Des souvenirs fantômes

story behind the photo

I saw this photo today, and it reminded me. One year ago.

You can look into the eyes of an old photo and almost not recognize the person staring back at you. Is it because that person was preoccupied, you weren’t yourself? Or time has a strange hypnotic way of distancing yourself from memories that may even be recent.

In my case a year ago I went abroad for the first time since I’d become sick. It was a test of sorts. I figured, if I could survive the travel, and the reminder that I had become first sick whilst traveling in 2017, I could become stronger, and endure more things, prove to myself I was on the road to recovery.

The other reason I went abroad was I was running away from the memories. Everywhere I looked, memories like unwanted confetti seemed to harness me to the horror of being sick, of all that it entailed. I often asked friends who were sick, did you suffer from PTSD or some type of horror post-illness? Did you keep returning to the memories without wanting to, as if they would not let you go? Des souvenirs fantômes.

When I was sick I recall being in hospital when SA had very bad weather, and a hurricane was predicted. I was alone in my room, the glass windows were shaking violently, and I was throwing up almost in time to the shuddering. I recall hoping the hurricane would hit my room and spirit me into the ether, it wasn’t an idle wish either, sometimes when things are very bad you really do wish for it to just stop.

Since those days, I have been reminded of health again. There are entire weeks I feel well and I never thought that would happen again. I was told by over 4 doctors I would be permanently sick, never recover, have to go on disability, never work again, and probably need a pace maker in my stomach. I would also never eat solids again and may need feeding by tube. Everywhere I looked, the prognosis was the same, dire, hopeless, terrifying.

If it wasn’t for a handful of my closest friends, I honestly know I would not be here today. I’m not strong enough. I can’t do it alone. Some can, and to them I say, you are incredible. But I am not that strong. I need people to justify carrying on. I need to know I matter. I need to have something aside myself to fight for. Without children, or family here in America it was hard. My family back home were pretty hands-off and my mom eventually decided it was a good time to call it quits altogether and leave my life. I’ve always been told, you are tested the most when you’re at your weakest and this is true, I would not have expected my mom to walk out of my life when I needed her the most, but that’s what she did and I had to learn to accept it.

The other day I had this horrible feeling something had happened to her, but I have no way to contact her or find out if she is okay. Many times I find myself breaking down and crying because I miss her, although I have to remind myself, why would I miss someone who could kick me when I was already down? The reason I believe is due to the abuse from my grandfather. When he abused first my mom and then myself, and my cousins, he ruined or tried to ruin all of us.

The saddest part is he did succeed in ruining my mom and I, because she grew to resent me because of the trauma she’d experienced and when I worked on We Will Not Be Silenced, I wrote a poem about the legacy of trauma and how it is generational and affects so much more than just one person. Unfortunately that poem was my mom’s reason for deciding to cut me out of her life. She had not been in my life very much since she left when I was six but I truly thought we would get closer as we got older and I did not anticipate her quitting talking to me.

If you have ever been sick you will know, you don’t have the energies to fight someone when you’re sick and so I didn’t really fight to keep her, I only told her, I don’t want this, I want you to stay, I love you, I didn’t mean anything bad by writing that poem, surely you know that. Surely you can forgive me. She did not forgive me. And now I know, she never will, because prior to that she had quit talking to me for seven years and she mentioned this time around, she’d never really forgiven me for that either, so it’s clear she will never speak to me again.

Sometimes I try really hard to think of what it was I ‘did’ seven years ago. I know she has a long list, some of the things are justified in terms of existing, I am not perfect, I probably am a disappointment, I am not always congruent or do my best, but … je ne suis pas une personne maléfique, an awful child to have had? No, and no matter what my ‘crimes,’ they are minor in comparison to so many people I know, and yet their parents would never think of walking out of their lives. I never did Heroin, I never stole, I never asked for money, I didn’t sleep with her husband, I did not skin and gut the cat or do Meth in her greenhouse.

It is quite something when a parent leaves you willingly and wants nothing to do with you. It is perhaps the most invalidating feeling I have ever had. On top of the illness it nearly destroyed me. I thought about dying for days. Je voulais mourir. I wanted to have never been born. I couldn’t write, and since she left, I have been fairly unable to write consistently because it took something from me and I suppose I let it.

But as you know, if you have experienced great pain or sickness, you have to live through it or die – those are your only two choices. I chose to survive this time. I didn’t feel I had much to live for, I felt terribly lonely. Terribly afraid. But I also didn’t want something I thought was grossly unfair, to be the reason for my demise. I had fought too hard and for too long for that.

Fortunately I had finally found a doctor who correctly diagnosed me and it turned out all the other doctors were wrong, and what I had, was potentially curable. So now, a year later, or more, I am doing better. I have awful days when I feel like I am ridiculously sick and I cannot function, and that frightens me because I have only myself to depend on, but other times I feel relatively normal. I have yet to feel exactly as well as I did before all of this began, and I also know some of it is psychosomatic by this point, you throw up every day for a year, it’s hard to completely get rid of nausea or a hatred of eating. It’s a bit like having an eating disorder without the reason.

What all of this has taught me is; True friends are rare but they exist if you are lucky. Love is the only reason to carry on. Do unto others as you would have them do unto you is probably the truest thing ever said. Avoir pitié! Have mercy. Because those who don’t, well they may succeed in hurting others, really hurting them, but is that something to ever be proud of?

I lost a lot. Financially. Physically. Emotionally. But I gained a knowledge that if you can get through the worst of it, and see the other side, you can look back at yourself and realize, you made it. So I look at this photo. I realize when it was taken I did not feel well. I was sitting on a corner café wishing I could have an appetite and wishing I would want to eat a tarte and drink a coffee, but instead feeling that horrible pit of stomach sickness that seems to permeate some days. I remember it was a cold day and I thought that day of all the days I’d sat at that exact coffee shop in Europe in that exact street and watched people walk around, and how so much had changed and yet, how so much never changes.

It is weird to sit in the exact place you know you sat twenty years previously. To imagine what you felt and thought twenty years before. To see yourself now, older, wiser (?), to watch the world change, to see all the differences and all the similarities all at once. I remember a certain theatre around the corner was playing something I had wanted to see and I hadn’t had the money to be able to go. I remember my mom coming into town and taking me to a restaurant préféré and our eating until we were stuffed and me drinking wine even though I was underage. I remember feeling sad when I left that we always went our separate ways, and how I had learned at an early age to say goodbye, many, many times and to accept somehow, that division of parents, of homes, of countries, of identities.

I remember my mother was so beautiful, she always had so much grace, so slim and petite and always immaculately dressed and I would try so hard when I met her not to look like a farmers daughter with my messy hair and my one good shirt and one pair of jeans and usually some old scuffed boots. In myself now, I carry around the pictures of her, this unassailable, untouchable, much loved woman, whom I have always on one form or another, chased, wished for, sought. And my father, cycling city streets, messy like me, si beau despite it, able to turn on the charm in a way few could, and how he would zip in and out of slow taxis and cars and I would see him streaking down the road and I would walk for the metro and all the while, feel this divide, two pieces of the puzzle in opposite directions, myself in the middle.

People say, you never get over things, you should get over things, the way to get over things is to get on with things. But as busy as I can be, I never forget. I am always still that girl sitting on the corner, her coffee now cold, her fingers blue with Winter chill, wishing someone would be running towards me rather than going away from me. What we are is who we become, our identities formed by the varied experiences we have or do not have. What if my mother had really cherished me? Wanted me? Needed me? How different I would be now, there is no denying it. There is no whitewashing the shifts and influences that swirl about us, at any given moment, causing us to act out and act upon those influences, comme des cordes de marionnettes.

It is not to say we are not self-determining. I am after all, here and I am not there, I am after all alive despite it all and I am after all not destroyed by her loss. Sometimes you can think you will be and when you find yourself alive despite everything it reminds you, very little truly destroys us, it just shakes us to the core and we change, in myriad ways, taking our baggage and our hurt lockers with us, into new things, with new people, who may never understand why we are who we are, what we are.

I always wore hats. It wasn’t because I hate my forehead although I do. It was because my grandmother said; “chapeaux donnent de la couleur à votre visage.” And I have a very wan, pale, longish face. So hats helped to give me a pinch to the cheeks I badly needed. My mom with her dark eyes and her dark hair never needed such accoutrements she was a natural beauty, with a finer brain than I will ever possess. When I told her I wanted to start writing she told me I was making a mistake because I didn’t have what it took and she was right about that and so many others things but maybe for the wrong reasons. And even so, we do what we do because we have to do it, and it is sometimes better to have done than to have only thought about and never stepped out and said; I’m going to do this anyway.

Since and still – I do it anyway. I feel the fear and do it anyway. Sometimes I fail. Often I do not succeed. I wonder sometimes if I am still at that corner, watching the varied timelines of myself, my mother, my father, my entire famille d’origine, walking these streets, living then, and now, up and down, sideways and inside, climbing the stairs of history, where once a good French restaurant existed and the young and beautiful went, and my mother told me stories of whom she saw there and what they did and we would all belly laugh and those days were good, because we were not apart.

One day I will receive a phone call from someone and they will tell me I will never see my mother rounding the corner again. She is limber still and walks like a teenager, light bodied, with hips that are not stiff. I wonder if I will walk like her at her age. I wonder if I will have anyone left who shares my blood or cares what happens to me when I am her age. I find myself obsessing over those moments, lost and gained, the blouse she wore with green and red, the puff sleeves and how I try to imitate and never quite … succeed. I have run after my mother since I was a little girl, calling her home just as I wished her well in her flight. I both wanted her happiness even if it meant not with me, and I longed for her to need me, to love me, to want me, this thirst that caused me to chase and feel shame for so many years, anyone who might replace or repeat, the pattern.

I don’t chase anyone anymore. I still wear hats. I still think of the dance classes and leaving them all sweaty and hot, how the city could be empty in those days, and you could walk into a little magasin de pain and stuff your face with hot dough. How I didn’t care about anything then, except this pretty belief all would work out and life would be beautiful. How naïve perhaps, but what happy memories, how lightweight they were compared to the darkness. I remember really believing I could dance for a living, I remember really believing I would find someone who would love me forever. I remember joking that I was not very good at doing things half-way and I was far too intense for just a short affaire d’été.

My love for my mother will always be with me. I am still somewhere in time sitting at the café, proving to myself I can recover from an illness, meet the love of my life, eat bread without a care in the world, return to a time when everything was unspoiled. I am still there watching the theatre close down and become a block of flats. I am still sitting there watching my old school friends walk their kids down the cobbled roads, telling them stories of when mommy and daddy were young. I am still a 16 year old running down the street in the night, the sound of music in my ears, trailing feather scarves between my best friend and I. All the time in the world ahead.

When do you say you are ‘better?’ or you are ‘recovered?’ when there are still days of lurching at sea? When do you stop giving thanks? How did you walk away when I was drowning and think I was deserving of that kind of betrayal? When does healing and recovery mean you have to get on with the rest of your life? Which means, getting up from the table, dusting off your coat, applying lip balm, pulling your hat to the side, shaking off your weariness and setting off into the distance.

Neither of us live in that city any longer, we are both tourists to the past. When you visit, you stay in the best hotels and shield yourself from the arms of the past in keeping preoccupied. When I come home, I walk with my arms open, down all the roads that carried all our blood and all our tears. I want to remember. I want never to forget, it’s my history, it’s who I am even as I wish I were not. There is beauty even in pain. Even in the remembering of you loving me briefly, of pleasing you once, of your deep laugh and the way we’d grin in collusion. Don’t you know those are the greatest moments I have? Why would I give them up? For an abatement of pain? I’d rather feel pain than be staring into nothing. il me détruit. C’est moi.

Mama. What are you doing today? Do you remember us laughing as we walked arm in arm back from the restaurant, high on life? And nothing between us? Do you remember when I brought you flowers every time I would visit, even as a little girl? Irises were your favorite. We liked to watch them come through at first thaw. Do you ever wonder what I’m doing? Where I am? Do you ever think you see out of the corner of your eye, a girl sitting alone at a café table, drinking chocolat chaud, dunking pain de massepain? I feel she would still, despite herself, get up and go to you if you ever called, if you ever waved your hand in her direction?

I was once told I love too much. I thought it was the nicest thing I’d ever been told.

Todays hat is burgundy. I gave up cigarettes and red wine many years ago. Sometimes I can taste her perfume, the one she wore when I was a child, as if it had briefly inhabited a moment, and then, just as quickly, retreated.

 

Burning without fire — @ hijacked amygdala

Last night I scalded myself Mama and as the boiling water ran down my arm I saw you through the pain and you were smiling and everything was wrong how you are alive and yet gone, how you exist and yet don’t, how I was never right and somehow always mistaken If I don’t come […]

via Burning without fire — hijacked amygdala

Two decades later & dye still runs

Backstage-Paris-Fashion-Week-1991-wearing-jeans-whiteAcid-dye denim might be

bad-luck or I

simply too old for

bare legs and

shocking rinses

(who the hell buys Manic Panic Vampire Red

seeks to re-cultivate original sin

desperate in disjointed

camouflage & need to impress

someone who is not watching?)

However, the real

surprise lay in

realizing I could shed

as many tears as a teen

who would not blink

at acid-dye-denim

or remember

when high-waisted was

in fashion

the first time around

when heartbreak felt

much, much

more hopeful

even if red dye

be it 1999 or 2019

invariably ran

transforming

tears

pink

Pushing away

woman-teepee-pinterest

one day in the future they will come up with little pills and little bottles

to ‘cure’ this illness when it is not

even tangible

but something made of fibers

unseen to the eye

that set you off galloping

one day you sit quiet and rested in the sun

and just a little thing can start it all

the discrepancy of something said

the feeling of being on the outside looking in

a lie you cannot call someone out for

because they have more lies than you’ll ever

have room for

so you turn

without even thinking

second nature

and run in the opposite direction

shut down close off

never give them a second thought

it is the protection of the flower

who must open daily

and close when it is dark

she can be so sudden in her dismissal

it’s what she knows best of all

that feeling of nothing

that familiarity of naught

and if it happens they’ll eventually

call it an illness

but it’s no more sick than

stones who adapt to water

by becoming

heavier

to move

if I happen to

switch off and stop

I won’t be coming back

and it’s only the ones who

claim the deepest of my heart

whom I cannot stand to reject

who stay with me til the end

burrowed in my being

where few can ever find

entrance.

 

What was it about you?

let yourself right away in

demolished every rule, every tendency I had

an exception we bow asunder to

feathers gleaming against cold sunlight

 

The unlit room

pexels-photo-241705 - Copy

like a surveyor of tea leaves or coffee grains

you have only seen the bad in me

mama, there is more than that

so forgive me if I hope, you don’t read this

though as I write in the unlit room

with unfurling gloom of coming dark

shadows whisk past in fast motion

like hunting birds intent on victim

pictures of another life

when I close my eyes I hear your voice

imagine home, it includes you

exile is a word I find hard

thinking we’d find a way all these years

my child heart foolishness

we try to repair the mauled favorite toy

we try to reclaim the torn moment

but time moves on and people

betray each other as easily

as reading congealed tea leaves

so read them, tell me my fate

I am sure you think you know

and as the words come pouring out

each one designed for maximum hurt

I will grow away from you like a plant

facing determined shadow will

strain toward the purity of light

I didn’t want this

it wasn’t my wish, the choice was removed

but I am, contrary to your belief

not dying of my own poison

the illness within me

will be healed

and that part that blames me for everything

lying in you, a furious envelope

that tells me I am responsible for my suffering

will meet

the karma we all must face

when cruelty is reflected back at us

I had hoped so much all these long years

for your mercy and your presence

but as they told me

you cannot long for something you never had

cannot make someone feel what they do not feel

you asked me why I called today

I knew you would lash out, I knew it would hurt

and maybe like a penitent I felt

saying goodbye and letting you know

I love you, was worth the scald

because I had a dream

it was a dream I lived a long and healthy life

it wasn’t with you and you were not there

somehow I still smiled and carried on

and when I woke I wanted to ask you

how could I ever live without you?

when you brought me into this world

I know your voice, as I know myself

and I have loved you more than anyone

but I already hear the answer

burning the silence of my stare like a

forgotten match wicking itself to fabric

devouring oxygen and matter like

a scream will penetrate quiet night

I know, in the slick loathe of your tone

the way you know just how to plunge the knife

you don’t need me you say, you never did

I am an unwanted thing, better disguarded

let loose to tumble into the past, better never born

and though I may not know it now

you set me free as I forgive the ache

letting go of all those years of chasing

those folded sorrowful times of indifference

to claim what we should all have

the knowledge of real love

instead of being reminded of

someone who never thought you worthy or special

who happened to give birth

with the anger of a condemned prisoner

Oh and I wish

I could go back in time and undo

that bloody hour

where you never had

to endure the pain of bringing me into the world

for surely

I would

that is the point of unconditional love

you give even when it hurts

and I would dissolve me to save you

but it is too late for that

and for wishing I had a daughter

I could pour my heart into

but I will find something else

maybe out there in the wild where

people do not carve out pain with

the sharp edges of their own

and when I told you I would always love you

I meant it

even as you push me away one last and final time

which I accept

with the gait of one who knows

she has more life ahead

in the bowers of empty space

among the fir trees growing like prayer

toward the glassy reflecting heavens

it will not always be so sad

it will not always be so sad

 

Only child

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I’m sitting in a linoleum room with ghosts, specters and occasional stranger

a girl with long legs like a foal, is pulling elastic pink lines of gum from her full mouth

and snapping them back, loudly

I wonder if I have ever sat so evenly in a chair, if I ever had peach hair, light on my skin like that

it reminds me of my friend who competed in gymkhanas, we made up our own horses, hers was called Mars and mine, BeTwix and we ran

so fast our hearts thundered up her grandmother’s hill in the La Roque-Gageac

her legs were like those of a foal,  even at eleven, the waiters watched her with wet lips

I think of The Object Of Beauty, how Liv Tyler gleamed, coming out of the oval swimming pool

What men must think when underage girls begin to fruit.

My ghosts routinely tell me, I am without worth, they remind me if I had anything worth having

my mother wouldn’t be absent

a life time of inadequacy, wouldn’t be my legacy

I disappoint myself, not just the ghosts, sometimes I think

I don’t belong in this American world, where women are proud to work sixty hour weeks and go the gym at 9pm

still feeling they haven’t worked hard enough.

I think I am forever running in the Nouvelle-Aquitaine, with my imaginary horse

watching a girl turn into a woman, aware of too much even then, and not enough

the specters mock my lack of confidence, whispering in my detached earlobe

nobody likes a wuss, confidence is the American calling card, haven’t you noticed?

Even silly people and indifferent people get somewhere, if they believe in their

silly people and indifferent selves. And brilliant people, who doubt, will fester

like a ring someone lost in a river, glitters too deeply for marbled birds to

pluck it out and restore to light.

I lost a ring once, you’d given it to me when we were 14 and I didn’t have coltish legs

or peach fuss on my skin, but rather, the strong bones of a kid who drank milk with her cereal and got a stomach ache

reading Asterix at the pine breakfast table, with her stuffed toys.

I can still hear the plastic clock and hum of the washing machine

a warm symphony of my childhood, as I delayed leaving for school

and the inevitable crush of humanity, I had long decided was not for me

in fact, my trajectory was so far from that world of push and pull

competition and attention, fan fare and nose-pick small talk

I inhabited the after school hours like an addict of one

rejoicing in the quiet and empty spaces where

my mind could roam and gallop

sometimes I would sit on the roof tops of outdoor storage buidings

eating my soggy paper bag of sweets, stuck together from being

crunched in my pocket, head stuck in a book about

beautiful places with kind people and fantastic things

wild roses growing like thoughts from arching cracks

in concrete, their soft heads and sharp thorns

not the decapitated baby bird, I buried beneath the acorn tree

its silvered blind eyes, swollen and bulging

wings pressed like cries of regret for having never spread

in flight

something horrifying in everywhere you looked

like the terror you feel when you realize you are truly alone.

That kitchen clock would change day and month

but never really the precision of its emptiness

I learned it is better, to rely upon fantasy and avoidance

than the pinch and grope of society.

Often, a stranger would ask

why are you playing outside so late?

I would run away into the eclipsing shadows

behind the corrugated iron fences that separated

the good neighborhood from the skeletons

those bombed, bleached, bones of former homes

where a kid of twenty years ago had lain

watching paper airplanes cycle

above their head, clutching something with glass eyes

and faux fur, as I still did

funny, to find some comfort in the inanimate manufacture

of nature

my toys looked at me in the darkness and spoke

words of love, I needed to consume

their salty fur held

the cups of my early disenchantment

when teachers commented on my red eyes

I said; hay-fever and they believed me

because I wore a dragon tail

this was surely an adjusted child

with avid imagination

cantering alongside her friend

with the honey colored hair and long bare arms

absorbing sun like a shining fruit

I knew then how different I was

how quiet pain, how loud silence

my mother always looked so beautiful in

floral dresses with her trim ankles and long neck

I, the stranger behind her

admiring and shameful in her artlessness.

it was among the lost in forest, I claimed my place

when first love failed, when promises became

paper envelopes containing no letter

dishing out school diner and homework

leaving my scuffed shoes at the door

I climb

into the ivy

away from the party

a reflection I see of myself

gathering stillness like a blanket

she is fetching her best smile

for the emptiness of years

staring into emulous clouds, watching

for signs and miracles and unspent words

the sound of others laughter

rinsing through tall green shadows

like echoes of

someone else’s life

 

 

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.