eventually even the hypochondriac will be right

odd for the child

to fear drowning

when his life now is so long

stretching like taut ribbon in sun

he imagines like plain moths who drown themselves

in light emanating from dark

his own lifeless body buoyant on chlorinated pool

why he thinks of his death is anyone’s guess

perhaps the morbid humor of an intelligent mind

or the broken mosaic of life, beginning its downward cycle

once he asked his father, if the river levies bust

will I know I am dead before I am drowned or

will I wake in heaven first?

His father, a man who only worried about

whether his mistress was going to leave him for a younger man

did not spend time assuaging the boys fears

and he grew into a frightened soul who possessed

no mistress to sooth his night terrors

eventually even the hypochondriac will be right

maybe not this year

as she palpitates her breast for the forth time

crossing nervous fingers over heart, half prayer half search

malignancy her code red, flashing with every terrorizing headline

who invented social media? she mumbles beneath her breath

it was so much easier when we didn’t have access to all the maladies, we’ll one day die from!

Her hands cramp in late Winter cold, immediately she thinks

MS, MD, Fibromyalgia, the beginnings of CJD, maybe Parkinson’s

isn’t that a tremor? Or just too much coffee?

Her jittering nerves remind her, we are unable to compute

the exact day, hour, minute of expiry

all we know is our eventual death is an assured event

it’s the torment of those who are self-aware yet still ignorant

spinning in place, every migraine a brain tumor, every

sudden sharp pain a sign of pancreatic cancer, when a friend

discovers he has Multiple Myeloma (and he never touched asbestos his wife decries!)

she flicks through medical journals online searching for similarity

it’s not her wish to die, but a desire to live, control fate

keeping her on false tender hooks like owl without prey.

His life has been one of quiet dread, each day he inspects

the parts of him most likely to give out, checking his irregular heartbeat

the soft pounding of worry causing it to skip, feeling for swollen glands

skin cancers, lumps and bumps different from the day before

he knows his is an obsessive ritual, even as it soothes imagined

terrors, he sees the absurdity of living in fear bound to a wheel

perpetuated by hours spent researching ways of expiring

did you know you can develop throat cancer from invisible HPV

who knew love was such a sentence? He tells his eye-rolling neighbor.

If he counted the hours he took from his life

contemplating how he will die, when, what it will resemble

it’s quite mad

yet when he is lying in his childhood bed alone

impending dread crawling up his flannel spine

all he can hear are the waves calling

and then, a strange longing in him occurs

urging him to be done with bloody charades

join the onslaught and be carried out to sea

along with every child’s nightmare

and the stifled hiss of adults pressing their knuckles

closely to anguished mouths

for the pale mint waiting room seems

entirely too silent

an earie unsettled fog about it

waiting …

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Stand in radiance

I think of you as I might

the collected soil outline of a beloved plant, died in Wintered frost

slow the creep toward perish, I hold back, I do not want to enter that room

with its antiseptic smell, lolling tongues of linoleum stretching like vast desert

here nothing thrives

not you, in your beige iron bed with metallic purr of machines overhead

nor the sucking out of sight sound of life being apportioned and gentle knock and brush of clutter off stage

I have learned to manage my desires, like labeled things put away and forgotten

they seem inconsequential in the gravity of this moment, elongated into a maw, disabusing itself in perpetuate howl

the green eyed girl who sat astride you devouring your skin with the hunger of the famished, is just a filament of memory, drowsy with being taken out and examined many times

what is real feels false, we fall apart with rules, we are well behaved in chaos

as rain falls, drowning response, we are free briefly, to call for Gods who are sleeping against their fatigue of us

I look down at my fingers entwined in memory, carving the halls of you with journeys taken to your very core

wish I could write like a girl who didn’t need to rinse her eyes of salt and her mouth of violence

there are no mirages in this sterile land, only the abundant hygiene of fear, roasting itself on impotence

here even you, are forgotten to yourself. I wonder if you recall how we were or if

this eclipsed reality, so suffocating and tightly arranged, is your only memory

occasionally I want to do something vulgar and wrong, to break the dreadful count-down

call an old lover, meet them in the broom closet for some rearranging of clothes, we don’t know how to handle things, so we explode quietly inside ourselves

just to feel I am not plummeting alongside you

faithless for sure, my brand of lusting for life and wellness, anything but encroaching perishment, we fear dying even as we seek it

apparently I am not alone in this

strangers will swap bodily fluids in desperate snatching, on top of folded doctors overalls. That strange, nameless brand of green we all loathe

I was a false girl before we met, learning to reign in her impulses against a backdrop of damage
thriving under the rental of youth with no care for those far-off dates waiting in distant wings

life was already its own brand of unbearable, it felt yet, too searing to imagine decrepitude or bad luck

instead, thrive on the daydream, liquor up the inside of your nightmares and send them galloping and sweaty into the abyss

rest in the drowsy arms of indifference, for everyone wants something and nothing is as it seems

stop caring

until blinded or crippled, you crawl to your date with the inevitable

hearing your ancestors crow their dissatisfaction at your cliched rejection of fate

compassion doesn’t cost, but as I stare at the vacancy in your eyes I know

i’d say yes to the proffered ease of escape

yes to anonymous lovers and things to someday regret

but not now whilst we stand under the radiance

when life still reigns and I know how to squeeze from it, that ounce of pleasure

not hedonist but survivor. Some survive in the calm shallows

I want to wade waist deep in warm water, feel your touch bringing me back to life

not forget what it was to circle the varied heavens and their demands

nor the feeling of my heart in my throat, birthing color and chaos in equal order

I imagine you as you were, impossibly alive, bright in ways that hurt my eyes

our dance around the mandala of us, ever decreasing, unawares of our own diminishment

your last words lingering in pre-storm humid air, like fruit left a little long in sun

sticky and soft we meld together and break apart with the astringent sting of broken clay

turning again to earth, as if it had never, not once, not even in dream

held water.

Outcome

She came into town

breathless with excitement

they were dying around her

but she wanted to go for coffee

to get her nails done, her hair, wax the city

burn the little temples of obedience

she didn’t think a swath of fabric

let alone standing apart like courting

birds

could slow the spread of something

fictional

she was young, though not as young as others thought

Botox took care of that

and a little filler

her heart was set on

kicking up her heals and the virus

was just a news cycle

nothing to take seriously.

Waking in hospital she

momentarily forgot to

smooth her hair down until

she felt her fingers brittle and cracked

her beautiful face marred with fever

“at least I survived” she smiled

with yellowed teeth, hot with flux

half joking at the scared nurse who

was working her second double shift.

They decided not to tell her yet

until she was out of danger, if indeed she ever

was

that her father, mother and little sister

were not going

to wake up again

and join in her

merriment.

The Right To Die

https://www.yahoo.com/news/column-californias-aid-dying-law-100053133.html

The Right To Die debate is one I have strong opinions on. Ever since Brittany Maynard decided to end her life to avoid inevitable agony and suffering and watching her discuss this in many interviews, I concluded that the Right To Die law should exist for everyone, everywhere.

There are pitfalls no doubt. I can imagine nightmare scenarios where people are ‘terminated’ by bored relatives who do not wish to take care of them. So obviously safe-guards must be paramount. That said, I am open to the RTD law be expanded to include dementia patients and those with serious Chronic Illness, including long-term-depression.

That’s murder! You may say. And part of the invariable slippery-slope! But I would disagree. Unless you have been the victim of Chronic Illness and/or long-term-incurable-depression you cannot speak for others who suffer each and every day.

A few years ago I killed a kitten who was suffering. It was in agony, unsavable and its liter mates had died in excruciating agony. It was a Sunday and no pet-store nearby was open to euthanize the kitten. To spare her suffering I put her to sleep myself. It was the hardest thing I have ever done, I didn’t actually think I had it in me (to take a life) being vegetarian among other things. But the compassion for her suffering over-took the fear of harm.

The harm was her suffering any longer and that is how I see RTD laws.

Obviously we have to put into place protections against this being misused. I recognize that many deeply devout folks believe God takes us when we are ready, but I have never subscribed to that. How is suffering in agony EVER God ordained? If a God exists I do NOT believe he/she chooses people to suffer in agony for years on end. Thus for me, that argument is moot.

Without the issue of ‘taking God’s job away’ we are left with the morality of RTD laws. If I see someone suffering as horrific as it is, to consider their dying at my or their own hands, I would want to help them not suffer. If that was their true wish.

In the case of dementia patients, if they sign a waiver now they can ask not to be force-fed and kept alive, but it still means those wishes can be ignored, effectively they can exist for years as a vegetable, and do nothing about avoiding that outcome. This isn’t a pragmatic thing. Obviously our society is going to be destroyed by dementia cases as more and more develop it, but irrespective, this isn’t about convenience of death, it’s about the mercy of death.

Few of us (I know some exceptions) would wish to shit on themselves, not be able to eat, remember, function etc, and lose all dignity and awareness. Most of us would prefer to die. Giving us a way to write this out and have a representative help us achieve this, seems to me, a mercy not a convenience.

The whole subject is heart-achiningly awful and we avoid talking about it for the most part. But we need to think of this. Just recently with Covid 19 ventilation, the question of dying and life has been very pertinent and young people who never wrote living-wills have been in limbo. It is never too early to consider these things because we really don’t know.

When I put my cat of 18 years to sleep it haunted me. Briefly I went back on my belief that RTD was the best choice because I thought; If I can’t handle the images and flashbacks of the catheter being put in my cats arm, and watching him being put to sleep, if I felt that was ‘wrong’ in some way, how could I handle it if it was my dad? Or someone I loved?

Truly I think I am nearly not strong enough to cope with that day. But despite that I would still do it. TO END THE SUFFERING. It would haunt me and yes it would feel worse to me than if they died naturally just as it would have been ‘easier’ if my cat had died naturally instead of being given drugs that killed him. Watching that was horrific and it did feel ‘unnatural’ because it was but sometimes it’s the only choice, and it’s the best choice and even if it leaves us feeling horrific, we should consider it.

I don’t regret putting my cat to sleep. But I regret that it had to happen and I still get flash-backs of the last moments. If I had to do that with a human-being I know it would be the hardest thing I ever had to do. But if I loved that human being and it was THEIR WISH I would hope I had the courage and love within me to do it or be part of it or at very least, support their wish.

Having had chronic illness I know we can be ‘not in our right minds’ and so the issue of ‘how sick is too sick?’ must be considered. Depressed people for example, may be able to be cured, so are they really the right candidates for euthanasia? I don’t know the answer, I only know that if someone I knew had suffered for 20 years and wanted to die, I would find it hard to deny them that mercy. If all else had failed.

This is not what we want to think about but right now, out there, are many people who are in this VERY situation right now and have no recourse to end their suffering. I believe safe laws CAN be made that protect against abuses and I believe at this juncture in our societies evolution we need to consider those things, not to keep our sick numbers in check, but to be merciful to suffering.

The courage of Brittany Maynard has stayed with me ever since I heard about her and followed her story. Some may say that is morbid. I say it is honest. I still think of her, she affected me deeply and opened up this debate. I hope others can get over their prejudices of what they believe others should do and give people a CHOICE. Just like my best friend who doesn’t believe she would have an abortion but believes others should have the right to choose if they want to have one. Such is this debate about an individuals right to choose their outcome. Who can honestly deny that in the face of suffering?

I often think if I live to be old, I will be alone and I fear that very much. I think if it were possible I would choose to end my life simply based on not having enough money to keep going or enough reason and family left to make it worthwhile. Is that wrong? Maybe. But one day that too may exist as an ‘option’ and a mercy, to help those who would otherwise resort to suicide which can often fail and leave awful aftermaths. This is a very sad subject but it’s one many of us will one day face one way or another. I don’t want to dwell on it, but equally, I don’t want to pretend it could never happen.

I think now more than ever, we have learned, anything can happen and we need to be prepared. Taking responsibility for our lives AND our deaths is a responsible decision, and helps those who may be left in our lives, follow our true wishes. I hope I never have to find out, but I believe we should all be prepared for both the best case scenario and the worst. Contrary to popular opinion, taking ones life is probably the hardest thing a person can do, not the easiest. But as this article above states, there are worst things than dying and I would say suffering in agony meets that criteria and forces us then, to consider this subject honestly and with compassion.

Slothing prejudice in times of pandemic

What do you say to a housebound suspended agoraphobe?

You hear Greek words in their diagnosis, the turquoise

hesitation of grasping fingers reaching punctured doorway

how even ordering take-out is

courage to face what cannot be faced opaque

the urgency of illness spreading her

mollified mystery beyond

we read Apocalypse books on the Berserker train

sleeping faces pressed against convex glass

the smear of skin oil, traces against trace, glutted

fingerprints even as we know not where we go

tampered before birth with the adultery of a universe.

what do we say to an extrovert cut off at the wing?

Sinning in the best possible way beneath vaporized bar table

licking salt off girls thighs and shooting glasses and powder

with a wink, shouting; How can you contain this shit?

Close them up and give them a key to be used in

a month? A year? Never?  After cataracts?

They burn with attention and fade without

fuel, here, there, is silence and they don’t know

how to be left alone.

What do you say to lovers who live apart?

She stays by her window watching smoldering emptiness

barren streets where once you would walk

up to her and tap on her cleaving shoulder

things were light and free, taken for granted

becoming closed and jarred, boxed in tinted cupboards

within houses shut down like sad faces, eating stale

cake, we try to lift our stinging, souring spirits

sometimes it feels better to binge watch

End Of The World movies and

eat all the bad things in the house, one by one

vacillating between giving a damn and not at all.

The feral cat outside hides her kittens, as if she knows

volatile is the word du jour

the birds sing less as if they can sense

death withers wild against the Oleander

feeling, our collective shutting down, end of

card game, square-jawed gambler has lost his

horse and boots.

Wasps build mud nests, otters chew through

phone lines, apple blossom stands in for

confetti at a wedding of creatures,

clinking wooden cups, the world breathes a collective sigh

animals take over, humans are

yesterday’s big thing, now forgotten

streets sprout trees, lemons fat and sour sweet

concrete, tarmac breaking open

hungry for repair, the long toiled earth

builds trellis’s and green space

from grey whispering ghosts of past

whilst we sleep and dream of

dancing in indigo pointed shoes on patent floors

to dead musicians in violet dresses

held wantonly by the nape of our neck

creatures quietly retake the planet

our savagery emptying like

the very mantle of earth has

shrugged it off, let it splinter, break

wide apart, asking for sexual healing

asking for change, burning the waxen lotus

stigma of our mistakes, time is up. Oh Goddess

have we come upon the end?

What do you say to a child?

Who has yet to know light or dark and asks;

why do we stay indoors, what is the purpose?

We can kneel down and remember, when we

cared, if sparrows fell from their nests and

scooping them up, would run to school nurse

who smelt of magnolias and iodine, our chant

“please make them well, don’t let them die!”

Remember the good magic? Bring it back,

when kids are released they will

not wish to run rough over green fields

tear down trees to make way for

metal and slag, in ten years standing there

smoking inhaling cancer beneath the whistled song

theirs will be a new time

if we learn, we can repair

what do you say to yourself?

When it’s over and it’s just begun?

When we make with every step

a choice

a consequence

a claim on this

delicate land.

For Earth Day 2020.

Isolation in the time of Covid 19 – published by Indolent Books

I would be extremely grateful if any WordPress readers would consider clicking ‘like’ at the end of this page on Indolent Books so that I am asked to contribute to them again. Thank you so much.

https://www.indolentbooks.com/what-rough-beast-covid-19-edition-03-23-20-candice-louisa-daquin/

Compulsion

I just watched the amazing film Bohemian Rhapsody. Let me ask you something … if I begin this post with; “And I wanted to talk about being gay” How many of you would stop reading? Ask yourselves, what does that really say about you?

I want to talk about being gay. Watching the story of Freddie Mercury it struck me (again) how the tiny minority of people who are gay (not bisexual) still struggle. You may ask why or point to more worthy causes to talk about …

Imagine being 1/2 percent of the population. Maybe you already are. That’s how many women are lesbians and men are roughly 2/3 percent. Bisexuality is far more prevalent, however 85% of women who are bisexual end up married to man, which begs the question, is there such as thing as ‘true’ bisexuality’ or is there just a desire to play both sides until you settle down, invariably with someone of the same gender?

Either way, ‘true’ queer women are rare. For men, those who are bisexual tend to end up being with men. It begs the question – do these stats indicate being a lesbian is not a life style many people choose or want to adopt? Or simply, that most women have a tendency toward heterosexuality as their preference?

My unscientific viewpoint for what it’s worth is; Men who have sex with men tend to be with men maybe because to ‘go there’ is almost indelible? Whereas sexuality for women is more fluid, and whilst they may like having sex with another woman and find her attractive, it’s not enough of a hook. Is sexuality and gayness a preference? I don’t think so, which means the ‘true’ number of gays is smaller than we even credit.

I personally don’t understand why more men are gay than women, as I am biased and see a lot more to be attracted to in a woman than a man (although they are harder to go out with because they are more demanding and selfish and less romantic). Irrespective, a man who is attracted to men, doesn’t go back and forth as much, a woman who is attracted to women may well end up with a man as other considerations come into play. To me, this isn’t being gay – it’s just having fun. Maybe I’m saying being gay is massively different to being bisexual.

I would imagine the negatives about bisexuality are; judgment from both sides, and that’s about it. If you are totally gay then the negatives include persecution, ostracizing, not fitting in, having no role models, no representation and most of all – feeling weird because 99/98 percent of the world doesn’t ‘get’ you and where you are coming from.

How many times have I been told by a woman that they find other women attractive but they can’t really understand wanting to be with a woman for any length of time – interestingly not because of sex, most women like oral sex, but because of the high maintenance being with a woman entails and how nice it is when a man romances you. It is true, it’s rarer and finding it with a woman, well you often end up having to do all the work and while men are good at that, women aren’t as much.

Hence why of those relationships that last, the classical butch/femme roles tend to work out best because the lesbians who are butch want to imitate a man and romance the woman and the femme is happy. I realize that’s a negative stereotyping of female-female relationships but there is also some truth.

Thinking about the AIDS era (which has never entirely left us and now that there are new drugs that people can take to reduce their likelihood of HIV exposure, where’s the incentive to continue to practice safe sex?) and how many gay men (and others) died and the terrible things that were said about them and how generations exist now that know nothing of this and how it will be forgotten …

I remember I was very young but I heard people say things like; “AIDS is killing the queers its divine justice” That told me early on that gay people were not equal and would never be treated equally behind closed doors. At one point in my life I was in the closet because it was easier and unlike a person of color, a gay person can often be in the closet to avoid prejudice. I’d not been in the closet before and suddenly I was privy to the things straight people said about gays when they didn’t think one of them was listening. I realized that this had all been said of me when I wasn’t in the closet but behind my back.

Then the other aspect to consider is the gay community and how judging and excluding it can be and how for many queers, fitting in with their own gay ‘family’ doesn’t always come easy or at all. I personally tend not to get on with gays, I have found them to often possess the worst traits of heterosexuals which deeply disappoints me. Lesbians judge you for not being queer enough, or act like swaggering men. Gay men can be such divas that they own the sarcasm and bitchiness in the room.

Does it mean you’re a ‘bad’ queer if you don’t feel in with ‘your people’? And yet … why assume just because you share one thing in common, you’ll get along? I’m sure I share something in common with Trump as well … point made.

The female gay world is divided into sections, either you’re a successful, educated career person in which case you go to exclusive things and judge those who are not on your level. You only date those who are like you, and you have high expectations as well as demanding those women you date are athletic, social and above all, status and financially successful.

The other group are the more neighborhood based gays, and the clubs teem with liars, frauds and fakes alongside players, druggies and alcoholics. If you imagine being heterosexual and reducing the number of options you have from roughly 48% to 1/2% you probably wouldn’t find someone you liked either. And let’s for not forget, if you’re straight and you see someone in the street or anywhere, you can essentially flirt with them without fear. But how can you tell when someone may be gay? Contrary to popular opinion, the gay-dar doesn’t work THAT well. So you are further restricted to mind-reading, falling in love with heterosexuals or going to gay clubs where the worst reside.

Boo Hoo right? A hard life. But not nearly as hard as many others. Combine that with a co-morbidity of higher rates of depression/anxiety (no wonder) and all the accompanying aspects that may accompany homosexuality and a life time of being shamed, ridiculed, the odd one out, and it’s not simply one issue, it’s everything.

There have been times I wished fervently not to be gay. I got fed-up of having a crush on my straight friend who wouldn’t like me if I were the last person standing, I saw how well men can treat women, I envied the heterosexual world. That’s why being gay is no choice, as most who had one, wouldn’t choose it.

That said it’s not all negative. Some of the best parts of my life have been as a result of being gay. Watching the film on Freddie Mercury really affected me profoundly because it reminded me that only a few years ago in my city there were stickers condemning gays having the right to marry, that my own life has been severely disrupted/destroyed for several reasons related to being gay, and how many gays have suffered over the years.

I may not be a huge fan of this modern world – 2018 onward – and I may hark beck to ‘better’ eras as I perceive them, BUT I know things are improving for gays and I hope one day, being gay is not something that will pull you down and give you pain. It will be what it is meant to be, a natural minority who see things differently but are in every other way part of us all.

Spare a thought for gays even as you think they have all their rights now and should stop complaining. It is not as simple as possessing rights. Gays are still more likely to commit suicide, have addictions, mental illness, be ostracized from family and be beaten up and murdered. Gays can often be very isolated, their pain not taken seriously, and feel alone even among ‘their kind’ and it really does make a difference to us when someone, irrespective of gender, befriends us and likes us for who we are, without being uncomfortable around us.

A friend for a gay person has twice the value because we never take it for granted and we always feel so lucky. After all, most of us living, remember a time when admitting you were gay would guarantee nobody would be your friend. Therefore, thank you for all who show kindness to us, and remember, compassion is the only thing that compensates for the erstwhile damage human beings have historically wrought, both on minorities of all kinds and our planet.

I dream of a world where it will be okay to walk down the street and not worry about holding hands with the person you love, when it will be comfortable to kiss someone you’re with, in public, without fearing being beaten up. Just as women worldwide, dream of walking down a street without being raped. I believe this day can come, if all of us have the patience to see the value of talking about this and not saying ‘I’m so fed up with the gay agenda or the feminist agenda’ and switching off. Until we have true equality, the only thing we can do is bring awareness and hope in turn, it produces change.

Oh, and to those bisexuals? Yeah. Sorry. But on the other hand, I’ve got a point. Can’t you sometimes choose the girl? 😉

Go see Bohemian Rhapsody. It’s incredible.

TLDR is bogus / we should read, we should care and take the time

TLDR is now in the dictionary (which I think is pathetic). Unfortunately this post is going to be too long and you don’t have time to read it fair enough but I’m writing it anyway because I have to.

…

Today I found out a very lovely girl I recently met (nothing is random) has Gastroparesis. It really affected me. See I had put all the awful horror of last year and the early part of this year into a box and avoided it. That’s what you do when you feel traumatized and are just trying to get your life back. How lucky am I to even have that opportunity?

…

Seeing those who continue to be sick, year in year out, through no fault of their own, makes you so grateful for any renewed health. After getting suddenly and violently ill last year in March with a suspected Noro virus, I got better quickly but remembered the awful feeling of unending nausea. I had two more brief bouts in May and June the last one sent me to the ER for the first time in my life because I had what felt like heart palpitations. Then in August of last year I got violently ill out of the blue, half way through the day, and didn’t get better for nearly a year. One of the hardest parts is how badly let down you can be, by people you thought cared about you, but on the upside, you also find out who really loves you and who doesn’t and that can be powerful and freeing.

…

I had to quit work for the first time in my adult life, I went into massive medical debt and I was suicidal for the first time in my life. I’m not saying this to make anyone feel sorry for me,I feel lucky. I’m saying this because I didn’t know ANY of the stuff surrounding this before, I was taking my health for granted, I thought being healthy living meant I would avoid bad things, it doesn’t always work like that.

…

It is thought Gastroparesis and other similar extreme illnesses are primarily caused by either Diabetes, complete breakdown of your autoimmune system, physical causes like gastric-bypass surgery or something you are born with, but most commonly is considered to have NO CAUSE. However if you do some research it becomes clear that VIRUSES cause the latter onset. Why women get it 9/1 over men and why pre-menopausal young, fit, healthy women get it, is also unknown, although studies show having a full Hysterectomy can reverse it so it clearly has a link with ESTROGEN.

…

I was told after being so violently ill for months without ANY cause found that I must have Gastroparesis. Gastroparesis is actually very rare but has become a catch-all umbrella term for anything the medical industry doesn’t understand. Supposedly the ‘gold standard’ test for this is the gastric emptying test but I found it is very unreliable and can vary from day-to-day. I was put on REMERON which is supposed to help a bit, if anything it made me worse. Fortunately for me, the city where I was at that time living in, San Antonio has one of the best Gastric Research Centers in the US I was able to see them and what I was told was life-changing.

…

My doctor told me I definitely did NOT have Gastroparesis and that in his experience 8/10 people diagnosed with non-diabetic Gastroparesis don’t have it. I had an EGG which showed my stomach was literally flipping and lurching and not emptying fully because it was ‘dumping’ too fast – this is called Gastric arrhythmia and is almost the opposite of Gastroparesis. I was horrified that they could have got it so wrong.

…

I was put on a very low dose of a medication that slows your stomach down. I’d lost so much weight it was dangerous, I couldn’t eat, I was throwing up all the time, I had constant diarrhea (which interestingly most Gastroparesis patients don’t have but they completely ignored how illogical it was to have constant diarreah despite this being almost the opposite of what you’d think of when you imagine a ‘frozen’ or non-working stomach which is the definition of Gastroparesis). The medication changed my life.

…

I had been suicidal for the first time ever because I decided if this didn’t get better I would not want to live. It was too awful. I didn’t have any family support, I felt so alone day in day out, that’s the worst part about something like this. That’s why my heart bleeds for those who are going through it. I had so much medical debt and couldn’t work and was nauseous (really, really severely not a little bit) 24/7 it ruined my life. The medication changed everything I’m still sick but I can finally work again, I can eat normally although my appetite never came back and I have to force myself which sucks. I have put on more weight than what I weighed before I got sick (as a precaution) and I am on the road to recovery. BUT I keep thinking of those who are still going through this.

…

I feel finding out today this lovely friend has what they thought I had, not only means I must do more to help others, because I KNOW how they feel, and what they suffer, but because we need to find out why this disease and others like it, are happening so often now when they used to be super-rare. It isn’t because people aren’t eating organic, most of the people I know with these things did eat well. Many of the doctors dismissed the link to Epstein Barr Virus and it was my PCP who finally decided to test me. My results showed I had EXTREMELY high titers of EBV in my blood. I worked out after contracting the Noro Virus last March I must also have either had a reactivation of EBV from childhood (90 percent of us get it as children or young adults) or I had never had it and got it for the first time.

…

Either way I realized EBV TRIGGERS Gastroparesis and Gastric arrhythmia. Somehow the autoimmune aspect of all Herpes Family viruses (like Shingles too) trigger various illnesses. The most common you think of with EBV are ME, Chronic Fatigue, MS, Fibromyalgia, Stomach Cancer. But more and more doctors are seeing stomach issues like Gastric Arrythmia and Gastroparesis. The medical industry says Gastroparesis is incurable. I don’t believe it is. I have read that if you can get your EBV down you can get over Gastroparesis. Many times if this is the cause then beating the virus beats the symptoms.

…

The only current treatment for EBV is high dose Vitamin C. I could never handle the acidity of Vitamin C. I found that Dr. Mercola made a Lypoic version that doesn’t hurt your stomach and I began to take 4000mg daily. Ideally if you can then IV Vit C works even faster and better. Once the EBV is reduced in your body the symptoms of the Gastroparesis may abate. The information online is awful and inaccurate, it basically says you will have it for life, but I have known people who overcame it, through diet modification, managing stress (which can exacerbate any serious illness) , adequate rest and treating the CAUSE which doctors never talk about because they want to treat the symptoms.

…

During this time many things changed in my life, at first I thought those changes were bad but I have come to see sometimes you have to force yourself to change, and what you think is a bad change, actually is a blessing in disguise. This illness forced me literally to reexamine my life, I realized I needed to make changes, which included moving and living elsewhere, as well as redirecting my energies into things I’d neglected such as teaching dance again and not giving up on my writing. I had let the awful experience dampen my hope and the truth is, when you survive something that awful it gives you a chance to find your joy again which I have in so many ways. I’m still on the road to recovery, I still have pretty bad days, but I am mindful of how far I have come and that along with support from loved ones makes all the difference.

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If anyone you know is having severe stomach issues and they need help please give them my details because I want to help people. So often people are isolated and uncared about when they are sick. I have known many who have chronic illnesses and they are neglected by their families and invisible in our society. I felt totally alone when I was at my sickest it was the worst feeling in the world, which happens to most who experience long-term illness. The hardest part being since serotonin and other brain chemicals are actually made in the stomach, when you have severe stomach problems you get extremely down and anxious. On top of that Gastric arrhythmia produces a physical anxiety that had me crawling out of my skin, something I never had before.

…

I am truly blessed for having a chance to recover, but I believe in paying forward and I also believe if any of you know someone suffering, some of this information can help that person. The doctor I saw was in San Antonio, Texas and he was really, really good and I’d even say flying there to see him would be worthwhile, he is the clinical director of the National Gastroenterology Research Center in America.

…

If it wasn’t for him, those who love me and doing research I KNOW I would have either killed myself or spent the rest of my life suffering. I want to help anyone else get as well as they possibly can. I truly believe viruses are the cause of most things (cancer, etc) and we can fight them. You are NOT alone. Pass this on please to anyone you know who may be suffering. Thank you for reading if you did. We need to bring awareness to rare diseases like this that are growing in number and striking healthy young people in their prime. Never give up.

In her cull

Before

Who knew how to die?

That it wouldn’t be instantaneous

As children imagine

A sudden pain, then unconsciousness

Who knew?

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

Who knew?

It could take the very young, wrap them in wool, to cast down wet hill

The jarring and bumping eventual colission held at bay

Till forgotten

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

Who knew

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 say

I wish you would stay

I could read you eternally

It’s the macabre and giggling nervousness you feel

Around dying

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

Breathe

I learn to appreciate life

From her dying

The morsel of me

Though of language I only know two and

Cannot spell in either

It seems

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

Knew truly

How

To live?

Virus

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