WHAT WE VALUE

Our society worships entirely the wrong animal, venerating them and reducing others to ash.

The news recently devoted a good portion of the sports coverage to how much money certain sports figures were going to be paid for kicking a ball across a field. And this in a time when our jobs are dissolving, our society is being wrecked, our economy may be irrecoverable and certain industries will cease to exist en mass. Put simply, there will not be jobs to come back to folks but apparently we still need to pay these guys billions for their service to humanity?

I cannot understand how ANY society and how any of us can tolerate/accept a sports figure being paid anywhere NEAR that sum for what they do when those who really do jobs worth paying, are dying in droves because they are not receiving enough personal protective gear to protect themselves.

When did we start paying someone to kick a ball millions and a nurse who saves our life, hundreds?

What’s wrong with us?

If I were an alien observing our planet, I would seriously wonder if we all were crazy in our assessment of VALUE. What we value. What we do not. If nothing else, Covid-19 has given us a chance to see this once and for all and try to do something about it.

We have marched for Black Lives Matter during this time because it was over-due and our raw emotions on the subject burst out of their polite shell and filled the streets with ire and a desire for equality but how many of us really want equality? Not all of us that is for sure, look around and you can see it in every facet of life, a desire to be above someone else somehow.

We still routinely under-react and permit by our inaction, serious hideous crimes like rape to go unpunished in this country and others.

It’s the year 2020 and we still think inequality for women is acceptable in some forms and fashion. Let us not forget what Maya Angelou said about wanting to vote for a white woman over a black man. She said – women were the original oppressed group, thus we should work backward until all oppressed parties are equal. I agree with her.

We still think hate crimes against Jews and telling Jews that Israel should not be their country is somehow acceptable, despite those Jews having descended from that country. Would we say the same to Black People about Africa. Of course not! So why do we say it to Israel? Because of the Palestine Question which Europe in particular has decided to side with, uncaring of the history of persecution toward Jews and their right to have some land of their own. Of course we shouldn’t persecute Palestinians either and of course, Israel has made mistakes but it’s now about what optics politicians choose and what side of the story is half-revealed via inaccurate news reporting. It’s essentially about which side looks right to support? Because Trump supports Israel, most left-wing supporters are against it. Yet it is not that simple and never should be. Lest we forget our history.

We still think homosexuality is unnatural and abhorant and that being queer isn’t natural. We don’t say it out loud because it’s not popular to say it, but we think it and we act it and gays know. They know.

We talk about slavery and how horrific it was, but half the time we just pay lip service to the deeper issues, because we don’t know our history so we don’t mention Native Americans and how they were exterminated en mass and continue to be disenfranchised. We’re so proud of ourselves for changing the Red Skins but we think that’s enough. Or how slavery has never really gone away, it’s just changed hands and outfits, but it’s still well and thriving in many forms.

So it’s never enough. Until everyone is equal and inequality and racism are a thing of the past. But will they ever be? With people who seem to thrive on discrimination and putting themselves ahead of others and putting others down? If people think wearing a mask is too much, is it any wonder they really don’t give a shit if you are sick or you are vulnerable? Don’t they just want you to die and bugger off?

Likewise with illness, with chronically sick people, it’s never enough to just have laws that allow them to not be discriminated against because discrimination comes in a myriad of differing forms. Subtle. Unreachable. Devastating. People of color have to put up with this EVERY SINGLE DAY as do women, as do gays, as do sick people. Just one roll of the eye says everything. Says; ‘we think you are pathetic‘ invalidates an entire moment.

Chronic illness is a little like amputation. Obviously anyone who has suffered an amputation will refute this and rightly so. But metaphorically it remains akin to the loss of a limb. You are left flailing, unsure of how to right yourself, and continue as once you were. A part of you is lost.

They talk of periods of adjustment. The stages of grieving: Anger for what you have lost. Shame imposed by a society who now judges you weak. Acceptance of a ‘new normal’ that includes intolerable things such as chronic pain etc. For many, those stages of grieving never really end, they cycle and you go through different dilutions depending upon how you progress.

But progress is perhaps not the right word. In our linear society where so much is expected. For someone to drop off and no longer thrive, in nature they would be left behind to perish. In our society they are carried along but reminded frequently, of their burden, of their ineptitude.

For many who suffer mental illness, physical illness, both, there is a lot of shame attached to their existing after this fact. Even as people do not come out and say it directly (and believe me, many do!) there is a thin veil that is easily penetrable. People know when they are treated differently, seen differently, worse, judged without jury.

Being ‘sick’ in any manifestation is seen as a ‘weakness’ by our society. This invariably goes back to the ‘dog-eat-dog’ notion of surviving. The weakest link perishes or is a burden to the whole. But these days, with our so-called faith and mercy in place, one might imagine a little more compassion? And if you did, you would be sorely disappointed.

Since getting sick in 2017 I have felt intermittently well enough to continue working and ‘accomplishing’. But as with any pendulum, when it swings deeply toward illness, I am right back at the horror point of when it all began, down on my knees, imploring the universe for healing. And for the most part I have done this alone, because as all those who have been sick for a time will attest, most people do not stay by your side. Even those you expect to.

You can’t plan any longer. A trip is a fear because what if you get sick? Then someone suggests; maybe it’s in your head, maybe you are making yourself sick? And no matter how many times you prove otherwise, they think maybe it’s a choice, just like being gay is a choice, right?

Wrong. You can’t rely upon yourself like you used to because you never know how it’s going to be, how you are going to be. And usually you could be relied upon 100 percent and now that’s gone and somehow you still have to plan a future, but how do you plan a future if you can’t rely upon yourself?

I try to take something from every experience I have, including negative ones. Without learning we don’t grow we just regurgitate and I would rather grow even if I’m throwing up and in pain as I do it. I have taken from this experience what is obvious, but I have also tried to take from others experiences, and have noticed disturbing patterns among those I know who have also been sick for a while or a very long while.

People leave.

People don’t care.

Poverty goes hand in hand with illness.

Anxiety and fear are natural outcomes for a plethora of reasons.

Loneliness can kill.

What I have come to see is this. Sick people are TRUE WARRIORS.

They fight the unimaginable that most of us never have to endure. They have to get pacemakers in their 40s, they have to struggle through taking 2 hours to get dressed and STILL MANAGE TO SHOW UP and this strength – this strength is what I have learned the most from my experiences and listening to others. Strength comes in many forms. We dismiss most of those forms but they are real.

I watch people who have seizures and brain tumors, fight and fight and fight and I realize, we’ve got it backwards. We should be applauding these people not marginalizing them. But we do everything backwards, because as a whole we are poisoned by false ideas of what is valuable and what is not. We toss aside those we deem un-valuable when they are perhaps some of the most valuable people in the world.

So if you are disabled in any way, be it in your head, or your body, remember that. You are some of the most valuable people in the world. Let nobody ever let you forget that. You are some of the most valuable people in the world.

This is written for my sister Angie. You inspire me every single day. You are that light in the dark that refuses to give up and because of you, I refuse to give up too.

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.

Come on Elaine

glasses of wine in a table
Photo by Inga Seliverstova on Pexels.com

Come on Elaine … this is how it would go

you’d get the email about your son, either dead, or gone, or famous

extremes of an only child, spoiled by two successful parents

likely famous, as he was in childhood, yeah … fat and famous

so now, he’s still not tall and he’s still not thin but he might be

unwrinkled and have lots of kids or … Venereal Disease

he might hate me, i suspect he would

why? Why do i think he’d hate me?

When he was the one who threatened me with a sword

when he was the one who broke the Lalique vase

i suppose because breaking hearts is worse than betrothed glass

though someone, with his desire for the world

i doubt anyone had the power to break his, because words

written by 18-year-old boys on the inside of cassettes of

music for my girl, rarely mean what they say and speak

with their hermaphroditic pricks.

i was older than him in lots of ways

i would have told you Elaine, it wasn’t my intention and yes

you remember us arguing but it wasn’t all me

when he was high, he was really high and

when he was low, he was really low

a sundial beneath the earth

i stayed witnessing, smoking chain after chain

his taking of porn, watching nude and slobbering

as i clamored in my shared insanity, letting him

have his hunger sated in my emptiness.

Well … depravity is depravity and girls who hate themselves

they’re really good at running with that and boys who

like to torture cats

did you know what he did behind that red door Elaine?

did you know what he was really like or just your little boy?

i remember his father once visiting and how

estranged they seemed and he hollered at you like he’d

never stopped not for one minute

and you screamed and screamed and screamed

i remember it because i witnessed it, see i’m not the bad penny

you assumed,  but he might think i am, that’s how our memory works

put her in this box, label it wrong; She’s the reason i got a Second at University

she’s why i didn’t fuck enough,  she’s why i fell out with my really good friends

(who weren’t so really good, if they had those seducing intentions)

and she? Sure, she let his friends do her, like she sold her soul for lasagna

or a slice of wholesome bread with Ganja

God she was always hungry, or purging

and the drugs he gave her, sometimes with prescriptions, sometimes with sweaty palms

sometimes naked on his stomach where his scar, shone like a dalmatian on a fire truck

she half-liked his brown skin and his imperfections, the matted hair, green eyes, short squat pudgy thighs and tiny cock

they didn’t threaten her, they reminded her of a girl

she felt safe even when she felt scared, his hormone injections, wild untamed stare

he said she made him calm, especially when sucking him off to a good record

yeah I bet. Swallowing is harder for those who give head, to narcissistic boys with pretty

circumcision.

Though it’s been so long, she can’t be sure, of what cut what and who bled and who left the door, slightly ajar,

because that was the year she found out she was mad

and he was too, so they sort of worked

though he wasn’t her boyfriend, though he wasn’t her brother, he was a lot of things under the covers

places where they could escape themselves and that eventual horror of knowing

you haven’t got any hinges and the world’s gonna spit you out into the gutter.

Elaine, she could tell you that your son, was actually a surprisingly good lover after she got through showing him how

or she could lie and say; We just watched horror movies, sometimes he posed me

and pricked me, and played, games, with paint and swords

which was also true, because it was all true.

We gorged ourselves, only children without parents who were home

and when you were, you chain smoked too, behind your dust and your exhausted slump

we all did, drinking your wine, eating delivered organic food, such irony Elaine

you think i was just some dumb girl with thin hips and a small brain?

You used to look at me like; Who the fuck do you think you are? And I’d look right back because I wasn’t wearing my glasses and I was fucking the world with my sadness and it really didn’t matter what you thought or what anyone thought, because i’d already decided to jump

and i was watching all the time i was standing there, in my short skirt and my bare legs and my impossible tight breasts and my impossible tight cunt, all of which you hated, because your husband had left you for one

but one isn’t me, and i wasn’t her and she wasn’t it, and you weren’t alone, you were free of him, and he was the reason your son hated you, not me.

I watched through the floor boards, through holes in the ceiling, to your life unpeeling

for your short stubby hands revealing, to the kisses you gave the picture by your reading glasses, to the wine you drank and stained your hands with, before you passed them over yourself in genuflection like a good Catholic and reached for the vibrator

to your son hating you,  as he may have loved you also, why we never quite knew, does anyone? Hate being so close to love, as sex is to horror and horror is to desire.

Elaine, you summoned like a Magi, some kind of anger in him, at a strong mother or women in general, he was a sexist asshole, who liked men who hated women and women who let men hate them and I was a great substitute for Robert Crumbs little busty girls who bent over and let anger take them right up the ass

but he thought anorexic actresses with dark nipples were beautiful and one time i visited his office in Greek Street Soho WI and he was talking to a Jewish actress who i also thought was hot

Rachel Weisz you still are …

and she walked away with her five-inch heels and his eyes up her skirt

i wanted to say what about me? But i was just ordinary despite being an eight to his one, and she was a handsome, famous, adored shiny girl with a full rolodex and you were a tit man

who because you were a man, (though you’d never be a real man and that made you crazy) thought you could, (fuck Rachel Weisz? Seriously?) and you never would, but it was funny imagining, especially when you already had more than you ever would

(with me, the girl of cinders and soot)

so i watched you watching her and later on when you pretended it was her you took

i pretended right back because i wouldn’t mind being her or being you

and if i were her I’d let you split me open four ways like star of anise and divide me back because it’s a soulless game and I’m your whore and i’m your mother and i’m your bloody crack.

I’m sure now you have a young wife and four chubby kids with green eyes

or you might have died, by plunging into a canal, or cutting your throat with a blunt razor

if you’d started to shave after you starred aged ten in Ms Marple as the fat cheeked boy with shorts on and a smart mouth (yeah that was about right)

but either way, i hope you will let me know Elaine, what happened to your son

because i didn’t burn his house down, he did, he struck a match and he lit us both

on fire, until we stopped being repulsive and we stood charred and broken

in Camden Town, not being able to afford to drink, at The Elephant

or fuck each other in your bed, or die standing up right then and there

because burned people are shadows, they persist

in

reminding us

of

them.

I think of him regularly, whilst I’m sure, he has long forgotten me, which isn’t fair and is ironic and really typical, because men operate on a different time and hour. They think of the girl who is bending over now and not the one who did when they first learned to use their magic wand

unless she was obedient at all times and acted the part, in which case they will brag at 45 of the one they did in St. James’s park, who hitched up her skirt and got on all fours, and she was a “right go-er that one,”

Yeah I gave it to her so many times, she couldn’t walk and yeah, yeah, yeah, builders salivating in a pub talk, I guess you had me enough you could, but you’re probably an attorney and that means you like being tied up and debased, and it’s bad taste to talk about women who left you

raw

because you’re in control, you’re the passive one with the fat wallet and the penchant for sex in the afternoon in a diaper, or with a plastic mask over your hair, that you cut when you became serious, so you could hide the scream and the mess of your desperation.

Sometimes I check online to see, if you posted the naked pictures you took when I wasn’t even legal, in your bathroom, where your mom had lots of soap in fancy bottles

whoops

because we both have ruin in our DNA, and Elaine, if you’d asked, I might have slept with you both, your eyes were so lonely and I liked how ruined they were

the extending, unending madness of your family of animals

it comforted me, slowly dawning, I was mad also, I really didn’t know it, until

my

little foot

fit

your

little shoe

that

is.

(First published in Ascendum Magazine 2016).

I cannot, you see

person holding black and green bird
Photo by Kristina Paukshtite

What if she’s me? The woman screaming without reprieve?

And what if she’s you? The body beneath the sheets lifted by strangers?

Every time the phone rings, I see in my minds eye, your prone form

fallen, or hurt, somehow

this fear I inhabit is years in coming

your fragility creeps up on us like a wettened shroud

once so strong, you’d take me in your bronze arms and

press me to you where the sound of your powerful

heart beat assured me nothing would erase or remove

your certainty

then the sick hiss and whisker of machines

a tube down your throat, a glazed look, no recognition

slack hand filled with needles, empty eyes void of life

I felt you moving away even as you stayed

gone and still there

a stranger in your face, your expressions glazed

even the taste of your lips changed

as if blistering over from sudden Winter storm.

As time ticks down, we look up

to salvation, prayer and hope when

maybe nobody listens

I stand over you as you sleep

your little bluebird chest rising in dream

I want to

climb on the bed and laugh as once we did

curling around each other in chased game

oh so much joy in one shared heart

when i was your girl and you were my

evening rose

now the dust has settled and we still

scattered pictures, cannot see clearly

all around are shadows and shorn warnings

easy to lose ourselves in fears glory

like gathering a bird who has fallen from glass

stunned and dying pressed in our hands

death on us now, like unsought reflection

glinting, glinting, glinting.

I miss you, the you I knew

better than I know myself

who would turn in her sleep and

touch me without waking

such was our eternal fuse

one into the other, no boundaries

and time is a fickle fellow

taking you and keeping you sickened

welded to pills and paper casts of closed theatres

we stand apart, at times nearly severed

I would sacrifice all to make you well

but i have given everything i know

it is clear we go in different directions

one is the end and you drift like

wind on frigid water

while i continue to swim upstream

i cannot, you see

let go

your bright feathers dull

and still i look up

when birds fly into glass

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Protected: Des souvenirs fantômes

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Possess no place

ghost_on_stairs_lg-57c74ae55f9b5829f47ec990

a day may show itself

long or near from now

where pain and fear possess no place

their greedy place at your table outstayed

uninvited guests

came into your life, wrecking balls

fathomless of the despair they could put

as wicked times will have us ensnared

forgetful of former peace

hostages to the ease with which

sickness makes strangers of us.

Who inhabits this body of pain?

when did normalcy include such horror?

what lurks behind the shell of our discontent?

masking the urge to cry out with futile restraint

who do we hide our agonies from? Or is it that obscene need to appear

while and strong? While behind public doors we collapse in mock

no succor for the actor of their own wellness

Give me hope we clamoring souls sing in our flung prayer and rage

let me believe

believe again

find the keys, the healer, the drug, the end of

this

or I think I wish

I never existed

a thought I’ve had many times before

though none are without regret

some of us excel at impoverished thought.

I do not remember the me before

mornings of hurt, nights of pain

was she a creature capable of delight and desire?

did I feel alive?

Sometimes it’s hard to know

the fall is long down rabbit hole

make me

myself again

whomever she was

a better dream

than this

slow living just above not existing

hardly realized

quiet in accepted

thirst

for another grasp at hope

for any

recourse

where fear and pain

possess no place

14 YEAR OLD BOYS AREN’T THE GOSPEL – For Mental Health Awareness Week

Mental Health Awareness Week (this year the focus is body image)

14 YEAR OLD BOYS AREN’T THE GOSPEL

The year we held a Madonna competition I was flat chested
Boys said; Asprins on an ironing board
Girls said; You can’t dance with us
The exclusion felt … hot pink and slimy
I wore black elastic bands on my wrists to hide the snub

The year he asked me out because Zoe had said no
He said; Zoe is taller than you, you look quite SQUAT
He said; Zoe has tanned skin, why do you always BURN
He said; You give good head but it’s a shame you aren’t Zoe
I threw up in the bathroom to hide the shame

The year my best friend taught me how to binge and purge
She said; You’ll soon have a waist as small as mine
She said; When you feel sad put your fingers down your throat
She said; Skinny is the new superpower for girls
I quit dance class because I didn’t have the energy anymore

The year I tried to stop giving a shit
I said; Fuck it. I’m me. I can’t be anything else I WAS BORN THIS WAY
I said; I may never love myself enough but I’m damn well not going to destroy me
I said; Hate the image in the mirror, at least love the inside
I said; Someone will always want to put you down, don’t give them the power

The next year I still didn’t wear bathing suits, I still walked with my shoulders rounded
But I didn’t have raw knuckles and I didn’t survive on the opinion of 14 year old boys

A decade later at an art show we meet again, he’s going bald
He said; You look fantastic. I don’t remember why we broke up
He said; I always thought you were the hottest girl in school
He said; Want to fool around behind this Van Gough?
I quit listening and wished I’d learned not to at 14.
What you think is important then, usually is not.
Try to love who you are. Perfect is an illusion and 14 year old boys aren’t the gospel. We don’t all have to be Zoe.

I AM A TOTEM OF MY OWN BRANDING

pexels-photo-573298

I’ve been told I’m a chronic pain in the ass

after all, it’s easy to destroy a child in an adult’s body

with past-tense words

and now in the time I’m meant to be at my strongest

chronic has visited me and stayed a long while

on a good day I think; This will not be forever

but temporary has always been a long way off

the doctors love to tell us; It’s incurable, get used to

living like this, hostage to something unknown and strange

as if that’s a normal thing to do

but if enough of us live with chronic illness, it will become normal

and that is not a good thing.

Before this …

I took chances, because you think

I’m invulnerable, sometimes I can fly

health, you take for granted

though I truly convinced myself, I had checked the boxes

right weight, exercise, organic, vegetables, no pre-made meals

(well, this is what I told my doctor, sometimes a couch counts as exercise, right?)

if I ate a slice of pizza, it was a treat with friends

though I like root beer, I never drank it

maybe making up for cigarettes, smoked in my twenties

but I thought if I keep jogging, if I keep living healthily

I won’t be felled, because you ARE WHAT YOU EAT.

A few months before I got sick, I recall

feeling strong, climbing through snow drifts and laughing

boundless energy, working long hours, feeling intensely alive

people saying; you look so healthy, your skin is radiant!

Those are not things people say now, unless

I apply a lot of make-up, to camouflage my fraying edges

instead it is me, who declines invitations

I am sorry I cannot go with you to eat, even though eating out

is the number one leisure activity where I live

because my stomach is ruined and I cannot digest much

I live plain and simple (and boring), like a nun and I am numbed

to the pleasures of wine and sauces and garlic, spices and oils

not recognizing my bloated mid section in the mirror

from the girl who once was told

she had an hour-glass figure, with a wasp waist

could run for buses and catch them in three-inch heals.

I know everyone has their burden

but when you get sick and it doesn’t go away

life becomes a series of scolds and let downs

you find out who really loves you and who harbored an anger

used the opportunity of your downfall, to insert a knife

it is the cowards way of course, but freedom of sorts

for none of us need, that kind of negativity in our lives

there is a blessing in disguise, when you find your tribe

the people who care and know the real you

not wanting to tear you apart, because it’s easy to kick you when you’re down.

But blessings do not salvage, the hours you spend sickening

remembering how you were rarely felled in past years

strong of body, sound of mind, juicing and walking ten miles

everything is turned upside down, inside out when you find

a burnt fuse, at the end of your outstretched arm.

There is no cure, there is no future

when you live, in a jar for the jarring

for a long while, I blamed myself

maybe in part, because someone I trusted told me;

“It is your fault, you must have somehow caused it”

easy to throw stones, at glass houses

I was a glass house, with many windows

break one and I cannot repair it

the wind will come in and make of my space

chaos

the sun will come in and make of my peace

madness.

Those things that brought me joy, were gone

instead, the regiment of illness strode in and stood firm

you cannot feel passion, when you are sick

ageing in hours, rather than decades, trying to stay above water

it is hard to feel hope

you rely upon the kindness of others

which is hard to do, if you are not used to it

and when they lift you to the light, you promise

if I can recover, I will try ever so hard to never be ungrateful

but with every mercy, is a dark day in hell

those days take it all out of you, like a scourge

the sickening can age you, more than a nightmare

one minute you recognize yourself, the next you are unknown

vulnerability, of not being able to take care of yourself

the expense and fear

your world crumbling around you.

These are things you get used to and when you have fallen

to the bottom and can no longer get up

that is where the truth lies

that is where you can find

your true self and the end of fear.

They tried to tell you that you were insane

making it up, all in your head, something’s wrong with that

crazy lady who pounds her fluttering chest in vain

tries to catch the eyes of doctors, with beseeching side-glance

SEE ME! HEAL ME! SAVE ME! WHAT IS WRONG?

WHAT HAS HAPPENED TO ME? WHY DID I WAKE UP ONE DAY

SICK AND IT NEVER WENT AWAY?

And yes ! Something was wrong with me and still is

not my doing, not my causing, not my dreaming

despite you saying; You bothered us, when you called and were upset

no mercy, no mercy, no mercy, that is not love.

Helped me let go. Don’t hold on to negativity.

Oh doctor, get it outt!

and if you can’t, then give me the key, the saw, the pick

so I may survive myself and somehow continue on.

Am I to label myself chronically ill, or in recovery?

Surviving or dying or all of the above?

how do you define what doesn’t go and doesn’t kill?

Spending all your money on alternative treatments that

don’t even know what they pretend to cure

how do you describe one good day, followed by one in hell?

others won’t understand, because they are well

what I would give to return, to that safe water place

but even if I did, I would not be the same

you live years with a loaded gun to your head, everything changes.

I am not me anymore

I cannot see out of my left eye

I cannot lift heavy things, with my weak foreign arms

I can walk ten miles and not break a sweat despite this and be told

by friends and foes; OH YOU DON’T LOOK SICK

I am an apparent scar of contradictions and pain

I hurt every day, my stomach feels like

something is eating me from the inside out

it convulses and retorts and shouts

“you will never win, you will bathe in pain the rest of your life”

but I will still try

because I don’t know how to give in to enemies, I cannot see

and even as I cannot eat normal food

one day I am good, the next I am dying green

even as nausea, has become my constant companion

and bottles of pills and vitamins rattle in my pit

even as I fight to be gracious in the eye of the storm

and those I thought would stand by me, try to drown me instead

I know there is still a moment

I am well enough to remember who I am

never to find that peace of mind again

but maybe recover to another state of being.

I wake in the night covered in sweat and the disinterested doctor says

“get used to not sleeping, get used to all of this, it is what you must suffer and many others do”

as if it is normal to be like this, as if it is something we should not mention

I will never think it is normal to be hijacked!

I jog into the forest, because it reminds me I am still living, my feet still work

I fight with wilted hands, when they tell me there is no hope

that I should just consign my former glories to a picture album and put

my feet up for a fifty year occupation of sofas and couches and day time oblivion

because THE POWER OF ME can overcome the power of negativity and this I believe

as I see in the mirror a girl who doubts but stares back unblinking.

I have lost my will at times

I do not write as much,  I have less energy

the last time I had a romantic dinner was in a dream and I

sleep with a heating pad on my stomach every night instead of a lover

but I still pay my own way and my own bills

I have a pride in pushing back against status quo

DEFYING the prescription of HOPELESSNESS.

they tell me go on disability. Just give up

I am not going anywhere, but to the finish line

I learned

by losing everything and having nothing but

the sheer will and dim light of my existence

I can do this without those I thought I had in my corner

because I am stronger than I realized

and this grieves me, as well as reassures me

but I come from a long line of stoic, strong women

and it seems sicker than I am, that we should hate each other

because life, surely we have found out, is fragile

and love is all that makes sense

but even without love I will continue and not

let the flame go out.

Sometimes I ask myself why?

why not just give in? Take the knife, swallow the pill

to oblivion or some non-sign-posted destination

I don’t have children to protect

it would be easy to slip out of this world and its sword edge of pain

but somehow I feel I should protect myself

maybe because others did not

maybe because you defend yourself in the end

when everything else is fallen and you are still

somehow, standing.

I am weak and tired and prematurely aged into

a hunched over version of myself

hair greying with shock, skin is sloughing off and my

body is tied to the rhythm of a sickness that purges and gluts

I was told this kind of disorder was permanent

but nothing I have found, is ever guaranteed

so I have chosen to ignore this and believe

we can all fight and overcome

anything

even a death sentence

even betrayal

even silence

and when we know this

when we are strong for our weakness

realize our tears are just water and salt

burning the frustration of our visiting menace

then, we know nothing can hurt us, more than it already has

and we are free to dream

of a future without so much pain

where death stands to the side and lets us regain

some of our former dignity

for there is nothing dignified in sickness

and you don’t know me when you said I was glamorous

that is the last thing I am

I am beautiful for my courage

beautiful for my fear

beautiful for my survival

beautiful for my defeat

beautiful for my mercy of those who have no mercy for me.

And life is a wax and a wane

life is a torture and a friend

I am the totem of my own branding

I may live in a time where nobody else of my kith and kin remain

and once that would have filled me with pain

now I know you cannot rely upon

labels of safety

it is only by looking into the hearts of those

who stayed by your side when the storm hit

even if it is one, even if it is naught

you remain behind

the tempest cannot roar forever

eventually even agony ceases.

I wish now, to be everything you were not

to love others unconditionally

care for those who are in need

be the change I want to see

I want to find myself

at the end of all of this

I want to tell you, sickness

you do not win

you are just a miasma

I am a spirit with a soul

I will endure you

the me, of me, will remain

long after, to remember her worth.

Before this all began and through it, learned

only the fierce remain

only those willing to FEEL

and not those who run from feeling

with the ease of the damned.

Turkish delight

alexander-yakovlev-dancers-everythingwithatwist-17I didn’t have time to un-knot my hair or brush it down

it used to hang to my thighs and I had to cut it

when the sickness came and I was green with bile

all those years I held my hair as my calling card

for I had nothing else

so when you see me this way you know

I’m not pretending anything anymore, this is me

this is the girl you once loved

I remember thinking I was old back then

what a laugh

and time is a cordial of horrors and trickery

what we need to know is, it’s all in the eye of the beholder

so if I feel tired and beat up now, remember, I tell myself

in ten years I will rue the day I forgot to dance

I dance now

bare footed with dirty soles

to the memories of

our liquid union

and planes do not fall out of the sky

the day is quiet

despite the tornado in my mind

I would let you in and not let you out

shut inside me like a favorite book

chapter marked by the sinew of my want

clasp you tightly with my muscular need to belong

within your kaleidoscope, a star in your universe

behind these accoutrements and forbids  I burn electric

you never get too old for longing

I want you to take me in your arms

crush me into sugared pieces

eat each one and never spit me out

I want to become you and stay

inside your candied warmth

where amber things are less real

set in time to wait out storm

but you care about them more

as part of your compass, to set your destination

I was born of your desire

I am now without wing

soon I will fade into pieces

and nobody will pick them up to eat