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literature

The Reading Room: ePatients Conference, Queen’s University Belfast

12 Aug, 15 | by cquigley

 

ePatients

The Medical, Ethical and Legal Repercussions of Blogging and

Micro-Blogging Experiences of Illness and Disease

 

Institute for Collaborative Research in the Humanities

Queen’s University Belfast, 11-12 September 2015

The provisional programme for this conference is now available:

Friday 11th September

11.00 – 11.30         Registration

11.30 – 11.45          Welcome

11.45 – 12.45          Keynote 1:

                                      Anne-Marie Cunningham (Cardiff University)

                                    Learning with and from epatients

1.45 – 3.45               Panel 1:

                                      Chair: Nathan Emmerich (QUB)

Amy Brown (SUNY Upstate Medical University, Syracuse, New York): Grounding the Relationship Between Families and Physicians in a Digital Community: A Case Study

Columba Quigley (Reading Room Editor, Medical Humanities): The ePatient and Stories of Illness

Kristen Larson (Duke University): Autopathography and Online Community: Applying Biovalue to Understand the Lisa Adams Controversy

Yewande Okuleye (University of Leicester): You call it Marijuana and I call it Medical Cannabis: Online Identity Construction and Illness Narratives from the epatient/activist Perspective.

4.00 – 5.40              Panel 2:

                                       Chair: Pascal McKeown (QUB)

Maggie Bennett and Deborah Coleman (QUB): Cultivating Compassion through Analysis of Online Patient Narratives

Sylvia Hübel (Interfaculty Centre for Biomedical Ethics and Law, University of Leuven, Belgium): IVF Blogs and Online Forums as Sites of Patient Empowerment and Moral Agency

Angela Kennedy (independent researcher): Power and Conflict between Doctors and Patients: the Case of the ME Community

5.45                            Drinks Reception, The Naughton Gallery

7.00                           Conference Dinner, Deanes at Queen’s

Saturday 12th September

 10.15 – 11.45          Panel 3:

                                      Chair: Paul Murphy (QUB)

Rebecca J. Hogue (University of Ottawa, Canada): Cancer Blogging – A Survivor’s Story

Marie Ennis-O’Connor (Digital Media Strategist and Health Blogger): Connecting and Protecting: The Benefits and Pitfalls of Online Disclosure

Anne Lawlor (22q11 Ireland Support Group): Social Media as a Virtual Lifeline: A Support-Group Perspective of the Issues

12.00 – 1.00             Keynote 2:

                                     Julia Kennedy (Falmouth University)

                                     In Our Blood: Mapping Multiple Narrative Accounts of Leukaemia Online

 1.45 – 3.15               Panel 4:

Victoria Betton (University of Leeds and mHealthHabitat programme director (NHS)): Mental Health Discourses in Social Networking Sites

Ida Milne (QUB): A Rash of Reaction: the e-parent and the 2015 Measles Epidemics

Sally Burch (Patient Blogger at “Just ME”): The Use of Patient Blogs as a Care Resource

 

The deadline for registration is August 14, 2015.

Further information can be found here: https://epatientsconference.wordpress.com/2015/06/24/programme-and-registration/

The Reading Room: A review of ‘The Cambridge Companion to The Body in Literature’

15 Jul, 15 | by cquigley

 

The Cambridge Companion to The Body in Literature

Edited by David Hillman and Ulrika Maude

CUP 2015

 

Reviewed by Alan Radley

Emeritus Professor of Social Psychology, Loughborough University, UK

a.r.radley@lboro.ac.uk

 

It was in the course of having a routine eye examination that I talked to the ophthalmologist about reviewing the present book, an addition to the Cambridge Companion series. Half-blinded by the light penetrating my eye, (“Look to the left; up; now at my left ear”) he asked if the book was organised by organs of the body. Under the circumstances this seemed an altogether sensible question. I explained that this was not so, though I doubt that either of us would have thought of the organ that Ulrika Maude – one of the book’s editors – chooses in order to illustrate how literature borrowed from the neurological pathologies revealed by medical science.

She uses a passage from George Eliot’s Middlemarch to show how the body performs non-intentional acts, which are conscious but not thought-conscious:

‘Her lips trembled, and so did his. It was never known which lips were the first to move towards the other lips; but they kissed tremblingly and then they moved apart.’ Maude compares this to the ‘Sirens’ episode of Joyce’s Ulysses, in which, ‘In the second carriage, miss Douce’s wet lips said, laughing in the sun’. (205) Maude points out that these lips are no longer merely trembling or kissing or even laughing in the sun but reveal an organ that, in producing language ‘in a deviant manner’, reveals ‘a physiological organ running away with itself’ rather than expressing the thoughts of the speaker. This difference is a result, Maude argues, of the emergence of body intentionality in relation to language that followed research into aphasia and other developments in neurology in the late nineteenth century.

While Maude’s chapter is the only one in the book that comes near to being organ specific, (thinking of the nerves as an organ), two other chapters show the direct influence of technological innovation on the way that the body is re-written in literature. One, by Steven Connor, reviews the way that the senses were first ordered and re-ordered through technological developments. Through that re-ordering the body takes into itself powers that enable changes in correspondences with the world. Quoting from Virginia Woolf’s To the Lighthouse, he points out that:

‘Perception reverses the entropy of the world. Better yet, it improves the world. To see the world enchants me, but in so doing, I enchant it too. I participate in the soul of the world.’ (192)

This enchanting of the world is one of the powers of literature, not as Connor says, ‘because everything passes through it, but because, as technographic apparatus, it is becoming part of everything.’ (193).

Paul Sheehan also picks up this transformational potential in his chapter on ‘Posthuman Bodies’, discussing the creation of mythic and monstrous bodies to explore modern concerns about cloning and androids.

The idea that literature reflects and yet transforms the body in its worldly operations is consistent with the aims of this volume as set out by the editors in their introduction. Hillman and Maude point out that ‘there are no bodies in literature.’ (3) This is because the concrete materiality of the body cannot be fully present in words. And yet the fact that the body is everywhere represented through language allows for a re-imagining (‘unbinding’) of forms of fixity to which the body is subject. Chapters on Ageing, Maternal Bodies, Dead bodies, Sexualities and Racialized Bodies serve to illustrate this point in detail and variety.

One chapter that addresses the book’s themes most successfully is Maud Ellman’s discussion of Eating, Obesity and Literature. This is because Ellman serves up a diet of rich metaphor (!) to show that ‘Readers of these novels learn to love fat in both corporeal and literary form.’ (64) Falstaff, Sancho Panza (whose surname means ‘belly’) and Molly Bloom are re-visited as characters who challenge the modernist obsession with thinness. I enjoyed Ellman’s chapter not only for its message but its presentational form, moving between ideas in literature, social norms and historical trends. To give an example, speaking of Ezra Pound’s argument that it is better to present one striking image in a lifetime that to produce a volume of writing she says:

His own minimalist poem, ‘In a Station of the Metro’ (1913), resulted from a kind of liposuction that reduced some thirty lines to two. In the same period, a crash diet is imposed on popular fiction to counter the flabby bourgeois epics of the past.’ (65)

The contributions in this book work best when they do this kind of metaphorical work to show transformational possibilities in the way that authors write about the body. I found the book less engaging in chapters that took ideas about literature together with philosophic concepts and discussed these twin aspects as entities. While there is a place for concept clarification (and I am sure many students find this useful), the book’s special offering is the tracing out of ideas using sources so that a transparency of thinking is made evident. For example, in his chapter on Pain and Violence, Peter Fifield gives an extended analysis of a section of Lawrence’s Sons and Lovers, in which Walter Morel falls ill and Mrs Morel ‘had him to nurse’. Fifield uses this analysis in the context of Elaine Scarry’s argument that pain deprives us of language and hence of nuanced feeling. By the revelation that “Mrs Morel was more tolerant of him..’ but that ‘Neither knew she was more tolerant of him because she loved him less’ (122), Fifield argues that ‘Walter’s illness is not the cause of the coolness, rather the occasion for deceptiveness and scepticism..’ (123). This insight is useful, though it was one occasion among many when I felt the lack of ideas that have been developed by social scientists working in the field of health and illness. On the topic of women’s bodies Mildred Blaxter wrote:

‘People have to inhabit their bodies, and their physical identity is part of themselves. Particularly as they grow older, they have a need to account for this identity, to draw together what they have experienced. This body is their inheritance, it is the result of the events in their life, and it is their constraint.’ (1983)

The nature of this accounting, its context and actors, is of course part of what Lawrence is doing with the Morels, as noted by Fifield. However, the developed writing about illness relationships and caring that medical sociologists have offered is precisely what could have opened out an analysis of this kind.

Indeed, at several points in the book (usually citing Virginia Woolf’s essay on illness) I wondered why there was no special chapter on this topic. If anything this seemed to me an odd omission, given that modern ideas about health and fitness, cosmetic surgery, in vitro fertilization and images of cancer and AIDS patients have occupied pages of novels and mass media. I looked for Susan Sontag’s name in the index but did not find it.

But how does language work in the expression of bodily powers and feelings? This is a big question, addressed by Andrew Bennett in a chapter focusing upon Romanticism. Bennett uses Wordsworth’s poem ‘Tintern Abbey’ to argue that it realises matters of presence and absence (of the speaker’s body) through an allusion to the senses. He says, ‘For the Romantics, in Nancy’s formulation, body and thought ‘are only their touching each other’. (79) It is the idea of presence that extends beyond the body in spatial terms to the apprehension of feelings (our ‘diviner nature’) that remain only as traces, like wrinkles in the sand made by the waves of the sea. According to Walter Benjamin our thoughts and feelings are out there, not in our heads. Regarding our beloved, he says, ‘feelings escape into the shaded wrinkles, the awkward movements and inconspicuous blemishes of the body we love, where they can lie low in safety.’ (1986:68) Bennett’s chapter is one that draws together many of the questions raised in other topic based contributions.

It also raised for me another question, which the book as a whole addressed only tangentially. What of the body of the reader? How is the reader taken up by reading novels, plays and poems that engage the senses, re-positioning them in respect of moments both historical and social? It seems to me this issue of presence – of re-presenting and of making present – is key to the ways in which the senses and affects are mobilised, diverted, muted so that the reader is brought before, or back or beyond. Jean-Michel Rabate concludes his chapter on Literature and Affect with a quote from Kafka:

‘[We] need books that affect us like a disaster, that grieve us deeply, like the death of someone we loved more than ourselves, like being banished into forests far from everyone, like a suicide. A book must be the axe for the frozen sea inside us’. (243)

Yes.

 

References

Benjamin, W. (1986) ‘One -way street’. In P. Demetz (ed.) Reflections: essays, aphorisms and biographical writings. New York: Schocken Books. pp 61-94.

Blaxter, M. The causes of disease: women talking. Social Science and Medicine, 17, 59-69.

The Reading Room: A review of ‘The Development of Narrative Practices in Medicine c.1960-2000’

1 Apr, 15 | by cquigley

 

The Development of Narrative Practices in Medicine c.1960-2000

Jones E M, Tansey E M. (eds) (2015) Wellcome Witnesses to Contemporary Medicine, vol. 52. London: Queen Mary University of London.

 

Reviewed by Ben Chisnall, Medical Student, King’s College London, UK

 

“Narrative medicine” is a term used to refer to a number of analytical and interpretative approaches towards medical practice and interactions between patients and doctors. Its remit is broad, and encompassed within its boundaries are examinations of the personal and professional stories of doctors and patients, the sense-making processes of medical discourse, literary representations of medicine and its practitioners, and the scrutiny of medical forms of writing. Yet it remains a nebulous term, and this book – a transcript of the Wellcome Witness Seminar held at Queen Mary, University of London in June 2013 – brings together many of the individuals who have driven the development of narrative medicine studies in the UK, USA and Europe to provide insight into the scholarly currents which have shaped the field as it stands today.

The book takes the form of a discussion in which a series of narrative accounts are provided by academics and clinicians, many of whom can be regarded as protagonists of the narrative medicine movement. These narratives chart the chronological development of narrative medical studies and the reasons behind its integration into universities and medical schools. What comes across as a major concern of those involved is the desire to better hear the voice of the patient, and to incorporate the patient’s perspective into the thought processes of doctors.

The discussion begins in the 1960s and 1970s, with the introduction of humanities academics into US medical schools. The two main reasons for this, the book suggests, were the desire to provide a more balanced education for medical students, and – as Professor Kathryn Montgomery explains – to “keep [students] interested in patients as they went through the great grinder.”

What is hinted at but not answered in the discussion is whether the interest in what is now referred to as “patient-centred care” within the medical profession prompted a reaching out towards the humanities, or whether the development of narrative medicine and medical humanities departments drove the medical interest in understanding the patient’s perspective. One suspects that these explanations are both correct, and that a gradual alignment of interests between clinicians and humanities academics led to a shared interest in narrative practice in medicine.

The book also touches on larger social trends which may have driven and been driven by increasing interest in narrative medicine. The growth in popularity of celebrity illness memoirs – examples given in the text by Professor Arthur Frank include the Newsweek journalist Stewart Alsop’s column about his leukaemia, and the personal accounts of breast cancer by journalist Betty Rollin and First Lady Betty Ford – indicate a growing desire to hear the voice of a patient and their experiences and interpretations of their own disease and interactions with the medical profession. A recent and useful regular addition to the British Medical Journal entitled “What your patient is really thinking” is a good illustration of how patient voices have come to be valued and their experiences seen as enlightening both for doctors and for lay readers and listeners.

Alongside the development of narrative medicine has been the establishment of medical ethics as a field of study in its own right, which the book identifies as a parallel and reinforcing influence on narrative medicine. Literature and narrative can be used to apply ethical concepts in practical situations, and stories can provide the shift in perspective needed to understand complex ethical dilemmas. Yet as Arthur Frank highlights in the discussion, medical ethics as a discipline does not capture the element of suffering inherent in narratives of illness; this is where narrative medicine can act as an influential force on ethics.

Whilst these developments were happening in the English-speaking academy, narrative medicine in mainland Europe – as described here by Professor Jens Brockmeier from the American University of Paris – looked more towards influences from psychiatry, psychoanalysis and Freud. What emerges is the sense of the ideas behind psychoanalysis working their way into the medical academy through the growth of psychiatry as a scientific discipline during the 20th Century. So too is the study of hermeneutics, which runs through much European analytical literature, applied to the process of medical interpretation: of texts, tests and tales of patients.

The discussion in the book is far-ranging in theme and chronology, and contributions are well marshalled by Professor Brian Hurwitz in the chair. It provides valuable and thought-provoking insights into the beginnings of the narrative medicine movement, and the various and geographically diverse voices captured in the text give a heterogenous feel befitting the nature of the subject under consideration. Although narrative medicine is currently a specialised area of study, the topics under discussion in the text are accessible and applicable for those unfamiliar with the field.

Reading the book brought to mind the influence of those principles at the heart of narrative medicine on the reporting of and reactions to two scandals in the NHS which have been in the public consciousness recently – the Francis Report into the standards of care at the Mid Staffordshire NHS Trust, and the revelations of abuse at a number of NHS hospitals by Jimmy Saville in the 1960s and 1970s. Mention is made in the discussion of a “crisis of compassion” in the modern NHS, and the poor standards of care at Mid Staffs were uncovered when patient voices – many of whom were elderly, and therefore less likely to command attention – were listened to and acted upon. Similarly, the rise to prominence of the voice of patients after years of dismissal led to an investigation into Saville’s abuse. These are prime illustrations of not only the impact that narrative can have on modern healthcare, but also on how the ideas behind narrative medicine delineated in this book have become widespread and valued.

The Reading Room: The Wellcome Book Prize

9 Mar, 15 | by cquigley

 

The shortlist for the Wellcome Book Prize was announced today (http://wellcomebookprize.org/)

Awarded annually, and open to works of fiction and nonfiction, the prize focuses on books that have some aspect of medicine, illness or health as their central theme.

This year’s shortlist includes the following six titles:

  • The Iceberg by Marion Coutts
  • Do No Harm by Henry Marsh
  • All My Puny Sorrows by Miriam Toews
  • Bodies of Light by Sarah Moss
  • The Incredible Unlikeliness of Being by Alice Roberts
  • My Age of Anxiety by Scott Stossel

The Reading Room has already featured reviews of The Iceberg (http://blogs.bmj.com/medical-humanities/2015/01/09/the-reading-room-a-review-of-marion-couttss-the-iceberg/) and Do No Harm (http://blogs.bmj.com/medical-humanities/2015/02/10/the-reading-room-a-review-of-henry-marshs-do-no-harm/)

Reviews of the remaining four shortlisted titles to follow, before the winner is announced on April 29!

The Reading Room: A review of Marion Coutts’s ‘The Iceberg’

9 Jan, 15 | by cquigley

The Iceberg by Marion Coutts

Reviewed by Elizabeth Barry, Department of English and Comparative Literary Studies, University of Warwick

9781782393504

Marion Coutts’s 2014 memoir The Iceberg details the period covering her husband Tom Lubbock’s diagnosis with an aggressive brain tumour, the progress of his condition, and his death. Lubbock, art critic for The Independent newspaper, himself wrote a short memoir (Until Further Notice, I Am Alive) about his condition, and its progressive attack on his ability to speak and write. The Iceberg, then, is Coutts’s story, of her struggle to deal with the news of Lubbock’s condition, to communicate with him and help him to write, and to care both for Lubbock and their young son Ev. Eighteen months old at the time of the diagnosis, Ev bounces irrepressibly in and out of the narrative, both a solace and a terrible reminder of the future that Lubbock will not share.

This extraordinary work rejuvenates the cliché of being ‘unflinchingly honest’. Coutts does not flinch. Her style is measured and sober, her reflections a detached observation on her own pain and anger. There is no misery in this misery memoir. Into what precise genre, then, does this work fall? This seems an almost impertinent question—this is truth, it appears to us, impeccable in its clarity and honesty. The question matters, however, for the reader’s horizon of expectation. It is memoir, but shorn of a degree of narrative frame: the storytelling discourse. Coutts does not try to make sense of what is happening for us—there is no sense to be made—but gives such a lucid account of the experience and its shades of feeling that it teaches us far more than works with a more intrusive narrative shape. The work is in four sections, which cover Lubbock’s diagnosis and first surgery, the second surgery and progression of the illness, his hospitalization, move to a hospice and death, and finally a brief coda on the immediate aftermath. It is episodic in structure, but the chronology and facts of the medical biography are offered by dated ‘update’ letters, reproductions of those Coutts sent periodically to their friends. These provide, then, the frame for the story’s inherent uncertainties and shifts in feelings, balancing the more abstract passages where the experience is so huge, the change in circumstances so cataclysmic, that the categories of time and space themselves warp and threaten to eclipse the factual story. As Coutts observes at one point, “time is a material stream” (91) in this context. Attuned to the discourse of personal disclosures, medical and emotional, in this sort of life-writing, the reader can find the more philosophical reflections jarring at first, however penetrating they may be. But it becomes increasingly apparent that this jarring is precisely the point: Coutts’s means of approach to her situation (her capacity to understand it, her agency in the face of its exigencies) are damaged, as well as the reality itself.

 

Reading this account of brain disease and its effects brought to mind Catherine Malabou’s recent philosophical work, The New Wounded: From Neurosis to Brain Damage, which argues for the incompatibility of brain damage and narrative representation. Coutts reflects explicitly at one point on the brain’s plasticity, the nub of Malabou’s philosophical interest: “Plasticity. This is the environment we live in. It is volatile and dangerous” (171). Her memoir, without any excursus into theory, offers the lived experience of what Malabou posits as the “rupture of narrativity” (55) caused by brain damage. As Coutts writes on the first page of her book, Lubbock’s diagnosis “has the status of an event”, “a rupture with what went before: clean, complete” (1-2). Malabou describes the “absence of sense” that seems to attend brain injury, which “challenge[s] us to think pure, senseless danger as an unexpected event—incompatible with the possibility of being fantasized. One does not fantasize a brain injury; one cannot even represent it” (9). The sparseness and economy of Coutts’s memoir is likely her own stylistic predisposition, but it also speaks to the idea that the experience of brain disease, even at one remove, is both ineffably strange, and resolutely literal.

Often these works stand in a relation of contrast. Coutts’s work acts as a riposte to Malabou’s construction of the brain injured subject as a victim of unthinkable and unspeakable psychic pain, who is unrecognizably transformed. Lubbock’s diagnosis is an event, a rupture, but there is one continuity. The family keeps its shape and character: “Our unit stands” (2). Lubbock is not an isolated individual, a victim, but part of an extended organism that can weather collectively what might destroy its members divided. The family challenges Malabou’s downbeat reflections, providing a salutary example of the idea of a ‘new normal’. This, a concept prevalent in qualitative approaches to oncology and in particular to brain cancer (Schmer (2008) and Cavers (2012)), sees a changed normality elaborated by patient and caregivers which accommodates the disease, neither denying it nor allowing it completely to displace the existing world of the family or its environment. This couple’s ‘new normal’ (worked at tirelessly and resourcefully by Coutts herself) preserves key tenets of their former life, principally the pleasures of food, friendship and a communion with the outdoors, and the satisfactions of work. Lubbock is also far from a wounded being by nature or choice. His experience becomes literally unspeakable as he loses language, but he is lucid (and cheerful) within these limitations until the very end, thought seemingly preserved even when language is severely compromised. He faces the ordeal not only with fortitude but a kind of exhilaration: this is the world, the world is precious, we are together and we are still here. As Coutts reflects relatively late in the narrative, Lubbock’s condition, even in robbing him as a writer of his defining personal and professional capacity, does not change his personality: “The humour in his voice is undiminished. It fizzes through his words like soda. Illness has left his character simply intact” (212). Malabou’s emphasis on absolute narrative rupture is belied by these stories of everyday continuity and preservation.

Malabou is critical of the neurological narratives of Oliver Sacks, who (in his own words) makes his brain injured protagonists “heroes, victims, martyrs, warriors”. Coutts’s work eschews any of these narrative temptations and, perhaps because Lubbock wrote his own equally painstaking account of events, there is relatively little of his perspective in her work. This scrupulous refusal to put words in his mouth, so to speak, becomes less a choice as his condition progresses and more a reflection of his growing “introspecti[on]” (165). For these reasons, then, this can only be Coutts’s story. On the other hand, hers is for this space of time a story almost wholly determined by his—a tension that Coutts explores without sentiment or self-pity in all its wonder (the new chapter in their close and loving union) and its suffocation. At many moments the inseparability of the wonder and the terror of this period is felt in her narrative: “It is the dead, the straight dead of night and I have brought my subject and my object, the one who all this is about to the hospital” (190).

The chronological structure of Coutts’s memoir deliberately precludes a narrative trajectory of heroic conflict or martyrdom, although the inexhaustible probing of the nature of her experience speaks to a far more considered endeavour than a mere chronicle or diary. Reflections on narrativity themselves punctuate the work: the limitation of the brain surgeon’s interest to fact denies the family’s “narrative, […] how this thing affects us in daily life” (95); the possible trajectories of the illness proliferate and present a maze of possible futures, “a blizzard of lines” (53); perforce Coutts leaves “white spaces” where her account of Lubbock’s pain should be (“I cannot write on pain so pain does not get written down. It is blank” (255)). These considerations take on a still more poignant form when she talks about their son and the necessity—and challenge—of constructing a “version of our narrative” that he can understand: “There will be no happy end, no moral neatness, no rhyme. […] I feel that two adults must be intelligent and brave enough to come up with something here, some version of a story to help Ev negotiate it. So far I am wrong” (164).

There is little retrospect in the work: this is not a “version of a story” but the hammering out (and often discarding) of words that can never keep up with the exhausting newness of the situation.   There are some lyrical affordances for Coutts and her reader, however; some hard-won moments of communion with the natural and social world when she can reach out to existing metaphors and conventions rather than having to coin her own. Time passing is marked in places not only by a development in Lubbock’s condition but also by the change of seasons. These stages are put into moving connection or counterpoint. Sometimes both at once. The uplift of Spring at the beginning of the second section coincides with a surprising move from darkness to light—decline to reprieve, bad news to good. Spring coincides with the tumour starting, like the nature around them, to “[grow] again”. There is a parallel development that is more positive, however: “Spring. Magnolia soulangeana opens its bells and we are well. Normality is gifted in the form of steroids” (91). The juxtaposition of the natural flowering and the chemically induced “normality” is ironic. This normality, rather than the new normality of cancer, is a simulacrum of the old, a “false peak” which takes them in. And yet this temporary happiness is genuine. The narrative witnesses itself having it both ways: in retrospect, this good news will have proved an illusion (“we are taken in, of course we are”). On the other hand, the relatively flat episodic structure of the narrative takes on a new and moving significance: the writing lives predominantly in the present tense, in a series of moments that have the potential to obliterate what has been and what is to come, and offer an epicurean freedom from fear. “We are as ever in the moment and we are well—so we are forever well. […] We splash about like birds in a birdbath” (91).

While time has become more material in the train of this illness, space has become less so, culminating in the narrator’s loss of purchase on her location at Lubbock’s death: “the action is familiar but not the place. We have stopped being anywhere at all. We are way outside, out of culture, place, gender.” This is, however, a source of peace rather than distress. “I do not know where we are but I feel very sure of myself here.” While space is dissolving, time is “refreshing itself”. In surrendering to time, space disappears from view—but Coutts can at last relinquish the fight and bow to this force, and there is no little comfort in this. “Time is the fundament we have never left, so powerful is its agency and pull, so direct and strange. There is nowhere in the world like it” (291). The end is good: a peaceful sleep for Lubbock, and in a sense one for Coutts too. When death ends a long illness, with its exhausting demands on the carer and its treacherous shocks and feints, it is well known that relief can accompany grief. There is, undoubtedly, this, but also something more than this, here. Coutts also awakes into the narrative at this end point, releasing Lubbock to death and taking his place as her own subject and object (“Go. I am not anything. Go. I am”). He has “[left] us standing” (294), as she says in the last entry, a black pun but also an uplifting statement of fact.

 

The Iceberg by Marion Coutts.

Published by Atlantic Books, 2014

 

References

Debbie Cavers et al, ‘Social, Psychological and Existential Well-Being in Patients with Glioma and their Caregivers’, Canadian Medical Association Journal, vol. 184, no. 7 (2012), 373-382

Tom Lubbock, Until Further Notice, I Am Alive (London: Granta, 2012)

Catherine Malabou, The New Wounded: From Neurosis to Brain Damage (Forms of Living), trans. Steven Miller (Bronx, NY: Fordham University Press, 2012)

Oliver Sacks, The Man Who Mistook His Wife for a Hat (New York: Summit Books, 1985)

Carol Schmer et al, ‘When a Family Member Has a Malignant Brain Tumour: The Caregiver Perspective’, Journal of Neuroscience Nursing, vol. 40, no. 2 (2008), 78-84

 

The Reading Room: A review of Emma Healey’s ‘Elizabeth is Missing’

6 Jan, 15 | by cquigley

This is the first in a series of three books from the Costa Book Award 2014 category shortlist that will feature in the Reading Room. Elizabeth is Missing was yesterday announced as the First Novel category winner. 

 

Elizabeth is Missing by Emma Healey

Reviewed by Andrea Capstick, Division of Dementia Studies, University of Bradford

EIM pb jacket

One of the four shortlisted nominations for the 2014 Costa First Novel award, Elizabeth is Missing is an admirable attempt to place an older woman with dementia at the centre of a novel which otherwise belongs to the genre of crime or psychological thriller. The narrative unfolds on two levels. The back-story is a genuinely intriguing disappearing person mystery set during World War II when the central character, Maud, whilst still a child herself, lost her recently married sister, Sukey. The period detail here is well handled, particularly in relation to the social aftermath of war, and has clearly involved a lot of careful research. In the present day strand of the novel, the story of Sukey’s disappearance is paralleled by another vanishing, this time that of Maud’s long-standing friend, Elizabeth.

A central trope of the novel is that, due to her dementia, Maud perpetually confuses these past and present disappearances. Her problems with short-term memory lead her to go over the same ground repeatedly in her investigation of Elizabeth’s disappearance, whilst not being able to remember that she is doing so. In her pursuit of the truth about what happened to Elizabeth, Maud constantly writes notes to herself to remind her that ‘Elizabeth is missing’ and to suggest lines of inquiry that she needs to follow up on. At the same time, Maud confuses events relating to her sister Sukey’s disappearance with those of Elizabeth’s more recent unaccountable (to Maud) absence. Ultimately, we are made to realise that Maud does, in fact, remember historical facts that other people without dementia are not aware of, and that somewhere within the recesses of her memory lie the solution to a decades-old crime. Maud struggles to be heard and believed, and her determination to solve this double-faceted mystery is both moving and believable.

What worked less well for me was the credibility of Maud’s narrative voice. A certain amount of suspension of disbelief is necessary in our response to all fiction. In conventional third-person, ‘omniscient’ narrative, we quickly learn to ‘read through’ the narrative voice, accepting that we are being told what happened by someone with privileged knowledge. First-person narrative has always been recognised in literary theory as a more difficult form, particularly when we are faced with the possibility of an unreliable narrator. In the case of Maud’s present day narrative, the necessary suspension of disbelief becomes very difficult indeed. Here is someone who cannot remember what has just happened, even a couple of minutes earlier, who writes herself notes which she then immediately forgets about but who is somehow speaking to us as the first person narrator of the present day strand of the novel. How has this first-person, continuous present tense narrative got onto paper at all? This may not interfere with credibility for all readers, but it did for me, as I found I was constantly distracted by wondering about the impossibility of the story I was reading having been recorded. The attempt to represent Maud’s minute-by-minute subjective experience was a brave one, but felt as though it needed some additional narrative device in order to be credible, such as Maud having made audio-recordings that were then transcribed by a third party. Alternatively, given the relatively well-preserved recall most people with dementia have for remote events, it may have worked better had Maud’s first-person narrative related to the historical mystery, rather than to her halting present day attempts to find Elizabeth.

There is a very skilful interweaving of recurring themes and motifs in this book; lipstick, marrows, tinned peaches and particular wartime melodies crop up over and over again, at times almost turning the repetition often considered a ‘symptom’ of dementia, into something like an art form. There are also some extremely penetrating individual insights into how it might feel to have dementia; to have one’s underlying intelligence still intact but struggle to communicate with a dismissive external world. ’’They want you to have the right props” Maud says, ironically, “so they can tell you apart from people who have the decency to be under seventy. False teeth, hearing aid, glasses, I’ve been given them all.” The book is not written for laughs, but I did laugh in places at lines of Maud’s, such as “The word ‘plaque’ makes me angry”. Unfortunately this isn’t entirely consistent, and some sections of the book read rather too much like a creative writing exercise. Soil is described, for example, as being “chewable” but also as “spitting things out” within the same sentence, and the likelihood of Maud spontaneously using terms like ‘lasagne’ and ‘wok’ also seemed rather remote, given her other difficulties with word finding.

The novel is certainly unusual, and commendable, I think, in trying to combine a traditional murder mystery with a voyage into the subjective world of a woman with dementia. Ultimately, for me, it did not quite work on either level. The solution to the historical mystery would not have stood alone as a whodunit, because we suspect the answer from quite early in the novel, and it doesn’t help that the perpetrator turns out to be the most sympathetic character in the novel. The ending also somewhat undermines the strong theme running throughout the rest of the storyline about the potential for people with dementia still to be experts on their own experience, and to have strong convictions and loyalties. Nevertheless, there is a lot to learn from here. The book is dedicated to Healey’s grandmother and is no doubt based on observed real-life experience, which runs extremely true in some excellent set pieces such as the Mini-Mental State Examination test Maud has to endure on pages 154-157. Clinicians take heed and beware!

 

Elizabeth is Missing by Emma Healey.

Published by Penguin, 2015.

The Reading Room

25 Nov, 14 | by cquigley

 

The Bad Doctor

A graphic novel by Ian Williams

Reviewed by Dr Ian Fussell

The Bad Doctor cover final  (1)

 

The Bad Doctor is the debut graphic novel by Ian Williams, himself a pretty good doctor, I reckon, by the insight and humanity shown throughout this book. It was published in June 2014 by Myriad Editions and is a beautifully presented book.

Ian is a physician working in General Practice and GU Medicine in Brighton. He is also the founder of the website graphicmedicine.org for which he coined the term “Graphic Medicine.” Following his training in medicine he studied fine art and achieved a first in an MA in Medical Humanities.

Not unlike the classic graphic novel Maus by Art Spiegelman, The Bad Doctor tells a number of stories simultaneously: that of Iwan James as a GP, Iwan as a sufferer of OCD, and Iwan as a troubled child. We also join Iwan on cycling rides, both alone and with his friend, during which they chew over life’s difficulties. As in Maus, these stories are all related and give the reader an insight into the person Iwan really is. This is what makes the novel stand out and retains the reader’s interest and engagement.

Throughout the novel we are exposed to some of the dilemmas and challenges experienced by a GP living in a small rural community and some of the problems experienced when working closely with partners who you can both hate and fall in love with. Relationships with work colleagues are always complicated and emotionally charged and this novel clearly demonstrates this.

We see young Iwan develop from an angst ridden teenager who loves heavy metal and worries that his behavior is the cause of certain traumatic events, into a man and a doctor who continues to be angst ridden. He fantasises about shooting himself and becomes possibly impaired by obsessive-compulsive disorder, a trait that somewhat perversely may actually benefit patient care.

We witness Iwan struggle with the dilemmas faced by GPs every day, including unpredictable medical emergencies, terminal care, signing shotgun licenses and managing bereavement. He cares about his patients and is naturally empathetic and not afraid to use self-disclosure as a therapeutic tool.

Rather like good poetry, comics and graphic novels can convey difficult and emotive subjects in a way that gives the reader a deeper understanding of the message. Explaining what GPs actually do, to our politicians and the media, by our leaders nearly always inadvertently sounds clichéd and trite and seldom succeeds, despite almost all the population having experienced going to the doctor’s at some point in their lives. Perhaps graphics should be used as a powerful political lever in our profession.

The monochrome drawings are deceptively simple and the text is minimal. This helps make the book very accessible and a pleasure to read. Each chapter starts with an icon that sets the scene for the following chapter.

It would be an oversight not to mention cycling. How many doctors do we all know that cycle or exercise therapeutically, if not obsessively? The benefits of spending time exercising and with friends are so obvious in this novel, that if not already doing so, doctors should be encouraged to start immediately!

Ian Williams Bad Doctor page 70 (1)

I also enjoyed the connection between Iwan as an adult and Iwan as a child. Now with access to social media, music streaming sites and platforms such as You Tube, looking back has never been easier, but this novel adds deeper meaning to this and shows how our young lives and older selves are a continuum rather than distinctly separate entities.

As a 50 year old, a cyclist and a GP living in a rural community who saw Ozzy Osborne on his first tour, it was impossible not to love this book. Ian Williams has possibly written a future classic, which must surely be added to the curriculum of all GP training schemes and might even help our leaders explain what GPs actually do.

 

Ian Williams Bad Doctor town (1)

 

Ian, let’s have some more.

Tell us Dr Smith’s story.

 

 

The Bad Doctor by Ian Williams.

Published by Myriad Editions, 2014.

Poetry, Science and Medicine

19 Oct, 14 | by cquigley

 

Through the Door is a collaborative project involving Archives for London and Poet in the City. Six poets have been commissioned to create new works based on archives that include those of St Paul’s Cathedral and The British Library.

This week I attended a reading from the selection of poems – The Bone Ship – that the poet Mario Petrucci created from his exploration of the archives of The Royal College of Surgeons of England.

The archives contain not only records of the College’s activity, but also hold many collections of letters, diaries (including those of grave robbers), photographs and drawings relating to medicine and surgery from the 16th to the 20th century. The patient files of the First World War plastic surgeon Sir Harold Gillies are also part of the archive.

Mario Petrucci is impressively not only a renowned poet, but also an ecologist and a PhD physicist. The 11 poems that constitute The Bone Ship address issues around war wounds and facial reconstruction during WW1, venereal disease amongst British troops in India, radical surgical techniques, as well as grave digging and body snatching.

Subtitled ‘Poetry and Anatomy’, Petrucci’s poetry extends beyond the physical aspects of the operative procedure and the confines of the human body:

‘Much of the archive material I studied drew a deeply complex, visceral response’ (p.69)

As a result, the poems evoke much compassion around and within the stark language – ‘enucleate’, ‘excise’, ‘snipped’, ‘stripped’ – of surgery.

From Surgical love:

This breast dissected

to beached ribs. My bone ship.

Heart bails alone for you its last salt heat.

 

Hip and thigh.

That softer flesh. To cinerator.

Crematorium. Dust and ash. And oh

 

in their jars these parts so prolonged. But

the sum shall throng in you

wherever you are.

 

And from Methods:

Kneel or recline

for tests that long to bless – what in moderation

 

we tolerate must heal in excess.

 

Also in Methods, Petrucci clearly demonstrates the capacity of poetry to uniquely convey what might otherwise be ineffable:

Malign cells that fraternize

to dominance in cervix, larynx, skin.

Petrucci speaks of a ‘textual music’ in his poetry, which facilitates an understanding that is not dependent on literal meaning. The power of sound within The Bone Ship is perhaps most apparent in P 56, the title reflecting the number of the record recounting the surgeon John Hunter’s transplant of a human tooth into the comb of a cockerel:

Did those jelly-blood

 

teeth in their leather-red comb dryly pliantly rough to touch

wobble with undervalued pain as much as

 

the congealed curls of these girls unhealed?

Similarly in Bullets:

Palpate for a thrill.

With stethoscope hear the bruit.

Exert your will.

The Bone Ship arose from the exploration of an archive, yet it is also about more than history in its consideration of us as embodied beings and as it delves into the suffering that our humanness can entail.

Petrucci speaks of the ‘porous membranes between poetry and science’, which The Bone Ship successfully explores. There have been similar collaborative projects, including the collection sequences and pathogens, which arose from a ‘Poetry Meets Biomedical Science’ venture between poets and scientists, and also includes works from Mario Petrucci.

The poetry collection Pocket Horizon contains the works of seven poets and was inspired by objects from the history of science and medicine, for example Richard Barnett’s That the Heart is a Fist based on one of the original 1815 stethoscopes:

Beating, pounding, pumping – such hard words,

So plump, so tense with action

A dialogue between poetry, medicine and science is an important one, each discipline potentially illuminating the other and enhancing our ability to understand our experiences. In Sylvia Plath’s The Surgeon at 2 a.m., the poet writes from the perspective of a surgeon who sees the patient not as a person but as the sum of her body parts:

It is a garden I have to do with—tubers and fruits

Oozing their jammy substances,

A mat of roots.

Removed body parts – ‘pathological salami’ – are ‘entombed in an icebox’.

Poetry can redress imbalance and restore equilibrium. There is a danger in the dialogue between poetry and disciplines such as medicine and science that the conversation veers to one side. The ‘porous membranes’ that Petrucci so eloquently describes need to allow for a bi-directional flow, thus ensuring that all mutually benefit from the exchange.

 

The Bone Ship: In Through the Door: New Poetry from London’s Archives. Southampton: Indigo Press Limited, 2014.

sequences and pathogens. Litmus Publishing, 2013

Pocket Horizon. Scarborough: Valley Press, 2013

 

Columba Quigley

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.

 

“The One-Sex Body on Trial: the Classical and Early Modern Evidence” – a new review by Brandy Schillace

23 Apr, 14 | by gbelam

We are thrilled to be able to publish here a  wonderful review by Brandy Schillace, of Helen King’s book “The One-Sex Body on Trial: the Early and Modern Evidence.” (Surrey: Ashgate Press 2014.) Thank you so much to Brandy for her contribution to the blog – I will very much look forward to other pieces from her in the future!

– Georgia

The One-Sex Body on Trial: The Early and Modern Evidence

In so many important ways, I’ve been long anticipating this book. Where there is a lack, a need, we naturally look for satiety—and there has been a considerable gap in studies of the sexed body since the (pardon me) seminalwork of Thomas Laqueur: Making Sex. I do not mean to suggest a lacuna where none exists; certainly plenty has been written on the one-sex/two-sex body since the early 1990s. However, as Helen King herself points out, none of these works have, in a meaningful way, challenged—or even added to—Laqueur’s original analysis. If anything, they have solidified it, casting it as the background upon which all else must be built rather than as a concept or theory in its own right. Twenty years after its publication, Making Sex was still described as the standard, and as a graduate student I was given a copy as the potential foundation of my dissertation on women’s education and women’s bodies in the 18th century. There was only one problem: I found that I did not agree with aspects of Laqueur’s premise. It did not ring entirely true to what I was finding in women’s writing about their own bodies and minds in the eighteenth century.

That happens frequently, does it not? And any reasonable student seeks out the next text, and the next, to gain a broader perspective. But for me, in 2007, there were no other options. Or rather, all other options likewise returned me to the original as to the foundation, the blank background from which I was to begin. To be so statically conceived is unhealthy for any idea, no matter its worth. Closed to inquiry, its kernels harden. In The One-Sex Body on Trial, Helen King, historian and professor of classical studies at Open University, at last provides the counterpoint. Gracefully acknowledging the value of Laqueur’s work, she also offers its first real challenge. With her usual depth of perception, careful research, and immanent readability, King elaborates the other side of the one-sex/two-sex story.

One of the greatest strengths of King’s work related to her “storied” presentation. The medical humanities, though multiple and varied in definition and mission, largely seek to divine the human narrative behind medical meanings. Rather than asserting or denying the ‘one-sex’ body, King provides a reading of two key classical texts that problematize a single narrative of progression away from one model or towards the next. Close reading provides a new means of perceiving the terms in context, reminding us that in holding too close our own cultural understanding, we miss significance—or worse, misrepresent data. Using the story of Phaethousa (a woman and mother who seems to undergo masculinization) and Agnodice (a woman who wears male costume in order to become a physician), King demonstrates the variety of ways in which connotation and denotation collide. Even so common a thing as Agnodice’s calling card refuses to parse properly—to be “the WOMAN physician” can imply either that she is a woman and a physician, or a physician of women (she was, in fact, both).

In part one of King’s book, she assembles the classical evidence not of a strict adherence to the one-sex model, wherein women are men turned inside out with organs of generation that neatly correspond, but rather of a two-sex model that existed at times alongside but always in contention with the one-sex version. King does not argue for linear progression, however; rather than insisting that the one-sex to two-sex revolution happened, but happened earlier, she makes it clear that there was a range of models of the body. Vesalius, for instance, retains some of the earlier understanding of the body, such as the heart-shaped womb, but clearly departed from Galenic descriptions. The reading of Vesalius becomes clear only when the full context is considered. The question, whether Vesalius ascribed to the Galenic one-sex or Hippocratic two-sex model, is partly answered by close reading the images but also the text and the captions (frequently omitted in Laqueur’s work). Why is the abstracted womb shown without the female testicles? Because it is not an homage to Galen, of whom Vesalius claims “not even in his dreams did Galen ever see a woman’s womb” (57). Rather, it is, as King describes, the “womb and its constituent parts” –a thing unto itself and not the inverse of the male organs (59). King also describes the work of Laurens in 1593, who finds the vagina-as-penis idea frankly absurd—and Jane Sharp’s The Midwives Book of 1671, where Sharp claims that despite certain similarities, male and female organs can never be considered the same. By a careful marshalling of evidence, close-reading and analysis, and copious footnotes, King makes clear the problems with Laqueur’s sweeping pronouncement that the two-sex revolution arrived in the 18th century. King’s first two chapters also serve as excellent reminders that history is complicated and close reading within a cultural context remains our safest guard against anachronism. However, the second part of King’s book departs from the usual means of explication and proof and offers an exploration of the two classic tales mentioned in the introduction. In her masterful engagement with these, King seeks to ask broader questions that remain deeply important and even foundational for the medical humanities—namely, on what authority does medical knowledge depend. Whose stories matter, and who gets to tell them?

In the second part of King’s work, we once again examine the story of Phaethousa, the woman who, after previously birthing children, stops her menses and grows a beard after (or possibly in response to) the exile of her husband. The chapters in this section highlight the frequently confusing contexts in which such stories appeared, asking us to re-evaluate their role as “true” case histories. To what extent does she represent a medical construct? Her name and place of abode would have had metaphorical relevance to readers; has she been included as proof of the Hippocratic two-sex model? She dies, after all, and does not fully change into a man. If anything, the beard is a sign of illness, possibly related to her inability to conceive children after the loss of her husband. Here, Phaethousa is at risk because she is, in fact, too womanly, too reliant upon pregnancy for health. Later contexts (and later centuries) reinterpret her story, however; she appears in Wit’s Theatre as a fully functioning male, having undergone the inversion successfully. Surely this usage supports the one-sex model wherein male and female organs are interchangeable with the proper heat. And yet, she also appears in lists of hermaphrodites in the early modern period. What do such changes in context and, indeed, meaning represent? The story represents a “blank canvas,” a place where divergent and overlapping understandings of sex and gender might be enacted and analyzed, and reading this broader context allows us to go beyond Laqueur’s dichotomy and to recognize the variety of markers that made sex apparent, such as beard, menses, and generative ability. Part three of King’s book, which provides a similarly close reading of the Agnodice story, likewise challenges Laqueur’s straightforward picture of the classical and early modern world. “True sex” means different things in different versions (and for different audiences) of these narratives.  Agnodice’s story, particularly, does not fit into a single genre; the “voice” shifts and the text is offered up both by Agnodice’s supporters and her enemies.

King’s chapters on Agnodice, which close the book, render explicit the role of interpretive context: Agnodice as assertive and active heroine; Agnodice as shameful woman from which no woman should learn, Agnodice as the pretender—not to be trusted, Agnodice as agent of change. To what extent does the story represent reality? To what extent myth and fiction? How are we to read her role or even her name (chaste before justice), considering she saves herself from accusations of philandering with her woman patients by exposing her genitals in the courtroom? Even more complex, if possible, than the tale of Phaethousa, the story of Agnodice toys with the Galenic one-sex model while depending upon the two-sex model for its happy conclusion. More importantly, as King remarks, “the reason why the story is being told affects how it is constructed” (206). In her final chapter, wherein she ties the two tales together, King returns again to the markers of sex. What is it that makes a woman a woman? Or a man? Even Galen’s one-sex model is not as simple as it first appears. Rather, King’s extensive research reveals a much more fluid history, where different models of the body existed simultaneously and possibly on a spectrum wider still.

King’s work does, at many points, contradict Laqueur, but at no time does it set itself up as antagonistic to it. In many respects she agrees, particularly with Laqueur’s point that what was “seen” depended much more on expectation than anatomy. However, where Making Sex relied heavily on a smaller selection of sources, and these occasionally out of context, King widens the scope of source material for a richer and more meaningful engagement. Applying specific labels—either one-sex or two-sex—“obscures the complexity of the different interest groups, readers and tellers,” whereas our consideration of cultural and chronological specificity allows us to engage not just with meaning, but with meaning-making.

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