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arts in healthcare

Film Activism: Science, Art and Social Reform

30 Jun, 17 | by amcfarlane

Our Screening Room editor, Khalid Ali (Khalid.ali@bsuh.nhs.uk), interviews film director and producer James Redford.

Activism is defined as ‘efforts to promote or direct social, political, economic and/or environmental reform to make improvements in society’. James Redford, documentary filmmaker, producer, and humanitarian uses documentary filmmaking to truly earn the title of a ‘film activist’. I met him in London in May 2017 where he was promoting his latest documentary Resilience: The Biology of Stress and the Science of Hope.

Reflecting on his inspirations for the film, James explains: ‘Resilience contains disturbing information about the adverse health effects of difficult childhood experiences. If I had not encountered something we can do to offset those experiences, I would not have made that film. I would be only displaying the medical basis for bad news. We must understand the biological risks for children exposed to emotional, physical and sexual abuse, neglect, violence or mental illness in their homes.  However, if you provide that child with even one caring, responsible, consistent adult who shows them what it means to be in a loyal, stable relationship with an adult – such as a religious leader, an extended family member, an educator, a social worker, a volunteer, or a police officer with the right training – you can minimize the toxic effects of a bad environment. And that applies globally; qualities of love, compassion, care and connectivity are universal.  In the fall of 2016, I visited The Navaho Nation, an indigenous Native American nation within the USA; I observed how their religious and cultural values reduce the risk of ill health attributed to centuries of oppression and genocide.  In their religion there is an appreciation of healing through family and community gatherings and rituals that supports the mental health of the individual. Chanting religious traditions can have the same healing effect as someone with training in care and compassion. I also showed the film in Columbia, Kazakhstan, New Zealand and now in the UK, and every time I am amazed by the overwhelmingly positive reception due to its universal message’.

When I asked Mr Redford about the conception of Resilience, he stated: ‘The story began in 2012 when I made another film, The Big Picture: Rethinking Dyslexia, in collaboration with Karen Pritzker, a notable philanthropist in the USA who supports many social causes.

Karen was working with educationalists on how to support children with dyslexia but had also known about the little-known Adverse Childhood Experiences (ACES) Theory. The science was there for 15 years, but not widely known. I read the study after she sent it to me, and along with her daughter, producer Dana Schwartz, decided to make the film. The first film we made addressing the ACEs study was Paper Tigers.

It was based on the true story of a high school principal in Walla Walla Washington who employs creative methods in supporting troubled children using the principles of ACES. A year spent at the school with the at-risk teens reveals just how far patience and compassion can go in setting kids on a healthier course.’

James Redford’s interest in using film to explore important medical issues has a personal dimension. After a childhood autoimmune illness caused liver failure, James received two liver transplants in 1993. That experience led him to making The Kindness of Strangers, an interwoven story of real-life organ donors and transplant recipients. James (who prefers to be called Jamie) reflects on his self-discovery journey in hospital wards: ‘I had to go through a lot of mental and psychological tests before the transplant operation. I came to know that having the support of close family relationships was shown to reduce failure rates in transplants. That was my first realization that there is a link between what was happening in someone’s immediate family environment and its effect on someone’s physical health. In America, in the 90s, there was a myth that transplantation medicine was a mysterious world where dark things happen, people were kidnapped, and organs were taken without their consent. I acknowledge that there are black markets for organ donation, but at the same time there is also altruism in its purest form: families who, at the time of losing a loved one, find it in themselves to consent to donate the organs of that deceased loved one. I believe that human beings have it in themselves to do beautiful, charitable things. I am alive because of it. The Kindness of Strangers was embraced by doctors, health care professionals, social workers and recognized organizations. Surviving that personal journey of illness, and recovery was the inception of the James Redford Institute for Transplant Awareness.’

The Big Picture: Rethinking Dyslexia film was another story anchored in James’ personal experience. ‘My son Dylan, who is now a successful artist at 25, was diagnosed with dyslexia at a young age – he was struggling at school as his handwriting and reading did not reflect his intellect or intelligence, so he was often labelled as lazy. Luckily my wife, a life-long educator, knew how to secure the right help for him. Karen Pritzker’s daughter, Allison Schwart, is also dyslexic, and both she and Dylan agreed to discuss on camera how and where to get support and which techniques are most helpful. Assistive technology such as dragon speech, speech recognition software, and autocorrect are terrific and now widely available. Dyslexia is not a moral or character flaw- science proves that underlying anatomical brain differences are the reason for the symptoms of dyslexia. It is important to disseminate these films and show them widely in schools.’

James’ work also reveals a passion for environmental issues. ‘I grew up in a home with parents who were active environmentalists. My father, actor/director/producer Robert Redford, has been a passionate advocate for environmental protection for over five decades. After the box-office success of Butch Cassidy and the Sundance Kid my parents bought a small family resort in the Rocky Mountains of Utah to protect the land from being developed into condominium units. At the time the land had been overgrazed by sheep and the native predators – wolf, coyote, and mountain lion – had been poisoned off the land. Under the protection of my parents, the natural landscape recovered to its original glory. I produced HBO’s Mann V. Ford, a documentary that chronicles a Native American community that was poisoned by the paint waste from the Ford Motor Company. I also directed HBO’s Toxic Hot Seat, a film that looks at the efforts of the United States chemical industry to hide the health risk of chemical flame retardants.’

In order to honor my father’s environmental legacy and to pursue my own, the two of us founded The Redford Centre, a non-profit environmental media company that has been active for 10 years now in accelerating better and healthier environments for all.

In partnership with the Redford Center, I am now completing HBO’s Happening: a Clean Energy Revolution. President Trump’s decision to break our nation’s promise to support the Paris Climate Accord in no way reflects what is happening in America with clean energy. The clean energy economy is booming at the same rate of growth we saw with radio, TV, and the Internet, and I’m hoping that the film will do its part to accelerate that growth even further. With climate change, every second counts.’

Jamie summarizes his mission eloquently: ‘My films and stories discuss problems as well as offer solutions. Through my company KPJR films and The Redford Center, I have the privilege of offering hope and solutions to some of our most vexing social, environmental, and health challenges. Through film we can bring about change, we can fix things – or at least try to do them better.’

Reflections on Art, Voicelessness, and the Patient Experience

14 Feb, 17 | by cquigley

 

Emma Barnard MA (RCA)

‘Silence is not Golden’

 

‘For those who live neither with religious consolations about death nor with a sense of death (or of anything else) as natural, death is the obscene mystery, the ultimate, affront, the thing that cannot be controlled. It can only be denied’.

Susan Sontag

 

One time, a healthcare professional completely removed the artwork (that I’d made with patients) from the Patients As People exhibition stating that it depicted death. This puzzled me. I couldn’t work out where the offence had come from; the closest reference to death was a thought bubble of the words “RIP” that a patient had drawn over their portrait. That particular patient’s condition was actually relatively minor and not serious; surely the thought bubble merely reflected something we all think about when we are sitting in a hospital waiting room? Where better to contemplate one’s own mortality? GP Dr Jonathon Tomlinson says, ‘Doctors are tortured by the idea that death represents a failure of medicine and this is worsened by a punitive shame and blame culture and highlighted by mortality league tables.’ Medicine has a great deal to offer, and prolonging life is not the only item on the agenda. To paraphrase William Osler, ‘What’s important is not simply what is the matter with the patient but what matters to the patient’.

How do you respond though when someone asks you if they’re going to die?

As artist in residence within an ENT (Head and Neck) clinical department, I have been collaborating with surgeons to explore the patient experience through art. Part of the work I do involves discussing with patients their experiences immediately after the medical consultation, where they reveal what lies behind the mask that they present to the doctor. Very often, patients are at that point trying to come to terms with their diagnoses. On one occasion, when speaking to a patient who had received a diagnosis of laryngeal cancer, to my amazement they seemed unconcerned that treatment might involve removal of their larynx; their major concern was that ‘didn’t want to die’.

As someone whose work as an artist is dependent on being able to communicate both verbally and visually, I am particularly intrigued by a person’s loss of voice and how that might alter his or her life. People not only have to come to terms with having their larynx removed, using a feeding tube and learning to swallow, but they also become voiceless in the conventional sense, having to relearn how to communicate. As laryngeal cancer survivor Kay Baker states, ‘I felt as if my personality had been taken away from me because I could not express myself anymore’.

It is not the words spoken by the voice that are of importance, but what it tells us of the speaker. Its tone comes to be more important than what it tells. “Speak, in order that I may see you,” said Socrates. (1)

(Reik, 1956, p.136)

The voice is one of the most important means by which we communicate. In the words of Alice Lagaay, an academic philosopher from Bremen University:

 ‘A voice is both individual and communal: On the one hand, every human voice is unique, no two voices are ever quite the same. In this sense every voice is the signature of an individual’. (2)

 

 

Portrait photographs (which contain their drawings) of people who attend the Talking Heads group held at St Josephs’ Hospice which supports people who have had experience with laryngeal cancer.

 

The building was warm, friendly and welcoming. But in fairly familiar community-type surroundings, the sounds that I heard were not. I had been invited to present my work on patient experience to the group ‘Talking Heads,’ a support group for people who have dealt with laryngeal cancer; more often than not they are without a regular ‘voice’. Denise Redmond, having worked as a Macmillan nurse for some time facilitating the support group for laryngectomy patients, reflected: ‘If you removed the gearbox in a car then the car would have no useful function and be scrapped. Patients with laryngectomies really humble me in their ability to overcome not only a cancer diagnosis but to survive and live beyond their cancer treatment with a significant impact of treatment.  There is always a trade off with cancer treatment especially when the aim is to cure somebody. Removing the organ that lets the patient communicate, speak, sing, breathe and eat and drink which are normal basic functions to sustain life is debilitating holistically. It is a life-changing event’. 

‘That’s great, it looks lovely and clear now’, said the surgeon. Physically, everything looked good and how much easier it would be if illness was just about an individual’s physicality. That’s not the case, of course, the mental scars remain, exacerbated by lack of understanding from family, friends, and others, too often scared of the change in you as you speak in a way that they do not understand. Denise: ‘There are many misconceptions about “neck breathers” and they can be very isolated. I know doctors and nurses who are afraid to look after patients that have laryngectomies as they perceive the laryngectomy as difficult and complex when the patients themselves are masters of their own care’. 

Mike Papesch FRACS, an ENT Head and Neck consultant surgeon explains his viewpoint: ‘From a surgical point of view, it is very clinical…with the end goal being survival and with recognised significant social, psychological and personal impact. It is impact that may be underestimated by the patient, but it is not underestimated by the medical team looking after them. And indeed, the doctor understands the difficult choices that patients have in undergoing these treatments. Perhaps it is that the patient, in reality, has no choice as to the treatment and its impact, if they do not wish to die of the disease. The reality they face truly is this harsh. And the patient will never fully understand what it means to have head and neck surgery, until after the process. This process can take place over several months. People do make some recovery, but never return to their pre illness performance status. I would not wish this surgery on anyone, but if they needed it, I would embrace it, advise it, and undertake it willingly, knowing full well it was done as a lifesaving, albeit life changing, intervention’.

Illness isn’t something you wave goodbye to in the consultation room after your appointment or in the theatre after a surgical operation. It follows you home, it is with you while you sleep and haunts you in your waking moments. In the words of Susan Sontag ‘Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick’. Days, weeks, years, and it is still there, refusing to let go. Unlike other cancers, which to a certain degree, are invisible, this one remains in full view for all to see and because there seems to be so little knowledge on the after effects, responding to someone who has had this disease can be uncomfortable for the onlooker.

 

Of the legacy that is laryngeal cancer, two years on Kay Baker writes:

No airway

No smell

Not much taste

Eating and drinking very slow

Have to be very careful in the bath – cannot get water down my stoma

Never go swimming (would drown)

More difficult to breathe especially in very hot, cold and windy weather

My life is so different now and there have been times when I have had bad thoughts – why this cancer, why me? Not wanting to live.

 

What I don’t like is people thinking there is not a PROBLEM.

No escape – there is a constant reminder every minute of the day – as soon as I wake up, unlike other cancers.

There is no hiding place.

Silence is not GOLDEN as the song goes!

 

‘Silence remains inescapably a form of speech’. Susan Sontag

 

References

1 Reik, T. (1946) The Ritual: Psychoanalytic Studies, Bryan, D. (trans). New York: International University Press.

2 Lagaay A 2008 Between Sound and Silence: Voice in the History of Psychoanalysis Freie Universität BerlinVolume 1 (1), ISSN 1756-8226

Quotes from: http://research.ncl.ac.uk/e-pisteme/issues/issue01/contents/e-pisteme%20Vol.%201(1)%20-%20Alice%20Lagaay%20(Full%20Text).pdf

Emma Barnard MA (RCA)

Bio

Emma Barnard is a visual artist, specialising in lens-based media and sound installations. Her work deals with social commentary, seeking to highlight contemporary issues and encourage debate surrounding them. The experience Emma has gained through several years of working with consultant surgeons and their patients from various disciplines, including ENT and Psychodermatology, is now influencing the field of medical education. Her “Patient as Paper” project (co-founded with Mr Mike Papesch FRACS, ENT consultant surgeon) artwork is currently being exhibited widely in galleries, universities and hospitals in England and internationally. It has been presented at several conferences within the medical and medical humanities fields, and most recently at University College London, Medical School and in a series of presentations at Surrey University for the Department of Health Sciences. At King’s Medical School in London Emma has led a highly successful pilot project to introduce art into medical education, undertaken in conjunction with a critical care consultant and a fourth-year medical student. An exhibition of this work is planned for later this year.

@PatientAsPaper

Exhibitions:

‘Patients As People’ (work created alongside patients) – currently installed within the Department of Health Sciences, Surrey University, Guildford

More information:

https://www.facebook.com/PatientAsPaper/?ref=aymt_homepage_panel

‘A Stitch in Time’ series of works to be shown at The Lawson Practice, London at the invitation of GP Jonathon Tomlinson during February/March.

Artist page – BerlinBlue Art: http://www.berlinblueart.com/emma-barnard

 

 

Reclaiming Reflection: Creative Writing and the Medical Humanities (3)

16 Sep, 16 | by cquigley

 

 

Reminiscence Bumps: self-mythology and the landscapes of the mind

by Eleanor Holmes

 

When I think about the landscapes of the mind, I recall the undulations of the brain’s surface. The ridges and valleys of cortex, the gyri and sulci I had learnt about in my neuroanatomy classes aged nineteen. Those white plastic tubs we eased open to reveal two, pale grey hemispheres floating in straw-coloured formaldehyde. That clinical but distinctly organic smell of burnt rubber, astringency and wax. How we sliced sections of brain with something that resembled the knife my father used on home-cured ham. How surprisingly soft it was to cut.

Prior to starting my Spring School creative writing week at Newcastle University in 2014, I had read Pieces of Light: The New Science of Memory by Charles Fernyhough. It has been an invaluable source of information on the latest scientific research on memory, particularly autobiographical memory, but it has also been hugely inspirational as a piece of science writing (or creative non-fiction). Two things particularly stood out to me when reading the book and in researching this subject. Firstly, the notion that memory is random and secondly, that it is ultimately self-serving. As Charles Fernyhough states and the American writer and physicist Austin O’Malley wrote:

“Memory is a crazy woman that hoards coloured rags and throws away food.”

The randomness of memory is something that has often struck me. Why do we remember odd, apparently insignificant facts and not the things that would seem more important when looking back on our lives? Why can I recall the sandwich filling (garlic sausage) my brother threw out of the window that blocked the guttering, aged thirteen, but cannot remember the name of the actor who lodged with us? How can I remember the cigarette brand and packaging my grandmother smoked (Benson and Hedges, Silver) and a conversation we had about a TV programme aged fourteen but cannot remember any of the details of her funeral?

 Yet it is the small details, those seemingly random colourful rags that stick and then float to the surface when we recall the past, especially it seems when writing about it. It is particularly that rich period for memory from our teens to our twenties, the reminiscence bump that Charles Fernyhough writes about in Pieces of Light, that keeps emerging in my writing, whether I want it to or not.

“A British study showed that when autobiographical memories were cued verbally, there was a predictable peak between the ages of eleven and twenty-five: the well replicated phenomenon known as the reminiscence bump.”

The majority of the poems I wrote in 2014 for the Spring School fell into this verbally cued reminiscence bump. On the first day of our course, the poet Bill Herbert asked us to think about “where am I from?”, followed by “where do I identify as home?” This led to an exploration of self and belonging that I initially found hard to write about. I was born in Bristol, we moved to the Midlands when I was seven and there I stayed until I left for Nottingham University.

I disliked living in land-locked Warwickshire and didn’t manage to change this land-bound situation when I moved to Nottingham for university, but at least I had moved north. I have always been moving north, by increments, as well as edging closer to the sea. I had wanted to go to medical school in Newcastle but didn’t get an interview. I wonder whether it is really a coincidence of fate that led me to the North East (Durham initially and then Newcastle) or something that needed to happen; a kind of embodied genetic pull to this landscape next to the sea. Tynemouth is where I live now, positioned on the mouth of the Tyne and next to the North Sea with its wild surf and beaches, stretching up the Northumberland coast to Scotland like a golden thread. This is the place I am now most likely to call home.

What emerged from Bill Herbert’s class was a need to write about my birth, my mother and our at times difficult relationship. It was a theme that was to flow through all my submitted poems, along with water as the element that I most identify with. Bill also encouraged us to think of body as place, by reading an extract from Paterson by William Carlos Williams, a theme that resonated with me and the obsession I have with writing about the human body and my memories of anatomy and dissection from medical school.

It is now clear to me (after six years of pursuing a writing life alongside medicine) that when I write I don’t always decide in advance on form, I just like to write. It is later that I make a decision as to whether I am writing poetry, prose or script, when looking back over the words. Fiona Evans took our scriptwriting class mid-week and I was encouraged when she advised us not to be tied to form or structure. Her session also introduced me to Marina Carr as a playwright, specifically her play By The Bog Of Cats. As we read sections of this script it felt to me to be very poetic and suddenly the idea of scriptwriting seemed less daunting.

Learning about performance and the concept of the clown with ‘Miscreations Theatre’, and the history behind the art form with Helen Limon as facilitator, also influenced my poems, particularly the idea of embracing the ridiculous. The importance of being able to laugh at yourself I hope comes through in my writing. Black humour, said to be a medical trait but more often than not a coping strategy for the difficulties encounters of healthcare work, is something I often explore when writing about medicine and health. Too easily my writing can stray towards the subject of death; my father jokes that it is my favourite topic. It is perhaps an occupational hazard but I hope to strike a balance between being respectful of serious subjects whilst seeking out the humour inherent in most human interactions.

In William Fiennes’s class we were asked to draw a map from memory. I ended up drawing a detailed plan of my childhood home where we lived from the age of seven to sixteen, and wrote about the memories attached to this house. Here it seemed was an endlessly rich seam of childhood and teenage memories in terms of a reminiscence bump that still feels very vivid to me. I liked the idea of writing about my territory being invaded and many stories bubbled up from this exercise. I hoped it would link several themes together by highlighting an aspect of my growing up and the emergence of identity. This aspect of identity as an internalised life-story is another recurring theme in my writing, one that is so clearly linked to reminiscence bumps and the reason psychologists believe this age looms so large in people’s memories.

I am aware that much of what I’ve learned in creative writing workshops is that these small details – proper nouns, the use of all five of the senses when we write – that help to bring our writing alive. This must be linked to the way we remember. When we write we are creating a world (the world) for the reader, just as we do for ourselves when we remember the past. Memories are not stored like files in a cabinet, they are created anew each time we recall the past. We narrate our lives as serves us best at the time of recollection.

Childhood memories particularly are often recalled through collaborative acts of remembering, like a collage. I know that in a number of the poems I have written some details I’ve had to ask my mother about, as I couldn’t recall something exactly, or the name of a place or person. My mother, father and brother have helped me fill in the gaps where needed, but it is also noticeable that they do not remember everything as I do. Charles Fernyhough writes:

“The idea that the past is a story that we tell ourselves, whose vividness can be no guarantee of its authenticity, highlights our reliance on language for social acts of remembering. If our autobiographical memory system serves to create a coherent narrative of our own past, it is a system that can frequently fool us into believing stories that are not true, as evidenced by the fact that many of us ‘remember’ events that we no longer believe actually happened.”

This was the concept that I was fascinated to read about in Judith Schalansky’s beautifully realised Atlas of Remote Islands: Fifty Islands I have not visited and never will. Christy Ducker recommended this book (it’s really very beautiful, brilliant and unique) and the preface particularly intrigued me:

“The absurdity of reality is lost on the large land masses, but here on the islands, it is writ large. An island offers a stage: everything that happens on it is practically forced to turn into a story, into a chamber piece in the middle of nowhere, into the stuff of literature. What is unique about these tales is that fact and fiction can no longer be separated: fact is fictionalised and fiction is turned into fact.”

I think everything I write tends to start out as an exploration of autobiographical memory that I then run with, to a greater or lesser degree. Christy Ducker invited us to think of a place that we were experts on, then asked us to put someone into that environment who had no knowledge of it. This was the inspiration for My Mother Visits the Dissection Room, a blend of factual information in terms of place (the dissection room I remember from medical school and that I have lately re-visited) and my knowledge of my maternal relationship that ended up as a poem about an imagined scenario that incorporated all of these elements.

 

My Mother Visits the Dissection Room

by Eliot North

 

She said she wanted to go there.

So I pulled some strings,

read her the rules.

“Sensible shoes?” she said.

“Yes Mother. Plus clothes

you don’t mind ruined.

Fixers, they don’t wash out.

The smell will get you,

but not of death. More chemicals

like wax and rubber.”

But my mother, being my mother

didn’t seem to mind.

Walked right up to the

plastic head,

stuck her hand inside.

“You won’t even know

I’m here,” she said.

Pulled on a dark-blue lab coat.

Watched closely

as I unzipped the body bag,

revealed cavities and cages.

Stood on tiptoes to peer inside,

scribbled in her notebook.

So I placed a stool

three feet away;

her territory and mine.

When the students filed in

they looked at her,

the older woman with colourful shoes.

Whilst I quizzed the students,

she daubed her paints.

At the end they crowded round her.

Admired her line and

brave use of colour

whilst I put the organs back.

As the students left

she called out to them.

“Call me Poppy!” she cried.

They waved from the door.

“Weren’t they interesting?

What a wonderful body,

all those nooks and crannies.”

I slung the heart in a plastic bag.

Looked at my watch

before herding her out.

Then as we went to the door

she turned round and said,

“Shall we say the same time next week?”

 

Published by Ink, Sweat and Tears on 30/08/2016 http://www.inksweatandtears.co.uk/pages/?p=11697

 

These two concepts, the unreliability of memory and the way in which we narrate our lives using a blend of fact and fiction to best suit ourselves at the time of telling, is endlessly fascinating to me. I’ve struggled at times to differentiate between what I think actually happened and what I have imagined when recalling the past. The poems I write are often a conscious blending of fact and fiction, something termed in memory research as imagination inflation (what a great term!) I don’t like to pin down my writing necessarily as creative non-fiction. I would prefer to think of my poems as fictionalised truths. In this my drive towards a cohesive narrative wins each time; I will bend the facts to meet the needs of the story I am writing. Who hasn’t done that after all?

 

Acknowledgments

This essay draws on the poetry, prose and script suggested by tutors Bill Herbert, Christy Ducker, Fiona Evans, Helen Limon and William Fiennes, as well as the following books, performances and readings:

Fernyhough, Charles, 2013, Pieces of Light: The New Science of Memory, London: Profile Books Ltd. (quoted passages p 3, p 20, p 54.)

Ishiguro, Kazuo, 1995, The Unconsoled, London: Faber and Faber Ltd.

Lively, Penelope, 2013, Ammonites and Leaping Fish: A Life in Time, London: Penguin Books Ltd. Extract read by the author at NCLA Reading: ‘Penelope Lively in conversation with William Fiennes,’ on 1/5/14.

Payne, Nick, 2014, Incognito, London: Faber and Faber Ltd. (Script) and Performance at Live Theatre, Newcastle, 30/4/1/4 followed by post-show discussion with the author, neuroscientists and clinicians working with memory disorders.

Schalansky, Judith, 2010, Atlas of Remote Islands: Fifty Islands I have not visited and never will, London: Penguin Books Ltd. (quoted passage pp. 19 – 20)

Henig, Robin Marantz, The Reminiscence Bump: People looking back on life remember their twenties best. Psychology Today, Posted October 24, 2012. Cited https://www.psychologytoday.com/blog/cusp/201210/the-reminiscence-bump 2/8/16

Reclaiming Reflection: Creative Writing and the Medical Humanities (2)

15 Sep, 16 | by cquigley

 

Creative Non-Fiction: imagination and the nature of truth

by Eleanor Holmes

 

A copy of Primo Levi’s The Periodic Table lay on my bookshelf for years, a gift from my father, one of his favourite texts. The fact that I’d not actually read it until my creative writing tutor at Newcastle University, the author William Fiennes, re-introduced me to the collection, specifically the final story Carbon, reveals how I had for most of my life considered non-fiction to be less worthy of my time than fiction.

Why had I drawn such a distinction?

I had read numerous books at medical school by Oliver Sacks, such as The Man Who Mistook His Wife for a Hat and more recently Hallucinations. These books, it turned out, definitely fell under the banner of creative non-fiction. On the one hand they could be considered factual science writing, but Oliver Sacks as an author seemed to be doing so much more than that. This realisation made me re-think what this genre was or indeed could be. Since taking William Fiennes’ module in 2013, my consumption of creative non-fiction has dramatically increased and shows no signs of abating.

Creative non-fiction, as I now understand it, is writing based in truth that uses literary techniques more commonly associated with poetry, prose and script. The attention to character, voice, style, shape, structure and form mark out this genre from journalism and reporting; the facts of a piece not necessarily being as important as the way in which it is written. For me, the words ‘not necessarily’ are crucial here.

The suggested reading list provided by William Fiennes surprised me in its breadth and scope: memoir, reportage, nature writing, science writing, portraits, travel writing, case studies and essays. Unwittingly, I had read more than I had expected but it had never occurred to me to ask, “What kind of book is this?”

In favouring fiction, particularly the novel, I’d often sought to escape reality and move away from my own experiences as a child, growing up, going to medical school and latterly working as a doctor. I soon noticed that in writing creative non-fiction, whether telling your own story or that of another person, the writer can leave themselves very exposed. There is something that appeals to readers when an author states ‘this happened’ – to them or to someone else. It creates a stamp of authenticity that can be quite interesting to unpick.

The criticism Jon Krakauer received after publishing Into Thin Air is a reminder of this. In telling his own story, he was also telling the story of those who had died on Everest. His book reads like a thriller, the tension created by the narrative pace is palpable, but the story was never going to be easy to write or to be without its controversies. The moral and ethical debate surrounding consent and sensitivity when writing creative non-fiction is very interesting to me, particularly as this is something I have wrestled with when I have wanted to write about my own work as a doctor, the truth of my own experiences.

Having researched the science behind memory, I now know that when we recall something, memories are created from scratch using different areas of our brain. In remembering, we create our own unique version of the truth, every single time, which begs the question “what is truth anyway?” The latest scientific research on memory, gleaned from my reading of Charles Fernyhough’s fascinating book Pieces of Light, sits quite neatly alongside the fact that creative non-fiction can often blur what has happened (fact) with things that have been imagined (fiction). This creative license and economy with the truth when telling our own stories is something we are all likely to be familiar with, writers or not. I cannot remember with perfect accuracy conversations I had at the age of ten, but I can use my imagination to fill in the gaps, thereby telling the story I want to tell.

This seemed a minefield to me when I started to write, so much so that I wrote under a pen name and still do. This name is no longer a secret, I have become more comfortable writing about my experiences as time has passed. It now acts as more of a separation of my writer and doctor roles. The professional duties I am bound by I take very seriously; those of anonymity, confidentiality and consent. But these same concerns paralysed me for many years in terms of writing about my life as a doctor and all that medicine has done to shape who I am. The subject of family I find far easier to explore than strangers, colleagues or indeed patient encounters; not that I do not also consider and respect those professional parameters when writing about my family, particularly consent, as my mother will attest to in my latest series of creative non-fiction blog posts entitled Consultations with my mother.

The two poems I’ve written and published about clinical encounters (He Blew Me A Kiss in the previous post and The Milkweed Monarchs here) are two examples of how you can blend medical science and clinical detail within a human narrative, writing from different points of view, using characterisation and voice alongside a narrative arc. Interestingly, I can’t seem to write poetry without some kind of narrative inherent in them, perhaps because I was a prose writer before I started to write poetry. It wasn’t possible to gain consent to write these poems from the persons that inspired them, so providing anonymity was very important when I considered publication; a very deliberate blurring of fact and fiction.

One writer from William Fiennes’ reading list particularly stood out for me, and that was Jo Ann Beard. We read her story Werner, and the dramatic tension she created and her poetic prose style mesmerised me. This was a piece of writing based in truth, but it was someone else’s story, that of a man called Werner who the author had read about and contacted. The way she got inside his head, however, and the use of flash backs was so effective at creating this man’s inner world as well as re-enacting the outer facts of his extraordinary escape from a burning building, that you felt you were experiencing what happened as if you were Werner himself.

What particularly struck me after reading this was “how did she achieve this?” I have since researched Jo Ann Beard and found her writing described as ‘dramatic re-enactments.’ I went on to source another essay called Undertaker, Please Drive Slow which was published in Tin House after The New Yorker declined to run it as creative non-fiction. She wrote this forward to the piece:

In December 1997, Cheri Tremble committed suicide with the assistance of Dr. Jack Kevorkian. What follows is a merging of fact with fiction: the external details of Cheri’s life and illness are as accurate as possible, gleaned from interviews with her friends and family, while the internal details – her thoughts, her memories, and what occurred after her loved ones saw her for the last time – are imagined.”

In Undertaker, Please Drive Slow she utilises flash backs to Cheri Tremble’s past and childhood, flickering memories that mark her decline from a healthy, working woman and mother through her diagnosis of breast cancer, the treatment she endures, then her terminal decline. The images she uses to convey the final circumstances of her death are free of cloying sentiment and all the more powerful for it.

This writing is however right on the edge, clearly controversial because of the subject matter and the question of ownership as well as truth, whatever we mean by this. It does however shed light on a subject that is so rarely spoken about, that of death and dying. Clearly we cannot ask the person who has died to tell us about their experience of dying, but in this extraordinary essay I feel Jo Ann Beard comes as close as possible to doing that. There is a kind of alchemy at work here, the way she pushes creative non-fiction as a genre to its very limits to explore an emotional truth that I believe would not have been possible if this had been written as fiction.

Primo Levi notes in Carbon his final essay of The Periodic Table:

The reader, at this point, will have realised for some time now that this is not a chemical treatise: my presumption does not reach so far… Nor is it an autobiography, save in the partial and symbolic limits in which every piece of writing is autobiographical, indeed every human work; but it is in some fashion a history.”

I have now finished reading The Periodic Table, a book that defies easy classification, something I now realise is a positive draw for me and that I seek to explore in my own writing. The blend of short stories, memoir and science writing, woven together by Primo Levi’s love of chemistry, his training and work in this field, his survival of Auschwitz and the horrors of the Holocaust, and his undoubted genius with words is such a moving and life-affirming whole.

BBC Radio 4 have just dramatised The Periodic Table for radio, the different chapters named after single elements from the periodic table broadcast in episodes, ranging from fifteen minutes to an hour. This provides a perfect entry point to Primo Levi’s work as well as a way in to explore this rich and endlessly rewarding genre of creative non-fiction. If you read or listen to no other essay of Primo Levi’s make it Carbon, the story of a single atom of carbon as it journeys from limestone crag to the author’s brain cell as he writes. As William Fiennes said to me it is perfection in writing, the perfect full stop.

BBC Radio 4 iPlayer: Primo Levi’s The Periodic Table, available now: www.bbc.co.uk/programmes/p040d1vz/members

 

The Milkweed Monarchs

by Eliot North

 

I was riding my favourite bike. The Chopper

with the red flag and the silver streamers on the handlebars.

Minding my own business, cruising down Beach Road

to school at Kaikoura Flat. Happened right outside the

Whale Watch Office. “Idiot tourists,” Dad said,

“never bloody look where they’re going.”

 

Don’t remember much after that. Just the pain

in my belly, the voming and that funny shaped

bruise that crept like a shadow across my skin.

“Handlebars mashed his Pancreas,” the guy said to Mum

after they airlifted me to Christchurch. Wish I could

remember the ride. They’d given me the needle by then.

 

Couldn’t understand a word when I came to; most of

the docs were from England. Got my own room

on the kids ward though, was pretty stoked at first.

Turns out nine weeks in one room can really turn you off

a place. Kept telling me I couldn’t eat and put a stupid tube

in my chest, for that pseudo-food to drip in overnight.

 

Would’ve gone mad if it weren’t for the Monarchs.

Mum and Dad bought them in from the farm,

loads of tiny ones on bunches of Milkweed. Boy were

they hungry, just ate and ate whilst I couldn’t. Got fatter

and fatter, the black and yellow stripes growing further

and further apart. They were more interested in them than me.

 

Didn’t mind though, those ugly critters. Gave most of them

names. Watched how they crawled around my room before

they tucked their tails under like upside-down question marks.

Mum said I was daft, but I knew the Monarchs would save me.

As soon as they slipped into those bright green overcoats

and changed for good, with their precious crowns of gold.

 

“Coincidence,” the docs said. I don’t reckon. My pancreas

would’ve been stuffed if it weren’t for them. When the cocoons

turned black and then transparent, I could see the orange

wings inside.  First one came out all small and wet with

a loud POP!  Like the noise my brother makes when

people kiss on TV. I knew it was my time too.

 

Just pressed the buzzer and the nurses came flying.

Pulled out the drips, blood spurting over the sheets

but I was free. Stretched my arms wide and stuffed a

Chocolate Fish in my mouth before they got near my room.

You should’ve heard the shouting but I didn’t care;

there weren’t no Pseudocyst in me no more.

 

Commended in the Hippocrates Poetry Prize NHS category 2014

http://hippocrates-poetry.org/hippocrates-prize/2014-hippocrates-prize-open/2014-hippocrates-commended.html

Published in the accompanying anthology

 

Acknowledgements

This essay draws on the suggested reading list provided by William Fiennes for his Creative Non-Fiction course at Newcastle University and the following books, periodicals and podcasts:

Beard, Jo Ann, 2002, Undertaker, Please Drive Slow, Tin House Magazine, Portland: McCormack Communications. Vol. 3, No. 4, pp 27 – 59.

Levi, Primo, 2000, The Periodic Table, Penguin Books, London. Translated from the Italian by Raymond Rosenthal.

Fernyhough, Charles, 2012, Pieces of Light: The New Science of Memory, London: Profile Books Ltd.

Cusk, Rachel, 2013, New Writing: Memoir, Newcastle: Mslexia Publications Ltd. pp 30 – 42.

Radiolab podcast: Season 3, Episode 4, 2007, Memory and Forgetting, New York: accessed 1/3/13 at www.radiolab.org.

N+1 podcast: Episode 3, 31st August 2011, Both Fish and Fowl – Jo Ann Beard, New York: accessed 16/3/13 at www.nplusonemag.com.

Reclaiming Reflection: Creative Writing and the Medical Humanities (1)

14 Sep, 16 | by cquigley

 

Poetry and Reflection: a powerful tool for learning

This post is part of a series over the next three days on the theme of Creative Writing and Medical Humanities by Dr Eleanor Holmes (pen name Eliot North).

 

 As a GP Tutor I’ve delivered seminars on the patient centred medicine (PCM) component of Newcastle University’s Medical Undergraduate (MBBS) course to 1st and 2nd year students, for the past three years. Professional reflective practice is taught and assessed across all five years of the curriculum.

The ability to reflect and learn from clinical encounters is central to medical education and continuing professional development. Delivered within a creative context, I believe written reflection can also be an important tool to foster wellbeing and resilience in healthcare students and professionals.

Working in an increasingly overstretched and under resourced system such as the NHS, in which clinician burnout and mental health problems are on the rise, the question of how we reflect on the difficult and complex nature of care is becoming ever more important to address.

Stating that the answer might be found outwith Medicine may seem heretical, but it is my belief that we need to look outwards to move forwards. The Arts and Humanities, like Health and Medicine, explore and reflect upon the human condition. What therefore can we learn from each other?

My last seminar with my first year group was entitled ‘Professional Reflective Practice 2.’ After a year of working together trust, an essential element of clinical reflection, had been built within the group. I used my own writing, a poem called He Blew Me a Kiss, as a launch point for discussion, which was published under my pen name Eliot North.

 

            He Blew Me a Kiss

 

She liked Frank, they connected

despite his expressionless face. Behind the wound-up limbs and tremor

a gentle man shone out from the mask.

 

When she visited they would share a cuppa,

chat about this and that. Do the ‘medication shuffle’;

a two-step dance they both knew well.

 

She’d heard about stem cell research.

How they’d taken swabs from patients’ skin. Growing stem cells

from skin cells in dishes, right there in the lab up the road.

 

These stem cells would then become brain cells.

Models of Parkinson’s just like Frank’s. For testing newer and better

medications and perhaps one day even a cure.

 

The last time she saw Frank it was snowing

but he insisted on accompanying her out. Standing by the gate like a sentinel

he’d wave her off that one last time.

 

Later she’d think of stem cells like kisses

blown on the winter air. The moment captured in her rear-view mirror;

A hand lifted slowly, toward a frozen face.

 

Published by EuroStemCell ‘Tales from Within: Imaginative Non-Fiction on Stem Cells,’ 2013. (Frank is a pseudonym)

http://www.eurostemcell.org/he-blew-me-kiss-eliot-north

 

I have found that reading a poem aloud, that I’ve written myself, is an extremely powerful learning tool. There are obvious medical elements I can draw out regarding Parkinson’s Disease and stem cell research, but more than that the poem makes an important statement about connectedness, communication, the complex and varied role of a doctor as well as the limitations of medical science. It speaks to students about the importance of getting to know patients and continuity of care; how embracing the humanity in an encounter can be both powerful and revelatory.

The moment captured in the poem will live with me until the day I die, reading it always chokes me up; I choose to show this emotion to my students. We as clinicians who teach, whether in seminars or on the wards and in clinics, are hugely powerful role models. By stating and showing that this encounter moved me I am by example saying, “It’s OK to show emotion.” This leads to discussions about professionalism, boundaries and clinician wellbeing linked to the evidence base that demonstrates better patient outcomes when doctors show that they are emotionally affected when breaking bad news.

I wrote this poem many years after the event, it was something that sat in my brain waiting to come out. I wish that I’d been able to share it with the man who inspired the poem but he died some years before I got it down on paper. It was a EuroStemCell competition, partnered with the Centre for Regenerative Medicine in Edinburgh that spurred me to write it.

The challenge to submit an ‘imaginative non-fiction’ poem that incorporated stem cell research brought this encounter immediately to mind, the link between stem cells and Parkinson’s a way to explore how I felt about this patient. Discussing the creative process and the fact that I write under a pen name and changed the patient’s name forms a nice link to the importance of anonymity, confidentiality and consent, as well as patient and doctor voice.

With my students I then facilitated a creative guided writing exercise on a memorable clinical encounter followed by small group work, drawing and writing Haiku. The seminar culminated in poster presentations delivered by the students to the group. The results were insightful, empathetic and moving; their use of metaphor and close observation giving authenticity to the explorations they had made of encounters with patients and carers struggling to cope with dementia, a potential diagnosis of cancer and the communication difficulties witnessed for a patient with learning disabilities, linking this to issues of capacity and consent.

As someone who uses creative outlets as a way of coping with the stresses of practicing medicine, it amazes me that the word ‘creative’ can strike fear in to the hearts of medical students and healthcare professionals alike. I believe that by embracing creativity and essentially our inner child, written reflection can be much more than a required component of assessment and appraisal. All humans have the capacity to be creative, no matter how much they protest to the contrary. The skill lies in being able to coax it out of them.

 

Acknowledgements

All of the work I’m currently doing in this area is in collaboration with Sue Spencer with whom I wrote the guided writing framework I used above with my students, influenced by reading the books and on-line resources below. We are delivering a ‘Reflection of Clinical Encounters’ workshop using creative writing methodologies in November 2016 for the Staff Development Programme, School of Medical Education, Newcastle University.

Writing Poems by Peter Sansom, Bloodaxe 1994

The Poetry Toolkit – The Poetry Trust 2010, available as a free PDF download http://www.thepoetrytrust.org/images/uploads/pdfs/Toolkit%20for%20Teachers.pdf

 

Related reading

S E Gull, R O’Flynn, J Y L Hunter. Creative writing workshops for medical education: learning from a pilot study with hospital staff. Med Humanities 2002;28:2 102104

Khaled KarkabiOrit Cohen Castel. Teaching reflective competence in medical education using paintings. Med Humanities 2011;37:1 5859

T J Collett, J C McLachlan. Evaluating a poetry workshop in medical education. Med Humanities 2006;32:1 5964

Film Review: X + Y

13 Sep, 16 | by cquigley

 

X+ Y- UK, 2014, directed by Morgan Matthews

Reviewed by Dr Khalid Ali, Screening Room Editor

 

Books, films and plays exploring the Autism Spectrum Disorder (ASD) have traditionally met with critical acclaim; ‘The Reason I Jump’ (https://en.wikipedia.org/wiki/The_Reason_I_Jump), ‘The Curious Incident of the Dog in the Night Time’ (https://en.wikipedia.org/wiki/The_Curious_Incident_of_the_Dog_in_the_Night-Time), and ‘Rain Man’, USA, 1988, directed by Barry Levinson (https://en.wikipedia.org/wiki/Rain_Man) being notable examples.

‘X +Y’ is a film in the league of cinematic outings inspired by a true story exploring ASD. Nathan Ellis (Asa Butterfield) is a young teenager who was diagnosed as a child with ASD. Following his father’s untimely death in a car accident, he rejects his mother Julie’s (Sally Hawkins) attempts to bond emotionally. Nathan’s Maths teacher in school, Mr Humphreys (Rafe Spall) recognises Nathan’s gift for numbers, and offers to mentor him in the preparations to be a member of the UK team for the International Mathematical Olympiad (IMO). After being selected to represent the UK, a trip to Taiwan forces Nathan to deal with bullying, peer pressure, as well as the woes of first love with a fellow Maths prodigy Zhang Mei (Jo Yang). Nathan starts to reconsider his priorities in life. Is bonding with numbers and calculus theories more rewarding than bonding with humans? Can he transform his teacher’s bleak views on life? Can he reconnect with his mother?

The film is based on the life of Daniel Lightwing who represented the UK in the IMO in Slovenia in 2006, and whose story was first seen in the documentary film ‘Beautiful Young Minds’ (https://en.wikipedia.org/wiki/Beautiful_Young_Minds). Being a fiction film, ‘X+Y’ deviates from Daniel Lightwing’s life story in several key areas: the IMO was held in Slovenia, and not in Cambridge, Daniel’s father did not die in a car accident, and his Maths teacher was a woman, and not a man as seen in ‘X + Y’.

The film depicts several common features of ASD (social deficits, communication difficulties, and stereotyped behaviour). As the story unfolds, the viewer is led to empathise with Nathan’s mother in her frustration to understand what is going through his head; his refusal to hold her hand at his father’s funeral, his outburst after getting a Chinese take-away with an even number of prawn balls, and his harsh remarks that she is not ‘clever enough’. Obviously one film cannot cover all issues relating to the complexity of a family’s reactions to raising a child with ASD. However, ‘X + Y’ does go a long way towards shedding a light on analysing the feelings of guilt, as well as on the self-doubt that some parents experience. Such themes were similarly dissected in more detail in the UK TV series ‘The A word’ (https://en.wikipedia.org/wiki/The_A_Word)

Through imaginative use of light and sound, the film convincingly demonstrates the phenomenon of synaesthesia, where stimulation of one sensory pathway leads to an automatic and involuntary experience in a second sensory or cognitive pathway: Nathan’s mathematical puzzles are thus transformed in his brain into shapes of bright colours. His outstanding mathematical skills make him a ‘savant’; however this gift does not bring him happiness or contentment. Nathan’s isolation is felt even amongst his peers at the Maths camp in Taiwan. Having a gift for numbers can be a curse as well as a blessing – being totally absorbed in the world of numbers alienates the ‘synaesthetist’ child from his school peers – he/she is perceived as the school nerd/geek who most kids avoid and ridicule.

With its heart in the right place, the messages that ‘X+Y’ conveys – an understanding of people who are different, promoting tolerance and empathy – are welcome. However, it risks perpetuating the notion that children with ASD have to be exceptionally talented to be accepted by society, what Nathan’s companion in the Squad team describes as ‘If you (someone with ASD) have the gift, you will be called ‘gifted but weird’, but if you don’t have a gift, you will be labelled as ‘weird’ only’.

The viewer potentially struggles with too many plots – Mr Humphrey’s problems with MS, drug addiction, and social isolation warrants an entire film alone. Nathan’s story has a happy ending, and provides a crowd-pleasing moment, but it underestimates the harsh realities lived by children and families affected by ASD. Still, it is a welcome piece of film making that is both moving and brave in its depiction of what it feels like to be diagnosed with ASD.

Address for correspondence: khalid.ali@bsuh.nhs.uk

 

 

 

Poetry Book Review – Cancer Poetry

10 Sep, 16 | by cquigley

 

Ian Twiddy, Cancer Poetry. Palgrave Macmillan, 2015

Reviewed by Sue Spencer

 

Cancer remains one of the most feared of diseases. It evokes dread in the general public and stimulates startling headlines about its insidious and destructive nature. Even as knowledge increases and cancer detection rates improve, this remains the case, despite the fact that cancer is now more treatable and curable than ever. Given this shift in experience of cancer, I had hoped that Cancer Poetry might provide an insight into how poets and poetry have helped humankind navigate this tricky terrain – a big ask I realise, but I do believe that poetry has the potential to achieve this.

I looked forward to reviewing this book. As a nurse, an educator and a writer, I am committed to improving patient experience of health care. I believe that creative approaches can be very powerful in terms of bridging the gap between patients and professionals in the clinical encounter. I am committed to Julia Darling’s project of promoting poetry within this arena. Julia’s introduction to The Poetry Cure, where she shared her own experiences of writing poetry whilst being treated for breast cancer herself, exhorts the benefits of poetry in health and illness:

 “I believe that poetry can help you make you better. Poetry is essential, not a frill or a nicety” (1)

Knowing Julia, I also know that she did not see poetry as an elitist enterprise. She created spaces where wonderful poetry could be responded to in an accessible and enabling way. However, the poetry world does have a problem with being perceived as elitist, with discussions around poetry sometimes viewed as alienating and “other worldly”. Many people I encounter do not often see the relevance of poetry to clinical practice until they actually experience its alchemy and find out for themselves how metaphor, metonym, rhythm, patterns of speech and language itself can shed light on the everyday, particularly in the context of health care practice.

I have to confess to finding Cancer Poetry a difficult read, and found myself skipping significant chunks where it did not engage me. I found the author’s sweeping generalisations and unsubstantiated comments particularly irritating. There are no references to psychological and sociological literature that might illuminate what might be “going on” in a poet’s work.

My first question relates to the inspiration behind this book. Why it was written? Was there an intellectual or emotional impetus to analyse this subject? My personal feeling is that Cancer Poetry reads as an intellectual exploration, in contrast to work such as that of Julia Darling, which, by encouraging us to confront raw emotions and to deal with contested realities, establishes the potential for poetry to help patients and professionals during demanding treatment regimes. Cancer Poetry is a dense book, with an undoubtedly rich content, but I struggled to grasp its potential within the context of improving the experiences of people living with cancer and its treatment.

The opening chapter attempts to chart the terrain, but seems to end up being more of a celebration of Paul Muldoon and his work. There appears to be an ambivalence about whether cancer should be written about and a reluctance to state a position as to whether it is a worthy subject and whether “good” poetry results. There is also a limited review of the foray of other disciplines into this subject – for example, the role of linguistic scholars and the pervasiveness of the war metaphors used to present people’s experiences of living with cancer. I disagree with the author when he states that a similar language is not used in the discourse around other conditions – we hear of ‘wars’ on obesity, people ‘battling’ neurological degeneration etc.

The opening chapter discusses high profile survivors and battlers of cancer, for example Jane Tomlinson and Lance Armstrong, but all of this misses the point that these “celebrity” patients are not typical or representative of most people’s experiences.

The chapters that follow are categorised around specific themes and this is where I found more traction and some engagement in relation to the discussion. However, I would have liked to have known why the author chose the poets that he did. After all, there is a huge body of poetry written about cancer experiences from a range of perspectives and the analysis in this book seems partial and limited. There is also little discussion of the poems in the context of the poets’ other works. It can be very narrow to discuss poems solely on the subject they explore rather than within the landscape of a poet’s other work or within a historical or cultural context. People’s experiences of cancer are often shaped by their health care encounters, cancer treatments and their side effects, relationships with health care professionals, and ongoing uncertainties around choice and prognosis. All of this must inform poetry written on this subject, yet I found myself not being able to grasp the arguments presented in Cancer Poetry.

This book represents all that I find difficult and challenging in the world of medical humanities. For me, Cancer Poetry is not an example of a melding of knowledge and theory. It is a book of literary criticism on poems written about cancer. I may be wrong, but if we want to engage health care practitioners in the merits of the humanities, to enhance their practice we need to focus less on intellectual silos and more on making connections, sharing insights, creating synergy and stimulating new thinking. I wish this book had done that.

 

Reference

  1. The Poetry Cure edited by Julia darling and Cynthia Fuller 2005 BloodAxe Books http://www.bloodaxebooks.com/

Poetry Book Review: Thinks Itself a Hawk

22 Jul, 16 | by cquigley

dsc_0288_med

Review: Thinks Itself A Hawk, Wendy French, The Hippocrates Press, 2016.

by Rebecca Goss

On June 30th this year, I headed to University College London Hospital (UCLH) Macmillan Cancer Centre to listen to Wendy French read from her new poetry collection Thinks Itself A Hawk. As I approached the revolving doors in the middle of the wide glass frontage, a woman was leaving the building via the doors’ slow spin. She was wearing a headscarf, and carrying several plastic bags of what looked like shopping or bundled belongings. She was alone. She looked tired. She looked sad. And she looked ill. I have spent a lot of time in hospitals, but I have never come close to cancer. As the doors ejected us in opposite directions it began to dawn on me where I was going, and what I might see. My naivety overwhelmed me. I thought I was going to a building about cancer, not a building that contained it.

In 2014, Wendy French became UCLH’s first ever poet in residence at the Macmillan Cancer Centre. To quote from the foreword to Thinks Itself a Hawk, French’s resulting book, ‘the residency’s intention was to extend access to poetry and the spoken word and assist with improving patients’ well-being.’ French ran weekly creative writing groups for patients and wrote her own poetry in response to her time spent at the centre.

Throughout the book there are many references to walking and movement and ‘openings’ – the paths our lives take. An early poem in the collection is titled Cancer’s Daily Walk. Cancer itself ‘will walk in the town, in the city,//enter St. Paul’s when doors are open,/will walk……where its feet take it.’ But eventually the cancer enters ‘distracted bodies/whose cells are greedy for change’ and then all routes will lead to those revolving doors. French is there to document the process of arrival as people ‘try to shake off//their fears as they shake/their coats from the rain.’ (The Waiting Game)

Cancer’s impact on daily life and family relationships is all studied here. A poignant stanza in Today’s Appointment shows how family ‘outings’ have been transformed with ‘a wave of a dark wand’. Rather than trips out with picnics the sick now carry ‘bags of medication, nebulisers/in a field of white coats.’

In an environment at times harrowing and bleak, French is able to show us the real people who live with cancer. French sees the blatant effort needed to survive – ‘blood is exchanged like currency’ – yet we can also tell French got extremely close to these people. French respects them, utterly, as do the medical staff, but French is able to give them something not always prescribed. She gives them time. ‘We sit together not talking but dawdling…’ (In the Wood). ‘She tells me that pain is unpredictable/but there’s refuge in books and music.’ (This Girl).

French accepts there is a world inside the centre, and a world outside it. Referring to a tunnelled walkway that connects the Macmillan Centre to the rest of UCLH, French writes ‘down here…time is marked differently…We know we are unique we hold our heads high/and picture the outside.’ (Because)

Illness can cut people off from the ‘real’ world, but French is keen to show that the Macmillan Centre does not just house patients. Behind its doors are patients’ relatives, clinicians, volunteers, ambulance drivers, catering staff, Kingsley the ‘concierge’ – everyone is accounted for, and illness feels less isolating as a result. I remember hearing the broadcaster Andrew Marr in a radio interview about his stroke say that illness is nothing to be ashamed of. French’s poems take the shame away from suffering by scattering light on everyone involved. In Mammogram, a witty but never crass depiction of a medical examination, we focus on a list of apologetic utterings from the clinician: ‘Unfortunately I have to ask you to put your breast here/Unfortunately this may hurt for five seconds/Unfortunately we have to do this five times’. To see the appointment from the medic’s perspective highlights issues of identity in the book. The repetitive use of ‘unfortunately’ hints at the ‘human being’ behind the façade of ‘doctor’.

The latter section of the book concentrates on the story of Zipora, aged 66 when French first met her, and suffering from aggressive ovarian cancer. Zipora died during French’s residency. Before her death, Zipora shared much about her life as a Jewish woman coming from what the book’s blurb describes as ‘the darkest days of the twentieth century’. It is a very moving sequence, interspersed with letters written by Zipora to her mother. These letters were never sent, but shared with French, and French mirrors each letter with a poetic response.

Guy Noble, Arts Curator at UCLH, writes of French’s work “It touches on the challenges faced by people living with or facing a cancer diagnosis, and reflects upon the “everyday” which perhaps many of us overlook.’ I agree with Guy’s statement, but something we also overlook is that severe illness can define a person. We have to remember that there was a whole life before illness set in. Zipora’s story is a valuable addition to the book, as we learn of such a life. Through both French’s voice, and Zipora’s, we discover a family’s lineage fractured by war, a child orphaned by the age of two and raised in a kibbutz, a marriage not always happy – it’s all survival of a different kind. French’s poems reflecting on Zipora’s story are tender, wise and considerate, and we can only be grateful French was there to record it.

Thinks itself A Hawk is a moving, candid, illuminating and necessary collection. We are drawn to look closely at illness and suffering, the poet never once shying from the awfulness of things. But there is gentleness too. Reading the book is like having French push open a door, beckon us, and with her arm around our shoulders, she tells us to look. And all the time we’re looking, French is there, watching with us. She is the poet, the observer, the chronicler and the guide.

 

 

 

 

 

 

‘I am Book’ – Clare Best

1 Jul, 16 | by cquigley

Illustrated talk for University of Kent symposium

on Artists’ Books and the Medical Humanities, on 21 April 2016

http://www.kent.ac.uk/english/research/conferences/artistsbooks.html

I had been so looking forward to this wonderful symposium devised, designed and immaculately planned by Stella Bolaki, and to seeing the exhibition of Martha Hall’s and other book artists’ work  – which is still on until 14 August  (Prescriptions Beaney House of Art & Knowledge, 21 April-14 August 2016). Then I went down with a virus the day before the symposium and lost my voice overnight. Stella very kindly delivered my talk for me and showed the images that went with the words. Here is a potted version of my talk. See some of the images at https://selfportraitwithoutbreasts.wordpress.com/2016/05/26/illustrated-talk-for-university-of-kent-symposium-on-artists-books-and-the-medical-humanities-on-21st-april-2016/

As well as being a writer, I have worked as a fine bookbinder, a bookseller, an editor and a Creative Writing teacher. Throughout my life, making books has provided me with metaphorical and physical structures within which to reconstruct versions of my self, and body.

I am Book. A bold statement, but a pragmatic one. To a great extent we are all Book. We have our narratives, we talk of turning the page, or of starting a new chapter in our lives. We shelter, disguise or hide ourselves between covers. But I think I’ve always been particularly absorbed in the idea of books, of Bookness, and today I’m going to talk about why that is so, and perhaps my sense of Bookness might suggest things about artistic identity in general.

My father was a papermaker for his entire working life. As children, my brothers and I spent our Saturday afternoons at Dartford Paper Mill, where my father was then Manager. Our lives were full of paper samples and offcuts. I wrote on them, folded them into pamphlets and made childish books out of them from my earliest years. And I was an obsessive reader. It all began with the illustrated Golden Treasury of Poetry I was given for my 6th birthday. It’s still one of my most precious belongings. I feel a primal thrill when I open it. Most of the time, growing up, I had my nose in a book.

I went on to read English Literature at Cambridge, gathering along the way a passion for print and fine books, and after university I decided to become a book maker and book doctor – I trained as a Fine Bookbinder and loved working with fine papers, cloths, marbled papers, leather, vellum, gold leaf. But after nearly wrecking my eyesight with close work (gold tooling) I was obliged to change professional direction. I went to work for Tim Waterstone in the early 1980s when his bookshops were taking London by storm. In time I moved across from the art book department at the High Street Kensington store to working with Waterstones Publishing Division, first as a researcher, then as an editor. Later I was an editor for ten years with the French publisher Gallimard Jeunesse and their English language partner Moonlight Publishing.

I can see now that up to this point I was wanting more and more to inhabit Bookness – to read, to make and bind, to edit and publish and sell – but had not yet dared to jump into the very stuff of my identity, or identities – the writing itself. And, through the writing, to uncover the reasons for my Bookness in the first place.

So I see these stages of my life, up to my early 40s, as serial constructions, deconstructions and reconstructions of different versions of myself in the world, in efforts to find out what I was and where I belonged. I was creating and exploring a kind of library showing different aspects of my identity, or indeed different identities.

Since then, the past twenty years have represented a deeper and infinitely more satisfying deconstruction and reconstruction of my self, my selves, through writing and making Books that I inhabit from the inside, outwards.

I had always written, but the pressure to ‘come out’ as a writer built up through the 1990s and beyond. The latter part of this period then coincided with another pressure in my life, that of facing head-on my high risk of contracting the genetic breast cancer in my mother’s family. The result of this confluence was my first full collection of poetry, Excisions, which has at its core the autobiographical cycle Self-portrait without Breasts.

(Here I would have read a few of these poems, alongside showing some of Laura Stevens’ photographs which were taken in two shoots, the first a few weeks before, and the second some 18 months after, my risk-reducing double mastectomy.)

 

Self-portrait without Breasts

 

Tangled hair, charcoal-socket eyes,

mouth slack after one more long night

restless on my back. This body’s fenscape,

manscaped, hills removed – the meaty joins

still livid, tight shut mouths

where distant territories were stitched

 

in touch. Blood seeps in deltas over ribs,

yellow and purple track to the waist.

You’re even more beautiful now, you say

and I believe, for though I never was, I am

explorer, seeker – I’ve travelled

and I have an ear for truth.

 

Memento

 

When you cast me, I held my breath

as the plaster set. You kept your focus,

capturing the contours of my breasts.

 

Remember that awkward fold by the clavicle,

air trapped between layers, remember

my fear – that flesh could not be cast

 

to look like flesh. But now, when I touch

the rough white woven skin, I want to quit

my body, let the twin chalk rind

 

contain my breath, while I recall a lover’s kiss,

the heat of milk-tight flesh, my newborn

trying to focus as I held him.

 

How will I remember this?

Numb flesh stapled over ribs,

my breath snagged within.

 

Making the Self-portrait poems provided me not only with a way of working through and revisioning my experience of this trauma and its many repercussions, but also with a way of reconstructing my changed body into a body of work – and, metaphorically and literally, into a Book. Excisions has proved to be a key book in my development as a writer and in my personal growth – a milestone on my artistic journey. At the level of line and stanza, as well as at the level of physical object, I used poetic form to bring new order to my altered identity and to my sense of belonging both in terms of family history and artistic inheritance.

I later put together that very solo experience of writing the Self-portrait without Breasts poems with Laura Stevens’ before and after photos (in book/pamphlet form, as Breastless).

Since then I have returned several times to the Bookish concept of collaboration – through a site-specific theatre piece called Vacant Possession co-written with Sara Clifford in summer 2015, through a multimedia project Take Me With You: the museum of friendship, remembrance and loss, with the film-maker Tim Andrews, which was launched at BSMS in February 2016, through Springlines, a project with the painter Mary Anne Aytoun-Ellis in which we are exploring hidden and mysterious bodies of water across the South of England – and through a three-way collaboration to make CELL, involving my own long poem in twelve parts, Michaela Ridgway’s drawings and Katy Mawhood’s design.

This last project, CELL, had been many years in gestation before being published in its unusual ‘almost-pamphlet’ state in 2015, and in some respects it is – of all the books I have made – the one that most closely represents, in its themes and emotional content and in its form, my own earliest sense of identity.

The poem is a retelling of the story of Christine Carpenter, a girl of fourteen who was enclosed in an anchorite cell in 1329. She requested release after more than a thousand days of living in the cell, and did come out, only to be forcibly re-enclosed when the Bishop heard of her release.

I myself was sexually abused, and emotionally ‘locked away’ as a young child. I underwent many years of isolation, silence, shame and suffering before finding my way out of the cell and into healing.

(I would then have read out parts of an interview about CELL with Kay Syrad for the most recent edition of The Frogmore Papers.)

 

Kay Syrad in dialogue with Clare Best about CELL (Frogmore Press, 2015)

 

‘KS: Getting ready to read CELL, I found myself acting rather ritualistically: I cleared the table, placed the pamphlet parallel to the edge of it, carefully removed the wrapper, studied the cover and the printed burgundy paper sleeve, eased off the sleeve and finally held the pamphlet in my two hands. Standing up throughout, I read the poem until I came to the point where, following the diagram, I was to unfold the pages in a way that creates a paper ‘cell’. There could be no rush.

 

I think this is the closest I have come to genuinely embodied poetry: knowing there is a potential space within the form, waiting for it, creating it, reading the poetry within that confined space, unfolding the structure to a flat sheet and then refolding it into its pamphlet form – these experiences seem to me quite as emotionally significant as reading the poem. Would you agree?

 

CB: With CELL, I wanted the reader’s experience of content and physical form to be especially closely bound.

 

To write the poem, I’d researched what happens to the body and mind in situations of extreme privation such as enclosure in a basic cell over this kind of period. I wanted to emphasise the changes Christine would have lived through by achieving a physical form for the work which is several different things at once (pamphlet, paper sculpture, flat printed sheet) and which suggests alternations between different states.

 

The object’s form is designed to mirror the unfolding drama described in the poetry and the drawings. Early sections of the poem can be read by turning the pages, so far so relatively normal. Then the reader discovers the ‘cell’. Next they must open the entire sheet – making the ‘cell’ vanish and freeing its imagined prisoner – in order to find and read the last section of the poem. Finally, refolding the sheet into a pamphlet is like re-enclosing Christine or even burying her. Throughout, the reader is in some way complicit in the events of the poem simply by carrying out the act of reading.

 

KS: Your crystal clear, unflinching poem lives and breathes not only the pain of its subject, Christine Carpenter, but her heart-breaking effort to justify her pain – and in this way the poem speaks to every woman who knows the cultural and mortal price of imagined or projected ‘sin’. Clare, what precipitated the writing of CELL?

 

CB: I’d started thinking about the themes in CELL when I spent some intense weeks working with male life prisoners, witnessing the damage that separation and isolation can do to a person. And I know a lot, personally, about the damage inflicted on the self by shame. Finding and retelling Christine’s story presented an opportunity to write in a focused way about the double prison of isolation and shame.

 

CELL evolved slowly over a number of years when I was working on other poems and sequences and also on a prose memoir which explores relationships between daughter and father, daughter and mother. Christine’s mother plays an important role in CELL, although we never hear her voice. There are also male figures in the poem – the priest/father figure whom Christine watches through her cell window, the real or remembered or imagined Lucifer/rapist, and the Bishop. The mother’s absence, together with the ambiguous overlapping presences of these males, points to some essential but unspoken truth about Christine’s vulnerability. Today we would probably say that she was acting out a traumatic past. I am interested in how the ‘choice’ of extreme deprivation (still) can be framed as religious cleansing.

 

But in some ways I wrote CELL blind and it wasn’t until the poem was almost complete that I realised fully what it was about.

 

KS: The pen and charcoal drawings by Michaela Ridgway (who is herself a poet) also embody a claustrophobic intensity in the way they refuse to stay within their borders, at once hiding and exposing a female body that is tender and fierce, layered, smudged (almost erased), dark or clear. Can you tell us how this extremely effective collaboration began and how it developed into what we see here?

 

CB: I was finishing the umpteenth draft of CELL and beginning to think about how to send it out into the world, when I saw Michaela’s powerful and enigmatic drawings of female nudes which she was posting on Facebook. We met and talked at length. Michaela completely ‘got’ the poem and the layers of it, plus she agreed with my aim of wanting poem and art to work independently and together – this was no illustration task.

 

We talked about how we wanted words and images to complement each other, moods and feelings to bounce around between them. From this point, our work was to whittle down the choice of drawings, discover how to sit the images within or across the confines of rectangular spaces, and figure out where to place them in relation to the poetry in order to imply both incarceration and breakout, confinement and rebellion. We also wanted some significant blank space – with only a single folding sheet this was challenging, but we managed it!

At the same time that Michaela and I were thinking about all this, we were consulting the designer Katy Mawhood, whom I had commissioned. Katy had excellent ideas for placing Michaela’s art and my words in the context of the particular pamphlet form we had decided on. For instance, Katy’s suggestion for the lettering on the cover, where the C of CELL appears like a cap over the neck of a headless female figure, was daring. Michaela loved it and so did I. In fact, that C and the entire cover design encapsulate the power of word and image working in close harness.’

To finish, I’d say that for me and for my evolving identities, the idea of Bookness carries sacramental meaning.

Books, in all their forms and in all their manifestations in my life, have been my saving and my making, my containment and my freedom, my focus, my work and my relaxation.

I made my first books with my father’s discarded paper. Later – in training to be a bookbinder – I was preparing to rescue, restore and protect my own damaged and vulnerable yet resilient substance, my own Bookness. I was drawn to bookselling and publishing because they kept me in close contact with my life blood. But writing and imagining my own Books into being has been and is for me the most faithful and true expression of my identity/ies.

I like to think of my bookbinding skills, tools and materials as interchangeable with elements of my life and creativity. I start with flat sheets, I fold and sew and cut them into books, press them in presses, cover them, decorate them, leave them under weights. Like the surgeon or the tailor – as a writer, artist and maker of books, I keep my knives sharp, my eyes clear, my needles and tape measure close to me.

As a child I reached for what was closest and I made of the materials what I could, what I had to. I have continued to do this and I will do it all my life.

 

The bookbinder

 

Pare the leather, thin the skin

where it must stretch and crease.

Then paste: the tanned flesh darkens,

 

wet and chill, fingers working

over spine and cords, into joints,

mitreing corners neat and flat.

 

Bandage the book in paper, let it

settle under weights, day after day

until the leather’s dry and tight.

 

When the time is right for finishing,

black the room, clamp the book

spine up in the beech-wood press,

 

the lamp pointing where to begin.

Hot brass letters and a vigilant hand –

an accurate blind impression.

 

Paint in glair with a fine brush,

lay on gold leaf, with level breath.

Tilt the light, shadows will reveal

 

the place to press the tool again.

Now, strike the gold – feel the title

word by word, bright in the grain.

 

Clare Best is a poet and writer with particular interests in writing body and landscape. Her poems are widely published in magazines including The Rialto, The London Magazine, Magma, Resurgence, Agenda and The Warwick Review. A chapbook, Treasure Ground (HappenStance 2009), resulted from her residency at Woodlands Organic Farm on the Lincolnshire fens. Breastless – poems from the sequence Self-portrait without Breasts with photographs by Laura Stevens – came out with Pighog in 2011, and Clare’s first full collection, Excisions (Waterloo Press 2011) was shortlisted for the Seamus Heaney Centre Award. She teaches Creative Writing for Brighton University and the Open University, and lives in Lewes, Sussex.

www.clarebest.co.uk

http://selfportraitwithoutbreasts.wordpress.com

Kay Syrad’s website: www.kaysyrad.co.uk

 

Poetry and Medicine: Prize Winners

20 Jun, 16 | by cquigley

 

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In April I attended the 7th International Symposium on Poetry and Medicine where the 2016 Hippocrates Awards were announced. A fascinating day, the programme included critiques on Philip Larkin’s The Building, Celia de Freine Blood Debts, Mary Kennan Herbert’s Skin Man series, as well as a presentation on Poetry, Psychoanalysis and Ageing, and a discussion around the evidence for the benefits of poetry for patients. Poetry readings of course dominated the proceedings, not just from winning and commended poets, but also sessions from Rafael Campo and Wendy French. A day truly rich in poetry, it left much to reflect on in terms of the potential for the genre to impact on the illness experience.

Winners for the three categories within the Hippocrates Awards are featured below. These and many other poems selected by the judges are available in the 2016 anthology.

Poems very gratefully reproduced by permission of the poets and the Hippocrates Prize.

 

2016 Hippocrates Prize for Poetry and Medicine

 

NHS First Prize

Denise Bundred (Kitchiner)

 

A Cardiologist Seeks Certainty

I spread cold gel on a newborn chest

rest the probe on creamy skin, angle

between ribs, rotate to find a heart

no larger than the tiny fist

pushing me away.

 

Two dimensions defy translation into three

as I locate chambers

amid the maze of vessels.

A millimeter of movement and the image melts

to snowstorm on my screen.

I re-trace arcs of ultrasound to relieve

the twist of doubt.

Adrenalin dries saliva as I strive to decide

whether the aorta arches

to the left or right.

 

The nurse checks the prescription

against an ampoule, initials in black ink

secure in her certainty of drug and dose.

 

The surgeon weighs my words

to determine his incision

shape his operation

as the incubator trundles towards theatre

escorting mother and the nurse.

 

I resolve inconsistencies

into diagnosis, wipe the sweat

from my hands, write my notes;

make my decision.

 

 

Open First Prize

Owen Lewis

 

At Tribeca’s Edge

This evening, I walk to the water where the Hudson opens

itself to the sea, and the sea with its rough cross-currents

is in the air and in the light—the light spectacular, clear,

illuminates the buildings of Newark across the water-way

with gold. The shimmering gold at their backs, they gather

to watch the harbor—the skiffs, prow-high, skip like kids

on a great lawn, a run-away pair braid ribbons of bridal white.

What will I tell my colleagues, gathering in a nearby auditorium?

 

I am thinking of my students, this first evening of Autumn,

young doctors eager with learning, still saddened by the sick.

The best are afraid. They’ve heard their voices tired, darkened

and hoarse. A ferry glides by, its wake spilling the embankment,

so close it seems we must hitch a ride, step in—and the light

between the distant buildings prying free, the sails opening with light.

 

 

Young Poets Prize

Catherine Wang

 

Six pills

Spread out in line like a
formal salute, phrased carefully on
the glass dining table.
Prednisolone coated in
white powder
as
bitter as a serrated edge. Mycophenolate
always stuck to my tongue,
a thick bullet. Then,
Esomeprazole and Hydroxychloroquine
coated my
insides
with chalk. I swallowed Calcium,
Vitamin D, just to ensure
that my thinning bones
would not crumble
like wet
paper.
There is nothing greater than the
drama of the human body,
its desires, indulgences.

 

Fevers and rashes. There was so
much that sixth grade
science could not
account for.
Lupus
was not a model disease, not a
display easily shown on brown
and pink plastic organs.
I embraced the
liberties of
ignorance,
deciphering my disease through its nocturnal
whispers. Pushed by the wind’s
warm muscles, I probed
the orange membranes
of streetlamps.
I
traced the moon’s breath, lingering on
the black glass of the sky.
Six pills spread out in line.
Head tilted back, I was grateful
for the silence,
for the empty taste of air.

 

Copyright  © 2016 the individual poets.

More information, including readings and excerpts from winning and commended poets, can be found here.

 

Check out the poetry and prose pages in the current issue of Medical Humanities

 

 

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