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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Thrift Store Special

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If I hung in a storefront

I’d have no label

It was torn off in the wash

The store owner lied

Trying to cover a great crime

I’m not gentle cycle, nor wash below 30c

I don’t fluff up well in dryer

Or need ironing on low heat

I’m a thrift store special

Good for a gander, then better cast off

Stuffed in the back of your closet

Forgotten until you move house

When you hold me to the light

Exclaiming; where did I buy this?

A little wistful, a little disgust

Just like a spare thread can run

Through any knit and mar its form

I was shrunk on hot and stretched in cold

Long before you grabbed me out of the lucky dip bin

It was the elongation of my experience

Like wool is malformed turning huge in water

Expanding and reducing, I am the sheared sheep who took off

When the shepherd came to my turn

I never backed down, nor avoided spitting in their eye

My fur smells of energy and emptiness and freedom and neglect

You wear me when you want attention

Or to be someone you’re not

And I’m sequins gathered in a pearls bosom

The knotted mohair and impossibly soft angora

But most of all, I’m the time you left your possessions behind

And rode in the dark without lights

Imagining your bicycle a horse and you …

with your dress catching in the spokes covered in oil

You just wanted him to catch fire on your edges

Sounding the cavorting need you had to bloom beneath

Then you were a water-lily and even years later

You are reminded each time a candle is lit, the smell of wax

How he burned your fingers with his inelegant desire

And you opened like origami to his bewitchment

Then you were a dragonfly, passing through fountain

If I hung in a storefront

I’d have no label

But you’d purchase me all the same

Over again

Smiling

At the memory of

Something you couldn’t quite grasp