skins

We can remove our fear

Let it hang neglected on a clothes peg

Whilst we kick off our shoes

Feel the vibration of knowing

In each other is the river

Reflecting on shining surface

Deeply felt things, resting below.

Reach in

Patricia, before fame

Played for keeps.

Competition was her muse

She wrote her first book

Won the acalades she sought

Changed her face in surgeons chair

And still

In the pages of her, I read quiet despair

A pervasive loneliness in loose leafed characters

They screamed on her behalf, when she could only

Type help.

And
You, today, walking, lost

With large red dog 

And small foot tattoo

You had the same shape

An edge to your corners, as sharp as spite

A quietude and a silence, sadness set firm in your eyes.

I wanted to ask

Why?

Or reveal what I already knew 

In just having met, the corners and the distance

No match for feeling, across tow path

And into that personal space, where you laid your sorrow out

I smiled a great smile

Thinking …

Can a smile impart a hundred thoughts?

You passed, and the wetness of your loss

Felt like brief rain on my arm

Two strangers and a dog

It was as if it hadn’t happened

Yet

You reminded me so much of Patricia

And her emptiness, written throughout each story

You see … we recognize each other

As much as for who we are not, as our similarities

Strange bedfellows of perverse and solitary, mearly trying to tred water.

If I’d spoken more, I would have asked;

Do you walk through the high grass to see the butterflies?

Do you feel the sun before it gets too hot?

Will we walk in the same direction and in time perhaps …

Talk of how we came to choose, empty steps, over laughter

You never know

They could be everything, or perpetual stranger

A moment, and no more

Or the rest of your life.

Instead of pulling away, if you reached into them

Like leaves blown, will fall, one on top, one below

A path of many 

Creating singular

Direction.

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.

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

Purple

Where did you learn

Your need to pull 

Away?

Burying truth behind

A visage of clay

And where did you start

Believing distance was safe?

Or ice over warm, each time you’d take?

I wished I met you

Before

You learned in reverse

Drove with eyes closed

Radio tuned to conflict and silence

If I had the power

I’d rewind you

Like a China doll

Breakable and yet

How hard your ceramic stare

You penetrate any pretense

Even as you hold your own secrets

Tighter than a rubber band

Turning pinky swear

Purple