Who knew how to die?
That it wouldn’t be instantaneous
As children imagine
A sudden pain, then unconsciousness
Death could go on years
Building and slowing like cold sea water
Burning firework left to fizzle alone in inky sky
That it would wind and unwind, a mad clock void of correct motion
It could take the very young, wrap them in wool, to cast down wet hill
The jarring and bumping eventual colission held at bay
That it could take you
Suspend you from me and all familiar things
Where the recognition in your once clear and beautiful eyes
Became muddied and clouded with quiet violence
Your touch so soft, stolen and replaced with flinty brush off
The courage of fighters
Seathing against their sentence and eventual
Chop chop of parts, scars and marred
Skin once free of blade
A scratch board of operation knives
She reached me
As I sat in my safe world
Pulled me through
I smelt anticeptic
Read her clever whirring mind
Far too smart for this dull world
How can such people die?
She laughs and says
At least I’ll go young and whilst I have my looks
So long as you don’t show the undertaker my scars
They remind me of barbed wire and grey hair and the lines you cut in snow
When skiing downhill
Her lips are red, she says
I used to ride horses and can speak five languages
I wish you would stay
I could read you eternally
It’s the macabre and giggling nervousness you feel
It brings out the worst or the best of us
I wanted to bolt
Race down the road
But I remain and listen
To the gurgle of her catheter
And saw the bruised clouds grow
As rain came like tears behind pitched fingers
Her humor never left
She knew more than all of us
What a terrible, terrible waste
She said; I can make an authentic French 75
I wanted to swap places, I am not so rarefied
But I am a coward
Before the machinations of surgeons
What devour they do, to our poor skin
Does it really prevent anything?
She asked, laughing at the cat
Who is also old and infirm before his time
Still batting the window when birds come to peck
At crumbs of comfort because it’s those little things
She says, keep you going
Like my favorite soup, a funny film, the sun coming over horizon
Reminding me I can still
I learn to appreciate life
From her dying
The morsel of me
Though of language I only know two and
Cannot spell in either
Life is savage in her cull
The bright and wonderful snatched
Who among us had an idea of
How to die?
Then she laughs
Her teeth still white, her skin waxy and hot
And says, oh dear you!
Who among us
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.
Just when you constructed your best notion of life yet
little occurences surprise, like rain on your neck
she is a woman of verdant verbena vitality
she lives in the tropics with the song of Finland
angels arrive, winging oceans
her voice wrapped in this time and others
lends a balm, sincere and lasting
like a fairy touching glass
turns dream to day
(For Raili. 💓 ILU.)
They ran through markets
elms strung with sari’s
bedecked with jewels and
girls kenning their heads
babes at their breast
growing crowns of red and indigo
she pressed into my palm
the spell of her rune
smelling of Finnish water stone
rubbed over and over beneath time
leaves still containing their flung pigment
where slippered feet ran and picked them
casting their glass throng to glory
she has the shiny hair of a child and
cheeks full for her pressed size
she who is gone and now returned
talking in other languages with Irish accent
she who manifests and disappears and is reborn
doesn’t look large enough to give birth
or sing at the top of a road the song of her
separated by water and fear and longing
broken in sea, put back together by current
I was always swimming in her direction and the
light tread of her spring
she is a carnival of paper-cut outs
wearing scarlet hose and rings on her toes
yet upward / yet down in earth where
roots inform her choices as well as ancestor
she is of me and I
am stranger and intimate
familiarity is a rubbed sleeve on silver
her thin knees beneath duvet
twitching dreams caught in muslin
tents in high wind holding their claim
sheared gravity, she is lifted from her sail
and through the tarot of her eyes
I see each snapshot and Rorschach blot
when they told us friendship will expire
they did not know
the language of ink and how
it leaves itself
swirling for paper
on which to draw
Has eight letters, two vowels, six consonants
Can be chopped to negative connotation, or extended to romantic suggestion
Strange people can find each other and feel …
Strangeness can become, familiar
Like the day before a storm brings the brightest day
There are angels walking among us
They may have sagging skin and loose jowels
Dirty fingernails and missing teeth
But their smile is a beacon, guiding lost ships to harbor
Only today I met one as I held the post office door open
She said “this will be your year” and her warmth was a well tended fire in my heart
We marry strangers who have become loved ones
Strange is stronger than blood
You have never been a stranger to me, the day I met you I forsaw
Us walking beneath wet trees, the deer, sillouetted between bare branches
Our wet gloves smashed together
Than the fierce grip of Winter
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.