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.

 

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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

Radiance

Do not become bitter

When friend you thought is none

When calamity strikes her skin drum

And those you relied upon do not come

The world

Is a magical place of nonsense

What you know is often undone

By the whim of mercury and emotion

Little stays as you may have assumed

But in the hour of your isolation

Witness miracles

From the trees they unfurl

Familiar in compassion

A true heart rarely demonstrative

A kindness never published

Those with mercy on their tongue

Seek no recompense

Silently they stand at your side

Holding you when others did not show

Too busy in flamboyance

For the meak shall inherit trust

It is they who need make no false promise

Sincerity is not shouted from rooftop

Actions are louder than fancy words

Seek not the grandiose, who say they love

Take instead the slowness of certainty

You know when you fall 

By the tenderness of unexpected visitor

By gentle compassion and

The companion who you never knew you could

Rely upon 

Such is the mystery of things born in hard times

And the redemption of hope

Blooming

Blocking out disappointment with her

Soft and steady radiance

This poem is for those who selflessly were there in a supportive letter or word during the hardest part of my life. Please know it was you who got me through and my gratitude cannot be expressed enough but to say your kindness was everything to me. Thank you so very much. I have learned that true goodness comes often from the least expected corners just as those who pretend to care are often just hot air.