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patient stories

Deborah Bowman in conversation with Leslie Jamison, author of ‘The Empathy Exams’

22 Jun, 14 | by Deborah Bowman

 

 

Join the Editor of Medical Humanities, Deborah Bowman, in conversation with Leslie Jamison as they discuss her acclaimed essay collection ‘The Empathy Exams’ and more. Leslie’s work questions how we understand each other and the concept of empathy, drawing on her time as an actor working with medical students and her own experiences of illness and vulnerability. It promises to be a fascinating evening and a rare opportunity to meet an author described by the New York Times as ‘extraordinary’.

This is a free public event, open to all and part of the St George’s, University of London series The Art of Medicine.

Details:

Date: Monday 7th July at 5.30 p.m.

Venue: Boardroom H2.5 Hunter Wing
St George’s, University of London Cranmer Terrace,
London SW17 0RE

Register via e-mail: events@sgul.ac.uk

Hope to see you there.

 

Guest Blog Post by Poet and Writer, Clare Best, Part 2: On Scars and Memories

21 Apr, 14 | by Deborah Bowman

Guest blog for BMJ Medical Humanities by Clare Best

 

Recently I’ve been thinking about cutting/editing and scars/memories. In two linked pieces for the BMJ Medical Humanities blog, I take a look at my own relationship first with knives and cutting and then with scars and memories.

 

Part two: Scars and memories

 

If I, as a former artist-craftswoman and as a writer and editor, am some kind of surgeon, then surgeons are also editors and writers. They arrange and rearrange our anatomies, cutting away what is not healthy, what is no longer required, repairing what is not working as it should. They invent and create new mechanisms and implant them into our bodies. The aim of most surgery, it seems to me, is to alleviate suffering and allow bodies and human beings to function as fully as possible. Surgeons facilitate – as far as they are able to – our wholeness. Our bodies, subjected to their hand work, become altered and edited versions of our earlier, or first draft, selves. Surgery is one agency in the mutability of human experience.

 

My own body has been revised and edited in many ways, as of course have all human bodies – by growth, by accidents, by disease, by ageing and even by self-harm, as well as by surgery of various kinds. In my case, the most dramatic revision and editing happened in 2006 when I underwent elective double mastectomy as a way of reducing my risk of contracting a hereditary breast cancer in my mother’s family.

 

I have written elsewhere about the decision-making journey leading to my surgery, as well as about the creative processes that sustained me before, during and after surgery – the creative processes which later developed into the project Self-portrait without Breasts (http://selfportraitwithoutbreasts.wordpress.com). Here, I want to think about scarring as evidence and reminder of trauma and loss. And I want to raise questions about the ways in which scars are read and interpreted – both as signs of surgery and as memorial sites.

 

The surgeon who operated on my mother was a kind and gentle man who nonetheless believed in radical mastectomy, which involved removing not only all the breast tissue but also much of the underlying muscle of the chest wall, and all the lymph nodes. Considering that the particularly aggressive nature of inherited breast cancer was not recognised in the 1970s (when my mother’s cancer was first found) she was lucky to encounter a surgeon who believed in this approach. Her radical mastectomies five years apart, following multiple primary tumours in both breasts, almost certainly gave her the additional twenty-five years of life she enjoyed until she died in her early seventies. But the resulting scars, both visible and invisible, were terrible to her. She never wanted them to be known about, let alone witnessed. She and I were very close, and yet throughout the many times I nursed her, and right up to the end of her life, she made enormous efforts to keep her morbidly scarred torso and upper arms from my sight. I saw the scars only twice, on both occasions by accident.

 

My mother was not unique in her shame and suffering. Although we now find it hard to imagine a world in which the words ‘breast cancer’ were unspeakable, that was the world my mother, and countless other women, inhabited. With the prominent outer features of their gender and sexuality invaded by disease and/or surgically removed, women with breast cancer struggled to maintain a sense of identity. But by the same token there was no language in which to talk about their loss and fear, and the scars had to remain unseen, both literally and metaphorically.

 

So taboo was this disease, in the world and in our family, that when my first cousin was diagnosed with aggressive ductal carcinoma in the mid-1990s, she had no knowledge of her aunt’s (my mother’s) experiences, even though her own mother (my mother’ sister) had also developed breast cancer. It was only when my cousin and I began to correspond about our mothers’ breast cancers that the extent of the deeper family scarring became visible and tangible. We began to read the scars and interpret our own situation, the risks we faced. We could also finally perceive the scars in our mothers’ generation as the memorial sites they were – places where loss and pain should have been respected, remembered and properly grieved, instead of turned away from and covered up.

 

The good news is that the current climate around surgical scarring is much more open. This has to be a very positive change for individuals and for society. Some of the mainstream breast cancer charities such as Breast Cancer Care are now running campaigns that address body image issues with photographs of women at ease with, and baring, their scars. The recent Under the Red Dress project has drawn a groundswell of support for making scars visible, even legible, and the project clearly links that legibility with raising awareness of breast cancer. My own work explores and extends the ways we tell the stories of our bodies; in speaking out through poetry and photographs, I speak for other women in my family and beyond.

 

But there is more work to be done. If scars are both evidence of cutting/editing and sites of memory, we are presently at risk of overemphasising the evidence whilst sometimes failing to properly acknowledge the memories. A recent statement from Judy Kneece, sent around social networking sites by the (American) National Breast Cancer Foundation, asserts that ‘Breast cancer has invaded my body, but it need not invade my spirit. There may be scars on my chest, but there need not be scars in my heart.’ Apart from the use of the stale military terminology by which all experiences of cancer seem to be set up as battles to be lost or won, the core of the message is, I think, distressing in its denial of the need to admit inner wounding and thereby begin to integrate trauma and loss. Of course the scars are in the heart as well as on the chest – how could it be otherwise, and what is wrong with that?

 

We should seek to accept the hand work – the cutting – where it is necessary, and treat with tenderness and care the consequent scars and the memories they represent. Surely this honouring of the memory as well as the scar, the material edited as well as the knife and the cut, makes the move towards true healing both more imperative and more likely.

 

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

Ayesha Ahmad: ‘Unorthodox Sufferings; The face of the man’

7 Oct, 12 | by Ayesha Ahmad

I will remember the face of the man who I had not expected to see.

In suburban Johannesburg, the soil begins to turn into a rich gold color. The soil summons an enticing depth to the earth, where as Jean-Luc Nancy (1994) writes, we find existence as the cradle between our birth and our death. From our footsteps, the ancestors rise and embody the agency of new life. There is life upon death, upon death.

And this life has a heart that is vivid; a pulsation that is energising; a sound that is lulling. The suffering grows within each person as if the heart is enlarging so not to feign life; a suffering that bleeds the brightest red to signify the liveliest dance.

more…

Ayesha Ahmad: Seminar June 20th 2012 on ‘Narrative Epileptology’ by Dr Maria Vaccarella, Kings College London

19 Jun, 12 | by Ayesha Ahmad

Dr Maria Vaccarella will present her ongoing research at an open seminar at the Centre for Health and Humanities, King’s College London.

Dr Vaccarella’s subject refers to the cultural history of epilepsy in the West, and narrative medicine applied to epilepsy care; creating a valuable insight into the interaction between health and the humanities.

The seminar will be held at 18.00-19.30 on June 20th at King’s College London (Strand Campus). All are welcome.

James Poskett: What to do with patients’ stories?

26 Dec, 11 | by James Poskett

Narrative is a hot topic in the medical humanities. It can also be bewildering. Over the years literary theory has helped to bring the relevance of patient’s stories to the forefront of medical practice. But, as Johanna Shapiro notes in her recent paper Illness narratives, critical approaches to such stories have also complicated the practical matter of listening and talking to patients.

http://mh.bmj.com/content/37/2/68.full more…

Ayesha Ahmad: “Stories are all we have”- reflecting on ‘An Imperfect Offering’ by James Orbinski

21 Nov, 11 | by Ayesha Ahmad

In ‘An Imperfect Offering’, a memoir written by James Orbinski on his travelling tales as a doctor working and bearing witness in some of the world’s most death-ridden and hostile regions, he writes of a man he met in Afghanistan who once said to him:

No scars, no story, no life. Sometimes, the best story is the space between the words – a space that is a window onto a different way of seeing. And when there are no easy answers, stories are all we have”.

more…

Khalid Ali: Film Review: Asmaa: Directed by Amr Salama: Star rating ****

3 Nov, 11 | by Deborah Kirklin

With annual World AIDS Day taking place 1 December, this new Egyptian film, which was shown at the recent London Film Festival, is very topical.

The subject of HIV in European and American cinema has of course been explored in many films (such as “Savage nights” (1992), “Philadelphia” (1993), “The Hours” (2002), and “Angels in America” (2003)). However depictions of HIV positive characters in Arab cinema have been scarce, characteristically portraying HIV patients as promiscuous sinners who deserve to be ill, or else as victims of an American conspiracy to spread HIV infection amongst young people in the Arab world. more…

James Poskett: Storytelling in the theatre

18 Aug, 11 | by James Poskett

Telling the Patient’s Story details a theatre company’s attempts to develop medical students’ case presentation skills. Workshops, covering everything from improvisation, personal monologues and body language, had a marked effect on the students, with all participants agreeing that the training improved their delivery of patient histories.

http://mh.bmj.com/content/37/1/18.abstract

So, the arts and humanities can help medical students improve their case presentation skills thereby, in theory, benefitting future patients. Sounds like convincing evidence of the value of the humanities within the medical curriculum. Everyone happy? Well, not quite. One student offered the following feedback:

“[There is] too much focus on how this relates to medicine. We will realise that later.”

more…

MASK:MIRROR:MEMBRANE-A Deborah Padfield Exhibition, London 6-16th July 2011

15 Jun, 11 | by Deborah Kirklin

Here’s one for your diary, an exhibition of images by Deborah Padfield, in collaboration with patients & clinicians at University College London Hospitals NHS Foundation Trust, entitled Can you see Pain? Anyone who knows Deborah’s work from her previous exhibition and book entitled Perceptions of Pain won’t want to miss this.

http://www.dewilewispublishing.com/PHOTOGRAPHY/Perceptions.html more…

The Drama of Medicine-All the Ward’s a Stage: 8th Annual AMH Conference, 11-13 July 2011, University of Leicester,UK

13 Jun, 11 | by Deborah Kirklin

Plans for the 8th annual conference of the Association for Medical Humanities are now well underway, with an exciting line up of papers, workshops and plenary speakers. Celebrated poet and doctor Dannie Abse will be running a session entitled Poet in a White Coat; Jed Mercurio, author of Bodies and creator of the TV series Cardiac Arrest, will speak on the Doctor as Antihero;  Professor Laurie Maguire, from Magdalen College Oxford, will explore Shakespeare’s guide to health and illness; and Matthew Alexander from North Carolina, a leading authority on the use of cinema in medical education, will begin the conference with a workshop and plenary address on this subject. more…

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