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.

 

SMITTEN

For the sake of SMITTEN, a project I believe in more than anything I have ever done before, I have asked close friends to take over my social media rather than close it down, so that SMITTEN can continue to flourish and succeed.

In my absence, due to my severe eye-sight-issues, my friends will be running the SMITTEN Facebook page and all SMITTEN related materials. Our goal is to ensure SMITTEN is successful in all ways. Sales are one way of legitimizing a project and ensuring its authors are HEARD.

Obviously LGBTQ projects are harder to sell than others, but it is my hope SMITTEN can continue its success through the rousing support of all those who believe in LGBTQ equality and the rights a woman has to love another woman. Please consider supporting SMITTEN – each sale helps raise visibility and gives SMITTEN authors another opportunity to share their unique and beautiful voices.

SMITTEN news and updates can be found here

SMITTEN is for sale at Amazon and Barnes and Noble. If you support local bookstores please ask them to stock SMITTEN using Ingram. If you cannot afford a Kindle copy or hard copy please ask your local library to get a copy of SMITTEN via Ingram. It doesn’t take much and it means everything to the 120 authors and poets of SMITTEN. Indie publishing doesn’t flourish without our support as a community!

Goodbye for now

In the New Year I am going to do something drastic. I’m going to close all my social media down and take the majority of my books/work offline/out of bookstores. The work that will remain is what I’m most proud of; SMITTEN This Is What Love Looks Like (an anthology, 2019), We Will Not Be Silenced (one of 4 editors/contributors, 2018) and Pinch the Lock (Finishing Line Press, 2016).

When I began, I really believed I could contribute something valuable to the world through the medium of writing. I saw many other people trying but I did not know how many and since 2015 I have seen that there is a glut of people all self-publishing, indie publishing, small press publishing, all with the same ‘dream’ of being a legit writer. Mostly wasting hours on social media futilely. I realize 99.9 percent will never be. The only ones who can do it are those on disability, who get a cheque without needing to work, or supported by husband/wife/family or you’re a retiree. If you DO have to work for a living then it’s rare you can put in enough work to even get to the indie publishing stage.

There are exceptions. One of my real friends whom I did meet on social media works full time and is one of the hardest workers I know. She will succeed I have no doubt about it. She goes home from a hard days work and produces consistently some of the best work I’ve read online. People like her are rare. They are one in a million. Others have the talent to do it but it will depend upon if they have the time to make it happen (you know who you are) but the vast majority have neither the talent, nor the ability to make it happen.

When I began writing I thought I was a pretty good writer. When you read some of the stuff online it’s easy to see why I thought that, a lot of it is really poor quality. On the other hand you need to be either absolutely brilliant or someone who is in the know, to get a really big publisher. I am neither absolutely brilliant nor ever going to be someone who is in the know/networked up to the hilt. Even those who everyone talks about as having a ‘good publisher’ actually don’t. They just secretly vanity press pay or exaggerate how much they actually earn. To earn a living wage as a writer unless you are an editor, it’s the 1 percent of the 1 percent.

I don’t want to be an editor. It’s a thankless job and underpaid. I have qualifications and I am going to use those and return to my previous career, hard as it is, it can earn me what I will need to take care of myself in the future. Maybe no job will be different, maybe I will always be taken for granted and used but I want to do it on my own terms. I have always supported myself from the age of 18 and I always will until I cannot any longer. I have never had any help.

Lastly, most of you don’t know but I was recently diagnosed with a very serious eye-condition that means I am losing my sight. I realize I have to adjust NOW rather than when it is completely gone. I doubt I will still want to live if I go completely blind and I have decided if that day comes I will elect for euthanasia as I am not someone who wishes to live as a completely blind person. Especially as I have no family who will care for me. However, if that day doesn’t come or it gives me 20 more years, (which is unlikely) I still need to change my life to ensure my eyes do not worsen.

As some of you know I had battled a serious illness in 2017 which radically changed my life. It was caused by a virus and I am still sick with it but I have learned to live with it and am high functioning despite it not having completely gone. I believe it will one day completely go but it is a long painful battle. I thought that was enough to deal with but in addition to this my mother told me she no longer wanted me in her life ever again. She and I have had our ups and downs but naively I thought as she aged we would get closer. I have always loved her very much even though she was not in my life that much. When she told me this during my illness, effectively kicking me when I was down, it was the last straw. She knew she’d hurt me as badly as she could ever hope for. She succeeded. To protect myself I accepted what she said and have tried to get on with my life knowing she will not be part of it. It has hardened me and I am bitter about it but I will never be as cruel to someone else as that. I will never succumb to cruelty to deal with my own pain.

On a positive note, I am stronger for all of this. But having the eye sight issue on TOP of all of the above, was just too much. I do have it in me to change my life. I have decided to once more change my life. I am not going to carry around the rejection, fear and grief of her hate of me or anything else, anymore. When I began my blog/writing in 2015 I felt it was a chance to try my hand at writing. I don’t regret doing that but I see now realistically I have to move on.

If you know me, truly know me, and have my number and my address and we talk, then I am bound to call you real friend and will keep in touch. When you get sick you realize who your friends are and it is a good clarity. For those of you I call friends thank you for your friendship and I hope we keep in touch. We may not as we may no longer have anything in common but I wish you all much success.

SMITTEN will be my last personal project in the publishing world for the foreseeable future, although I have also been involved in YOU DON’T LOOK SICK and hope Indie Blu(e) recognizes me for that when it is published next year. SMITTEN is a wonderful ending to this chapter in my life. It is a testimony to the talent of women when they come together. Just because we are minorities doesn’t mean we support each other and lift each other up. I hope projects like SMITTEN help future women do JUST THAT because THAT is what is needed. We need to be good to one another! To support one another!

I want to personally thank the following whom I have met on WP for their loyalty, friendship, goodness and inspiration. I think you are incredible human beings; Mark. Eric. Derrick. Bob. Crystal. Erik. Jane. Karen. Raili, Rita. Susi. Anthony. Laurie, Tony. Nicole. Tara. Helena. Philip. Sarah. Tremaine & Monique. Thank you to Christine and Kindra for letting me work for Indie Blu(e) I really hope all the work I did helped and you succeed. Rita.

RIP Natalie Scarberry you are loved.

Thank you to anyone who read anything of mine. I appreciate you. I wish you only the best.

Candice Louisa Daquin

MAKE ME

war paint

When I’m not telling people

I am the least competitive person you’ll meet

I shouldn’t have moved to America, I am an anathema

I am nevertheless, competing with myself

to survive

the breakage, subtle and merciless of my whole

appears to be my greatest talent

should they look me up in the dictionary

I would stare out bleakly at Consequences in Fetus of Nicotine In-Utero

it began before words were formed, a slow

incompleteness quite unlike the robust energies

of my relatives

a thin, wan girl, slow to learn, I made up for it by being sporty

denying the gnawing, gnarling pain in my stomach

was more than a night terror

swimming for medals was competitive after all but

didn’t feel so when, head under water, the cheers sounded

like waves breaking on distant shores, easy to forget

noxious rinse of chlorine in verruca filled inner-city

swimming pool where small measure of fame could be found

among cast-off plasters.

Beneath water I felt powerful, unmolested, not burdened

by sandwich of pain in my gut or how

no-one for me sitting among keening spectators

when I came up for air.

Since then, fantasy has been my succor, I can’t deny it

perhaps I have lived half in petri-dish and tree house

with ‘here be dragons’ written on its door.

When teachers told me; I wasn’t behaving like a good girl

I said ‘make me‘ and spent the afternoon kicking muddy

kid shoes against linoleum hallways

what do they think we imagine as, willful, disobedient, opinionated

we are shunted from our positions as ‘well behaved’ to the

shrine of sinners lost in plastic corridors?

We learn the company of other Reparates

is oddly comforting, no-one to remind us we cannot

make sense of numbers and still struggle with spelling

soon I gave up trying for A’s

locking lips with strange boys who wanted my best friends

instead of this disinterested girl

briefly kissing felt like swimming underwater

but coming up for air was much harder.

I am teleported now into a body and time I never imagined

surviving this long or sitting at this table, watching birds

battle their pecking order outside in a hostile green world

I rarely visit

it’s not reluctance or shyness, they have grown comfortable with

the shifting skin of me

something that happens when you begin to leach

that essence of youth and vigor

realizing, if you can make it out of bed today

you’re doing better than the day before.

I hear in my head, the scold of my mother

who believed I gave myself this illness

and much as they’ve told me that’s madness

I am often found returning to those words

as if they have some clammy power over me

which of course, they do.

I know I was well and then I was not

just like you can remember the day you lost your virginity

or survived a car accident or inherited a country cottage

it’s a day when colors and sounds change

in this case, terror walked into my throat

sucking on me, whispered; bitch, this is your new normal.

Fight as I may, these years have unfolded like those

paper flowers I used to buy in joke stores

put them in water and watch them bloom

only long enough before turning to ink and

wet tree pulp

it’s a form of flaying when strangers are kinder than

those you expect

angry with yourself for not learning sooner

expectation leads to disappointment.

This could be why I didn’t

enter many races or attempt to claw my way to the top (of what?)

better to stay low and wait it out until

you can have your turn

only sometimes, waiting uses up all the time you have left

then it’s almost too late and you have to change

everything.

Nowadays I compete with myself

can I cure the beast that’s become constant companion?

Will it matter if I do?

What happens afterward?

Fear is mauve and dives and swoops like unmated Mockingbird

I hear the kitchen clock and fast thud of my tired heart

Somewhere, I’m still the girl in the treehouse who says ‘make me’

perhaps one day it won’t be disappointment but

something lovely, I can only hope

though my body likes to punch me in the gut

as I fall asleep and try to dream

thump, thump, thump, my mother’s voice

this was something you did wrong

thump, thump, thump, my own voice

no it wasn’t this was an explosion taking the long way around

even getting half way there would be some kind

of accomplishment

which is why I always said it’s not about winning

but making the effort

to which I was told, that’s pretty negative foreign-born-girl.

Where’s your sense of spunk? I think I lost it somewhere between

throwing up for 4 months on end and the doctors saying

maybe it’s incurable…. ho ho ho …. you see

I’m not from here, I don’t belong

though where I came from I hardly know anymore

so I will forge ahead, outcast or survivor, pick a damn straw

with every passing year I realize

I can’t win, I but I will fight

MAKE ME I whisper to myself

bloody well try to MAKE ME stop.

 

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

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