Room

Women have always done it, unrecognised, hidden. And even once allowed, we deny it, because being allowed in itself takes something away. Who offers the permit, and do I want it anyway? I may continue in secret. No-one will know, either way.

it’s warm and dark red and the woosh-thump-woosh-thump’s always there, and I’m on my own/never alone safe warm nourished part of you and that’s all I want and ever need

jerked screaming, fighting every push and brutal squeeze, too bright, too hard, can’t go back, let me back let me back, let me in … skin touch soft warm fill me keep me safe together

I have a room where I go and close the door so no-one can reach me. It seems like I’ve had it forever, but there must have been a first time that I discovered it. Everything has a beginning …

rewind until I can hear her screaming at me, until she’s grasping my wrist, and I’ve done something wrong and I don’t know what still don’t know, and her breath smells and I look up into her eyes and know that I’ll never be right so I need to vanish. I stand still, her bone-witch fingers surrounding my wrist, and as she shouts down at me I can’t move. Tell me it will be okay, but there’s no-one else but me and her and brick by brightly coloured brick I build until I vanish. I’m gone where she can’t touch me anymore and that’s when I find my room.

Ten years on, my room has materialised. I learned to read and a door opened into somewhere I never knew existed. I can retreat until I don’t hear the screaming anymore. And when I’m all wrong, don’t fit it, don’t get the joke, can’t play with us, my room’s still there, where I can’t be touched. John Peel’s on the radio, though, and I believe that somewhere there’s a way out.

In time, I discover that I was right, and I pretend the room’s gone. I watch as the sky fades, blue, green gold, to darkness, setting sun, silhouetted trees and chimneys. I’m in the attic, real room of my own. Mismatch thrift shop furniture and peeling wallpaper spell freedom. Rent paid, I can enter and leave when I want. I lie on the worn grey carpet and reward myself for each page I write, each sunset I paint.

At night we drink and smoke and dance and the music’s louder than my heartbeat, until the sky lightens from navy to turquoise again. Milk fresh on the doorstep, we stumble back indoors. And later when I’m heaving the night into the toilet, my t-shirt clings against my skin, and I go to my room, but I’m not telling anyone. I creep in, furtive, would never tell, never share, can’t admit that the room’s still there.

I’m spent, another night, red wine in jugs you can’t tell how much you drink and we were laughing so hard my throat’s sore and my ears still hear the music and now it’s all stopped, and I’m chilled, skin clammy, but inside my head is quiet and I’m not dangling on the edge of madness, won’t see a counsellor, see her, won’t see her again.

Another ten. I’d get up if I could but the gap in my symphysis pubis is too large, and the baby stretches my belly, I’m seventeen stone at my biggest, and my mind has slowed like my steps. The sun shines in, cats rolling on the golden carpet. My world has titrated down to one room, can’t diminish any further, but it’s not the room I was thinking of.

I’m never alone, and it’s eating me and I want to be one, own, me, gone, and the drugs take the edge off and gradually I claw back a tiny place that’s my room. I can sit still, feed the baby, watch birds in the garden and think. There’s something new, though, and it glows green as I realise I’m not allowed to be alone.

Maybe the end should have been when I delivered the baby, but I’ve found that’s not an end. And now, behind a barrier of books, I am rebuilding my room, stealing back moments to write. My desk is tall, broad, blue-stained, grain of the wood still visible, family photos backdrop my thoughts. Does time need to be scarce so I write every word?

Mum, mum, I need a drink, did you get more eggs, can you wipe my bottom, can you drop the car at the garage, what’s for tea, I’m going to be late, can you help me with my homework, you never told me it was parents’ evening, where’s my socks, I need a lift, is there more cake, he’s got all the socks, that’s mine, I want it, it’s not fair, I want, it’s not fair, I want, I want, I want …

Frontier Love: Revised

frontier love

to love = aimer

 

we love without borders

in limerance I give myself to you

no holding back, no baggage

our love is perfect

hold this/that moment

 

je suis

tu es

nous sommes

nous tombons

nous sommes tombé(e)s amoureux,

nous aimons

 

a border divides us, a sea, a language

I don’t know why I think I can love in French when my English love is imperfect

 

Nous nous aimons

nous nous sommes aimé(e)s

nous nous aimions quand …

nous nous aimions

nous aimons sans frontières

en limerance je me donne à toi

sans retenue, aucun bagage

notre amour est parfait

tenons ce moment

 

I am

you are

we are

we fall

we fell in love,

we fell loving

 

une frontière nous divise, une mer, une langue

je ne sais pas pourquoi je pense que je peux aimer en français quand mon amour anglais est imparfait

 

we love

we loved

we were loving when …

we used to love

 

 

under au dessous de La Manche, 250 feet below sea level, pour toi ca c’est soixante seize mètres, I pause, je m’arrête, weight of water (l’eau) crushing me m’écrase

as I travel again comme je voyage encore une fois

my life divided/ma vie divisée

from yours

no we. oui?

If you say tomber en amour to a French(wo)man, s/he/they/we may start looking for holes.

 

to see: voir

the sea: la mer

je traverse la mer pour te voir

je deviens une mère/un père

tu deviendras un père/une mère

nous serons des parents

unspeakable difference

 

 

 

Knife-edged Love

If you are broken I might be enough

sun in my eyes blind me to what stands

stone grey sea rise and fall with my heart beat

worship me you say

my fingers freeze

waves ride in relentless sea

wind in my hair

feet enclosed in fur lined boots

worship is not enough

I stay hidden

ice at my breast

unceasing sea turn me over

sun warm on my eyes

grey white winter skin and hair

 

what I want is fractured

knife edged love

chill freeze my fingers

rays caress me open

heaped spray spreads into sheets of foam

wind blows harder

knife marks your wound

 

out of place nothing before me

no more skin exposed than lips and nose and icyfingertips

 

sea slide up the beach bubble and roil

sun seeps through the cold

just like your words scar

other than as a mirror for you

what I want doesn’t exist

strip layer after layer,

expose my eskimo skin

I bare myself for you

 

still chill on my heart

roll no gold line roll on

you are hundreds of miles away

would you do the same for me?

Blindsided: Referral Letter

The EyeWorks

High Street

Bexhill

 

Dear Dr Keane,

I examined Mr Adam Sharp, dob. 2.6.80 today. He attended c/o frontal and temporal headaches for the past three months.

I found a bilateral temporal field loss which has not been noted on previous examinations. I include a visual field print out.

Mr Sharp’s visual acuity has also dropped in his left eye from 6/5 to 6/9, and in his right from 6/5 to 6/6.

I would be grateful if you could arrange to refer Mr Sharp as a matter of urgency.

Best wishes

 

Clarissa Vider

Bilateral hemianopia

Blindsided: Glossary

Person. This story is about Adam, a person.

Patient. In some people’s eyes, Adam is also a patient. These people are part of the medical establishment. To them, he is patient, has to be other, the object of their care. Without this otherification, he is dangerous. Sometimes Adam feels like he is no longer a person. Is he a number, an object?

Practitioner. Optometrist, General Practitioner, Registrar, Consultant Neurosurgeon, Health Care Assistant (HCA), Nurse, Porter, Theatre Nurse, Technician, Ear, Nose and Throat (ENT) Specialist, Consultant Anaesthetist, Consultant Neurosurgeon (again),  Registrar (again), Senior Registrar, Have I lost you yet? Adam feels lost amongst this barrage of qualifications, acronyms and hierarchies. Name badges make little difference when you can’t see. Nurse, Nurse Practitioner, Health Care Assistant (HCA), Porter, Consultant Neurosurgeon (again), Registrar (again), Senior Registrar (again), HCA, Nurse, Occupational therapist, physiotherapist, psychiatrist, counsellor, general practitioner

Paper. This is a term paper, which I present to you for marking. Within this paper is a fictional paper written by a fictional doctor for a fantastical version of a journal for doctors, the British Medical Journal, and outwith this paper is a paper on blindness that would not stay unwritten. Each sheet you hold is paper, pulped wood, smeared with petrochemicals. Inkjet ink will smear with tears. Papers determine one’s identity: in this paper you may find out more about Adam, about the relationship between person and patient, between patients and practitioners, about me, the author, perhaps about yourself too.

Record. This paper is a record, but what is it recording? A record is a testimony: I write this on behalf of those who cannot write, speak, see. Memory, statement, report, in black on white. A written account of event(s). An achievement. Nothing in here is off the record, but it seeps out from the boundaries of the record; what I have read sprawls across this record, bleeding print, ideas that haemorrhage unstopped

Story. Story, first, was history. Now, story is, ‘a narrative of fictitious events, designed for entertainment’. Beyond definition, story is elusive. It dances between fact and fiction, fragments and the whole. It lives in the space between the sheets of paper, not just in the inked words on each page. It finds a space in your mind: story is nothing without mindspace. Story is not, if it is not read, not told. Story is personal, of a person, for people. See, speak, write, create a story, find a (happy) ending.

Tumour. There’s a tumour in Adam’s brain. As a sneak preview, I’ll let you know it is a pituitary adenoma. Does that mean much to you? Never mind. A few millimetres of errant tissue in Adam’s brain changes his behaviour, his choices, his life, his story. Meaning collapses for him. Mind you, when the story starts, he doesn’t yet know that he had a brain tumour. Bear that in mind.

See. Seeing: we see without thinking, we ‘look, behold; observe, perceive, understand; experience, visit, inspect’. I see: I follow what you are saying. I see: I have (a) vision. Also, See, ‘throne of a bishop, archbishop, or pope’ from Latin sedem ‘seat, throne, abode, temple,’ related to sedere ‘to sit’. I do not see, I am unseated.

Blind. Lacking sight? Unable to see? Blindness is seldom total lack of sight: most blind people have some residual vision. For them, life depends on exploring what is left. Think of blindness as part-sight, ‘now we see through a glass darkly’. The original sense of blind comes not from ‘sightless’ but ‘confused,’ underlying phrases like blind alley.

Sight. A thing seen, esp. of a striking or remarkable nature; a spectacle, a vision. The apocalypse. Something which calls forth contemptuous, horrified, or amused glances; a shocking, repulsive, or ridiculous spectacle. A show or display. Aspect, appearance, look. The perception or apprehension of something by means of the eyes; the presentation of a thing to the sense of vision. A view, a glimpse. Hold all these aspects of sight in your mind’s eye.

Loss. Something is missing, disappearing. At first imperceptibly, sight vanishes. Adam becomes aware of this slowly. Something in this eludes me, I cannot address it adequately in 6000 words. Practitioners lose perspective. Adam loses his personhood, loses half his field of vision, loses his …

… Pouvoir. (French) v. to be able to, can, may, might, n. power. From the Latin, potis sum, to be master of. Command, agency. Adam loses his ‘pouvoir’. Some is snatched from him, physiologically, some is taken by a system that disempowers him. Impuissant, he cannot see, so he cannot [………..].

… Savoir. (French) v. to know, to see, to be aware, to realise. n. knowledge, learning scholarship. from Latin sapere, (nominative sapiens), from PIE root *sep- (1) “to taste, perceive”. Homo sapiens – to be human? Knowledge, empathy, understanding all are needed to be a medical practitioner. Henry Marsh writes in Do No Harm, the voice of the practitioner for the purposes of this paper, ‘illnesses happen to patients, not to doctors.’ (p215) Knowledge, savoir, has a protective function. Adam is unseated, unsettled, uncertain, sans savoir.

Blindsided: story in pieces

[Interstitial: n. Of an intervening space; esp. a relatively small or narrow space, between things or the parts of a body, of the minute spaces between the ultimate parts of matter. From the Latin, interstitium, space between]

[fragment: transf. and fig. a broken piece; a small detached portion, a part remaining or still preserved when the whole is lost or destroyed. from the Latin, frangĕre to break]

 

What images have burnt a trace in your mind when all else is forgotten? What stands when all else has fallen? What do we take with us when we flee?

Story burns, story stands. Story defines and identifies.

Anders Nilsen compiled Don’t go where I can’t follow, a story told in postcards, letters, cartoons, scraps torn from his jottings as his fiancée Cheryl was torn from him, from life. A camping trip, photos from when they visited France, then everything changes with the black and white text and sketches in The Hospital. After that, The Lake, the graphic story describes how Anders scatters Cheryl’s ashes where they had planned to marry. The book was first created as a memorial for friends and family. A relationship in ninety pages, this assemblage is as moving as thousands of words. It tells the story.

 

[fugitive adj. Apt or tending to flee; given to, or in the act of, running away. From the Latin, fugĕre to flee]

 

Story is elusive. Scattered snapshots, some burnt, blow across the pine needled forest floor. The house no longer stands, the people have been taken away, but a child hid in a gap in the wall, and now he is running too, so the story can go on … start … flickers, traces of memory, Fugitive Pieces, blurred memories tainted and torn by trauma, as in The Drowned City, the first section of Anne Michael’s novel. Chase the story, run it down, pursue it, consume it until it is part of you that only ends with death.

 

[fiction n. arbitrary invention, that which is fashioned or framed, counterfeiting, the action of ‘feigning’ or inventing imaginary incidents, existences; the species of literature which is concerned with the narration of imaginary events and the portraiture of imaginary characters. From the Latin fictiōn-em , noun of action, fingĕre to fashion or form]

 

Experimental stories glide into your mind, unseen, seep, creep, slide. Their presence eludes touch, but they are there, none-the-less. Expect no start, middle, end, no neat ravelling of threads to form a rope evenly over pages, chapters. When you close the book the rope is there, none-the-less.

In Katherine Angel’s Unmastered, A Book on Desire, Most Difficult to Tell a woman meets a man, has sex, conceives, has an abortion; ‘and then down, down, down, further and further I tumbled – Alice, pointy boots, tressed hair, topsy turvey into a tunnel of grief, into its numbing invisible embrace.’ (p238) Abortion reverberates through her life, through the white spaces in her book where something elusive starts to become present, something intangible, something that changes texture when you try to grip it.

‘5.           Years later I roamed, stunned, excited, through the Neues Museum in Berlin: rebuilt, restored; the archive of itself.

Its wounds preserved, lovingly rendered. Its memory on its skin.’

(p282)

Story emerges, unbidden, unbound.

 

[borrow: v. To take (a thing) on credit, on the understanding of returning it, or giving an equivalent; a thing recognized as being the property of another, to whom it is returnable.]

 

The pieces for this story are borrowed, appropriated, adapted. I learn through others. I take what I am given, and that which I am not given. I consume, devour other people’s stories to narrate my own.

Life’s events force story: we are compelled to tell our stories, of trauma, of change. Life is rich in complexity, messy, uncertain, relationships are tangled, and however much you want closure, a creative writer’s perfect plot, the script writer’s story arc, neat endings are unlikely. As Anne Carson writes, ‘The fragments of the Geryoneis itself read as if Stesichoros had composed a substantial narrative poem then ripped it to pieces and buried the pieces in a box with some song lyrics and lecture notes and scraps of meat … you can of course keep shaking the box.’(P6-7). That is life, that is writing about life.

 

[shake: v. to move quickly to and fro. To vibrate irregularly, tremble. To shiver, vibrate, flutter.intr. A poetical word for: To go, pass, move, journey; to flee, depart, in physical and non-physical senses.]

[unsettle: v. to force out of a settled condition; to deprive of fixity or quiet, not peaceful, not firmly established.]

 

Ref

  1. Marsh, Henry, Do No Harm, Stories of Life, Death and Brain Surgery (Phoenix, London, 2014)
  2. Jay, Martin, Downcast Eyes University of California Press 1994
  3. Nilsen, Anders,, Don’t go where I can’t follow (Drawn and Quarterly Quebec 2012)
  4. Michael, Anne, Fugitive Pieces (Bloomsbury, London, 1998)
  5. Carson, Anne, Autobiography of Red, (Jonathon Cape, London 1998)
  6. Angel, Katherine, Unmastered, A Book on Desire, Most Difficult to Tell (Allen Lane, London2012)
  7. Inspiration for word definitions derives from oed.com and etymonline.com accessed 3, 25, 28 March 2015 and Downcast Eyes (referenced above)

Blindsided: Introduction

‘My first sight on entering the consultation room was a Babel-like tower of multi-coloured folders containing the patient’s notes … a tower of sheets of paper, bursting out of dog-eared files, in which the recent relevant results have rarely been filed, and if they have been filed, have been filed in such a way that it is usually very difficult to find them.’

(Marsh 2014 p264)

Aspects of people’s stories can be found between the pages of a medical record, yet medical records are about the patient, not the person, for the practitioner. In much of what we have read this term the overall story is an accumulation, something found in the words on the page but also in between the words, between the pages, within different styles and formats, which makes me think of the way that a medical record works.

I want to unsettle conventional expectations of a medical record and use it as inspiration and as a place to contain poetry, prose and critical work, the scaffolding for the story of a person. Because of my background as an optometrist, I have written about sight loss, and explore issues of changing identity in relation to shifts related to sight loss. Sight loss unsettles the human experience in the same way that experimental writing can. It forces you to look in a different way, use different parts of your vision, your brain, your mind. Did you know that people with cortical visual impairment may not be able to ‘see’ an object, yet can still react to its presence?

Our senses are dominated by the visual, and as Martin Jay explains in Downcast Eyes (1994 p3), so is our language. Development of sight comes late to the foetus, and much only happens post birth. Since the industrial revolution our culture has shifted from oral to visual. In the imagination, our brains prioritise images over sounds and smells. The visual function takes a disproportionately large part of our brain, and it dominates this paper. Visual metaphors recur throughout. French creeps into this paper, as does Old English, as does Latin, language of medicine, in attempt to seize back jargon, to own language, on behalf of the patient, the person, my self.

With more space and time I would have included letters – a medical record is packed with referral letters between practitioners, post it notes, perhaps the person’s own notes, letters and thoughts. There is a further critical paper on sight loss in literature that I could not include due to constraints of space. This story spills out beyond these sheets.

 

 

Ref

  1. Marsh, Henry, Do No Harm, Stories of Life, Death and Brain Surgery (Phoenix, London, 2014)
  2. Jay, Martin, Downcast Eyes University of California Press 1994
  3. Nilsen, Anders,, Don’t go where I can’t follow (Drawn and Quarterly Quebec 2012)
  4. Michael, Anne, Fugitive Pieces (Bloomsbury, London, 1998)
  5. Carson, Anne, Autobiography of Red, (Jonathon Cape, London 1998)
  6. Angel, Katherine, Unmastered, A Book on Desire, Most Difficult to Tell (Allen Lane, London2012)
  7. Inspiration for word definitions derives from oed.com and etymonline.com accessed 3, 25, 28 March 2015 and Downcast Eyes (referenced above)