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patient stories

Neurological Disorders on Film by Catherine Oakley

16 Nov, 14 | by BMJ

Neurological Disorders on Film at the 58th British Film Institute (BFI) London Film Festival, October 2014

Film and television have long explored narratives involving neurological disorders, but have achieved only patchy success in engaging with the emotional, physical and social implications of this category of impairments. The BFI London Film Festival (LFF) has previously proven a key platform for the work for international filmmakers offering new perspectives on healthcare, chronic illness and disability, and this year – its 58th – was no exception.

Indian drama Margarita, with a Straw arrived at the LFF fresh from its premiere at the Toronto International Film Festival (4th-14th September 2014), trailing an accolade for Best Script at the Sundance Festival Screenwriter’s Lab. It tells the story of Laila (Kalki Koechlin), a teenager and student from Delhi with cerebral palsy who wins a scholarship at New York University. There, she meets young blind activist Khanum (Sayani Gupta) and their close friendship gradually develops into a sexual relationship.

Koechlin and Gupta – both able-bodied actors – prepared intensively for the physical and psychological demands of their respective roles. Koechlin spent two-and-a-half months living in a wheelchair, while Gupta received sensory training with the National Association of the Blind in India ( The casting of able-bodied actors in disabled roles continues to be a contested trend in the film industry, and in the post-screening Q&A, Director, Producer and Screenwriter Shonali Bose explained she had initially searched for disabled actors but hadn’t found anyone she felt had been right for the roles.

This debate notwithstanding, both actors turn in terrific performances as two young women struggling with the dual stigma of disability and same-sex desire; struggles which intensify when Laila returns home to her conservative family, in a country where homosexuality is prohibited by law. The concept of ‘normality’ poses continuing challenges to Laila’s emotional honesty as she explores her own identity in relation to these twin categories of ‘otherness’. Early in the film, an intimate close-up registers her consternation and discomfort as two men lift her wheelchair up a set of stairs, complaining about the inconvenience of the faulty lift. Moments like this feature occasionally, registering the insensitivity and tokenism of some perceptions of impairment, but the film’s primary focus is on Laila as a capable and charismatic individual. She is a young woman alive to the sensuality of everyday experiences, from the auditory pleasure of a crowded music gig, to the sensory gratification of a warm bath. Like most teenagers, she is also full of sexual curiosity, and these desires are strikingly visualized in a rear-view shot of her silhouetted before her bedroom window against the night sky, masturbating in her wheelchair. Bose notes that “in India, we haven’t dealt with the sexuality of the disabled, and that excited me as a film-maker”[1], and Margarita will be released there in early 2015. This commendable film is marginally compromised by its closing scenes, in which Laila’s ultimate acceptance of herself is clumsily communicated, but nevertheless offers an arresting portrayal of a vibrant and tenacious young woman, who happens to have cerebral palsy.

In British director Bryn Higgins’s Electricity, Agyness Deyn plays central character Lily O’Connor, a young woman with epilepsy searching for her lost brother. The film, supported by the Wellcome Trust and produced in consultation with the Epilepsy Society (, is the latest instalment in a long history of screen representations of epilepsy, including Cleopatra (dir. Joseph L. Mankiewicz, 1963), …First Do No Harm (dir. Jim Abrahams, 1997), The Lost Prince (dir. Stephen Poliakoff, 2003) and Zach, a Film About Epilepsy (dir. Christian de Rezendes, 2009). The physical tonic-clonic convulsions that accompany electrical over-activity in the brain have drawn interest from filmmakers since the early twentieth century, and in 2007, sociologist Professor Toba Schwaber Kerson, concerned about what she believed were stigmatizing depictions of epilepsy on screen, assembled a dataset comprising over 250 films and television series from Europe, America and Asia. She noted common themes across the sample; the portrayal of epilepsy often functioned to add moments of drama to the storyline, or to construct specific types of characters (typically insane, violent and/or victimized). According to her interpretation, many films used epilepsy “to enhance the voyeuristic experience of the film audience as they watch the actions of those having seizures.”[2] Given these tendencies, the challenge for directors seeking to depict epilepsy on film is to strike a responsible balance between conceding – and utilizing – this enduring visual fascination with seizures, and encouraging an audience to move beyond this spectacle to consider the lived experiences of those managing the condition.

Electricity is based on the book of the same name by Ray Robinson, which made use of visual forms by drawing on the conventions of visual poetry or shape poetry, in which the typographical arrangement of words is used as an additional expressive element. Some individuals with Temporal Lobe epilepsy experience ‘Alice in Wonderland syndrome’, characterized by temporary distortion of sensory modalities, and Lily’s hallucinatory episodes register the phantasmagorical nature of these perceptual phenomena. Higgins fully exploits cinema’s potential to visualize subjective experience through technical creativity; point-of-view shots from Lily’s perspective are visceral and immersive; surroundings bend and warp, and abstract close-ups of everyday objects suggest physical and cognitive dissociation. In other instances, stylized sequences depict sharp flashes of light enveloping Lily’s body, transporting both character and viewer from familiar environments into the realms of illusion. Jump cuts from one location to another – floor to bed, pavement to hospital – draw the audience into Lily’s world of amnesia and lost time. It is these innovations, in an otherwise uninspiring narrative of family drama, that suggest a promising new direction filmmakers might take in representing epilepsy on screen.


Margarita, with a Straw is showing at the Talinn Black Nights Film Festival, Estonia, on 24th, 25th and 27th November, 2014 ( and at the Brisbane Asia Pacific Film Festival, on the 6th, 12th and 14th December, 2014 ( It will be released in India in early 2015.

Electricity is showing as part of the 12th Cinecity Brighton Film Festival, 9pm on November 24th ( It is releasing in the UK through Soda Pictures on December 5th 2014.


[1] Leslie Felperin, “Margarita, with a Straw: ‘The sexuality of the disabled excited me as a film-maker'”. Thursday 23 October 2014.


[2] Toba Schwaber Kerson. “Lasting impressions of seizures and epilepsy in film and on television.” The Epilepsy Report 2 (June): 7-13. (9)


Catherine Oakley is a doctoral researcher in the Department of English and Related Literature at the University of York, UK, where her thesis investigates the interrelationship between medicine, literary fiction and early cinema throughout the period 1880-1925. She is convenor of the ‘Rethinking Disability on Screen’ symposium, to be held at the University of York in May 2015 (

The Artist in Theatre: On the Primacy of the Subjective Narrative by Jac Saorsa

8 Jul, 14 | by BMJ

Drawing Women’s Cancer explores the lived experience of gynaecological illness through a unique interrelation between art and medical science. Based in Cardiff and supported by Cardiff University and Cardiff and Vale University Health Board, the project began in 2012 as a collaboration between myself and Amanda Tristram, gynaecological surgeon. Since then it has produced two major exhibitions and several presentations both national and international.

Drawing Women’s Cancer project builds on the premise that philosophy, medical science and visual art all involve an inclusive, and often passionate form of ‘seeing’, and that they are brought into mutual relation through the equally inclusive concept of language. The concept of inclusivity here emphasises the idea that although language is the root and branch of dialogue, and indeed of narrative, neither of these phenomena are necessarily bound to the word.

As an artist and a writer, my concept of language constitutes far more than simply words, and as such it is the language of practice – and its corollary, process – that most concerns me. Consequently I understand both dialogue and narrative as practices and processes in their own right, both ‘creative’ and both profoundly and intimately immersed in experience, wherein language is evident and influential in all its forms. The Drawing Women’s Cancer project, which constitutes an in-depth exploration of experience, is therefore fundamentally and methodologically driven by a hermeneutic approach that embraces a multidisciplinary concept of language in order to delve deeply into areas of subjectivity that can often be felt impossible to express in verbal form.

Narrative language is a vital part of Drawing Women’s Cancer wherein personal narratives as related to me and transcribed either verbatim or in note form provide the foundation for the research as a whole. These are the bedrock of the experimental approach and, together with written narratives that reflect my own feelings about my encounters with women patients, and my experiences in theatre, they underpin the combination, the conceptual superimposition of word and image, verbal and visual, that is engendered through the creative process – itself unashamedly steeped in subjective experience. The creative process thus reflects and perpetuates the dialogical process that characterises my conversations with patients in a continuing dialogue between myself and drawings as I work on them. At the same time the process also responds to a further dialogue, one that speaks to my experience of the ‘Others’ experience of illness. Narrative here shakes off the strait jacket of monologue. It refuses to be confined to any prescribed spatial and temporal dimension. Narrative here becomes polyvocal and takes primacy as the vehicle by which the project as a whole continues and extends.

When a drawing is complete the story is far from over, indeed it has only just begun, and a drawing’s inherent communicative force lies in its capacity as an autonomous art object to maintain a dialogical character even beyond the relationship with its creator. As a work of art a drawing can simultaneously express and provoke emotional significance in an inter-subjective relation with the viewer, who in turn can creates his or her own narrative on ‘seeing’ in it the voices of those suffering the impact of illness, and this leads, ultimately, to the instantiation of what I want to call the meta-language, a form of communication beyond dialogue, beyond narrative and even beyond itself in terms of the expression of subjectivity. It is on the basis of narrative then, and its dialogical implications, that creative representations of the lived experience of gynaecological cancer can open up a ‘discursive space’ wherein a deeper understanding of the relation between a disease diagnosis and the overall existential impact of illness can potentially stimulate further conversations between patient and physician, between patients and their carers, and within the public arena in terms of awareness and acceptability.

So, in the true spirit of interdisciplinary practice in the Medical Humanities the Drawing Women’s Cancer project offers a direct challenge to the rationale of an uncompromising ‘art-science’ dichotomy by demonstrating that, in practice, neither can be disassociated from our understanding of humanity and the manner in which, as human beings, we engage or disengage with the society in which we are a ‘person’. Art, medical science and philosophy are all inescapably entangled here in a web of our own being and are constituent parts of the same overall human project, but visual art perhaps has the more obvious capacity to ‘bear witness’ to the trials that are often borne in the pursuance of being…in our physical enactment and psychological representation of life. Drawing Women’s Cancer is not only about disease, or medical intervention, or suffering, or the impact of illness; it is about all of these things. It is about, as Radley notes, what it feels like when ‘all sense of normality, and all the expectations of a future that accompany good health, suddenly become less real’. It is about the experience of illness, where that experience overrides all others. It is about creating a language that has the power to speak, not necessarily for the women whose personal stories are taken as the point of departure, but rather because of them, so that they may return.

For the rest of this post I would like to offer one of my own written narratives, an account of a recent opportunity to witness a gynae-oncological operation. I have attended various operations during the course of the project and all of the women who have allowed me to witness this part of their experience do so with the conviction that it will help me understand more profoundly what they are going through. Having, to borrow a term from legal channels, an ‘appropriate adult’ seems also to help sometimes as they try to deal with the natural anxieties that such an experience brings on.

Body in Flux

The image accompanying this post is a painting rather than a drawing. It is an ‘autoethnographic’ image that represents a similar operation to the one that the narrative below refers to. It serves, I hope, to demonstrate how visual language, even where there is no attempt to necessarily create an objective representation of the scene, can nevertheless communicate autonomous and coherent expressions of profound experience.

The painting is called Body in Flux. The narrative is called, simply, The Op.

Twenty minutes ago I was talking with her while she waited to be called down to theatre. She had smiled at me but it was a weak, anxious smile and there was fear in her eyes. We had a brief conversation – she seemed to appreciate the company. Hers is a difficult history, when she began to notice something was wrong she had tried to ignore the symptoms, ‘for the children’. She convinced herself it was just something minor, no need for a doctor, but she got tired of pretending she was OK and in the end she did go for help. As she lives in West Wales, she went to the local hospital and to her relief they told her there that it was nothing serious after all – ‘just abnormal cells’, nothing too much to worry about. They did however organise an appointment for here at the clinic here in Cardiff, for a biopsy. This was unusual, and even though they said not to worry, she did anyway. She worried about being in the city, she worried about her two small children at home, she worried she might die.

It is cervical cancer, quite advanced. She is to undergo a radical hysterectomy. The whole of her uterus and the surrounding tissue, the cervix and the upper part of her vagina are to be removed. The ovaries too, probably.

Reality hit hard a few weeks after the biopsy. It came suddenly, in a phone call. It was the shock! The word ‘cancer’ still makes her cry. She has no partner. She said she wasn’t ‘active in that way’ – not for ages – so she hadn’t been for Pap test for years. She had thought there was no need. She said she felt ‘stupid’ now. She is a primary school teacher; they had called her on her mobile as she was walking the kids to the classroom. They had the results of the biopsy. They told her that she had a tumour, that she had cancer. Now, here, waiting to go down to theatre, her eyes well up as she whispers the word. ‘It was the shock’, she says.

She is asleep now under the lights in the theatre. The lights are not harsh, just very strong. The huge circular structures from which they descend are acutely and disturbingly present, not just here in the room, but even more powerfully in my memory. The monstrous size of them and the pitiless, piercing illumination they provide still haunts me, despite my efforts to exorcise the horror of my own experience in the weeks that followed in paint on canvas.

I am anxious then, for her, for me, for us both. This operation is one that remains very close to the surface of my own consciousness and my presence here has psychological connotations that I cannot ignore or supplant with more rational thought, so deeply are they rooted. This is a test then to the personal limit of my focus on subjective experience. Amanda, the surgeon, knows this. She asked me when we arranged this visit, “Are you going to be OK with this one?” I felt the same way I did when she asked the very first question, the one that kick-started the whole Drawing Women’s Cancer project; she had said “Can you draw what it feels like to have gynaecological cancer rather than just what it looks like?” I knew then that I wanted to try.

Jonathon, the surgeon working with Amanda, reaches up to angle the bulbs. They are covered in their own protective ‘gloves’ so that he doesn’t burn his hands. His hands are so very important. I stand behind Amanda who is pushing paper wadding into the vagina – ‘packing’ it so that it doesn’t ‘move’ during the operation. There is so much paper left over on the floor between her feet. It is to ‘protect the excess’. The pushing, packing, continues and she says, “I pushed too hard once. I was in training and I was so scared of the consultant… we noticed that there was a lot of blood just dripping out onto the floor!”

Amanda goes to a side room to attend to the paperwork and Jonathon is left to make the first cut. Firm and certain. Vertical, from the navel to the pubic bone. He draws the diatherm slowly, painfully, through the skin of the belly and it trembles around the small part of it that is taut and stretched between his fingers. “A cut needs tension”. I am surprised that he uses a diatherm for this initial cut, deep and long as it had to be, so I ask. “Yes”, he replies, “it’s the way we do it now, but some surgeons do still use a scalpel.”

The edges of the cut sizzle and blacken. Smoke and the acrid smell of burnt flesh arise from the wound that becomes bigger, deeper as he works. He cuts down, confidently and deftly through layers of fat. My artist’s eye focuses on how the colours that move through the wound, from the skin, through the fat, to the fleshy muscle, are aesthetically beautiful in harmonious juxtaposition. First the hues of red: crimson, napthol, and the brightest perylene mingle with tiny glimpses of green and blue, the colours of shadows on the flesh, and then on through the spectrum of yellow, from the deepest cadmium to the palest, ‘prettiest’ lemon, the colours of the daffodils that are blooming outside and carry so much significance here in Wales. Cenhinen (kenHINen) means leek in Welsh, while cenhinen pedr means daffodil, or St Peter’s leek. Over the years the two became confused until the daffodil was finally adopted as a second national emblem of Wales. The cenhinen pedr then are blooming today, even as the wound is opened and the fat gives way and melts under the surgeon’s hand.

I think of Chroma, in which Derek Jarman, painter and filmmaker, extends Melville’s view that we ‘learn’ colour whilst not necessarily understanding it. It is understanding that I am seeking here, in subjective form, and in the wound as I watch it open, the red of the initial cut becomes Jarman’s ‘moment in time…quickly spent. An explosion of intensity.’ Further on, as the diatherm moves down through the soft tissuethe red ‘burns itself. Disappears like fiery sparks into the gathering shadow’. Jarman imagined four stages distinguishable in alchemy: the blackening of MELANOSIS, the whitening of LEUCOSIS, the yellowing of XANTHOSIS and the reddening of IOSIS. For me they appear here, but in a different order as I watch the diatherm cut beyond borders, deeper into the body, opening up and invading its private, once autonomous spaces. I feel the sting, but as Jarman says, Painters use red like spice’.

Amanda is back. She brings more even wadding to ‘mop up the excess’. The excess: ‘an amount of something that is more than necessary, than is permitted, or is desirable’. Excess here then, even beyond the metastasising cancer that in itself is excess to the normal cell structure.

I stand on a stool, watching as Jonathon cuts deeper into the muscle. The rectus abdominis yields to the unrelenting diatherm and allows him access to the peritoneum and the abdominal cavity. There it is, the uterus, itself now become ‘excess’. Amanda holds it in her hand. “Look” she says as she gently lifts it towards me, “and here are the ovaries”.

Fat, organs, tissue, all spill over the edges of the now gaping wound. Colours mingle at all levels of the ‘warm’ scale. I am shocked – no, not shocked – more bemused to witness what appears as a mess, a fluid ‘jumble’ of organs that belies the naïve impression that I now realize I have always held that inside we are very orderly and self-contained. Art takes precedence over science here as the boundary between order and disorder becomes confused. Either way the relationship between the two is here emphatically demonstrated through the idea of structure, the structure of the body in this case, which becomes simultaneous with function through the overall concept of process.

Jonathon and Amanda push the organs around with their hands, bullying them into compliance as they try to force them into the chest and pelvic cavities in order to isolate the uterus. But the organs keep spilling back out as if defending, even nurturing the one that is the object of attention. Yet more wadding is pushed in to hold back the tide, up into to the chest and down into the pelvis. Finally, with his arm up to the elbow inside the passive form Jonathon, like Canute, pushes and shoves with a physical force that promises a painful recovery. I am stunned by the seeming violence of it all, the brutality, the deeply and bloodily visceral reality of scene. The edges of the wound are pulled wider open with clamps that grasp the bloodied flesh and become bloodied in their turn. Now, the diatherm, held lightly first in Jonathon’s hand, then in Amanda’s probes and cuts on respective sides of the pelvic cavity, now an empty space devoid of organs and ‘excess’, save the hapless uterus, the one, which is soon to become the other. It sits isolated, bounded by smooth, ‘slippery’ walls that shine and appear translucent and yet opaque at the same time. It looks so small, so vulnerable under the threat of the diatherm, and the ovaries, white and tiny, are hiding, sheltering, in the darkness of the void.

The violence of the procedure is salutary in terms of my understanding. The pushing, the shoving, the manipulation of the bodily structures and organs, bloodied tools that are first discarded, then retrieved, then put into service to cut, to staple, to open and to close, all this is played out in front of me in sanguine ritual. The same blood pools in the crevices on the body and on the floor at Amanda’s feet, small bits of the flesh that it once made red are thrown up onto the green sheet, or down onto the floor. This is not clean, not clinical; this is raw, visceral, almost primeval. It feels… it feels. This is the unadulterated, non-sugar-coated authenticity of surgery; the cutting, the slicing, the pushing and the pulling, the packing, the mopping up… and it is all the raw bloodiness of real flesh, real wounds; nature rent and protesting. The body, once a closed space of quietude and privacy, now wide open, stretched, clamped and ‘mined’ for the tumours that threaten its very existence as they create of the acting Self (that part of being human which here, in this theatre, is absent) Sontag’s ‘non-self’.

I draw nearer to see as best I can while careful to avoid any contact with the green sheet that protects the human being who has become subject to – or is it object to –this therapeutic violation. Standing beside Amanda, I have a clear view of how she works, now with force, now with gentleness, but always with dominance. The body submits. Once the surface and the underlying defences have been breached there is little to resist the relentless subjugation of its autonomy. The chest is rising and falling gently however, normality and regularity at least in this respect confirmed by the anesthetist who watches the fluctuations of his parallel and multi-coloured digital lines.

Carefully now, the surgeons begin to work more slowly and delicately. Brutality is replaced – in the details – by the sensitivity that must dictate the smallest and most intimate of incisions. They need to explore, to single out the pelvic lymph nodes, the arteries the nerves. They are suspicious. The cancer may not have settled only in the cervix, there may be subsidiaries, so, like Selzer’s ‘predators’ on the prowl they move quietly, deliberately, stalking the prey, the obscure ‘lumps’ of flesh that have become firm to the touch and thus differentiated from the soft masses within which they hide.

And so they delve with life-preserving precision into the depths of the body, first one side then the other, moving slowly, constantly aware of how far they can to go before breaching a physical boundary impossible to cross with any hope of returning. The main tumour will be taken coldly and cleanly with the uterus, an eradication of the very taproot of the cancer’s existence, but its morbid potentiality may lie in the lymph nodes. Carefully then they search, steadily and without pity, isolating, feeling, cutting, debating, and moving on. They take various samples, all of which ‘feel’ benign, and then, there it is. A tiny lump of bloody flesh is dropped into a plastic vial and a phone call is made. This sample they are not so sure of, they need to do a ‘frozen section’. The operation has to be delayed while they await the result of the analysis because, they tell me, if it is positive there’s no point in going on. I feel suddenly cold although it is very warm in the theatre. They switch off the lights.

She is under anaesthetic for eight hours. I have to leave, and Amanda does another operation, the next lady on the list, while her first lies covered with the wound open but packed with the endless wadding paper while the sample is sent to the lab. I receive a text later in the evening. The sample was negative and they completed the hysterectomy. They left one ovary.


Jac Saorsa

July 2014

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.


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:

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 ( 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.

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.


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. 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”.


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.

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.”


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