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
This chronic virus grasped me by the throat
Not lover, not rapture, the thunder of hooves seeking sinner
A Gorgon, Kraken, Swamp Thing of the blood rose
I cried; Is this retaliation for not caring enough? I do! I do!
But those who don’t act, are only words and armchairs, the hypocrisy of ourselves, fattening in our prayers
Epstein Barr knew this well, it is after all, an insidious invader enjoying its art
What did I do to deserve you as my bedfellow? I asked one night
Can’t you just leave me be? Return to the days before you feverishly claimed me your supplicate?
Swimming in my blood, high levels of scarlet poison, whispering; I could give you fibromyalgia, MS, cancer, chronic fatigue
But I chose to cause you to sicken every day, your stomach, your achilees heal, my throne
And as you write, think on me, for I infect you all, only some are immune
You, you are weak and afraid, with your desire to be a writer, which you’ll never truly be
Wanna know why?
You don’t have the personality or the guts
You don’t have the PEP
Imagination and pretty words aren’t enough
You need a marketing machine, a robust ego, stainless steel skin, no demons in your head
I don’t have any demons, I lied
Tucking the beasts behind my eyes
I may not get feverish over publicity tours or spend eight hours online, learning how to be adored
Because I’m trying, despite you, to live fully, without so much noise
I want to sit on my stoop and observe the flight of birds through water
That’s how I eventually write or embroider my tongue with song
By being quiet and inhaling the vibration of life
Like our favorites who didn’t always write daily
Sometimes, there’s more in less
In our world it’s too much 24/7
The population bomb broadcasting its static purr
I am a bad self publicist, I don’t submit enough or live for attentions
I’d rather drive listening to a favorite song and tune into my imagination
You can use too many words
You can say too much
I’m not trendy enough, too pale, too short, too sleepy
Or is that you Epstein Barr?
Infecting my remaining motivation?
Obliterating the words before they are written?
That thin wristed girl, who balanced in high heels, dancing in the dark
Her head full of sound
If you came and found me now
Stroking the night clear of wreathed clouds
I’d be sleeping beneath the magnolia
Learning the runes of its roots
Had a tremor
Just beneath the surface
Of the repression of horror
If she let it out
That creature would
Climb to the highest point
And start screaming, needful not of words.
She wrapped her arms around her chest
Feeling the absence of one breast
Her mom used to say
You forgot to grow into a woman, flat chested sparrow chick
Her boyfriend liked her angularity
It’s not very Latino, her sister decried
Shaking her own ample swelling bossom
She favored simple necklines and no bra, catching soft balls with callused hand
Then why she wondered
Did my breast betray me?
I never demanded anything of her
My children did not
Tug with hungry mouths on her unduly
Nor a lover, bite unkindly deep
She felt the tight, smooth scar
Like a flat knife lain on her chest, like unwanted medal
It seemed to hotly whisper
The curling, metal irony of us all
Without sufficient power to stave
Fate’s random cruelty
(For all women)
A girl who used to look forward to dinner and a movie
The simple pleasure of walking hand in hand with stillness and a harvest moon
was handed a poisoned fortune cookie
caught a virus, and that virus crawled into her stomach, like a ray gun
it changed the waves until, her stomach like arrythmia of the heart
was fitful and lurched
she was instantly sickened, from a person of health she turned
her body shut down and said
no, I don’t want to eat
dimly she remembered the days
she would lust and long for food
her appetite completely gone, the acidic growl of her stomach
held all dominion
she was slave to nausea 24/7
like a merciless dictator it left her no peace
even in the lingering hours of night
she woke bathed in sweat
her stomach somersaulting in wicked mirth
such a terrible feeling of imbalance and sickness
her hands gripped the sides of the toilet
she prayed until her head ached
for nothing could have prepared her
nothing assuaged the constant torture
every day of every day
she began to imagine
fondly like a fantasy
and then when she realized what she was doing
she would cry until the crying
made her sicker and she had to stop
bottle all the anquish up
but there was nowhere to throw it, or store it or let it free
it built higher like a fortress
locking her out of life
days, weeks, months went by
she was captured between glass
unable to eat or drink without throwing up
or wishing she never had to try to chew, force food in green bilious mouth
perhaps it was punishment for a former life
where she was greedy and ate too much
or tormented the Fates with the heal of her shoe
it seemed definitely karmic punishment
just as her will to live, ran thin and irregular
like arrythmia pulses below the surface
that would not quiet or return to normal
disturbing former calm we take for granted
a girl who used to look forward to dinner
sits at a quayside cafe, drinking empty glasses
eating plates without food
staring at turbulent water rise and fall
waves crashing without sequence, into wet wood
holding back or pushing forward, who knows?
one day either the sea will admit defeat, or erode everything
and that is how I will be free, she says
to carefree birds overhead, yet to be struck down
they know not their good fortune
For anyone told they have Gastroparesis, I feel it’s my duty to give my own experience so that should you have a similar experience you can avoid some of the time-wasting that I experienced and get help faster.
You may not have Gastroparesis.
Equally, if you are seriously sick and your symptoms are throwing up, intractable nausea and stomach pain, this may help you get a diagnosis.
In the days before the ‘gold-standard’ Gastroparesis test which is the Gastric-Emptying-Test (GET) doctors tended to rely upon an EGG of your stomach to measure your stomach waves/contractions. What an EGG does is tell the doctor how your stomach is performing not in terms of motility so much as spasms and waves.
Nowadays they talk more about motility and the bias is toward slow motility. This means when you go and get a Gastric-Emptying-Test (GET) they are biased toward thinking you have slowed down motility. Although women’s stomachs are much slower than men genetically, and although people are different in their emptying/rates of emptying, there is a bias toward thinking stomachs all empty the same way.
Because one size doesn’t fit all, it’s important to find out what your stomach is doing. It isn’t sufficient to be told ‘your stomach is emptying slowly’ as this is usually based upon a short test that doesn’t capture the duration of your stomach’s experience with food. The reason it’s important is because when you go into the ER with symptoms they will often only run a GET for ONE hour. They will tell you that if your stomach hasn’t emptied 50 percent it is emptying slowly. That isn’t true, a stomach can take up to 4 hours to empty and you also need to know if they are referring to the top portion of your stomach or are also taking into account your small intestine as that is part of the stomach in terms of function.
The best GET test is to ask for a full four-hour test, and for them to photograph your small intestine as well as your stomach. Only then can they definitively say that your stomach is slow emptying. If that is not done, question the diagnosis of delayed emptying. In this day and age of Diabetes, it is a common bias that people are more likely to have delayed emptying than fast emptying. (The reason the EGG is a less popular test is also because doctors cannot make as much money from that test as a GET).
Furthermore, it’s not as simple as ’emptying’ because the Cajal cells in your stomach are connected to your brain, they have 70 percent of the serotonin in your body. In a way, that ‘gut instinct’ is accurate, and as such, you ‘feel’ things via your stomach. If you are throwing up, feeling violently nauseous and dizzy and have severe IBS symptoms this can be from the mis-firing of your Cajal cells in your stomach, that are overreacting and telling your body not to digest or to over-fast digest your food. This often happens after exposure to a VIRUS.
Here’s the real problem. Typically the medications you will receive will be medications for moving your stomach (prokenetics) that have bad side-effects and will make you sicker if your stomach is moving too fast. If the biased assumption is your stomach is moving too slowly, (not emptying fast enough) then these prokenetics will speed your stomach up but if your stomach is moving too fast this will exacerbate your symptoms.
I saw three Gastroenterologists as well as some on call in the ER. The first Gastroenterologist ordered very expensive tests (Colonoscopy & Endoscopy) then accused me of being anorexic (I had lost over 20 pounds due to throwing up all the time 24/7) and said I had Candida. He prescribed heavy-duty antibiotics for a month, when I told him I would throw up the antibiotics he insulted me and said if men in Vietnam with their stomachs blown off, can swallow antibiotics I needed to.
I went to see a second Gastroenterologist having no faith in the first. She was better, she said about the Cajal cells and the mis-firing and believed it was caused by a virus. She gave me a 40% chance of getting better but said I needed to force myself to eat more and prescribed me prokenetics x 3 a day and anti-anxiety meds x 3 a day as treatment (you get very, very, very anxious when you feel this way because you are throwing up non-stop). I had taken prokenetics before in the ER and they did nothing or made me worse, I told her that but that was her treatment. I decided after reading about prokenetics and how they have irreversible side-effects that I would not be taking them x 3 a day as that was madness, likewise with the anti-anxiety medications as I knew how addictive they can be. At this time I had had a GET for one hour so did not have any proof of Gastroparesis or even slow-motility but this was assumed to be the case.
The third Gastroenterologist explained things differently.
He looked at my symptoms and said that I could not have Gastroparesis because you would not have daily diarrhea with Gastroparesis as literally your system shuts down. I didn’t have early satiety, (feeling full quickly) although I found it hard/impossible to eat because of the 24/7 nausea. I threw up but not all the time, and I didn’t feel worse after eating (but I didn’t necessarily feel better either). Based upon symptoms he ordered an EGG rather than subjecting me to more radiation and because he felt it gave a more accurate picture. The EGG was quick, safe and painless. The results showed I had fast gastric arrhythmia.
What gastric arrhythmia means is when the rhythm of your stomach which usually is in three waves, gets disrupted, and causes extreme symptoms like 24/7 horrific nausea and throwing up. If you have diarrhea that’s a really clear sign your system is ‘dumping’ IE going too fast, and you develop a host of issues including bacteria over-growth etc. This doctor said prokenetics would worsen gastric arrhythmia of any kind but especially if you are too fast. He prescribed a Tricyclic Antidepressant at a hugely lowered dose (typical dose 300mg, he gave me 10mg) as they work on smoothing the muscles in your stomach, which slow the spasms and in time, re-set your system.
It is worth noting, gastric arrhythmia is unique in that it tends to feel a lot like arrhythmia of the heart, as the stomach is not far from your heart. You cannot tell that you are not having heart arrhythmia, which is why I said I felt I was the first time I went to the ER. Typically you will have very bad anxiety which is caused by the feeling of constant arrhythmia coupled with nausea and all the other symptoms. This is not your mind it’s actually your stomach! Heart patients with severe arrhythmia often experience crippling anxiety due to how they feel physically, the same is true with gastric arrhythmia but it is less well known so often doctors will assume you are suffering from some type of anxiety disorder until the results come back.
My doctor told me 90 percent of his patients got over gastric arrhythmia. But the key is proper diagnosis. I read online about many people who had gone through months of suffering before being properly diagnosed. It doesn’t help that when you do searches, Gastroparesis comes up a lot and many times, with cases that are not true Gastroparesis. It is worthwhile noting that Gastroparesis really means a stomach that doesn’t move. If you are going to the toilet, if you are able to eat something every day, your stomach is moving.
People with true Gastroparesis get big balls of undigested food trapped and sometimes they throw them up or have to have surgery to remove them. People with true Gastroparesis can’t eat but a few bites of food without being full. Gastroparesis is considered incurable, which isn’t true as if it is caused by a virus it often will go with time, but you wouldn’t know that from searching even reputable places online (the Mayo Clinic and many others say it is incurable and you have to ‘manage symptoms’ and the only way you find things about it being curable is when you add ‘viral Gastroparesis’ then there are many articles about remission and cure).
If you have Gastroparesis you can be cured with time. But if you have some of these symptoms and not all of them it is quite possible you do not have Gastroparesis and your doctor(s) are being lazy by using Gastroparesis as an umbrella term. When you don’t know anything and you are sick and scared it is very easy to just follow what you are being told and get really bad and inaccurate care.
If I had known about gastric arrhythmia and/or the nuances behind gastric motility problems, and why they are caused, I would have had a lot more hope and targeted treatment from the start, I may even be better now. But instead I spent a ton of money and fretted and worried and was so sick for months, before I was even correctly diagnosed. Now I am taking the right meds and I am hoping that they will cure me but I also know I have spent many months in agony which could have been dealt with better.
To help others, I want to make this clear. There is bad information out there, much of it negative, when you are sick you can really lose your mind reading the conflicting and negative information out there, so I’m trying to put out some that will help anyone who is experiencing these things.
IF you get sick like I did and you experience extreme chronic debilitating nausea, if you are throwing up, if you have diarrhea or get really bad IBS symptoms out of the blue, first things first get checked for common viruses like Epstein Barr, Shingles and NORO. If you come back as having a virus OR you experienced viral symptoms prior to experiencing these symptoms, chances are a virus caused this. It basically kicks your body into overreacting and like an autoimmune disorder, you develop some type of motility issue in your stomach almost overnight.
This is very different from developing it because of an autonomic issue or post-surgery or if you have Diabetes. Even in those cases, sometimes it can be cured but there is more of a physical reason for why it happened and it is not usually as rapid onset. Knowing why it started is important.
Second, once you know this, if your symptoms are very severe it may be worthwhile having a Colonoscopy and Endoscopy because it can rule out other things with similar presentation. However, they are expensive so if you are not able to do this, or do not wish to, then ask for a four-hour gastric emptying test or an EGG to be performed. The latter may be harder to find as it is only found in selective Gastroenterology clinics whereas gastric emptying tests are done everywhere. Ideally if you can find someone who will do an EGG that’s going to give you more complete answers. You can google your city and gastric EGG.
Third, find a good Gastroenterologist. Google ‘good gastroenterologists’ or ‘stomach motility gastroenterologists’ in your city. How I found my good one was by finding that there was a Gastroenterology Research Center in my city and I asked to see the head of it. Even if they are not in your insurance you can request they be or you can pay out of network costs which are more but are usually partially covered by insurance. Call them and try to get an appointment ASAP if you say that you are throwing up and unable to keep food down they usually will take it seriously and see you quickly.
Fourth. When you go to see them take all your information with you and say that you suspect you may have a motility issue but you are not sure if it is too fast or too slow. If they ‘assume’ it’s slow, question that, and ensure your symptoms fit slow before accepting that diagnosis (if you have diarrhea it stands to reason your system isn’t slow!). Take someone with you who is a thinker, so that they can be your advocate. I have felt so sick I couldn’t think straight and having someone else there, helps when your brain turns to mush. Write everything down.
I pieced some of the puzzle together myself. I was proactive in finding a doctor I felt was decent. I tried even though I have been so sick at times I couldn’t even get up from all fours on the floor. Sometimes a doctor will have a piece of the puzzle like my second Gastroenterolgist, but they will still do something ass-backwards like prescribe prokenetic drugs (that cause your stomach to speed up) without thinking through whether this is logical and right.
The hardest part is many of the anti-nausea medications don’t actually help with the nausea, (I’ve yet to figure out why) but especially those with prokenetic properties if your stomach is too fast. In which your doctor should prescribe something that will slow it down but typical antispasmodics don’t treat the problem they just force your stomach to slow, so you want to ensure your doctor is considering a less invasive approach such as very, very low dose tricyclics. At that dose they have none of the harmful effects of tricyclic antidepressants and do not work as antidepressants but just help smooth the spasm and speed of your stomach. My doctor said it may take a while for them to work to reset your system, if I had known about them from the get-go I may be over this by now so as soon as you can, get on them.
I’ve been told I will heal. At times I find that impossible to believe this because I have been so sick for so long it seems like a cruel dream to imagine being well. But I hold onto hope because it’s what I have. And I feel lucky to have it. If someone had told me what I am writing here, I would have avoided a lot of pain and suffering. So I’m passing this on in the hope that even if one person is saved some of the suffering of bad diagnosis and bad medicine, it’s worth it.
If you have anyone you know going through something like this, show them this and if I can help them I will. It’s been the worst thing I have ever experienced and you do think you are losing your mind after months and months of it, but with the RIGHT treatment there is hope and we must hold onto that.
When you were ten, your body was a springboard
You bent in the wind, dashing forward.
When did you start to believe otherwise?
With the coming of stiff mornings and anxiety in your belly?
As life crept nearer to unknown trials?
When did you give up believing?
You could again, hold the Fates cupped in your hand
And blow to scatter, seed to four corners.
The white sheet, covers a multitude of unsaid
An imprint of the living, breathing, fear of mankind.
She appears to be a well behaved woman, with hair needing to be trimmed
But like a cake of many layers, the face fit for public consumption, is just wet paint.
If it was acceptable, she’d grab the quiet man, stooping to take her vitals
And craw in his ear, the gravy of her distress.
What would she say? That has not been said before? Who would care? In an ever-ready world powered by rhetoric?
When she was eighteen, she could command attention just by crossing her legs or flashing her eyes
But what a dismal game that felt, a fraud of poker and thighs.
They only paid her heed due to the bewitchment of youth and some promise it told their nether regions.
So often she’d mistaken lust and hunger for love and care
But they were no more than empty vessels, wishing to dock briefly in her harbor.
Her game, if it was one … of fishing for favor, a warm body, a pretend consolation
Left her desolate, like an addict without pipe
All her fancy, dried up and rotten in the artifice of it all.
And then she’d tripped over that invisible and superficial line
From youth, to something men did not wish to define and women morned.
She however, felt relief.
Not to be the party planner, proving her game was fitting in
It was gentler to command less and need no filling or straight flush
Though they say a woman’s worth, must be found in herself
For her sell-by-date leaves her invisible to the world.
And that was true. She did no longer
Turn heads or find men leant in, too close
Instead she was a ghost, haunting the specter of herself
Unsure why she claimed purchase on earth anymore.
It was as if the mic had been turned off
And everyone left the room
For the audition of younger models next door.
She was not a mother and could not connect
With married women who worried their husbands would stray, with downy cheeked baby sitter.
Nor was she eager to fill her face with plastic, just to feel a little of what she’d lost
(Why was it a loss?)
There seemed no path cut out for castaways of normal
No clear direction to take, on the other side of age.
Men … they remained mostly unchanged
Still harboring the illusions of youth, with rapidly balding heads and expanding guts
She felt so much … but who now wanted to hear her words?
Where was an audience for silver haired creatures of Artemis?
If she’d been an owl, she’d have screeched at night
And people would have woken and said; Goodness, that sounds like murder!
Such was her need to share
The preserve of her emotion.
So get up.
Though it has been long since you hopped on one foot
Or worn brightly colored hats, just because you could
And not, for the fondle of admirations dusty nod
But the sheer delight of being at last
A woman of substance.