I AM A TOTEM OF MY OWN BRANDING

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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.

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When a lover replaces the ghost

je-tu-il-elle-1976-007-naked-women-lying-on-bedYou always said I was so beautiful

in your arms I let myself believe

in many things

now I do not have those assurances

it’s like being born again and starting over

i want to tell you, because I think you’d understand

whom else would I ever share this with?

how difficult it is for your girl

to no longer be that person

I have to grow up, grow beyond you

I’ve been living in your rule book and my own intoxication

maybe it’s like a recovering alcoholic

we took our share of hard knocks

I’m going out on my own and it scares me

I hear your voice in my head saying I can do it

find myself believing I can

on the far side of pain and loss, meeting myself again

leaving the sick room and its soft slow death

closing the door on you when you passed from me

there was only the outline left in cooling sheets

someone unrecognizable in your place

an effigy, an imitation with nothing of your gentle ways

I want to tell you I found someone

a girl who leaves me breathless, with eyes like french glass

but there’s things we can’t speak of

for some wounds, carry their own salt

we were the best of friends by the end

still, neither of us needs to know

when a lover replaces the ghost

I still feel so alone since you died

thinking I can hear your answers

on the breath of each nighttime wind

maybe I imagined you all this time

slowly forgetting what it felt like to be whole

and silence has always been my music

now I lay you down here, in the quiet dark earth

to rest, become a memory without strength

for we who continue to live must

shed the weight of sorrow

rising beyond what we thought possible

run forward when we are beckoned

until we can

run no longer

The deepest cut

an-apple-rotten-on-the-inside

It doesn’t take much to knock a bruised fruit to the floor

watch it split apart like rotted glass, shards of damp skin in slow motion

try as I might, I AM that bruised fruit

try as I might, I cannot seem to recover myself back to where

once took for granted, the feeling of wellness

it doesn’t help when someone you loved abandons you

in the middle of your darkest hour

things like that aren’t supposed to happen

people who swear allegiance and loyalty aren’t meant to

be the ones leaving your side

such is the hour and fickle fan of illnesses devour

at least I know I’d never treat someone, that poorly

despite this and because of it, healing is slower

though I suspect anything less than fire would be

I didn’t know these things beforehand

the un-annointed do not possess future perspective

to see how illness strips your childish faith, cleaves you

bare and gasping

where family didn’t need to see me, even as I spent weeks in hospitals

it cut me to the quick, but it wasn’t the first or the last

maybe preparing the groundwork for your deepest cut

they say you get used to it in time

I never have

just as I never have truly understood the cruelty within some, who profess so hard to love

now, I am a changed person

I cannot make plans like I used to, thwarted by my body, haunted by ghosts

my illness is like a cobra, she stays quietly in the leaves

rearing up when I least expect or when I want most to escape

her possession of me, the way she knows how to tickle fear

with just enough venom until I am on my knees

I am sure some would say, this is therefore; psychosomatic

that it what they tell all women of hysterical turn

I saw in your eyes when I told the horror; your own disbelief

until doctors produced the proof, you still wondered

it became apparent to me, just like with sexual assault

being believed is paramount to recovery

alongside having faith in ourselves

I did not do a good job of the latter

finding myself more alone than when I started

and I thought I started pretty alone

I know I am a survivor and I was not destroyed

yet it feels like I was

when I look inside myself and find

so little left, a house without windows

it was only because of you, I kept trying

I told you that, I said, you were holding me up

when you let go

I fell to a place I did not know existed

I wanted to ask; Couldn’t you have just waited

long enough to see me through the worst?

but you wait for nothing except your own need

I had to find a way to stand even as everything crumbled around me

which is the biggest test I ever had and I failed it

I failed it again and again

walking through the lullaby of desiring to die for so many reasons

not least, the never-ending dance with sickness and pain

but somehow I did not die, I turned instead to stone

when people say I am strong now and ask; How did you get through it?

I don’t tell them; I am not through it

I still lurch and shake in the throes of unnamed demons and at night

I feel like an arythmic god has taken me and is spinning me

on high-speed like all my parts are made of jello

I want to ask that god; what is it you are trying to shake loose?

surely you know by now there is no more fruit left

not even the rotten kind

that fell and split and sunk into earth, a long, long time ago

it is only me remaining now; leafless, without sturdy branches

I cannot rely upon myself, I cannot rely upon promises

no longer a young, untouched tree with green shoots

I am damaged, broken and hobbled, by this specter and the unknown

as much as by those I knew and trusted

asking why to the imploring void; why are we stricken down?

to what do I owe my continuing? Even as it is, insubstantial

can they see in my eyes, when I pretend, I am trying not to gag?

my appetite spirited away by the scourge and never returned

I would die of hunger and not know it

were it not for some strange determination

I don’t know where that comes from

but as I stand, it must be a place within me

does not give up, as she did not, all those years ago when

the flames licked the top of my house and burned, everything I knew to cinder

I am not like the rest of the world; stronger for my poison

nor am I able to disguise my scars

if I were asked what recommended me; I could not answer

I would probably open my mouth and howl

because you can reinvent yourself, a million times it seems

I am just one incarnation, coming apart at badly mended edges

you, who are able to vault life in gentle sprint, must mock

I am after all, just a fallen fruit, lasting as long as she can

in imperfect, bruised skin

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

When we are supposed to laugh

She runs her hands along the grain, movement a stain

hearing rust loosen and turn to red and green exquisitely

grief lies her head slower in time

perhaps given enough, doors opening to learn

why she holds her hand over her mouth so long

as her sisters, once younger and afraid, nesting behind her skirts

flew from their hinged cages, they had less fear than she

though in truth it is not fear that stays her hand

but a lament she was born with, hearing in her crib, the press of tragedy

Like some will carry lanterns, light darkest paths, for others to step towards

as her sisters learn to speak new language and grow like hungry ivy

she feels the pit of her stomach open and a seedling sprout from within

it hurts so much to grow internally, like a miscarriage refusing to leave

she holds on to every moment as thick rope will choke, if you let it

she must drive it out of her

but how to divorce the parts necessary for survival? Retain a whole?

from those who seek to devour

as light will find a way into a closed off room

distinction slowly lost, leaving shadows to dance on clean tile

the smell of another day, unsure, it is about all time before, come to now

see her lying still, as untouched water in glassy gloom

how she wished to follow their burning quilled footsteps

higher into turquoise forest where even now, laughter can be heard

below surface where nothing stirs, but slow tread of one who is neither alive nor perished

but fragment awaiting its missing part

she thought so often it was you, and then her empty hands

demonstrate

the futility of wishing

for we are free only when, we claim nothing but the words growing in our gut

urging us to cry when we are supposed to laugh

The road

At first the road seemed seemed impassable

Such a long distance with no sighted end

90 pounds was

A hollow eyed effigy, struggling not to drown

100 pounds was

A sickened mouth, forcing itself to swallow and chew

110 pounds was

A hunger to gain lost appetite, swill of food laying heavy with each urged step

120 pounds growing muscle

Punching the fuck out of weakness and despair

125 the goal, she fought, her joints bloody and plastered together

When she arrived, her body, her mind, her vibrating soul, she stood and cried

At the distance she’d travelled, cracked knuckles captured in dried clay

Stretching like bad memories, bleached by unrelenting sun

In spite of this, still, a flower is able to bloom

Endure

Along with recovery

I had wished

For one neighbor’s heart to heal, as he tried to mend a leak

Another, to survive the scouge of sudden cancer

For the little bird to find her red box

Fill it with branches and lay her eggs

Nestled blue against the hope of frail humans

For rebirth and warmer days

When the winds were the only thing to die

And maybe the scold in a voice, twisting the knife

Yes, wish it away, along with traces of fear

You have survived the winter, you are still here

The same curled toes and cold fingers, clinging on

If you don’t die, you live, and that’s what you find

As false friends fall and new are born

As spring gathers her skirts and grass turns from brown to hopeful green

As your neighbor touches your hand and his eyes speak

Of the simple gratitude of caring

You didn’t receive it where you thought it would be

There are branches higher up than you can see

Maybe the little bird right now is looking for her nesting

And just like you, she seeks the comfort of knowing

If you make your home warm and secure

They can huff and puff

But you will

Endure