Off Sick; Narratives of Illness Past and Present

Scholars from the universities of Glamorgan and Cardiff are currently breaking new ground in the Medical Humanities with the Off Sick project, writes Dr Richard Marsden. This research initiative, led by Dr Martin Willis and Dr Keir Waddington, puts a new twist on the well-known concept of the ‘illness narrative’. It focuses not on the people who actually suffer from illness, but instead on those who support and care for them. In this vein the project team is currently gathering stories from carers across the South Wales area.
This is very much an interdisciplinary project, which aims to explore not only how carers construct and define their experiences through stories in the present day, but also how they did so in previous decades and centuries. Moreover, Off Sick also brings in comparative material from the literary sphere, including fictional accounts, life-writing and poetry.
The peg on which this work is hung is the encounter with ‘medical institutions’. Indeed, the very idea of the illness narrative arose partly in response to a tendency for clinicians to neglect the experiences of the patient, seeing them instead in de-personalized terms as biological problems to be solved with science. Illness narratives are often perceived as a means of reversing this trend and re-empowering the patient.
For that reason, the stories that Off Sick is particularly interested in deal with visits to hospitals and other clinical settings. However, it is the ways in which carers and family members turn their experiences of such encounters into narratives that is the real crux of this research. This emphasis on the stories of those around illness, together with its holistic and comparative approach to contemporary, historical and literary materials, is what makes Off Sick so innovative.
The project’s findings will be showcased through academic presentations and publications, and also through an exhibition (scheduled for June 2011) which is aimed not at academics but at individuals and groups whose lives have been affected by illness and who have their own stories to tell about it. In addition, Off Sick runs a lively, varied and ongoing programme of events and public talks drawing on the expertise of literary scholars, historians, social scientists and medical practitioners.
For more information on the project you can visit the Off Sick website (http://literatureandscience.research.glam.ac.uk/cissmi/offsick/), join the Off Sick Facebook group (http://www.facebook.com/pages/Off-Sick/133055340078848) or follow Off Sick on Twitter (http://twitter.com/OffSick). Alternatively please contact the project’s Research Assistant, Dr Richard Marsden, on rmarsden@glam.ac.uk.

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Medicine Unboxed 2011: Medicine and Values, Cheltenham UK 15 October 2011

Good medicine is more than a set of technical decisions and interventions involving
drugs, operations or tests. It demands more of the practitioner - professionalism,
empathetic care, moral consideration, insight, an understanding of human suffering
and necessarily, wisdom. These attributes are not always prioritised in selecting
for or training healthcare professionals, and there is little time or attention
given to their authentic development within busy working environments. Further,
there is a widening hiatus of trust, understanding and expectation between medicine
and society around what constitutes good medicine. This pressingly requires real
engagement around medicine’s role and society’s values. A purely scientific answer
will never prove sufficient here.

Medicine Unboxed is a unique project and conference programme that engages both the
public and front-line NHS staff with a view of medicine that is infused and
elaborated by the humanities. Contributors include artists, writers, the clergy,
poets, philosophers, lawyers, linguists, musicians, theatre, ethicists, academics
and doctors. The results are thought-provoking, inspiring, sometimes funny and often
moving.

Our theme this year is Medicine and Values.

We think of medicine as simply fact-based, efficient and scientifically robust.
These arbiters can become the measures of good medicine. However, medicine is
infused with judgments of value - individually for doctors and patients but also in
medical science, for society, for policy-makers and health economists. Ethics, law
and religion inform duties and rights in medicine, through principles and values.
The values that define good medicine are not always apparent or agreed upon and
there remains the potential for tension between them.

We'd like to invite you to come along to Medicine Unboxed 2011 and join us in
uncovering the values that pertain to medical care and debating the ambivalences
around the arbiters of good medicine. Our speakers this year include the Rev. John
Bell, John Carey, Lionel Shriver, Jo Shapcott, Ray Tallis, Paul Bailey, Michael
Arditti and Havi Carel.

Come to the debate - be inspired.

Sam Guglani, Consultant Clinical Oncologist.
http://medicineunboxed.us2.list-manage.com/track/click?u=040c885489432f9ea79fbd23b&id=f00835b9f4&e=1767bdcee5

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2011 International Symposium on Poetry and Medicine

May. It will be held at the Medical Teaching Centre, Building 37, University of Warwick Gibbet Hall Campus.
The symposium looks set to be a wonderful day, with fantastic speakers and will conclude by announcing the winning poems for the International Hippocrates Prize for Poetry and Medicine Award. Please see the attached website link for further details.
http://www2.warwick.ac.uk/fac/med/research/csri/research/cpt/poetry/symp

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Dr Arati Bhatia describes her own humbling experience with cancer and chemotherapy

The drainage tube and the negative pressure bag were my constant companions for sixteen days. I was not always respectful of them, even bouncing them around occasionally. I had an intense sense of relief when we were finally parted. They had served their function well. The wound had healed, and there was no collection or infection. Cosmetically, it was a job well done.
Post-mastectomy the strangest sensation was the lack of it. My elbow was numb. I had been unaware of the importance of my elbow to my wellbeing. Now I am reminded every day of what has happened. The operated arm must enter the shirtsleeve or blouse before the normal one. Earlier I had never given much thought to this. Suddenly you are more aware of your own body and its vulnerability.
I had always been proud both of my physique and looks, even though I had contributed little towards then. My tailor affirmed my arrogance. In his years of tailoring experience, I was the only woman whose size had remained so constant for the better part of thirty years.
I am blessed with thick, glossy, low maintenance hair. A shampoo and a brush is all they ever needed to spring into place. Sleep or gusty winds couldn’t disturb them. Suddenly I was terrified of touching my hair, leave alone combing them. Each hair hurt, yelling its impending doom. I procured a wig made from someone else’s hair. But I hesitated to run my comb through it. It was not my hair; however, this made-to-order wig was my only escape from chemotherapy-induced baldness.
I joined work after the winter break. Medical leave for the next round of chemotherapy had to be routed through the department office, forcing me to disclose my health status to my colleagues. My friends in the department already knew I had breast cancer, and were fighting their own battle, a bit like my family. The reactions I observed in the department got me thinking.
Many of my colleagues were about the same age as my self, give or take two to three years. Also, a department dominated by women is emotional! Crying is a common phenomenon. Disclosure to two senior colleagues was accompanied by weeping and hugging, an emotion I had never encountered in the department before. Were the tears for me or for themselves — a realization of their own susceptibility? I think the latter. As the news spread, many headed for the radiology department.
There were those who stood silently, some with tears in their eyes. Others reassuringly gave me the latest outcome for this type of cancer from the literature. They had done their homework well; these were mainly postgraduate students.
A third lot – the vast majority – failed to make eye contact. Either they could not handle it, or for them I had already passed on. Strangely, one person who had fallen out with me some years ago came to make amends. This was difficult to handle. It left me confused. He is highly religious and I felt he was looking for redemption, ensuring that I did not interfere with his karma.
Although it has been two years now, and I have moved on, coping with the immediate effects of chemotherapy had a permanent humbling effect.
Dr Arati Bhatia
Professor of Pathology
University College of Medical Sciences
Delhi-95
India
aratibhatia@yahoo.co.in

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2011 International Symposium on Poetry and Medicine

I recently attended the 2nd Annual Hippocrates Poetry and Medicine Symposium, which was held at Warwick Medical School and hosted by Professor Donald Singer and Associate Professor Michael Hulse. During the day, a group of researchers and clinicians from a variety of backgrounds gathered to explore the role of poetry in the discourse of medicine, including renowned poets, Marilyn Hacker and Gwyneth Lewis.
Themes included: 
history of interactions between medicine, health and poetry; impact of health and disease on the writings of the professional poet; poetry as therapy; the nature of the body, and anatomy; the history, evolution, current and future state of medical science; the nature and experience of tests; use of poetry in health professional training, the experience of doctors, nurses and other staff in hospitals and in the community; the experience of patients, families, friends and carers in these situations; the experiences of acute and long-term illness and dying, of birth, of cure and convalescence; the patient journey; the nature and experience of treatment with herbs, chemicals and devices used in medicine.
The diversity of both the themes and the backgrounds of the presenters, and attendees, signify a very important movement in contemporary medical practice; namely, to address the experience of practicing medicine, and the humanistic elements of the doctor and patient interaction.
Our contemporary clinical settings are surrounded by an array of machines, sterility, and the attempt to reach purity through the annihilation of disease and illness. During this battle, it is all too easy to lose the identity of who we are and who we are fighting for amongst the technology and techniques we can enact to engage with pathology. Yet, when the body is inflamed, and inflicted, with the wars between health and illness, and life and death, the nature of poetry reveals itself to be fundamental to our experience of being human. And this awareness was achieved throughout the symposium, with speakers such as Professor Femi Oyebode declaring the “same skills you need to write are the same skills you need to be a good doctor”.
In parallel to descriptions of symptoms and diagnoses, poetry describes the inner states of a person, the territory immune from any form of empirical probing. A poem is, in itself, a “machine made of words” (William Carlos Williams). The words one writes have a function; they are not just ethereal images and metaphors, or, as another of the presenters, Dr Sandy Goldbeck-Wood said, “poetry embodies the indescribable – poetry has a physical element; it encodes suffering”.
Such communication is vital for Medicine’s endeavor; to heal, the wound must be identified.
The identification of wounds in individuals and communities are both bodies of symptoms, exuberating into the environment which contains our living presence. This was illustrated most poignantly by the work of Dr Sorcha Gunne, who has analysed women’s poetry about HIV/Aids in South Africa.
Through a person’s narrative, a discourse forms, and in medicine it is one that serves the doctor and patient relationship.
Fiona Hamilton, from the writing organization, LAPIDUS, describes narratives as tools that “allow for confrontation between doctors and patients without jeopardizing the emotional disassociation required”. Poetry was also demonstrated to be an indiscriminate force; physical boundaries and limitations are transcended. Age, gender, culture, ethnicity, are irrelevant. Speakers Dr Simon Opher and Karen Hayes presented an exceptional project, working with elderly patients affected by dementia to reconstruct memory through metaphor – one of the last language functions to deteriorate in Alzheimer’s disease – and return to them their stories, because “stories are the architecture of who we are”.
On the other side of the spectrum – and world – Dr Renee Liang of New Zealand, showed the success of community initiatives that encourage under-privileged young people to release their frustrations and anger – as well as pride and joy – through poetry, and the positive impact that this has on their health.
The poem, though, is also for the healer. Nurse, Sue Spencer, described techniques for teaching nurses in medical education the value of words for the “(he)art of nursing”.
It also became apparent that medicine’s healing hands write in arenas other than the surgery, the hospital, the care home. Reflection on our human condition; its fragility and its robustness is part of the world we embody, and Rogan Wolf’s presentation “Poems in Public on the Frontier” personified this notion.
Finally, towards the end of a day characterized by moments of epiphany and realization of connections between the body and the mind, medicine and the human condition, there was a very special announcement. The symposium also marked the occasion to announce the winners of the annual International Hippocrates Poetry prize:
The winners of the open international awards were: ▪ 1st Prize: Michael Henry (Cheltenham, England) – The Patella Hammer. ▪ 2nd Prize: Cheryl Moskowitz (London, England) – Correspondence with the Care Home. ▪ 3rd Prize: Johanna Emeney (Albany, New Zealand) – Radiologist’s Report.
The winners of the NHS category awards were: ▪ 1st Prize: Paula Cunningham (Belfast, N Ireland) – The Chief Radiographer Considers. ▪ 2nd Prize: Wendy French (London, England) – The Doctor’s Wife. 3rd Prize: Dr Sandy Goldbeck-Wood (Cambridge, England) – Inappropriate ADH.

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Singing for the Motherland, Singing Medicine’s Cure.

A recent evening attending a live Greek music ensemble revealed some important characteristics about human nature; and significances for medicinal practices about the interconnectedness of our human condition with the Land on which we are born, live, love, suffer, and die.
The words of the song bore no meaning until my friend kindly whispered its translation, and then, suddenly I could understand the deep, lonely sentiments conveyed by the singer’s gaze and harmonies.
The song spoke of the distress of having to migrate from Greece during the 1960’s, forging his adoration to the land from where he was borne with the endearing reference of “Mother-land”.
For so much of medical practice, the gaze is on the life as it is now. We often, carelessly, forget that the origins of where we once were endured the beginning of our story, and carved the paths within our bodies towards both our health and our illness.
Our Land, whether it be contained within the crevices of a mountain valley, a village, or the open sprawl of urban streets, the rolling sands in the deserts or a land instilled in the echoes of the ocean, is the physical birth of our life and nurtures us in such ways akin to Motherhood.
To hear the longing for one’s “Motherland” is simply a cry; a loss of our foundations. The psychoanalyst, Sigmund Freud, argued that we are always in a state of dialectic turmoil and change because we are trying to return to the mother-child illusion; a state of unification between our internal and external worlds, of peace.
Modern medicine focuses on achieving unification by neutralizing the disparity between health and illness. But, what if our balance for peace reaches much deeper states, in the sense that our internal, physiological dispositions are fundamentally connected to our first sight of the world? What can this say for those who are displaced from their lands? After all, the word “diaspora” originates from the Greek word διασπορά; meaning, to scatter or disperse from one’s ancestral homeland.
How can medicine accompany the person by the bedside in a manner of compassion and relation that resonates the land they long to feel? On reflection to this question, I recalled Lévinas’s conception of compassion in “Useless Suffering” (1982). Lévinas argues for compassion in an empathetic sense: you cannot suffer in my place, yet you can suffer together with me by directing your sympathy into my position and so my suffering can gain a meaning that is new and rescued from the depths of one’s tunnelling despair.
This transformation in suffering is the fortification for the role of the humanities in medicine; creating an expression between the empirical and the existential.
The Greek who sang for their “Motherland” illustrated that medicine crosses boundaries that are sometimes tangible and sometimes invisible.
At times, medical insight can locate the crossover between health and an illness, whilst at other times, pain is suffering without symptoms, without origins. This means that life and death are not only processes in the clinical setting and whilst medicine explores with scrutiny the origin of pain, pain can also result from a loss of origin. When a person experiences the death of origin, it negates the possibility of recreating the idealism of their birth, nurtured by their “Motherland”.
Such loss of the meaning of one’s own birth through this way is an alienation from immortality; a person must recognise that it is their death that will become actual instead.
In a sense, we may all experience alienation in the advent of states of disease, taking us away from the life we once knew. Thus, alienation can be encountered both when one leaves the boundaries of their land, and also boundaries within their body. Patients are, in effect, diasporas; lost, and astray amid uncertainty and discomfort away from their health.
Finding ways to recreate our familiarity – our famil(y)-ity – is an important and integral part of practicing medicine.
A song for our “Motherland”, the heart’s embrace to its original cradle, is also the song of medicine, seeking the cure to resurrect the vitality of the heart’s original beat.

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

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.
Other workshops cover medicine in comics, architecture in health and photography, and a video of experiences in a heart and lung transplant unit.  There are nearly 50 short papers exploring the conference themes of Dramatis personae (people), Plays and Plots (stories), and The Stage (settings and environments).
Delegates are attending from throughout the UK ,as well as from the Republic of Ireland, Canada, the USA and Sri Lanka.  Sign up soon to join them!
To book either a full residential package or a day delegate spot, go on-line at www.shop.le.ac.uk For any queries contact the conference team at amhconf@le.ac.uk
Whether you’re a seasoned AMH member, or simply someone who wants to find out more about medical humanities, this is sure to be an enjoyable and thought provoking way to spend a couple of days.

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