Mercy

Answer me

Please

Climb out of impossible and

Dipping quill, write backwards in time

Angling mirrors to lipread

Da Vinci’s reflected scrawl

tell us the unravel to the mystery

Where in this hour should we go?

When they let you down slow

Removing fantasy, layer by layer

Are you there?

On the emptied pier, bare of hope

Dour endings posted like nails in my palm

Is that you? Cresting wave in falling darkness

Light, just a slip of a girl spilling over her dress

It is cream and carries each stain like a mast

Are you there?

Crunching underfoot, doubt that goodness is lost

For you, with your thin shadow, still manage to

Fill me with light

A radiant being, rarefied

How often to find, one whose mission isn’t self

But the betterment of others

You, who don’t even know your worth

If you did, you would hiccup and grow embarrassed

It is not your need to be praised, you are a child of mercy

Your pleasure is in lending kindness, to mend the scold

For this world can be so lonely, and you

Are a house to come in from, settling cold.

 

Advertisements

Safe ascent

q64w643

This unspoiled place

holds a silence and a sound both

in the careen of wild bird, dove-tailing against light

swish tailed-fox, caught in glimpsing treeline, scar of russet

your wool pulled and caught like thoughts on wire

I felt you inside, like mercury, descending to places I’d locked

tight against battering fists and claim

how did you learn the maze and possess

parts of me I had yet to give permission?

though all of us are like the wool, caught and fluttering

against a world of happen-chance and calamity

it is only perhaps, in those untethered moments

love, unexplained by all things

captures in unguarded step

drowning tightly held belief

we are our own master

and in this yield

in your arms and the void calling overhead

a vast sky holds swell of rain

just long enough

for our safe ascent

Who shall love?

If you are not a beautiful creature

Is there love for you?

When the world appears bewitched by youth and eternal moment’s boiled to infuse

Who shall love?

Who shall love?

The imperfect and technically “past it”

When beautiful felt like;

The sound of heals clicking on marble

Then slippers

Then bare feet

Then silence

No attention for a certain shape, age, gaze

Consolation crows, grow your mind

Crack jokes

Have a sense of humor

Laugh at yourself.

Long before, boys fell in love with me first;

Because of an hourglass

A firmness

A tightness

A willingness

The measure of hips

And then later, aserbic wit

I say ignore the rules

Climb trees at sixty, chomping on cigar

Wear polkadots, rolling dice on roof tops

Make love in bramble hedges and countertops

We talk of politics and deep sea diving, the need for conscience, passion and chocolate biscuits

You didn’t need a perfect pair of legs or a tiny waist

Eventually you wanted a woman of four seasons

Who couldn’t hold her alcohol anymore and streaked across the lawn

A girl of seventy and four, mayflies buzzing in our ears

Who still beat you at arm wrestling and sang like an angel with grey hair

Opening her robe to your eager devour

For once upon, you were a youthful coward, chasing empty smiles

And now you lay in a woman’s arms marveling at her lines

The black and blue, and those she fought hard for, birthing children

Crossing her face like stars

More beautiful for their dance

On skin long past its prime and so fine

For a constellation is music over time

Then and only then, love breathes eternal

I said no and you said yes

I said no and you said yes

The first time was before I can remember

adults do not have dominion over children’s souls

but that’s what happens when you touch a child and cause her to be unwhole

the second time was in nursery school so I suppose your foray of my body had begun

as I emulated what was done

in the back of a toy caravan with my pretend boyfriend and he liked it a lot

made me feel dirty though, I did not know what that meant at the time

seeded a doubt in the core of my person, like a rod of copper slowly turning green

the third time I lay face down on a dirty carpet and three boys played marbles across my back

they got the idea from a porno mag their father hadn’t hidden very well

and their kid sister watched from the doorway, and I told her with my eyes, go to your room or you will be next

I said no and you said yes

it became as normal as something bad can be, I wanted to see her, so I had to cross the gauntlet and you were the gatekeeper

nobody believes you when it is easier to disbelieve and go on thinking respectable people don’t lie

you taught me to hate games shows as they were our background noise

and grandma would come in laughing and I’d see the guilt in her eyes

sacrifice the daughter, sacrifice the child, sweep the dirt underneath the bruises of generations

at nine I fell in love for the first time with a boy who wiggled above me but he of all, respected my desire to be unmolested and we hung upside down from the monkey puzzle tree holding hands

I said no and you said yes

James Brown was your name like the singer, and you didn’t take no for an answer

you climbed my bunk bed and pulled down your pants and if the door bell hadn’t rung you would have got your way

I wonder who came after me and if they were saved by the bell?

I said no and you said yes

yes yes yes you know you want this

no no no I really don’t

but you asked for it, you tempted me, you flirted, you caused me to have a hard-on, this is YOUR FAULT

I kissed a boy in the garages outside school and it felt dirty and wrong because it reminded me of what others had done

before I made decisions of my own

I said no and you said yes

I felt guilty about touching myself because of the Jahovah witnesses and the Mormons and the teacher who stapled my confession together and said we won’t talk of it

when I tried to tell her, this is what happened to me

and you didn’t feel guilty about playing yatzee and karatee on your father’s bed with the nylon sheets and the little bobbles they made when you made a tent and put your fingers in

and you didn’t feel badly when you lied and said you would only touch and instead you went too far and before I knew you were pinning me against a table

I said no and you said yes

children who are violated don’t always know what’s best for them

they are broken and they are scattered and they are stomped on and they hate how they look when the light is on

but they want to fit in and they want to be normal and sometimes in trying they get it all wrong

the neighbor told my parents; your little girl is using bad words and teaching my boys how to curse

and I said fucking hell what does it matter?

but it did, it mattered a lot, to stay in the confine of childhood and not grow up

because growing up meant it was real and you had to deal with it and whilst you were a child

nobody believed it could happen anyway so you could pretend it did not

I said no and you said yes

yes yes yes I know you want to

no no no I really don’t

and my second boyfriend said he wouldn’t go too far

but he did and he did and he did

and I ran through the streets holding myself up and I shouted to the trees that had fallen because of the high wind

why do people pretend? because I didn’t understand and it was a language impenetrable

but I was not … impenetrable

I was just a place of conquer

I wanted to find a lock and keep myself closed

but they kept battering down the door one after the other

because patterns are sometimes all we have to show

for the cycle of abuse

I said no and you said yes

the last time was in a public street

dragged off and soon the roads diminished and the woods were thick

he moved like a silver fish cutting his way into my secrets

I lay staring at the knife

he told me, I won’t cut you if you are nice

I was very, very nice

no no no

yes yes yes

the policeman said; I have to ask, it’s my job, did you want to have sex with this homeless man?

and I pulled up my torn skirt and my ripped hose and my shredded blouse and my dismembered bra and my bloody underwear and I said

if you can even ask that question

you will not recognize justice if it comes

no no no

I said no and you said yes

the last time and the first time and all the rest

when children become girls, become women, become less

than the worth that is owed them

yes yes yes !

Ode to absentia

I have written enough about you to fill a slim volume

or maybe two ships

set sail for one of the countries you visit

sending me letters in the day, with marks and fingerprints from all around the world

they would smell

like you, even as that was impossible

and I prepared, as nobody ever can

for the day I would lose you

why not, you ask, appreciate the now, when you are here on earth?

I have, though, we have never spent our lives together or even entwined

I have been saying goodbye all these years

yet it will not be sufficient, it could never be enough

you are more of me, than myself

and I feel you inside even though you are not here now, and gone in the future

loving you has felt like continual loss and little gain

yet I do, more than anything else, for you are that kite, unmoored itself and got away

the thought that comes creeping up as you laugh, as if I had a twin, and yes, she was the one who grew in courage, living full in ways I knew only from books

you have the lifeline of twenty palms and though you could not be a mother, you have always inspired me, like the character from a favorite story

reaching near and never touching, someone marvelous and unable to approach

I live sometimes with my eyes seeing through yours

the waves of your life nearing but never reaching, shore

at some point there will be a day when you are not simply absent and not around the corner

but further then, impossible to mend, hands of time, spent longing

it may be my song to want and not receive, the beauty that is you, and your life as it cleaves

further away, until from a great distance I cannot distinquish, squinting until my eyes hurt and run

I would if I could, but I never have, and I won’t

it is the theatre of our lives to play out

my role is that of thirsty

yours to make ordinary seem

extrodinary

you are the giver of dreams

I shall always wish

for one more day where I see

your figure coming closer through the dusk

perhaps to stay a while, even if we do not touch

I long, in layers, not to lose, what I have, not.

For anyone told they have Gastroparesis read this

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.

Birth

thumbnail

It is said

by mouths that do not move

it is gauche to write about oneself

(over-much)

and she didn’t always, for the world had so many things to describe

until the sink hole swallowed her breath, tar covered and added feathers

her crimson brand ran like a howl down a deserted one-eyed street

if she were a fish she’d have no scales, and nothing to measure what she lost

nor a compass to find through hooded treeline, her way back to who she’d been before

this is the way of transformation

forced from our stage we are bound and gagged

the way forward obscured like rubbing grease on glass

it hurt to be cut by ice, it stung to know no intuitive language

hands tore at her sides whilst she slept on a brick within a house, held down by gravity

they told her; you will not recover it is time, to put aside hope

along with your beautiful dresses, your long dreams and afternoon sun

she wasn’t ready to lie, like a pin against other cold metal

to be counted and cooked to the marrow, ready for sucking

for she was warm, she was alive, she hadn’t climbed all her life, just to see a cloudy day

it wasn’t her way to admit defeat

as migrating birds returned and sat like tired audience to her calls for help

she knew, a fight is never asked for, it beckons you when you stand on cliffs edge

trying to count the ways you might die

such a sorrow in planning your own end, long before you intended

she still had so much still to do

hair to plait, skirts to hitch, and ride, ride out into the wilderness

where raw bones are the purest listener

they will hear you when you throw yourself down on wet moss and

burying your fevered head in earth, call upon angels

for protection was something she hadn’t thought of

since she was a little kid walking to school alone

and then she had an imaginary horse, and all the years to come

now, the clocks turn back, time rushes forward like an impulsive guest

who has drunk her fill

ransacking light she streaks out into the forest and you cannot follow

because she is quickly absorbed into gesturing evening dusk

perhaps never there at all

that’s how she feels now, half alive, half hanging on

at the witching hour, it is all she can do not to throw herself into the glittering lights of oncoming traffic

for she is not as strong as those who endure like a costume, their own brand of hell

she has only herself and it isn’t enough

so the words come

and they stay loose and unsure upon the page

as if they know her fragility and their own insubstantial compose

if she can stay long enough, maybe she’ll see something new

maintaining equal hope with encroaching dawn

that is when everything from the day before, gathers

turns to dust and we begin over, perhaps better

with every urging push, splitting apart, garnering strength from invisible force

as fierce and distant as a Northern wind

we who know, how to birth life and produce hope

from the fragility of almost nothing

 

(Inspired by RandomwordsbyRuth who said; “Survival is the highest form of compliment we can give ourselves.’)