Atlas Literary Journal - Issue 01

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Atlas ­­­

A literary medical journal 01

Regaining authorship of disease Understanding the grief cycle The current state of transgender healthcare Anxiety and connection Giving sorrow words ISSN 2463-6576



The atlas is the first vertebra in the body. Connecting the skull to the spine, its movement allows the head to nod.



Editorial There are a couple of things people didn’t tell me growing up that I went to medical school to learn. As embryos, for example, we had a motor with a tail attached to it that spun and moved organs around our body. It placed our heart on the left and liver on the right. Some people are born with motors that don’t spin properly, and their organs are around the other way1. Our structural complexity is uncanny. There are windows in our ears, and antiseptic in our tears. Why we are this way is something we’ve been asking ourselves since the thought became available to us. Personally, I hoped that studying medicine would give me some answers—as though knowing the shape of our brain could help me to understand my need for company. But that hasn’t been the case. While science helps us to understand just how physical and chemical we are, it will always fall short of the whole picture. We are far more than bones, muscles and brain tissue and so is our experience of illness. Atlas is a collection of writing that recognises this—our diversity, our determination, and our experience of a body that feels like anything but anatomy and physiology. Our hope is that Atlas will shift our medical conversations from the rigid and prescriptive to a form that does justice to our complexities. Our first issue contains stories of grief and finding meaning through writing; anxiety and its relationship to place; organ transplants and generosity; the experience of gender diversity in a health system fixated on tickboxes and much more. We would like to say a huge thank you to all of our contributors for sharing their writing with us. We have been honoured by the response and volumes of deeply personal texts that have found their way into our inbox. Atlas is a medical text about the unphysical; the parts of the human we can’t see or dissect. These parts are often neglected in our medical experiences and we hope that Atlas becomes a space for their revival. Helen Ker

1.

Kartagener syndrome, also known as primary ciliary dyskinesia.


Contents

Poetry

Hypochondria Elizabeth Morton

09

Prose

Taking your son to the detox clinic Frankie McMillan

10

Poetry

Treatments Elizabeth Morton

12

Poetry

The professor of anatomy introduces Mac Francis it’s time we talked about the double helix Kerrin P. Sharpe

13

Fiction

Gristle Elizabeth Morton

14

Poetry

A neurosurgeon collaborates with his dreams Kerrin P. Sharpe

18

Essay

A literary exploration of the grief associated with medical illness Hannah Coombridge

20

Poetry

Tangihanga Nervosa Sarah Maindonald

30

Poetry

Her brain Hannah Coombridge

31

Essay

Not standing upright there Paul Stanley Ward

32

Poetry

The body talks William Sherborne

40


Poetry

Inheritance Johanna Emeney

40

Poetry

Friend bequest (from a modern cad) Emily Adam

41

Essay

Taking transgender healthcare seriously Alex Ker

42

Poetry

Wheel of Fortune Greg Judkins

46

Poetry

Simple first aid Hannah Coombridge

47

Poetry

RSI Amber Read

Essay

Giving sorrow words: the cathartic power of writing Sandra Arnold Medical miracles Johanna Emeney

Poetry

48

56

Poetry

Dissection Angela Andrews

Poetry

So what was chemo like? Heather Cameron

57

Poetry

Public health campaign Erik Kennedy

58

Poetry

Sanatorium Wes Lee

59

Contributors Acknowledgements

60

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Fig 1. Scalp (H+E stain)

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HYPOCHONDRIA Elizabeth Morton

We hypochondriacs finger each other’s nodules like lovers, count spine-knots, freckles, calliper the bloat of our bellies. You wear your disease to parties like a favourite frock, rub menthol on rib-skin, and calamine on knees. You recount specialists like old flings, their gelid fingers, wedding rings that scrape against the bristling of a nipple. I have been trying to be the better cripple. My bedsores are full-bloom, my spittle, salted. My halitosis speaks for itself. Where you twitch, I convulse. Where you palpitate, I myocardial infarct. My hunch is formulated. The sway in my swagger is a stand-alone act. There is no time out. We monitor our love; scrapbook STIs, grope marks, Karma Sutra for aged hips. In slumber, we play possum – sleep with one eye open, one finger on our pulse, wait for tumours to lay their eggs inside our chests, for carcinomas to unfurl, cautious as flowers, inside our breasts. There is no time out. I am the better cripple. I can outrun the light at the end of the tunnel.

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Taking your son to the detox clinic

Frankie McMillan


After many circuits around the hospital grounds you find the detox clinic You wheel your son’s suitcase up the narrow concrete path and he says he can wheel it himself but you can’t seem to let go so you walk side by side, the case bouncing behind. The wooden building is locked. His father says it’s in need of a bit of paint. Your son pushes a buzzer, says his name loudly, as if he’s a soldier reporting for duty. These are my parents, he says when the nurse opens the door.

It is important to have a door that maintains connection You troop into a room so hot you almost expect the swaying of palm trees and up on the wall is a big sign of a tattooed arm, think before you ink and the fresh faced nurse asks your son to slip into a blue gown, his blood will be taken, his heart monitored and tomorrow being countdown day his body will be emptied but please be aware things can be left behind, a tremor, a small tic at the bottom of the bed, rarely psychosis but a seizure is not unusual and you visit his small room; a single bed, one pillow and the nurse points to an oil burner, it is aromatherapy, some people like it and if he wants he can lie on his bed dreaming of oranges and sandalwood but in an emergency she will call your number for the path forward is not always easy.

At times people may falter, slide back, regroup and start again Each day he texts you; 15 mg then down to 12.5mg and tomorrow will be halfway and so you are happy, you chant the magic numbers and he says it is not too bad, in fact today he is buzzing. Two more admissions have arrived; an Indian man in a suit and a shifty looking guy, overweight, so that makes a change from the giggly girl in pink pyjamas who stole from her family. He himself has tried the back door but it’s locked, even the biscuits are under key, but he only has to ask, they are fruit fingers and not too bad. When your son sees snakes rise from the Indian man’s head, hears their whispered obscenities, he plugs his ears with Eckhart Tolle. He cries out that his thoughts are just passing clouds, there is nothing to fear, he reads the Welcome signs on the wall over and over.

Kia ora, talofa lava, let us keep close together not wide apart, kia ora, talofa lava, let us keep close together, not wide apart

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TREATMENTS Elizabeth Morton

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1.

2.

my head is full of hammers. i am a blunt instrument. my vision is laddered, like a stocking. through peepholes i recognise the outline of a chair, a doorway. a child in the corner of the room sucks the counters of an abacus. but i can’t see that. i am doggy paddling away from myself. and when you are here i will be everywhere else.

i want to screw my captors. they lay me down like a goat and all i can see are the sea creatures in my eye juice, pixels of grey. they administer the cure into my left buttock. and i pray that i will not behold the white light at the end of the tunnel. and i pray that i will not behold the white light.

3.

4.

i am the sky. i’m afraid i will swallow all the birds. blind, i gulp the silence for inklings. somebody has turned on all the lights in my head. the white light crushes my thoughts into straight lines. everything is oxygen and photons. i could drown but i’m a swimmer. i am doggy paddling away from myself.

my head is full of hammers. they lay me down like a goat. blind, i gulp the silence for inklings. i am a blunt instrument. all i can see are the sea creatures in my eye juice. somebody has turned on all the lights. i am sky. behold the white light. my vision is laddered and everything is oxygen. they administer the cure.

ATLAS JOURNAL


Kerrin P. Sharpe

THE PROFESSOR OF ANATOMY INTRODUCES MAC

FRANCIS IT’S TIME WE TALKED ABOUT THE DOUBLE HELIX

first through the shock absorbers on both heel and arch as the place where he ran to school and grew strength

and how your ladder insists I disappear when I write

and further explains how Mac’s voluntary and opposing tendons hauled the great nets at Raumati

even with your hand on my back I’m a lost tribe even though I wear the social fabric

notice he counsels where the air drawn into the lungs inspired orchids so the elastic fibres of his arteries grew a glasshouse draw this with care

of saffron robes and sleep in the crick of your c-c-code there is nothing more than my voice in the room mornings I eat knitted fish evenings I shoot dna

to show how hard Mac worked illustrate his central nervous system and as you record

in this distant place of heredity francis you cannot take the circus

this sequence you’ll find Kit Dara Cathie Ephra in the muscles of his heart

out of the elephant not after death not after anything

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Gristle

Elizabeth Morton


GRISTLE

The floppy-disk contains what is left of my heart, in JPEG format. Now and then I hole-up in an internet cafe and scroll through its contents. I zoom in on the valves and piping, rotate the muscle at right angles, increase the resolution. Sometimes I edit it in Microsoft Paint. I thicken the septum, harden the arteries, make the whole thing robust. Then there are times when I print out a copy, and fax it to a law firm in Tokyo, a medical office in Berlin, a school in Singapore. My heart is blue-tacked to a blackboard in Toronto, masking-taped to a street post in Sydney. LOST says the caption, RETURN TO OWNER. Sometimes I get phone calls—at odd hours and in foreign tongues. Most people think my plea is a joke, a botched Valentine’s, an April Fool’s along with mislaid couches and running fridges. I’m not kidding, of course, though I expect you won’t believe me yet. Let me compare it to a stonefruit. A nectarine. A doris plum. What is left of my heart is less than a cherry. It has been replaced by the organ of a pig. A bioprosthetic-intended swine, Miss Wilbur. I met Miss Wilbur twice before the butchering. Her body was finely downed, personlike. I stood behind the window and tapped it where she nuzzled. (The prospect of pig viruses meant we never touched.) My wet palms made butterflies on the perspex. Wilbur, I said, I’m taking your heart. But the perspex was intransigent, voiceless. Miss Wilbur never heard my confession. In dreams my heart sits in a Tupperware container on the mantelpiece. The doorbell rings, and I answer it and it’s Miss Wilbur. She grinds her teeth at me. I feed her stonefruit from an earthenware bowl. She grinds her teeth at me again, and this time she’s wearing the face of my ex-lover. And she has my heart between her teeth. She swallows and I wake up, panting against my duvet. And then it occurs to me that my heart has been taken, and I feel my chest under my pyjamas, and there is a hole the size of a fist. Then I wake up—this time, for proper. I pull the bedding over and open the shutters. The peach tree outside is barren and blighted. The clothesline spins gently. Waxeyes chitter in the hedge. Let me tell you about my heart, before it disappeared. It was the conical fruit, clenching against the backwaters, sputtering salty juices along anatomical corridors. Sometimes, I would wear it on my sleeve. I would give segments of it away. My ex-lover claimed a whole ventricle. I would hack with nail scissors, snipping the heartISSUE 01

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strings which would snap back like bungee cords. I suppose I gave too much away. I was generous. I had a heart of gold, don’t you know, and I would sacrifice my aorta in a heartbeat. People reckoned I was an OK guy—even my ex. But I gave her my left ventricle—the most lovely thing I had. The surgeon had red hair and a voice like wasabi. She told me a joke about the cardiologist who thought he was God. On a clipboard she noted my strained laughter. At the hospital they scanned me for sentiment. My heart was less than a cherry. They handed me a ViewMaster with slides of fluffy koala bears and Tasmanian devil pups, while they hooked me up to an electrocardiogram. My heart twitched a little, then gave up. You are technically a dead thing, said the wasabi voice. Oh right, I said. And at reception I paid my appointment fee and swallowed a peppermint, in the manner that dead things do. Miss Wilbur’s heart was a Plan B. A human organ was the original plan. I was on a list—for weeks I waited for an airbag malfunction, waited for somebody to get smashed between dashboard and steering wheel. I was praying for some poor sod to land up on a ventilator. I crossed my fingers when I wished my clients good health. I would spend evenings fetching autopsy photographs from the underbelly of the internet, lusting after that dreadful organ. The pig heart was easier. Miss Wilbur was butchered within eight days of the idea. I visited her twice. Miss Wilbur, I said, I think I love you. But she just yanked at her water tube. So now I’m looking for my birth heart, for the little slivers I handed out like candy. Miss Wilbur thrusts and flaps inside me. A foreign body. I love her, really I do. But she is meat and I am hunting down something like soul. My ex-lover and I still tussle over the left ventricle. And I’ve created a page on Facebook where people can post tubes and meat and gristle. Some kindhearted folks paid for an advertisement in the local rag. And it’s working. My inbox is flooded with heart. My phone rattles with foreign tongues. Things are looking up for me and, by extension, for Miss Wilbur. Take heart, people tell us. And bit by bit we do.

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Fig 2. Cardiac muscle (H+E stain).


Kerrin P. Sharpe

VITAL SIGNS though our engines can be restarted at a time later than given we still remember an awareness of falling and talk about the sound of moving forward in darkness or was it the light? like trespassers we cannot open the gate unless invited and only this rejection can give us back the vital signs surgeons recognise as life even now someone in the valley shouts here I am doc! and this research begins Alf remembers nothing the railway tracks CPR his broken ribs now he wears a pouch so the hospital can watch his heart think now he reads the paper faster

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A NEUROSURGEON COLLABORATES WITH HIS DREAMS

I open the frontal lobe and notice a tumour deep in the cloth of the brain its weight still surprises me the cerebrum is a cerebral hemisphere of grey and white the geography of the Broca’s and Wernicke’s area is often distorted an EEG tells half the story midnight is a distant country the near side of sunlight in this space I hear neurons talk to neurons I hear endorphins control pain like all maps every brain is a compromise perhaps only dreams share the voice of wakefulness

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A literary exploration of the grief associated with medical illness Hannah Coombridge


GRIEF

STAG E S O F T H E G R I E F CYC L E 1 NORMAL F U N CT I O N I N G

R E T U R N TO MEANINGFUL LIFE

SHOCK AND DENIAL

AC C E P TA N C E

ANGER

D I A LO G U E A N D BARGAINING

DEPRESSION AND D E TAC H M E N T

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Kubler-Ross developed the model of ‘Stages of the Grief Cycle’ illustrated in the diagram above1—originally based on dealing with terminal illness. Although not strictly sequential, the five stages were thought of as a journey from normal functioning through denial, anger, bargaining, depression, and acceptance to a return to meaningful life1. Bargaining and depression have since been reordered but the stages themselves remain unchanged along with the prevailing message that a certain stage may be continually revisited, or skipped entirely2. This model must now be one of the most quoted concepts of grief, but it is seldom unpacked to realise its true implications for the suffering individual. In the sphere of health and well-being, grief surrounds us. It hits when there is a loss of normal functioning and stays until either functioning returns, or a new reality is realised and meaning is restored regardless. Grief is defined as a ‘deep or intense sorrow or distress’ 3. It is not synonymous with ‘depression’. Confusion between the two may account for some of the severe under-acknowledgement given to the complex grief or ‘ache’ that is either directly or indirectly related to a patient’s ill-health4. Unfortunately, as the initial stages of the grief cycle are more difficult to define, they receive less attention and acknowledgement. Many cancer patients are struggling with fear, confusion, anxiety and frustration about how their terminal diagnosis may affect various other aspects of their life5, 6. These stages, along with the process of ‘dialogue and bargaining’, are seldom explored. One of the few examples is a study called ’Prayer and bargaining in adjustment to disability ’ which raises awareness of patients’ desires and concerns and concludes that a patient’s exploration of spirituality, beliefs and ideals is a powerful approach to optimise both coping skills and health outcomes7. The exploration of these ideas leads to the concept of narrative medicine.

1. 2. 3. 4. 5. 6.

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Kubler-Ross E. The Kubler-Ross grief cycle. In: On Death and Dying. Macmillan, NY: 1969. Lyckholm LJ. Thirty Years Later: An Oncologist Reflects on Kubler-Ross’s Work. Am J Bioeth. 2004;4(4):29–31. the definition of grief. Dictionary.com. Colquhoun G. The Therapeutic Uses of Ache. In p. 324–34. Prolonged illness and grieving. Harvard Health Publications Harvard Women’s Health Watch. 2011 Mar Ando M, Morita T, O’Connor SJ.

7.

Primary concerns of advanced cancer patients identified through the structured life review process: A qualitative study using a text mining technique. Palliat Support Care. 2007 Sep;5(3):265–71. Rodriguez VJ, Glover-Graf NM, Blanco EL. Conversations With God Prayer and Bargaining in Adjustment to Disability. Rehabil Couns Bull. 2013 Jul 1;56(4):215–28.

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Narrative medicine has evolved as a means of empowering patients to regain authorship of their lives8. Through an increased awareness and understanding of grief, patients may be able to recognize that their complex and often confusing thoughts are normal emotions and reactions to their situation. Rather than being overwhelmed or ashamed about their struggle with a state of ‘dis-ease’ they are invited to process their emotions in an attempt to provide cathartic relief, thereby regaining mastery of their life as their suffering ceases to be all-consuming8. Depending on the patient, their doctor may or may not play an integral role in this process through co-authorship, but it is important that they are aware of their patient’s grief regardless. Health professionals must consider the unique nature of disease where grief goes beyond physical loss; it includes loss of function, loss of awareness, a loss of ability to create meaningful, untainted memories, as well as dealing with the inevitable loss that is still to come. These are all things which cannot be measured by quantitative studies but which are exemplified in the words of patients who inscribe their experiences of grief on paper. Reading patient poetry can help people (health practitioners in particular) to unmask all stages of the grief cycle in a strikingly poignant way. Of course, in reality, every patient’s experience is unique and cannot be neatly categorized into sequential stages. A few examples explored below allow us to unpack this concept of narrative medicine and the therapeutic benefit it may hold. Lucille Clifton explores the initial stage in her poem Cancer. She begins with; ‘the first time the dreaded word/ bangs against your eyes so that/ you think you must have heard it’9. This image of her diagnosis banging against her eyes and disorienting her instead of being received properly by her ears reveals the initial shock and lack of comprehension that many patients experience. While medical professionals are surrounded by sickness and tragic circumstances, most patients are not accustomed to being in a hospital and hearing

8.

9.

Brody H. “My Story is Broken; Can You Help Me Fix It?” Medical Ethics and the Joint Construction of Narrative. Lit Med. 1994;13(1):79–92. Clifton L. Cancer. In: Mercy. BOA Editions; 2004.

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catastrophic test results or new diagnoses that may change their life drastically. A sudden diagnosis can blindside people, leaving them stunned and wondering if they actually heard the doctor correctly10. The following stanzas go on to explore this initial grief, talking about the second time being a ‘swoosh as if/ your heart has fallen down a well’ and ‘the third time you are so tired/ so tired and you nod your head’9. This progression from shock, to fear and desperation, to depression, portrays the initial stages of grief, stressing that they are all intricately woven into a dynamic and ongoing process. Thus, doctors must have heightened awareness when delivering and discussing new diagnoses. Whether we identify a stage of grief in a patient or not, we should be considering what else they may be feeling that they are not showing and maintain an open, holistic approach. The anger stage of grief is an incredibly confusing time for patients where they may often feel misunderstood and consequently distance themselves from others. This is an area that health professionals may be able to anticipate and subsequently provide appropriate psychological patient support while alerting the family to potential behavioural changes. Mandy Dowd’s poem Out in the sun the busy lives swirl reveals how she felt separated from normal ‘busy’ people during a period in which she was suffering from embarrassing unexplained symptoms including unpredictable seizures11. She is embarrassed by her ‘loss of control’ and how this is perceived by those around her12. Anger and sarcasm is laced through her writing, as part of her is shamed into feeling guilty for ‘forcing her broken existence’ upon others. She longs for an ‘old friend who sees through the frightening symptoms’ and recognizes that ‘the soul is the same is the same’12. No one wants to be a burden, to stand out, to be judged or scorned or misunderstood. Sometimes when people are the most unreasonable, they are acting out of a deep frustration with their state of being. It

10. McEntyre M. The Fear Factor. In: Patient Poets: Illness from Inside Out. USA. University of California Medical Humanities Press; 2012. p. 73–5. 11. McEntyre M. Getting the New from Poems. In: Patient Poets: Illness from Inside Out. USA. University of California Medical Humanities Press; 2012. p. 12–4. 12. Dowd MR. Out in the Sun the Busy Lives Swirl. 1992.

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is commonly recognised (though not likely researched) that we all tend to lash out at the ones who love us most. It is not surprising that people suffering from medical illness often push people away in their embarrassment and shame as they struggle to cope with their anxiety, fear, and adjustment to a life that has changed dramatically. While fear and confusion tend to characterise the initial shock stage, anger at the implications of disease leads someone to develop a negative perspective and risk spiralling downwards into the depression stage of grief. Depression is a stage that now receives a lot of clinical attention due to the ability to diagnose it and treat patients with anti-depressants. An individual may suffer from depression for a wide variety of reasons, which may or may not be triggered by another medical illness. Doctor-poet Glen Colquhoun would argue that ‘ache’ or ‘the human condition/plight’ is at the core of all depression4. Though depression is by no means exclusive to the grief cycle, it is the stage in which many patients get trapped2. Jane Kenyon’s Now Where provides valuable insight into what it is like to be mentally trapped in this arbitrary way. She talks of depression as a ‘lurking other’ describing it taunting her as it seeps into everything she does. It is inescapable; ‘it wakes when I wake, walks/ when I walk’; and as a result she is exhausted13. The ambivalence that accompanies depression is exemplified in a simple phrase; ‘If I lie down/ or sit up it’s all the same’13. Perhaps this feeling of being overwhelmed and helpless is why so many people get stuck in this stage of grief. At this point, having been driven to despair, patients can become increasingly angry with their situation and the lack of comprehension displayed by those around them. This is a dangerous time in which Kubler-Ross’ model has the potential to become cyclical as the intense helplessness strips people of hope. Depression is exhausting. It is mentally and physically draining for those experiencing it, but also for their support network. Patience

13. McEntyre M. Insider Diagnosis. In: Patient Poets: Illness from Inside Out. USA. University of California Medical Humanities Press; 2012. p. 23–6.

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and compassion are required of anyone who wants to be helpful to someone in this state of mind. This compassion must be authentic. As health professionals we must actually prove to our patients that we recognise their ache and we care. Medical professionals are in the fortunate position of being able to empathise with patients, whilst at the end of the day walking away from the troubles they may be facing (which we MUST be able to do for our own health and well-being). This makes us the perfect people to actively try to help our patients navigate the grief that they may be sinking in. In an attempt to explain what it is really like to live with chronic illness O’Connor’s poem Midnight cancer speaks of a ‘bottomless pit’14. There is no respite and she is left questioning ‘oh/ God/ why/ me?’14. This questioning is a sign of desperation as well as a cry for reason to explain what she is going through. It is often this cry that patients start to grapple with when searching for a way to move out of the depression stage. Moving into the bargaining stage is the key to progressing positively through one’s grief and finding new meaning in life even in the face of disease. This is what we must train ourselves to recognise as health professionals. This process of reaching out to others with a desire to tell one’s story is at the core of narrative medicine. It is an active phase in which the patient must begin to take ownership of their life including their disease and the way it disrupts daily routine. This may have more to do with developing a new perspective and new expectations that will enable a patient to live abundantly within their capabilities. It is the attitude of a patient deciding to fight for whatever quality of life they still have. This is evident in stroke patients who may have suffered from initial paralysis celebrating achievements in proportion to their personal significance – ‘clinging/ to the bed bars. Upright./ Triumphant’, and later revelling in their surroundings having wheeled themselves to the open door15. In Five months after my stroke Margaret Robison’s attention to the natural world focuses

14. O’Connor M. Say Yes Quickly. Comptche, Calif.: Pot Shard Press; 1997. 15. McEntyre M. Keeping On Keeping On. In: Patient Poets: Illness from Inside Out. USA. University of California Medical Humanities Press; 2012. p. 114–8.

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on life, renewal, growth, and vitality. She observes the world around her as it is in that singular moment, marvelling at what is before her despite its temporality, and her own. There is recognition of seasons and changes, of ripe fruit that will soon fall from the life-giving tree, and through this, an acceptance of mortality although the patient is not completely comfortable with it. Through a time of bargaining and actively trying to regain mastery, the patient has wrestled with her loss and doggedly recovered enough to return home, grateful for her newfound hope and joy in this modified happiness 16. This ‘return to meaningful life’ is the ultimate goal in the grief cycle, and each individual must find it on their own, hence the potential impact that narrative medicine has to empower patients through authorship. The grief cycle model is of course, imperfect. Our individuality means that one size does not fit all. Not everyone experiences all stages of grief, nor do they necessarily work through the stages in any given order. Regardless, it is generally agreed upon that once a patient has developed an acceptance of their illness and its implications and returned to ‘normal functioning’ they have effectively worked through their grief. For some patients, this seems entirely unattainable and many do not ever work through their grief associated with medical illness. Alternatively, after working through the immediate consequences of an illness, many are no longer defined by their disease; illness does not dictate how they live their lives, adaptations have been made where necessary, and mastery regained. This is a time worth celebrating. Yet for some, a certain degree of uncertainty may always remain as to whether they have come to this point of acceptance, or whether they are currently sitting in a patch of denial having come full circle. The grief cycle—though a useful tool in helping us to consider the complex nature of grief, may not hold all the answers. Grief is more than just feeling sad; it is a complex journey from a loss

16. Robison M. Five Months After My Stroke. In: Walker SB, Rosman R, editors. Life on the Line: Selections on Words and Healing. Negative Capability Press; 1992. p. 224.

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of functioning, back to ‘wellness’. The stages of grief as we know them rarely occur in isolation but are more commonly found woven together into an entirely individual experience. Grief is not objective, there are no sets of data telling you when shock is over and anger should commence. Grief is completely different for everyone. It is difficult to comprehend for the individual immersed in it, and even more difficult to express to those outside of it. Poetry and narrative can help a patient convey their story. Even with these tools we struggle to connect ourselves to the people around us. Having explored grief extensively, doctor-poet Glen Colquhoun implores us to recognize the ache in the people around us and to learn to simply sit with someone in that space, not needing to ‘fix’ their suffering4. This awareness and approach to understanding grief is vital. Grief is a messy process, but it is one which many patients must journey through. An increased awareness about the multifaceted and unpredictable nature of grief may help patients as they try to come to terms with the implications of serious disease for their lives, not only immediately, but for their loved ones and their futures. It is important that patients feel supported on the winding road towards re-establishing their sense of meaning and their ability to function normally. This is especially important considering that appropriately dealing with grief may improve health outcomes. Narrative medicine, with its focus on empowering patients and working alongside them to co-author their lives during what are often long and hard journeys, suggests that health professionals have a role to play in this process. Even if that role is learning to simply sit with a patient in their ache and patiently support them through whichever stage they may be in.

17. Ostriker A. The Crack In Everything. Pittsburgh: University of Pittsburgh Press; 1996. 18. Baier M. Baylor University; Grief stages can be likened to pinball machine workings, Baylor University Researcher says. Ment Health Wkly Dig [Internet]. 2012

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Fig 3. Compact bone (Schmorl’s stain).


Sarah Maindonald

TANGIHANGA

NERVOSA

They encircled us black leather clad Falcon at the ready

I can see her scream I hear her in the corner, curled

Necklace of bruises sped his farewell

she punches her ears gouges her wrists

Black birds circled his grave

tastes his sourness burns her mouth with bleach

he leapt, where two oceans wrestle

imprisoned in her cage of bones the hurtling violet spins her

with one squeeze of her thighs

upside down, if she squints, the light splinters

Hine nui sucked him into eternity.

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HER BRAIN Hannah Coombridge

There’s not a lot left there, the old place is barely recognizable. Cracks interrupt the vaulted ceiling while loose bricks and rubble litter the stairs. The hallway leads to unhinged doors hanging precariously ajar; wonderful playgrounds for spiders, though even they have moved on. The front room hasn’t been used in years. Once-crimson drapes are pinned back, their dull tones offsetting untouched china preserved behind their stained-glass shield. A prized mahogany chaise proudly holding centre-stage lies abandoned, forgotten. Its moth-bitten upholstery sagging with the weight of nothing. I am entranced, marvelling at the scene. Dust coats every surface and still cannot find place to rest. The air is thick with it dancing in the soft light penetrating dirt-smudged panes of glass. Something bangs in the room across the way and the window is exposed. Stripped bare of wooden shutters whose dry and fragile frames, beaten and battered by time, have lost grip. As I sit here contemplating what lies before me; I am overwhelmed by the magnitude of it all. White is the colour of the day; not Spanish white, Cerebral Infarction white. But somehow through the grimy passage a tiny flicker of recognition lights up her eyes. It’s faint, and fleeting, but it’s enough to know that she hasn’t left yet. Not yet

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Not Standing Upright There

Paul Stanley Ward

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PAUL STANLEY WARD

I’ve always had a thing for birds. I grew up in Marton. The farming service town’s slogan touted it as ‘the hub of the Rangitikei’—letters radiating from the spokes of a settler’s wheel hub—lest it wither in isolation, bypassed by SH1. But it felt like the edge of the world. We used to grip electric fences for a buzz. In the 80s, its suicide rate made getting out alive an accomplishment. The escape offered by flight was seductive—kahu hawks circled high over the plains, but flight wasn’t necessary to the birds’ appeal. To this small town cop’s son, it was their freakiness that seduced: birds were my Bowie. A school lesson that stood above the Ewoks and E.T. was on poet Allen Curnow’s iconic moa. In 1943 Curnow remembered regarding a moa skeleton in Canterbury Museum as a boy. The reconstruction of the extinct big bird with its 3m+ tall ‘Guinness Book of Records’ height provoked Curnow: ‘Not I, some child, born in a marvelous year ... will learn the trick of standing upright here.’ Curnow’s moa was given literal meaning for me as an adult: I was working in Venice, Los Angeles, at the beginning of the 21st Century and having trouble standing upright there. It wasn’t the drive-by shootings, it wasn’t the record drought, it wasn’t even the earthquakes, or the Burning Man parties. It was the concrete that was the problem. Out of the blue, I’d passed out twice. The first time was a hungover Sunday. I’d walked down to Venice Beach for a body surf. I dried off on the grass by the roller derby; feeling the sun’s warmth on my lids, eying the boardwalk’s hippy Pynchon heroines, dreamcatcher spruikers and that roller-blading guitarist from the 90s NZ TV ad for chocolate milk (it was like seeing Maui in the flesh). On standing, I felt my heart hold back a beat. My gyroscope went wonky and my legs crumpled like a marionette with the strings cut. A skater rolled over to help me up. I was producing for a Discovery Channel reality TV show. I was in my mid-20s and employed in ‘the entertainment industry’. It was a vague box tick. I felt OK about it because the concept was about achieving dreams rather than fetishizing human frailty (the show lasted a season). ISSUE 01

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The second fade-to-black happened after I filmed a story about a kick-boxer from the hood, who now trained celebrity clients at his Venice gym. The boxer’s tele-dream was to build a ring for needy kids in South Central, and we were picking up shots to emphasise the ‘Rocky’ arc. A boxer beat a ‘1-2-3’ combo on a punching bag. A metallic ‘pop pop pop’ echoed it outside. Thirty metres away on the rim of the Venice Circle, a black kid lay on the tarmac. Blood seeped onto the concrete with CGI fluidity. When released from the police cordon, we drove down to South Central, near Watts Towers; we were late to interview the boxer’s childhood neighbours. Outside the police station we filmed the ex-leader of The Crips gang: ‘Kids here are lucky to get to your age. Growing up here is like living in a war zone.’ On cue, gunshots rang out blocks away, and squad cars spat out of the garage. Amid the sirens, an XXL bee hovered above a shrub like a detail in a Sergio Leone western. Looking closer, I saw it was a hummingbird (my first)—manic wing-beat, honeysucker bill, oil-slick iridescent in the sun. That night, I returned to Santa Monica to debrief with my friend Anya, who was waitressing at Casa Del Mar, ferrying cocktails to stars. Later we watched ‘21 Grams’, and pondered guns, the size of popcorn servings, and the weight of the soul. In the carpark’s concrete geometry I felt woozy trying the door handle of Anya’s wide-beamed station wagon. My eyes rolled and my gut lurched. The door took my weight and I kept the swoon discrete, as Outkast shook it like a Polaroid picture on the stereo. The ‘spells’ continued, and an apprehension of fainting began to creep into my LA days. A few weeks later my heart announced its presence by thumping into my throat, and I needed a lie-down on the production office floor. The lack of control piqued me. I had been reared on the Kiwi Spartan traditions of rugby and rowing. As a teenager, I imported a mail-order weightlifting guide from LA. Wellington’s northern suburb garages became Muscle Beach for a trio of teen Mr Universe wannabes. We followed the Weider System’s ‘no pain no gain’ mantra: loaded shoplifted plates, chugged Body Bulk and sculpted our bodies towards personal bests and a pose-down. Schwarzenegger was my Nietzsche, and I gained a will to power through pumping iron. I was sure my LA spells were physiological. I had insurance and I underwent a run of blood tests and MRIs that would exhaust a Quantified Self acolyte. All came back clear, with ‘heart like an Ox’ platitudes from the physician. 34

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To sweat it out I sat on a rowing machine at Gold’s Gym and I went running in Griffith Park, thinking of mountain lions, brain tumours and James Dean. Here there was no risk of fainting—even in the dusty heat—searching towards a collision of endorphins and environment to take me out of my body. I didn’t know it then but I was running from the hills of Te Whanganui a Tara. From the edge of the world, Los Angeles was one of a clutch of destinations that Air New Zealand flies to direct, tracing umbilical paths to global centres. In Aotearoa, Maori stories are drawn back with the waka to the great migration from Hawaiki. For a Pakeha New Zealander, most of our traditional stories are drawn back on a Gandalf-emblazoned 747, to Hollywood. During school holidays growing up, daytime soaps like ‘Santa Barbara’ were in loco parentis. While my more sophisticated mates yearned for Manchester or Dunedin on their teenage bedroom CD players, not I: I was ‘Born in the USA’ and had an appetite for 90s LA hair metal. Even my father’s VHS porn collection was made in LA (the Vaseline-soft sunlight and Hollywood Hills pools felt … err intimately familiar). LA should have been a homecoming, to the place where myths were made—like a classics scholar visiting Rome or Athens. ‘This is where ‘Die Hard’/‘Bladerunner’/Tupac was shot’. I met a pop star at a party (Beck), sat next to a reality star at the movies (Nicole Ritchie), and watched the Super Bowl in Orson Welles’ old house. I went on a pilgrimage to the LA intersection where Bruce Willis crashes in Pulp Fiction, and the song scoring that scene, ‘Flowers on the Wall’—‘smoking cigarettes and watching Captain Kan-ga-roo …’—wormed about in my ear: it was the same tune used to open sheep wrangling 80s Kiwi TV staple ‘A Dog’s Show.’ Bleary-eyed in the sun at a Los Feliz market I picked up a blue 1998 Teen and Miss Barstow Pageant t-shirt, and added another spell to my tally. I began to be conscious of walking on soft earth. This time the doctor skipped the tests and wrote me a prescription: ‘Lexapro’. Googling revealed: ‘generalized anxiety disorder’ and ‘depression’. Eh? My Type A ego was insulted (and the possible ‘suicidal thoughts’ side-effect was unnerving). But my Angeleno passport was stamped. This was the town of the i-Max, SelfRealization Fellowship, and Scientology. To supplement the serotonin capsule, I gnawed at a cause, so I could fix ‘it’. My school teacher Mum would’ve asked if I was ‘burning the ISSUE 01

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candle at both ends?’ Work hours were long, but I was capable and, drive-by excepted, comfortable. Was ‘it’ the ecology of denial? LA was built on the edge of the desert and tectonic plates, but the dirt was coated with concrete—even the river runs over concrete—disguised with freeways, fairways and tropical palms. Would citizens’ remains—teeth, mobiles, silicon, Doritos and crystalised Pfizer—provide clues to archaeologists of the future? I became obsessed with dams and where the water came from, and went on a field trip to the Hoover, where I stood on the edge of the massive cistern in egg-frying 100 degree heat. Was ‘it’ culture shock? But I was enthralled. LA was nothing if not fascinating. I went out wide-eyed, scoping the strip malls, waxy industry town, and under-the-bridge underworlds, expanding my horizons and all that OE guff. I didn’t know it then; but when I wasn’t gawking, I was homesick. I was flummoxed by the spells’ schedule: I could run for hours with the coyotes in the canyons, but would be felled inside an Ikea display room. A trigger was fluorescent lighting. Between the high shelving of the Silverlake 99c store my heart skipped, the sands slipped through the hourglass and I deflated on the lino. I noted the date on Santa Monica’s ‘historic’ Roy Jones house: 1894. This American city (post Chumash, Tongva, Spanish and Mexican habitation) was younger than (Pākehā) New Zealand, than Johnsonville or Geraldine. California, like New Zealand, is a new idea: recently populated with grifters who have gone west, trying to graft themselves to wilderness. In Griffith Park I saw that the Hollywood sign was just a modest-sized real estate advert. Laconic Pākehā NZ doesn’t go in much for myth-making (or prescription solutions popped out of silver foil). Official selections in a recent flag-change debate were eclipsed by a clip-art kiwi with a laser beaming out of its eye. When it comes to a song or poem to represent us on a marae, we Pākehā struggle for choices; sports terraces ring with ‘Bliss’—’forget about the last one, get yourself another”—but without booze we’re more uptight, than upright. As an inheritor of that bottled-up ‘she’ll be right’ therapy tradition, I kept my falling down secret from my LA amigos and work colleagues. A Kiwi import that was doing a better job of standing upright here was the pōhutukawa tree, whose superhero roots were cracking up Santa Monica’s sidewalks. Before I cracked the 36

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Work in progress on the new Hall of New Zealand, 1972. Auckland War Memorial Museum TÄ maki Paenga Hira

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pavement again myself, my visa expired and I found myself across the other side of the Pacific, back in Wellington. ‘Take me down to the paradise city. Where the grass is green …’ —Guns N’ Roses It’s Midwinter. Unemployed. Girlfriend wants kids. The panic attacks (that’s what they were, defined retrospectively) were replaced with a young man’s fear of commitment. Wellington was neither fast nor furious, but middle-of-the-road Middle Earth, with denizens sheltering in wooden villas from the southerly. I had come home with meagre expectations. I ran to the hills: seeking meditation via movement. Through the suburbs and the gorse’s stigmata, up to the Wind Turbine. Nothing to think about, just the bullish grunt to get above it all and watch clouds fast forward over the harbour on time lapse. (In Wellington the wind redistributes the trampolines and plastic bags like a celestial leaf blower.) The blustery rain was an embrace. Coming down Raroa Road, I stooped to tie my laces and looked down over the quaint cold town of Aro Valley. As I was pondering where the bad air gets dumped by the wind god Tāwhirimātea, bits of it pitter-pattered on my cap. It wasn’t rain, but bark chip. I looked up into the branches of a gum tree. The delinquent ringbarking a bough was a kākā parrot. It paused from its axe-man routine. I was baffled. I’d never seen the bush parrot in the city. As a kid I’d nagged my parents to take me to sanctuaries to see kākā, kōkako, tawaki, kiwi and takahē. These manu taonga were not found anywhere else; they had ancient Gondwanaland genealogy; in Don Merton’s pungent estimation they are our national monuments, our ‘Tower of London, our Arc de Triomphe, our pyramids’. I felt a kinship with the birds, with their quixotic right to exist. Like Morrissey or Bruce, Prince or Auel, they offered a wild salve to suburbia. Their evolutionary quirks made them as unique to Aotearoa as the All Blacks. In Māori myth they were born from Rangi and Papa’s interrupted love-making, imagined with rare sensuality. But they’re also passé, primitivists struggling with the rat race. 38

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Introduced predators and habitat loss had rendered many of them extinct or exiled on offshore islands. So how did the 21st Century kākā get to be here, in the Aro gum? The birds of Wellington city I knew as a university student in the late 90s were introduced rock pigeons and sparrows, emblems of any city … anywhere, mangy birds of the eaves and underpasses. But kākā? Prehistoric punks in rafters of supplejack vines sure, but not road warriors. Its only Wellington contemporaries were stuffed in a museum display. I took a key from my shorts and rubbed it between my fingers. The big rufous parrot hopped down the branch and tilted its head. With a push and flap it was on my forearm. It tried to prise the key from my grip. I was gob-smacked. Hallelujah St Francis. Bless the beasts. But this kākā was not mine to bid. Bored, it opened its wings. With a screech and a wheel-spin the kākā was away down the valley. It flashed its underwing feathers, a blaze of orange in the dawn. The Lexapro and sidewalk body-slams scudded back across the Pacific on the Antarctic southerly. Chill. I’d be alright here. I ran home past the sleepers, not fretful at all. The parrot whispered the same secret as that moa. I forgot about Chinatown and California girls, and ran towards something bigger than me. Towards Lucy, and Estella and Sylvie. I recognised a quorum of unreconstructed southern souls, working on garage projects, salt-blasted on the coast with their collars up … leaning into the wind with shining secrets hidden under their wings. I went running in Griffith Park thinking of mountain lions, brain tumours and James Dean. I didn’t know it then but I was running away from the hills of Te Whanganui a Tara. The kākā parrot told me so when I got home. I, born on the not especially marvelous cusp of Gen Y, was shown the trick of standing upright here.

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THE BODY TALKS William Sherborne

Red blood cells rush through veins. White blood cells seal cuts. Bones make fresh blood and you just walk and play with your cells and bones doing their jobs. Your brain learning and talking to neurons and you do your job.

INHERITANCE Johanna Emeney

The last thing my mother got from her real mother was a sentence: I am your mother (dressed up as a visiting aunt) then a punishment for repeating the sentence to her ‘mother’: Auntie said she is my mother— Then silence. But it was proof positive posthumous, with letters that came some fifty years later: ER/PR–Her2+ is the classification of your tumour defined by immunohistochemistry. She received that particular sentence loud and clear.

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FRIEND BEQUEST (FROM A MODERN CAD) Emily Adam I am vein I am arter I ole. They read me as they would Facebook; Fingers track my spine, Just like they scroll through the newsfeed. I can’t hear themAs no hair have I. I like to think I am thick skinned; But their ribbing (Because I appear caged) Is not gentle. Their Comments on my Profile, Cut me Strip me Preserved (In cyberspace). They are superficial, Tongue and cheek they are, But they will delve deeper To stalk my history further down: I had a heart attack asThey have come to (the) real eyes (A shin?) I am just ‘Like’ Any body

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Taking transgender healthcare seriously Alex Ker


TAKING TRANSGENDER HEALTHCARE SERIOUSLY

I am speaking from my personal experience, rather than on behalf of the whole transgender community. I acknowledge and respect that everyone has had different experiences within the healthcare system. I use the term ‘transgender’ here to encompass anyone who does not fully identify with the gender they were assigned at birth. The healthcare system in Aotearoa is failing some of its most vulnerable people. Despite the transgender community being overrepresented in homelessness and suicide statistics, our country’s lawmakers continue to dismiss an issue that desperately needs to be addressed: the need for safe and accessible healthcare for people of all genders. Transitioning should not have to feel like finding your way through a maze in the dark, but due to the current lack of understanding, funding and resources in our country, it does. Creating a safe and accessible healthcare system for people of gender minorities is imperative to prevent the needless loss of transgender lives. New Zealand is seriously underfunded when it comes to transgender healthcare. Public funding for gender reassignment surgery barely exists, and the waiting lists are endless. These surgeries take place overseas because there are no surgeons in Aotearoa who perform gender reassignment surgery under public funding. Each district health board currently follows different regulations as New Zealand does not have official standardised guidelines for transgender healthcare. This means most health professionals are working off the American standards of care, which poses a myriad of problems due to differences in cultural values and beliefs. We should not have to navigate a system riddled with paradoxes and misinformation on our own, but there is scarcely any information readily available to the public regarding medically transitioning. It is crucial that mental, sexual, general and trans-related healthcare is made available to all trans people in order to tackle the unnecessary adversity some of us face. It is worth mentioning that every person experiences Gender Dysphoria differently. Some suffer from very little, while others’ bodies are so foreign to them that they struggle to get out of bed each day. Some might feel dysphoric about certain parts of their body and may therefore want to seek medical help to alleviate these feelings. Currently, New Zealand’s healthcare system encourages a forced ISSUE 01

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way of being by assuming that everyone experiences Dysphoria in the same way. When wanting to acquire hormones or surgery, we are coerced into framing our stories in a particular way that will satisfy health professionals. On the one hand, we want to be deemed ‘transgender enough’ (however that may be interpreted) to earn the doctor’s tick of approval, but on the other, we don’t want our gender identity to be shrugged off as just some by-product of a mental health condition. Gender is fluid, and health professionals should recognise that not all trans people want to leap from one end of the gender spectrum to the other. The current healthcare system demands that transgender individuals undergo certain procedures before starting to medically transition. Some endocrinologists, for example, ask that we receive a psychological assessment before prescribing us hormones, despite this not being a mandatory requirement. These loopholes are based off binary ideas of what it means to achieve femininity or masculinity. In reality, these standards are impossible. There is no one right way, nor one way at all, to be any gender. The beauty of the trans community is that, through the exploration of our gender identities, we are liberated from binary boxes and systems. Gender is selfdetermined. It is completely okay that some people do not want to alter parts of their bodies in any way. Putting pressure on individuals to live up to expectations of what it means to be a certain gender, or sex, is unhelpful and often harmful. We are not replicants of each other, and all wish to transition in different ways and at different paces. Health professionals must start acknowledging that our identities are no more or less valid depending on how we want to transition. Throughout transitioning, we are likely to encounter a number of professionals with various skills and knowledge, including endocrinologists, GPs, nurses, psychiatrists, psychologists and surgeons. Often, we are the first, or among the first, transgender clients they have seen, so even the knowledge that transgender people exist may be news to them. Unfortunately, this puts our safety at risk and leaves us having to explain what it means to be transgender. The roles get reversed, and more time is spent educating the doctor than helping the patient. Personally, I have encountered healthcare professionals with varying degrees of awareness of transgender issues. I have been to counsellors who did not know what the acronym LGBTQIA stood for, and, after explaining in great detail how much it hurt when people used the wrong pronoun or name, continued to misgender me. Medical centres have written made-up names on my official records, and outed me in front of busy waiting rooms. I am fortunate that this is as bad as it has gotten 44

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for me; others’ experiences are far worse, and are sadly part of a recurring narrative. Far too many young people feel as though they do not have access to adequate healthcare simply out of the fear that they will not be recognised for who they are. There are many services around the country, however, that prove that it is possible to embrace gender diversity. If some healthcare professionals can do it, so can the rest. It should be mandatory for healthcare professionals across the country to be sufficiently educated on gender diversity in order to create safe and accessible healthcare for people of all genders. Having access to transgender-friendly healthcare can drastically improve individuals’ mental health, because transitioning allows our minds and bodies to align. Living in a world where gender expectations are based off sex characteristics, transgender people are often left feeling vulnerable when forced to live in a foreign body. Some people perceive gender ambiguity as a threat, resulting in stigmatisation against our community, and in some cases, physical and mental abuse. Seeking medical help is often not a choice for us, but the only means to enable us to live authentically. Approaching a medical professional requires contemplation and courage. The last thing we need, then, is for a doctor to tell us they would like more proof of our identity before they can unlock the gate. For us to be told that we need to overcome more obstacles than necessary harms people whose mental health might already be fragile due to prejudice faced in society. Bureaucratic barriers like age restrictions, legality around gender markers and requiring psychological assessments should be replaced with a system based on trust and integrity. We are as sure of our identities as cisgender people. Doctors should therefore not impede, but rather work alongside us to get to where we want to be in our bodies and minds. To our allies, friends and advocates in the healthcare system: please embrace our identities. Let us know you are willing to help us live in our real bodies. Do not make us feel like we must pass a test in order to start transitioning. Instead, get to know us. It is better that you ask what pronoun we prefer than to assume our gender based on our external appearance. Please do not question our identity. Recognise that it might not be possible to fully understand what it’s like to experience Gender Dysphoria, but stand by us and trust that who we know ourselves to be is true. We don’t expect you to have all the answers to our questions, but please be open to learning and advocating with us. The maze is ours to navigate, but you can help us by providing the light for us to see in the dark. Being transgender is far from a phase or an attention-seeking device; it is a legitimate way of being. Our bodies are exactly that; ours to live in and celebrate.

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WHEEL OF FORTUNE Greg Judkins When you go with a list of four problems But the doctor has time for just two, When you’ve scraped up his fee for a month And there’s barely any money for food How does it feel to be bound to a wheel In a life as surreal as a circus? When the bruise on your face is less painful Than the shame of which you can’t speak, When the doctor just offers you Panadol And then asks you if you still smoke How does it feel to be bound to a wheel In a life as surreal as a circus? When you ask for a letter for WINZ To repair your old washing machine, When you need an advance on your welfare And he stares at you, sighs and agrees How does it feel to be bound to a wheel In a life as surreal as a circus? When you wanted to talk of depression But the kids scream and fight in the corner, When the din makes it hard to be heard So you mention instead your sore shoulder How does it feel to be bound to a wheel In a life as surreal as a circus?

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SIMPLE FIRST AID Hannah Coombridge A Airway,

B Breathing,

C Circulation.

Airway: 0.5 occluded. Thick with lacrimal fluid that could not escape quickly enough despite its steady stream flowing at maximum capacity from both the nose and eyes. Breathing: Ragged. Choked with sobs that rack her entire body and interrupt desperate contractions of the diaphragm. Even employment of every single accessory intercostal muscle fails to sooth the horrible gasping of someone drowning in a sea too deep and dark to navigate. Circulation: Sporadic. At best. Haphazard beats cause an unnatural tide to ebb and flow around the body. I sit nervously, waiting in anticipation for the next life giving surge. Where do I begin? … I don’t, I can’t There is no guideline, no flow chart, no formula. I sit

RSI Amber Read Muscles trace memory: supinate, pronate, abduct, adduct, flex, extend. Sensate choreography. Look down; the limbs are static. Crystalline fire lurks. You’re awake, motion cripples.

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Giving sorrow words: The cathartic power of writing Sandra Arnold

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GIVING SORROW WORDS

After the 2005 bomb attack on the Piccadilly Line tube train in London, a young survivor wrote every day for a week about her experiences and feelings in an online diary on the BBC news website. Using the pseudonym ‘Rachel’, she concluded: ‘I had this overwhelming need to get the story out so everyone owned it and it wasn’t just jammed in my head, freaking me out’. Writing her story allowed Rachel the opportunity to ‘give sorrow words’, as Shakespeare put it in Macbeth, and allowed those who vicariously participated in her story the opportunity to accomplish what Aristotle referred to as ‘a catharsis of such emotions’. Pennebaker has described how narrative expression can effect catharsis in the narrator by helping to integrate thoughts and feelings about a traumatic event. However, written expression is even more powerful than verbal expression, says Bolton, as ‘it does not disappear on the breath’. It is the process of writing itself, she says, that brings clarification to the writer and ‘… brings into awareness that which we sensed but could not explain’. Writers are well aware of the connection between writing and wellbeing. Virginia Woolf wrote in her diary about having ‘no power of phrase-making’ during a depressive illness. When she felt her ability to write return she knew she was recovering. Allende says in Aphrodite that after the death of her daughter, which she documented in Paula, she lost her ability to write and entered a long period of mourning. After three years she began to dream about food and this led to her writing Aphrodite, which she calls a memoir of the senses. Through writing about food she began the journey towards recovery and reconnection to life. The most powerful writing always comes out of the writer’s own experiences. In reviewing the genres of autobiography, memoir and fiction, Jong poses the question of where autobiography ends and fiction begins and challenges the idea that there are clear separations. ‘The comforting notion that there are definite forms in literature is more a fiction than fiction itself’, she says and refers to the blurred boundaries between fiction and autobiography as ‘slide-forms’. Such ‘slide-forms’ are exemplified in the many works of fiction which draw on the personal dramas of the authors, including Virginia Woolf’s To the Lighthouse and Orlando: A Biography. Woolf intended Orlando to be the first book that crossed the boundaries of fiction and non-fiction by giving real people fictional names. In describing how she released ISSUE 01

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her grief for her parents by writing To the Lighthouse, Woolf said: ‘I suppose that I did for my parents what psychoanalysts do for their patients. I expressed some very long-felt and deeply-felt emotion. And in expressing it I explained it and then laid it to rest’. New Zealand writer Janet Frame’s novels, especially Owls do Cry, draw upon the many traumatic events in her life. In the third volume of her autobiography, The Envoy from Mirror City, she describes how she integrated these events into her fiction: ‘… although I have remodelled, changed, added, subtracted from all experiences, I have never written of my own life and feelings... I have mixed myself with other characters who themselves are a product of known and unknown, real and imagined; I have created selves but I have never written of me’. American author John Irving issued a press release with his novel Until I find You which was reported in The Press in New Zealand as: ‘… dropping the literary equivalent of what was aboard the Enola Gay. He revealed that during the past decade all those novels packed with sadness about the horrors that adults inflict on children—all those unwanted babies in The Cider House Rules, Franny’s horrible rape in the Hotel New Hampshire, the Ellen Jamesians in The World According to Garp, nutcase parents in A Prayer for Owen Meany—he was really drawing upon his own childhood experiences’. Irving says that after the cathartic time of writing Until I find You and the nine months of re-writing it in the third person, he was finally ready to let his book go out into the world. He adds: ‘… as emotionally difficult as this novel was for me, it is now very gratifying to have it behind me … I just know I won’t feel any urgent need to write about those subjects again’. Whether a piece of writing about a traumatic event is intended only for the writer’s eyes, or for sharing with readers as in Rachel’s online diary, or as fiction after the re-writing and editing process has worked the raw material into art, all such writing, by giving concrete structure to the amorphous shapes of grief, can accomplish Aristotle’s ‘catharsis of such emotions’. In writing-as-therapy, the ‘writing-out’ takes primacy over the quality of the content. However, re-writing and re-structuring can enhance the therapeutic benefit, says Robinson: ‘…it is the control which the writer exhibits over the material which is most important, his/her conception of the relationship of language to experience rather than a mechanical process of transmutation and universalisation’. He discusses the idea that the process of writing 50

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creates a reflecting place. Bolton describes this place as: ‘…a deeply creative, explorative and inventive space. It is a strenuous exercise of the imagination, when the imagination is a power at once intelligent, sensitive and constructive, importantly related to the power of healing’. The difference between writing-as-therapy and writing publishable fiction is that in the latter the material must be worked to allow the reader entry into what Nafisi describes as a space denied by reality. Thus, writing fiction demands that the writer transcend the original experience and through imagination and craft construct a story that allows readers to participate in their own inner monologues. This acknowledgement of the reader’s ‘monologue’ is expressed in New Zealand writer Fiona Farrell’s conclusion to her autobiographical novel Book book. ‘While she reads, everything co-exists: past and present and future, friends and family, the living and the dead, apple trees, doughnuts and newspapers and hens pecking about in a garden’. Fourteen years ago my young adult daughter died. In the first year of grieving I lost the capacity to write, to read or to listen to music. The year passed ‘as if there were no seasons – just a drifting,’ as one of my colleagues described her life in a desert country. It may not have been coincidence that at the end of that first year I was drawn to work in Oman, a desert country in the Arabian Gulf. My husband took a year’s leave to accompany me and we went to stay with my brother in England for a few weeks, before flying to Oman. Together, my brother and I visited the scenes of our childhood, both physically and metaphorically, our words spilling over each other as our memories surfaced. As Zimmerman writes: ‘When we lose our moorings, when we are caught in currents beyond our control, we need to step out of the maelstrom and look back. We need to retrieve images from our youth. We need to step back so we can look forward. We need to take solace in that which can be preserved – and somehow completed—by the gloss of memory’. My life in Oman included astonishment at the stark beauty of the landscape and the ability of the inhabitants to survive in one of the most inhospitable deserts on earth. I started a journal and wrote in it every day to record the characters we met, the situations we were involved in and the adventures we had. Many of the expats we met in Oman were colourful characters, such as my colleague, an Irish woman of fifty, with a mane of red-gold hair. I had not smiled for a whole year after my daughter’s death, but this woman made me laugh ISSUE 01

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so much it hurt and she fascinated me with her stories of places and situations she had been in. I wondered if I might weave her into a short story one day, but writing fiction again was, at that stage, like contemplating running a marathon with no breath. Instead, I read as much as I could about Oman and the lives of its people. Women and Community in Oman (Eickman 1984) and Behind the veil in Arabia: Women in Oman (Wikan 1982) described life in the 1970s, just as the country was developing after the discovery of oil. Similarly, Mother without a Mask (Holton: 1993) discussed the lives of women in Al Ayn, on the border of Oman. When I began teaching my classes in Muscat, I saw how different life was for the young women I taught, compared to Eickman’s, Wikan’s and Holton’s accounts of uneducated, masked women confined to the home. In an interview, Nafisi says that one of her favourite stories is Alice in Wonderland. ‘Alice shows us how curiosity, a desire to go beyond our everyday habits and routines, can open up wondrous worlds to us and give us the power to turn the most ordinary into the most extraordinary’. In Oman I often had the feeling that I had fallen, like Alice, through to the other side of the looking-glass, where ‘normal’ was a variable construct. As I tried to make sense of this in my journal, while describing the amazing lunar landscape of Oman, my pleasure in language was restored and slowly my own inner landscape began to change. The idea of using the journal as the basis for writing a travel book gradually took shape, but this soon morphed into short fiction about loss, grief and reconnection to life, some of which drew from my own experiences. Nafisi describes fiction as a window into another reality and states that ‘the ordinary pebble of ordinary life can be transformed into a jewel through the magic eye of fiction’. She says: ‘…what we search for in fiction is not so much a reality but the epiphany of truth’. The ‘epiphany of truth’ was what I sought to capture in this description of the moment of dying in a story called The Stone, later published in The Best New Zealand Fiction, 2007. ‘Beneath the hills wild horses graze in the moonlight. The lead mare lifts her head and pricks her ears. The colts and fillies stop chasing each other’s shadows. Foals stand closer to their mothers. The old ones stop grazing. They all watch the lead mare, and wait. The earth holds its breath. Beth’s pulse flutters like a moth’s wing, and is gone. I go outside to tell Vincent and Melanie and they say they know because the wind has died.’

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GIVING SORROW WORDS: THE CATHARTIC POWER OF WRITING

Sitting on top of a sand dune in the Wahiba Desert I thought of all the civilisations that had lived and died there. The desert winds had blown over the once green landscape, obliterating all traces. A year later, back in New Zealand, I thought again of the desert wind as the scorching nor’wester roared over the Canterbury Plains for a whole week. Phrases, poems and books about wind tended to find me. Jan De Blieu compares the wind to a dragon. She describes it as an organic force that binds humankind together. She goes on to state that many aboriginal cultures believe wind to be the restless spirits of the dead. The ancient Egyptians, North American Indians, and the Aztecs, all had words that simultaneously meant breath, wind and soul. I wrote stories set in New Zealand, Brazil and Oman, linked by the winds that shape the people and landscape in Canterbury, the winds that fan the fires which disfigure the Cerrado in Brazil and the desert winds that blow in Arabia, and the many ways loss, grief and reconnection to life shape the inner landscape. One of my colleagues in Oman told me that during a bleak period of her life in England she stopped by an aviation club and asked to be taken up in a glider. She said, ‘I just wanted to be flown around the sun and silence and watch the autumn from above.’ During her flight she became aware of being part of a much larger landscape and this gave her a different perspective on her situation. I remembered this image in the autumn of 2005 when I flew from Christchurch to Kaikoura in a four-seater plane. As we flew over the Canterbury Plains we could see our house below. To allow us to see it more closely the pilot did a ‘maximum rating’ turn which somehow defied gravity. The feelings of disorientation and dislocation were immense. I didn’t know where the horizon was or where ‘up’ and ‘down’ were. When he pulled out of the turn I sat frozen in terror, determined that when we landed I would get a bus back to Christchurch. However, the sky was so blue and the sea sparkled with light and I was struck by the way the Plains connected to the mountains, the rivers flowed to the sea, and the forests turned into scrub. Looking down on familiar landscapes from this new perspective was exhilarating and by the time we got to Kaikoura the idea of travelling back by bus had evaporated. It occurred to me that this flight was a metaphor for my changing perspectives as I experienced life after the death of my daughter – the times I lost my orientation, the times I was frozen with terror, the moments of insight when all the pieces fitted together. It was also a metaphor for how I was trying to shape my stories, set in countries which are separated by physical, cultural and

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spiritual boundaries, but which are connected to a larger ‘landscape’ by the commonality of the human experience. When my daughter was a child she liked me to make up stories for her, just as I’d liked my father to make up stories for me. ‘Tell me a story,’ she used to say, ‘Tell it out of your mouth’. Those stories felt more real to her than when I read her a story from a book because I often blended characters she knew with those which were fictional. Nafisi discusses the often blurred boundaries between fiction and reality and asserts that through imagination it is possible to retrieve what has been lost. Writing fiction allowed me to retrieve the lost creative part of myself and this retrieval reconnected me to life. As Virginia Woolf says: ‘Imaginative work… is like a spider’s web, attached ever so lightly perhaps, but still attached to life at all four corners.’

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GIVING SORROW WORDS: THE CATHARTIC POWER OF WRITING

WORKS CONSULTED

13. Gogol, N 1968, Dead Souls, London: J.M. Dent & Sons Ltd. Holly, M.L 1989, ‘Reflective writing and the spirit of inquiry’, Cam bridge Journal of Education, 19:71-9.

1.

Allende, I 1995 Paula, London, Flamingo.

2.

Allende, I 1998 Aphrodite, New York: Harper Collins.

3.

4. 5.

6.

14. Holton, P 1993, Mother without a Mask, London: Kyle Cathie Ltd. 15. Irving, J 2005, Until I find You, Bloomsbury, London.

Aristotle, Poetics, ‘catharsis’, The Concise Oxford Dictionary of 16. Literary Terms, Oxford University Press, 1996, Oxford Reference Online, Central Queensland University. 17.

Jong, E 1985, ‘The life we live and the life we write’, The New York Times. Lee, H 1996, Virginia Woolf, London, Chatto and Windus.

Barnes and Noble, 2003, ‘Interview with Azar Nafisi’. 18. Nafisi, A 2004, Reading Lolita in Tehran, Sydney, Hodder. Bolton, G 2000, ‘Opening the word hoard’, Journal of Medical Ethics, 19. Pennebaker, J 2004, Writing to BMJ Publishing Group. Heal, Californi, New Harbinger Publications. Bolton, G 2003, ‘Who’s speaking?’, Journal of Medical Ethics, BMJ 20. Rachel, 2005, ‘The fear is Publishing Group. leaving me’.

7.

Davis, L 2005, ‘What adults do to children’, The Press, 6 August, D4.

21. Robinson, M 2000, ‘Writing well: health and the power to make images’, Journal of Medical Ethics, BMJ Publishing Group.

8.

De Blieu, J 1998, Wind, Boston: Houghton Mifflin.

9.

Eickman, C 1984, Women and Community in Oman, New York: NY University Press.

10. Farrell, F. 2007, The Best New Zealand Fiction, Auckland, Random House. 11. Frame, J 1985, Owls Do Cry, Auckland, Hutchinson Group. 12. Frame, J 1989, An Autobiography, Auckland, Century Hutchinson.

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22. Woolf, V 1922, To the Lighthouse, London: Hogarth Press. 23. Woolf, V 1928, Orlando: A biography, London: Hogarth Press. 24. Woolf, V 1929, A Room of One’s Own, London: Hogarth Press. 25. Woolf, V 1953, A Writer’s Diary, London: Hogarth Press.

26. Zimmerman, S 2002, Writing to Heal the Soul, New York: Three Rivers Press.

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MEDICAL MIRACLES

Johanna Emeney A small sample of my mother in wax is winging its way back from the UK to be tested for faulty genes that might have got to me by other means. One day, one decade, this block (not my property, and certainly no longer her/s) might be spliced and grafted onto the spines of knockout mice and grown into a batch of tiny mothers.

DISSECTION Angela Andrews I paid no attention to her care. Didn’t think, then, about the person who laid her out, who put her away at the end of each day that much smaller. Not to mention the boat, her parched and panting desperate to drink. There’s me on the bank of the river in a crowd of onlookers. They point out something in the distance. I hold her coin behind my back.

I’d have to find that lab— perhaps, as a pensioner in animal protestor camouflage— break in and fill my pockets with little ladies atop white rodents with whom I would escape into the darkness to start my own family circus.

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SO WHAT WAS CHEMO LIKE? Heather Cameron

If I allow myself to see the thorns of this thicket bush I am in, their pink nails will grow beyond my control, and this strange stabbing world I inhabit will become all that I know, and am known by. I pace. I pace. Walking might help the toxins move through your body. I sit. I sit. You will need to rest and let the chemo do its work. I lie in the bath. Floating. Floating. My body lies just beneath the surface of this gentle sea. My mind sails beyond all that you have laid before me. The poisons sweep my landscape, attack the good, the bad and the ugly, in true heroic style. Become a flaming bush of thorns - my own thicket of hell. 3 days and it passes. 3 weeks and the mantra steadies me as I go. I welcome this healing medicine into my body. And the toxic flood begins again, as I sight the thicket world ahead. I know this place This life-saving hell you send me to with a smile and a cheery word. Please know me beyond these borders. Please remember who I am. A fervent whisper, as much to myself as to you, as I enter my thorny-thicket hell.

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PUBLIC HEALTH CAMPAIGN Erik Kennedy

With pigs and the midday sun and koalas and chlamydia, education is key. Discourage risky behaviour. Reward caution and sense. Display all the facts where they’re easy to see and consult and hope for the best. How hard can it be? Even brute intelligence can catch upon the facts, like the light on an axe. Publish the information. If they can learn to read, maybe so can we.

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SANATORIUM Wes Lee

I dreamed of a sunlounger and time. Mostly time. Time in the nurse’s long walk back from the pond. The brilliance of the stations. The brilliantine doctor, his scrape of hair and time in his eyes. His glasses that seem to reflect time back, bouncing off each mahjong tile. Silence in a room, no clocks but so much time for a blanket or that first slow walk lifting the neck, a full sun tilt. The possibility of swimming in the sea or taking a train, of a skip before stepping up to the platform.

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Contributors Elizabeth Morton is a writer and sometimes student from New Zealand. She has been published in Poetry NZ, Takahe, JAAM, Blackmail Press, Meniscus, Shot Glass Journal, PRISM: International, Smokelong Quarterly, Flash Frontier and Cordite, among other places. In her free time she collects obscure words in supermarket bags. Frankie McMillan is an award winning poet and short story writer who lives in Christchurch. She is the author of The Bag Lady’s Picnic and other stories and two poetry collections, Dressing for the Cannibals and There are no horses in heaven. Her forthcoming book, My Mother and the Hungarians and other small fictions (CUP) will be published in August 2016. Kerrin P. Sharpe’s first book Three days in a wishing well was published by Victoria University Press (VUP) in 2012. A group of her poems also appeared in 2013 in the UK publication Oxford Poets 13 (Carcanet). A second book There’s a medical name for this was also published by VUP in 2014 and VUP will also publish her third collection Rabbit rabbit’ in July 2016. Hannah Coombridge is a 5th year medical student at the University of Auckland. She enjoys writing abstract poetry and playing sports. This year she was selected for the New Zealand Women’s Ultimate Frisbee team competing in the World Ultimate Championships in London in June 2016. She always seeks to grasp opportunities which afford her a different perspective on life and its many intricacies.

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Sarah Maindonald is a woman of dual ethnicities — Fijian Indian and Pakeha. She is a teacher and counsellor and has worked with women and girls in prison and others in the world imprisoned. She loves to write to try and give voice to narratives that live in the shadows. Paul Stanley Ward received a Qantas best screenplay award for the debut short film Graffiti of Mr Tupaia. After an OE that took in an Oxford masters and producing for Discovery Channel, he was the writer for NZ series Here to Stay and doco Undercover. Ward scripted 2010 short film festival success Choice Night and 2013 short Cold Snap was selected for Venice Film Festival. He was founding editor of NZ On Screen. William Sherborne is eight years old. His teachers and his imagination inspire him to write. He has been published in Paula Green’s New Zealand Poetry Box and as an illustrator in the Toitoi CA Journal for young New Zealand writers and artists. Johanna Emeney is a tutor of Creative Writing at Massey University. With her friend Ros Ali, she co-facilitates the Michael King Young Writers Programme, as well as running other writing courses for adults and youth. Her second book of poetry will be published in April 2017 by Makaro Press. Emily Adam grew up on the Coromandel Peninsula and is in her third year at Otago Medical School. She says she is a ‘complete novice’ at poetry writing and was recently introduced to it through an elective as part of her 3rd year course.

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Alex Ker has been exploring his own gender identity for the last five years, and views his transition as an ongoing adventure. He sees gender as a puzzle and is trying his best to solve it. He is particularly interested in the relationship between gender and the body, and how individuals can challenge the gender binary through ordinary interactions in everyday life. Greg Judkins is a GP in Clendon, a high-needs part of South Auckland, and is also a medical educator for the RNZCGP. He has a love of language and communication, and dabbles in poetry and fiction writing as a long-standing hobby. Amber Read is a Kiwi writer and musician. Her writing has appeared in JOY magazine, Ritmico, and PhilNews. She is also active as a programme-note writer and pre-concert speaker. Sandra Arnold has published three books. Her short stories have been anthologised in New Zealand and overseas and her essays have appeared in several academic journals. She has a PhD in Creative Writing on the subject of parental bereavement. She won the 2014 Seresin/Landfall/Otago University Press Writing Residency.

Heather Cameron has worked as an allied health professional for over 30 years across New Zealand and Australia. Her roles have included clinical areas of counselling and social work, education, project work, management and health promotion. Her published work includes, Different but the same; young people talk about living with serious illness (Lothian, Melbourne, 1998). Heather currently works as a service development manager in regional cancer services and is herself a survivor of breast cancer, diagnosed in 2008. Erik Kennedy is originally from New Jersey, and he now lives in Christchurch. In New Zealand, his poems have appeared in Catalyst, Landfall, and Sport. He is the poetry editor for Queen Mob’s Teahouse and is on the board of Takah. Wes Lee is a Wellingtonian writer. She was the recipient of The BNZ Katherine Mansfield Literary Award, and has won a number of awards for her writing. Her poems have recently appeared in Westerly, Cordite, Meniscus, Verandah, Underneath: The University of Canberra Vice-Chancellor’s Poetry Prize Anthology, Landfall, The London Magazine, Magma, Poetry London, and NOON.

Angela Andrews is endlessly finishing a PhD thesis in Creative Writing at Victoria University, which looks at the relationship between medicine and poetry. Her poems have been published in Sport, Landfall and Best New Zealand Poems. She used to work as a doctor.

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Acknowledgements

The journal is a non-profit project made possible through the generosity of the Jacob Beck Jaffurs Scholarship and the NZMSA Student Innovation fund. All funds generated through the selling of the publication go directly back into the cost of printing the next edition. All images on the website and journal come from the histology collection of R. Sorenson and T. Clark Brelje at histologyguide.org unless stated otherwise. We thank them for letting us showcase these beautiful images.

Thanks to: Rachel Lister, Barbara Beck, Anne Else, William Linscott, Johanna Emeney, Angela Andrews, Mike Hanne, Sharon Cuzens at NZMA, Australasian College of Emergency Medicine, The Royal Australian and New Zealand College of Obstetricians and Gynaecologists, Jane Cumming, Lisa Westhaven, Paula Green, New Zealand Book Council, Graham Beattie, Auckland War Memorial Museum and all of our contributors.

Editor: Helen Ker Design: Lily Paris West

ISSN: 2463-6576

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If you would like to know more about the project or to submit your work, please write to us at: atlasliteraryjournal@gmail.com

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