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literature

Ageing, Embodiment and the Self: A One-Day AHRC Symposium

13 Jan, 16 | by cquigley

The Reading Room: A review of ‘A Doctor’s Dictionary’

30 Oct, 15 | by cquigley

 

Iain Bamforth A Doctor’s Dictionary: Writings on Culture & Medicine

2015 Manchester: Carcanet ISBN: 978 1 784100 56 8

 

Reviewed by Professor Alan Bleakley

Emeritus Professor of Medical Education and Medical Humanities

Plymouth Peninsula School of Medicine, Plymouth University UK

 

Iain Bamforth, by his own admission, is a writer who practices medicine. Indeed, while he appears to gorge on writers, essayists and philosophers, he gives medical education short shrift:

“doctors undergo a crammed, often dogmatic training in thrall to clinical ‘bosses’, which tends to hinder critical thinking. Then one fine day they wake up to find themselves as soteriological salesman in the Valley of the Shadow of Death. And they hate to lose face by admitting they don’t know.”

While many doctors I know would cringe in self-recognition at this description they would also think ‘hang on a minute, there’s more to medical education than this’ (simultaneously reaching for their dictionaries to check on ‘soteriogical’). ‘Country’ doctors come off worse, where “Doctor-baiting has long been a clandestinely popular activity in country regions. … my grandmother in Glasgow used to say ‘that’s but ae doctor’s opinion’” for in “country areas, where people have long memories, it is still remembered that doctors themselves were once a source of plague.” Bamforth should know – he worked for a year as a country GP in Scotland and has extensive experience working in a number of areas of medicine, including a long stint in his current practice as a GP in Strasbourg with “twenty-two different nationalities”. Bamforth can afford to be self-effacing about his medical career, for he is first and foremost a talented and dedicated writer, and a jobbing translator on the side. In this collection, he brings a literary sensibility to bear on the, often uncomfortable, recognition that much of medicine is an art rather than a science requiring high tolerance of ambiguity and recognition of personal limits to knowledge and ability. Medicine is a performance whose script has been crafted historically and culturally.

 

A Doctor’s Dictionary: Writings on Culture & Medicine is a collection of 26 essays and book reviews previously published in medical and literary journals, many of which were gathered together to form the core of the author’s manuscript Medicine and Imagination, submitted to Glasgow University (where Bamforth originally studied medicine) for the degree of Doctor of Letters by publication. The collection represents two decades’ worth of industrial strength and erudite commentary. The essay titles follow the letters of the alphabet in order, from ‘Anecdote’ to ‘(meta-) Zoology’, via ‘Depression’, ‘Happiness’, ‘Posture’, and ‘Vertigo’ amongst others. The title ‘A Doctor’s Dictionary’ refers to this conceit of an abecedarium. These single word titles serve less as signposts than welcome glades amongst thick forest, for Bamforth’s prose is baroque and relentless, providing little respite for readers who crave more minimalist approaches to the essay. Those who know the author’s poetry – he has published five collections – might not expect such convolutions and digressions within the essay form. His poetry is leaner than his prose. Certainly, he is not a writer who wears his learning lightly.

 

Where Bamforth provides no connecting thread from one essay to another this collection is more lucky dip than pearls on a string. And sometimes – despite the promise of the subtitle ‘Writings on Culture & Medicine’ – the links with medicine are tentative. A more honest subtitle would have been ‘Writings on Culture & on Medicine’. For example, a riveting essay ‘Emergent properties’ – relating to Joseph Needham’s masterwork Science and Civilisation in China – is linked to medicine only by the fact that Needham was a developmental biologist and his father was a Harley Street doctor specialising in anaesthetics. Further, it is not until you read the Endnotes that you find out this essay is in fact a 2009 ‘review’ of Simon Winchester’s biography of Joseph Needham. The reader is left not knowing how much is Bamforth’s original insight and how much is gleaned from Winchester’s biography.

 

A book review of Ziyad Marar’s (2003) The Happiness Paradox and Carl Elliott’s (2003) Better Than Well (first published in a literary and not a medical journal) contains a few lines on the treatment of depression – otherwise there is again no developed linking of culture with medicine. This leads me to ask just what audience the publishers have in mind for this book. Doctors in general are pragmatic and resist complex ideas (Bamforth quotes from a Robert Lowell poem referring to doctors: “We are not deep in ideas, imagination or enthusiasm – how can we help you?”), so I suspect that the primary audience for this book will be humanities scholars working within the health/medical humanities, although, in an ideal world, medical schools would adopt texts such as Bamforth’s to support the teaching of so-called ‘communication skills’ and ‘professionalism’ and to encourage the kind of liberal education that gives insight into the human condition.

 

Bamforth’s book has its weak spots. A review of Carl Elliott’s Prozac as a Way of Life (under ‘D’ for ‘Depression’) tells us little new where the author notes that depression is a cultural disorder and that many mental health symptoms are manufactured to sell drugs that supposedly treat such symptoms. While we are introduced to a stream of writers who have formed high culture, there is little reference to either popular culture or everyday people, in particular Bamforth’s patients. Are some of these not also extraordinary? Do any of them inspire, or is that just for high art?

 

But mainly, Bamforth offers us industrial strength prose. ‘Galen’ is a model of the essay form – pithy, humorous and insightful. Informed by his long experience of practicing medicine in Strasbourg, Bamforth dwells on the ‘folk illness’ of a crise de foi – a crisis of the liver. The essay is a generous meditation on a French national trait – the liver as embodied metaphor. Bamforth’s most recent (2015) essay ‘Tell Me About Teeth’ (under ‘M’ for Mouth) is a very funny meditation on the American obsession with good teeth (equating with good character). Bamforth takes up Elias Canetti’s challenge to ‘write about teeth’ and produces the best line of the book: ‘How can you believe the soul is a butterfly when the human breath is so foetid?’ There is cheek in the essay – Bamford, a doctor, looks down on dentists who cannot have a proper conversation with their patients “with a drainage pipe, cotton wool and gloved fingers in the mouth”.

 

Bamforth’s conversation with his readers, however, is more like the reality of doctors’ ‘conversations’ with their patients – the consultation is actually one-way traffic: Bamforth does not pose questions, he informs, and his information is more torrential downpour than light drizzle. Read psychoanalytically, Bamforth’s rather suffocating attention to detail might be seen as a desire to impress and to control. There is a clue in the Endnotes to this collection of essays, where referring to the essay on teeth, Bamforth notes that while many writers earn their living as doctors, the same cannot be said of dentists. Reading this, I immediately thought of the Egyptian dentist and novelist Alaa El Aswany’s The Yacoubian Building that I read a few years ago. I was interested in this novel because at the medical school where I used to work we had long established a medical humanities programme, and had just implemented a ‘dental humanities’ programme in the dental school. Aswany was recommended reading. I was pleased to see that Bamforth could afford an error, a relief from his parade of learning. But then I read the after-note to these essays, where Bamforth apologises to the reader for an oversight – dentists do indeed write novels, amongst them Alaa El Aswany’s The Yacoubian Building. The rent in the fabric of the essay is neatly repaired without losing face.

 

But Bamforth should not be worried about the occasional slip – after all, it is in such minor imperfections that humanity shows through (Nietzsche’s Human, All Too Human) and this is, paradoxically (and properly), how he describes the work of doctors. Little ‘holes-in-the-day’ or ‘holidays’ (as the late poet Peter Redgrove described unconscious slippage) allow both writer and reader a mini-break away from the relentless search for perfection. Indeed, such a hole-in-the-day does appear in Bamforth’s collection and is not retrospectively repaired in his Endnotes. It is an omission that also provides an insight into limitations to the author’s writing style.

 

While the psychoanalyst Jacques Lacan is referred to (on p.71), he is not included in the index of names that stretches to an eye watering close to 400 entries (with only a dozen women amongst them). Oddly, the publishers have not included an index of topics – a major omission in a book of this kind that is to be dipped in to and not read cover to cover. I pick up on Lacan because it was this psychoanalyst who famously suggested that the unconscious is structured like a language and shapes experience through metaphor and metonymy. Metaphor (the substitution of one word for another for effect: ‘time is money’), suggests Lacan, serves to repress (often in the form of denial). Metonymy functions to combine, where one word or phrase leads by association to another (such as ‘wand-sceptre-king-ruler’) and is then a form of displacement (often in the form of scapegoating). Bamforth’s writing is characterized by a particular use of displacement and contiguity as a rhetorical strategy. Let me give some examples.

 

There is a rather irritating ‘rock hopping’ technique, where reference to one author or thinker jumps quickly to another. The essay on ‘Happiness’ referred to above – a review of Ziyad Marar’s and Carl Elliott’s books – is only seven pages long yet manages to reference Freud, Plotinus, Nietzsche, Bentham, de la Rochefoucauld, Auden, La Mettrie, Diderot, Holbach, St-Just, Stendhal, Dr Johnson, Rousseau, Robert Burns, Tom Wolfe, Dostoevsky, Veblen, Wittgenstein, Theodor Fontane, de Sade, Montaigne, Aristotle, Erving Goffman, Robert Reich, Georg Christoph Lichtenberg, Alexander Pope and Jane Austen. Bamforth’s technique is not to simply list authors – that would be too crude. Rather, he metonymically links them. But these linkages are often arbitrary.

 

The essay ‘Ethics’ is actually about insomnia. Bamforth reminds us that the sleep state is ethically neutral. An anecdote about Vladimir Nabokov is neatly linked to one about the Romanian philosopher and writer E.M. Cioran. Both were insomniacs – so far, so good. But then, linking Kafka, W.H. Auden, Nietzsche, Freud and James Joyce, we are brought to a discussion of the merits of The Epic of Gilgamesh – a paragraph tells us how Rilke and Elias Canetti were both bowled over by Gilgamesh. But what has this got to do with sleep deprivation and what medicine and science might do about it as well as what literature has to say about it? What about sleep deprivation in junior doctors – a well-known source of medical error – rather than passing reference to Gilgamesh? Digressions and diversions are symptoms of the abuse of metonymy. A discussion of Proust and sleep leads into a section on the Irish writer Flann O’Brien with the link “Proust was unfamiliar with rural Ireland though”. The link is forced – a lazy metonymy. Here, Bamforth’s Baroque style reminds me of billiard balls flying haphazardly around the baize, or a pinball machine.

 

The essays contaminated by this rhetorical style tend to be lacking in narrative and resort rather to lists of events. Where narrative is strong – for example in Bamforth’s marvellous essay on ‘integrity’ – the writing seems to me to be so much stronger and engaging. Here, Bamforth turns a review of Emmanuel Carrère’s novel The Adversary into a meditation on lost identities that confounds notions of moral integrity. The essay is subtitled ‘An Empty Plot’ and this is a double-play on the fact that Carrère writes a novel about a French doctor whose whole life was literally an enacted fiction and then hollow. Jean-Claude Romand was (supposedly) a doctor living in France on the border with Switzerland and working as a researcher at the World Health Organization. In short, he turns out to be a fraud – he never completed his medical degree and lived a life of duplicity in which he pretended to have a prestigious job, convincing everyone, including his family and even a best friend Luc Ladmiral, a general practitioner working in a nearby town. Romand systematically embezzled money to maintain the lifestyle of a successful profession where his profession was in fact mute. At the point of his ruse being uncovered, he murdered his wife and two children. Carrère visited Romand in prison to piece together the story. Here, Bamforth returns us to a fundamental discomfort within medicine where doctors walk into roles prepared for them historically and culturally, and this may jar with their non-medical identities. Where then, to find solace or a moral compass? Bamforth’s suggestion is that such touchstones for reality can paradoxically be found in well-wrought fiction.

 

Readers of Medical Humanities will warm to Bamforth’s topics, but not necessarily to his style. A good editor would have rejected the rather forced abecedary structure of this collection to provide an alternative framework for linking otherwise disparate essays, prefaced by a different kind of Introduction illuminating Bamforth’s thought process and style of engagement. The book reviews sit rather awkwardly amongst the essays. The metonymic name-game could have been tempered. An index of topics would have helped the reader to better navigate around what is important writing in the field of the medical humanities. Finally, there are a couple of cheeky gestures: Bamforth is multilingual (he works as a translator into English from German and French), but it is rather high-handed to preface the book with a quote from the German poet Friedrich Hölderlin that is given in German with no English translation. Later, in an essay on ‘Posture’, a “famous couplet” from Ovid is given in Latin but again not translated. ‘Famous’ perhaps for Bamforth, but he is expecting high standards from his readership. The essays then expose the reader’s ignorance rather than engage her interests, and do not educate as much as lecture. It is a shame that the style sometimes taints the content in what is unquestionably an impressive collection.

 

 

 

The Reading Room: A review of ‘The Spanish Flu…’

21 Oct, 15 | by cquigley

 

The Spanish Flu: Narrative and Cultural Identity in Spain, 1918

Ryan A. Davis. Published by Palgrave MacMillan, 2013. Hardcover, 255 pages. ISBN 978-1-137-33920-1

 

This book is unusual in that it deals with a subject that is scarcely found among international literature in the English language, the great influenza pandemic of 1918, or Spanish Flu, so-named perhaps inappropriately after the country. Davis’s work is also uncommon in terms of its cultural historical design, as the author has chosen to look at the epidemic as a discourse made from “the collection of news stories, reports, origin, facts and figures about the epidemic”, the Spanish Flu discourse – SFD hereafter – that he dissects through text analysis. It is true that this pandemic has minimal presence in art, either visual or written, as the author correctly maintains, and that the most common historical studies to date on that episode come from the field of social history, strongly linked to demographical data and to social epidemiology, in essence those which prioritized the material changes brought about by the epidemic. Davis chooses a different path, looking at the collective experience of influenza in 1918 Spain as a cultural trauma, as much as it dealt with a threat to the [hegemonic] cultural identity of the nation that he found articulated in SFD. It is also quite an ambitious endeavour, as the author seeks to evidence “the crucial role narratives play in the human condition”. This particular narrative is well constructed, fluent and clear. Reading Davis’s book is a rewarding, and intriguing, experience.

The Introduction is densely written and painstakingly explanatory in terms of the author’s sources of inspiration. No fewer than 126 footnotes illustrate his task, footnotes that not only account for bibliographical identification but which in many cases include lengthy informative paragraphs. There is where Davis identifies his main primary sources and gives a succinct account of the principal concepts that frame his work. Chapters 1-3 contain a chronological presentation of the appearance and evolution of the two waves – Spring and Autumn – of the 1918 Flu on Spanish soil, an elaboration of the measures taken at the time, as well as reflections on public opinion as well as those of experts. The author follows the birth and development of SFD, coupled to epidemiological differences between the two waves. The first wave appeared in the capital and extended to the periphery, and appeared to be relatively milder despite high levels of morbidity. The second wave, on the other hand, was a comparatively malignant variant judging from the number of deaths associated with it. It appeared first at the French border and in the provinces. Differences between the waves added to the general confusion about the disease. The SFD privileges the collective experience over the individual one (in fact, the use of the scant private sources preserved from Spain is merely ornamental), which is structured as a plot, with a beginning and an ending (p.30-33). This main argument persists throughout the book, within a variety of contexts, including biological, social and cultural. The author displays an impressive ingenuity, and expertise, sharing and discussing these various themes, supported by a comprehensive bibliography.

A “Tale of two States”, the title of the third chapter, correctly introduces one of the inner conflicts that Davis finds in SFD: the confrontation between “epidemic” and “healthy” as the story of “two Spains”, which reflected the struggle for modernization that pervaded fin-de-siècle Spain following the end of its colonies, lost in war to the USA. This is a conflict well known to Spanish scholars, the seedbed of most social, economic and political developments in the history of 20th century Spain, and as such it has been visited many times throughout the last 40 years. Davis’s work delivers a new dimension to this issue, primarily due to its particular focus on the cultural representations of the experience of the disease, which are elaborated in the following two chapters.

In chapter four, “Figuring out the Epidemic”, an accurate path through popular drama, zarzuela (the Spanish type of musical operetta) and certain pictorial representations or cartoons within SFD take readers to Don Juan, an icon for the Flu epidemic under the guise of a “Naples soldier” – the name journalists gave to the illness – taken from a character from the zarzuela “La canción del olvido”, which Davis suggests provided a template for making sense of the epidemic (p.123). Chapter five, “Visualizing the Spanish Flu Nation”, begins with a scrupulous analysis of cartoons published at the time on the subject of the epidemic, introduced by a useful reflection on the importance of cartoonists of the era, underlining the contrast between surface and depth peculiar to this art form and hence suited to expressing the ambiguity of the disease (p.139). Davis follows this with a description and analysis of images gathered by two groups, those that depict the monster of the flu (as a bisexual creature) and those, which represent Spaniards as potential sufferers (overwhelmingly as a white middle aged man of means). The text, framed within representations of epidemics – bisexuality and monsters – is particularly rich in terms of identifying social and cultural associations: the role of women, the fears of the well-to-do in a rapidly changing environment, the newly evolving sports of football, and traditional bullfighting. It is in these final two chapters of the book that the author is at his best, sharing his understanding as he combines elements of a diverse nature within a wealth of metaphors and analogies.

The conclusion comments briefly on the unnoticed third wave of the pandemic, in early 1919, overshadowed by political happenings of the time, including Post-War Peace Treaty discussions and new awakenings of political tensions between central and peripheral Spain. Davis proceeds to focus on the final metaphor in Metchnikoff’s immunity theory. To the author, who has previously made extensive use of another biology-related analogy (membrane = border), the immunity theory metaphor serves to encompass the entirety of the entity of the Spanish Flu in so far as it includes an embodied identity, an external threat and a menace of destruction of identity. The plot that can be followed within the SFD comprises two components, a heroic and a sacrificial one, following Paul Hogan’s terminology (2009) on the role of universal narrative prototypes in emplotting nationalism. Much remains unexplained about the epidemic. It was associated with extraordinarily high mortality rates, and reasons for differences between the first and the second wave in terms of geographic spread remain unclear to the medical world. In addition, disputes over etiology remain unresolved. A contradictory discourse, the SFD, did not serve to alleviate the confusion surrounding the epidemic, as it simultaneously appeared to both soothe and incite fear, as well as on the one hand defending the values upheld by modernity while on the other hand resorting to old paradigms.

We thus find contradictory messages everywhere. It is hardly unsurprising that the author’s final call is to pay more attention to the stories that we tell. I have but one objection: the focus of the SFD, linked to mostly Madrid-based literature and newspapers, and thus largely a product of the learned classes, which is indeed acknowledged by the author, should have included some degree of scepticism on its explanatory power and collective relevance.

As we approach the centenary anniversary of the great Influenza epidemic of 1918-1919, one of the greatest single killers in modern history, it is likely that the output of studies on the subject will increase exponentially, adding to renewed medical interest in viruses as respiratory pathogens responsible for outbreaks such as the 2002-2003 SARS and the 2009 H1N1 Influenza pandemics, as well as new insights resulting from ongoing research worldwide. When the horizon of the history of Influenza has been enlarged by these new developments, the contribution of cultural studies such as Davis’s will continue to take us closer to a fuller understanding of epidemics and pandemics in general.

Esteban Rodríguez-Ocaña

Dpt. History of Science. University of Granada, Spain

erodrig@ugr.es

The Reading Room: A review of James Rhodes’ ‘Instrumental’

2 Sep, 15 | by cquigley

 

Instrumental by James Rhodes

Canongate Books, 2015. £16.99 hardcover, £14.99 E-Book

Reviewed by Vivek Santayana, Postgraduate student in Literature and Modernity, The University of Edinburgh

 

James Rhodes’s controversial memoir, Instrumental, is about many things. On the one hand, it is about the trauma of child rape. There is an ethical dimension to the way this book talks about the trauma of child rape, suggested by its use of an epigram from US Marine Corps veteran Phil Klay about honouring stories of victims. This memoir is, in some respects, about a victim of severe trauma speaking out about his experience. Rhodes describes, with terrifying candour, his lifelong struggle of dealing with the catastrophic events of his childhood and the self-destructive state of victimhood the experience left him with for almost all of his life.

On the other hand, as Rhodes emphasises in the preface (and in his interview on Newsnight on 20 May), this is also a book about the power of music, and is intended to serve as a rejoinder to the bastardisation of the classical music industry. Supplementing this is a playlist of the many pieces discussed in the book, available free on Spotify (http://bit.do/instrumental). Woven through this discussion of music is the harrowing story of Rhodes’ life, which he sees as the ultimate example of the profound and transformative impact music can have on one’s life, and how artistic expression gave him both the hope and the means for coping. Instrumental is nevertheless deeply complex, not just because of the difficult and painful main subject matter, but also because it challenges the expectations that might arise from classifying the book as either about trauma or music. What made this book particularly challenging for me was how rapidly it alternates between both of these narratives. This is a personal account of Rhodes’s life, and the sudden shifts in tone and texture serve to emphasise that the traumas of his past and his musical career are equal and contiguous parts of his life. There can be no clear demarcation between the one and the other, both in narrative and in practice.

Reading this book, it is important to bear in mind the context in which it has appeared in print. Publication came after a protracted legal battle between Rhodes and his ex-wife that lasted over a year, ending in May 2015 with the Supreme Court overturning the Court of Appeal’s decision to grant a temporary injunction on publication. It is open to interpretation whether or not Rhodes’s insistence that this is a book about music is in some ways an attempt at negotiating this censorious legal climate. However, even with the greatest of sensitivity to the parties involved and the greatest of care for their security and privacy, there is a sense in which preventing Rhodes from telling his story would in some ways be a repetition of the same attitude of secrecy and shame through which victims of abuse are silenced, much as Rhodes himself was when he was a child. Rhodes’ voice, when telling the story of his abuse, is inflected by these circumstances.

While he states quite passionately that music is what saved his life, there is a sense in which this is not an entirely accurate conclusion to draw from the story that Rhodes presents. He describes in great detail his experience of abuse, and subsequently his struggle with the self-destructive cycle of victimhood, self-harm, depression, breakdowns, suicide attempts, drug abuse, alcoholism and dysfunctional relationships. He elaborates on what he considers the numerous symptoms of chronic sexual abuse – OCD, dissociation, visual and auditory hallucinations, hypervigilance and eating disorders – as well as the painful process of his treatment through reparative surgery, forcible institutionalisation, therapy and, of course, music, which is one of the more significant contributing factors to healing. Music gave Rhodes something positive to aspire towards, as well as a sense of security and achievement that comes with a rigorous regime of practice and successful performances. Many of the experiences he describes, like the first time he heard Bach’s Chaconne from the Partita for Violin No. 2 transcribed for the piano by Ferruccio Busoni (36), the sense of comfort and security he felt when sitting at a keyboard the first time he performed live (113), the ‘spiritual epiphany’ he experienced when he smuggled an iPod into a psychiatric ward and listened to Bach under the sheets (133), as well as his experience of recording his first album (163), exemplify the transcendental power of music to heal. Rhodes claims that ‘creativity is… one of the most profound ways through trauma’ (225). However, despite his passion for music, there were times when his career as a musician, and the pressures and frustrations involved therein, only served to aggravate his condition. The transcendence and escape afforded by music were temporary, and he ultimately imploded again in a similar manner to before.

In addition to music, there were numerous other factors that contributed to Rhodes’ on going recovery, the most important being the birth of his son. Moreover, while he is quite scathing about mental health facilities in Britain (which he describes through allusions to Ken Kesey’s One Flew over the Cuckoo’s Nest in terms of their lack of empathy and their over-reliance on medication), it is clear that the private facility that he went to in Arizona, with its emphasis on therapy and support groups, was also vital for his treatment. Similarly, the relationships he formed with his son, manager, new partner and some of his closest friends, and their kindness and generosity in his time of need, were crucial to his recovery. While music did have a profound impact on Rhodes’ life, and while creative expression is a powerful mode of therapy, he is circumspect about claiming it as his sole miraculous, transformative force, and emphasises that music is one of many things in his life, along with psychiatric treatment, medication and support and empathy within a broader community, that are part of his ongoing recovery.

Rhodes’ narrative is conscious of its chaotic nature and sense of artifice. This is most strikingly observed in the preface, where Rhodes imagines the morning in which he writes the book as if it were a play in which he, quite graphically, commits suicide, leaving a shocking note to his partner (xvi-xviii). Interspersed within the memoir are a number of self-referential remarks that emphasise his awareness of how the story is an attempt to structure his experience into a coherent narrative. The narrative voice frequently vacillates between suffering and joy, such as when a sublime experience of listening to Bach in a psychiatric ward is juxtaposed with a botched suicide attempt, or when graphic descriptions of self-harming are followed immediately by lyrical descriptions of music. In the most unexpected of moments, the narrative is laced with a bleak sense of humour. The texture of this narrative, with its uneven tone and the sudden, drastic changes in mood, are especially important in the way they embody the disordered nature of Rhodes’ experience.

It is tempting to romanticise the notions of mental illness and suffering and see them as intertwined with creative expression. I found one of Rhodes’ remarks quite troubling, when he states in the context of Robert Schumann that ‘composers and mental illness go hand in hand’ (193), although it is quite probable that this is meant to be ironic. Evan Davis, when he recently introduced Rhodes on Newsnight, made a similar connection between suffering and musical talent, describing Rhodes as having a ‘tormented soul’ that ‘comes out in his music’. The notion that mental illness is in some way constitutive of genius ­– that it gives access to some heightened state of aesthetic sensitivity – is a dangerous oversimplification of the experience of mental illness. However, Rhodes’ narrative complicates this romantic image of the tortured genius. His celebration of composers’ lives and works is contrasted by the self-deprecating tone that he adopts while describing his own struggles when attempting to make music. Rather than depict his suffering as eventually culminating in his musical talent, he describes his experience exactly as it is, and instead suggests that music is a way of healing. When he discusses the lives of various composers, he does so to emphasise how music can be a source of hope when dealing with trauma and pain. While talking about his own life, Rhodes avoids the romanticised notion that all artists are tortured individuals, or conversely that all suffering leads to artistic excellence, and his attitude towards art and music needs to be considered in this light.

As promised in the preface, Instrumental does indeed contain a strong and broad focus on music. The later chapters are a scathing criticism of the Classical BRIT Awards, the snobbery of the gatekeepers of high culture and the dumbing down of the music. It also describes Rhodes’ ambition to start a new record label as part of a campaign to broaden access to classical music, to improve music education and to reverse the tide of the decline he describes. His story of dealing with the trauma of child rape becomes part of this argument, demonstrating the profound impact music can have on one’s life and why it is of paramount importance to save it. His campaign to change the music industry is as significant to his career as the trauma he suffered as a child. This goes to show that Rhodes’ life story, and the way he writes about it in his memoir, is about much more than just giving voice to a traumatic experience, as he shares his experience of being able to live through the trauma and of finding a positive and lasting outlet for his creativity.

 

References

Rhodes, James. Instrumental: a Memoir of Madness, Medication and Music. Edinburgh: Canongate, 2015.

—. Interview by Evan Davis. Newsnight. BBC, London: 20 May 2015. Television.

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.

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Latest from Medical Humanities