Exploring the experience of illness through creative practice

Jac Saorsa, Artist-in-Residence // In my first post for Synapsis, I would like to introduce an ongoing project, Drawing Women’s Cancer, which I began in 2012. The timing is particularly appropriate as,  just last week (and here you must forgive my shameless self-promotion!) my book entitled Like Any Other Woman: The Lived Experience of Gynaecological Cancer was published, completely open access, by Cardiff University Press. Derived from the Drawing Women’s Cancer project, the book documents my work with women suffering all forms of gynaecological cancer, but most specifically vulval cancer, which, despite being a rarer form of the disease, is no less debilitating. The ‘blurb’ on the back cover of the book is as follows:

Like Any Other Woman speaks to the suffering that cancer causes, and to the profound human experience of renegotiating the physical and emotional balance between sickness and health when that balance is tipped by the onset of disease. As a moving collaboration between an artist and a young woman who has endured the impact of a cancer diagnosis and its consequences, this is not a book about the cancer itself, the medical world of causes, symptoms, interventions and treatment regimes. It is rather about what it feels like when all sense of normality, all the expectations of a future that accompany good health, suddenly become submerged in degrees of suffering that impact both on the individual and on the people who care for and about her.

With Drawing Women’s Cancer, I began developing a specific methodological approach that embraces a creative form of autoethnography,  characterised in an experimental and hybrid combination of visual art (primarily painting and sculpture) and creative writing. This approach has since become the fundamental basis of further projects I have carried out, all concerned with the relation between art, biomedical science, and patient experience. I hope to draw from these projects in further posts for Synapsis over the coming year, as well as from my current PhD project.

As an artist, my work is deeply rooted in the field of Medical Humanities, and I understand creative multilingualism as a perpetual dialogue that derives from a symbiosis between visual and conventional language. I explore the complexities of individual subjectivity, and I am especially interested in the inescapable conflict between robustness and frailty in terms of our physical and psychological engagement with perceived reality. Most importantly, and where the relationship between robustness and frailty defines that between health and ill-health, I explore art’s capacity to express and even elicit the ‘lived experience’ of illness in order to raise awareness and increase understanding of conditions and forms of injury that are often shrouded in taboo and ignorance.

Philosophy, especially that of Gilles Deleuze, is the context here.  Deleuze writes with a tempestuous honesty and with seemingly chaotic reasoning that nevertheless persists, like Ariadne’s thread, through a plethora of references to science, literature and art. For Deleuze, philosophy is not about contemplation or reflection, but rather about the active forming of concepts, and, in essence, I understand this as an aesthetic and inclusive process where innovation and invention predominate over disciplinary frontiers. This then is the fundamental rationale for my skepticism over the increasing differentiation between art and medicine because, for me at least, neither takes precedence in terms of the creative process that ensues from their diverse relations. My skepticism also provides the basis for the overarching conceptual and methodological principles that govern the projects I  work on, and serves to connect them at the fundamental levels of practice and empathic insight.

Drawing Women’s Cancer was originally inspired by a question asked to me by a surgeon while we were talking about gynaecological disease and vulval disease in particular. She asked, ‘But can you draw what it feels like, rather than what it looks like?’ It began with the idea that visual art, generated through my own creative response to my one-on-one conversations with cancer patients during their treatment, could create unique representations of their personal experience, as they lived it, of the disease and its impact on their lives. The drawings, then exhibited, could open up an alternative ‘discursive space’ wherein deeper understandings of the existential effect of a disease diagnosis could evolve and potentially stimulate further conversations between patients and physicians, patients and carers, and within the public arena.  Moreover, where gynaecological disease especially has a ‘taboo’ status in society due primarily to the intimate and personal implications of the condition’s bodily location, generating diverse dialogue through creative representation could potentially serve to ‘legitimise’ the issues, thus allowing discussions to take place in a far more open and democratic way.

The autoethnographic approach ensures that in my conversations with patients I never presume to recognise their actual pain, only try to share in it by listening and by responding verbally or even just with a look or a touch of the hand. Any attempt to identify with an individual’s suffering is pointless, and indeed disrespectful, so I try to understand each person in the only way I can, through the construction my own understanding derived from my experience of listening to what the other is saying. Of course not all encounters result in descriptions of pain or suffering, there is often laughter and a sense of affirmation in the way patients develop their own coping strategies for their particular situation. And, even though the fact that they are sick and I am healthy is always there between us, none of the patients would appreciate my pity. Hannah Arendt notes a distinction between pity and compassion where the latter is determined by an intuitive sense of another’s suffering, which leads to a practical response. It may be compassion then that drives the work I do, not in the sense that drawings could ever ease the pain of the disease itself, but in facilitating the opportunity for others to bear witness to the experience of suffering the work can perhaps instantiate the ‘person behind the diagnosis’ and open the public imagination to the overall impact of illness.

Diagnosis: chalk, charcoal and ink on oil ground

The cover image of Like Any Other Woman, is entitled Diagnosis. It was the first drawing that I did for Drawing Women’s Cancer and it has become the ‘signature piece’ for the project as a whole. The drawing was executed very quickly in an immediate response to listening to a woman describe her feelings on hearing she had cancer. It was born of a fracturing of narrative, a sense of disassociation from perceived reality that occurred for her at the time and was reflected in the way she tried to describe the moment during conversation, even when there were really no words. Strawson tells us that ‘narrative comes apart at the seams…in ecstasy, in writhing pain, at death’ and dialogue here becomes stratified, opening up the discursive space wherein sequential narrative dissipates into hazy realm of sensibility and feelings that sometimes overwhelm. Diagnosis is an image that draws the viewer in, but is also an image that many find, ultimately, very disturbing.

Some of the work for the project is very graphic and quite explicit, although all the work is intended purely to explore and inform rather than to shock. I made the following three images for example as illustrations for an information leaflet about vulval cancer for patients. We found that the majority of women actually preferred to see the drawings over photographs , which they found too objectifying, and diagrams, which they could not necessarily understand. The preferred the drawings because they ‘made it look as if somebody has cared.’

Vulva before cancer surgery: colour pencil
Vulva directly after surgery: colour pencil
vulva after
Vulva six weeks after surgery: colour pencil

Finally, the fundamental aim of Drawing Women’s Cancer and Like Any Other Woman is to celebrate the resilience, dignity and courage of women who are suffering debilitating illness. The work is both agent and advocate of patient autonomy through its capacity to engage viewers’ subjective sensibilities. I understand my own role as artist and writer going beyond Radley’s conception of an ‘asymmetric relation’ between artist and ill person. For me it is a more complete immersion of my subjectivity into the world of many ‘others,’ where outputs blur boundaries between objective rationalism and the passionate human need to co-exist and share experience. It is indeed com-passion that keeps me going.

Acceptance
Acceptance: chalk and charcoal

Like Any Other Woman can be downloaded free of charge from the Cardiff University Press website. The paperback can be purchased from Amazon and the Book Depository

Radley, A. (2009) Works of Illness: Narrative, Picturing and the Social Response to Serious Disease. Inkerman press

Saorsa, J. (2019) Like Any Other Woman: The Lived Experience of Gynaecological Cancer. Cardiff University Press

Strawson G. Against Narrativity. Ratio. 2004;17:428-52

 

 

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