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Book Review: Notes From the Sick Room

9 May, 17 | by amcfarlane

Notes from the Sick Room by Steve Finbow, London: Repeater Books, 2017, 343 pages, £8.99.

Reviewed by Alan Radley, Emeritus Professor of Social Psychology, Loughborough University

This is a book about sickness, more specifically about the illnesses of a number of well-known artists and philosophers. It is also about the illness history of the book’s author, Steve Finbow. He uses his own experiences of illness (and they are many and varied) to introduce the reader to the travails and writings of the individuals whose sickness he explores. The word ‘travails’ is apposite here as it suggests that illness can be, if not a life’s work, then a determining factor in how people live their lives, as well as rendering their experience meaningful through writing and other forms of art. Key to this is the idea that being trapped in a diseased body opens up the possibility of escape through self-examination, issuing in a productive outcome. To make this argument Finbow explores in detail the circumstances and reflections upon illness of several artists and writers. He introduces us to cancer in the life and death of people such as J G Ballard, Iain Banks, Christopher Hitchens and John Diamond. Finbow details the sufferings of Frida Kahlo after the bus crash that severely damaged her pelvis; the effects of being shot upon Andy Warhol and his art; the denials of illness that were part of Bruce Chatwin’s extensive travelling; and the descriptions of and insights into illness offered by writers such as Katharine Mansfield and Virginia Woolf.

How should one tackle a subject like sickness while providing detailed biographical detail about one’s own and others’ illness, at the same time weaving a complex argument drawing upon philosophers such as Nietzsche and Foucault? Finbow achieves this by treating the book as a virtual hospital – a clinical space – populated by celebrity patients and some celebrity doctors (e.g. Susan Sontag). The entries and exits from the various departments to which he escorts the reader are managed in part by introducing us (in detail) to his own medical history. These extend from a pain in the buttock to severe pancreatic necrosis and a spell in intensive care, all illuminated by details from his medical notes. In the case of the pain in the buttock, Finbow uses this as an approach to the question of whether cancer is alien to or part of the self and, in the case of the latter, how it might become so. Turning on the issue of denial, he argues that the denial of disease (“flight to sanity”) is not healthy, but that health tolerates disintegration and, by implication, transforms it through art and writing.

The idea that illness and the state of being sick can be the bases of productive art is expressed in a quote that Finbow provides, in which John Berger says of Frida Kahlo: “The capacity to feel pain is, her art laments, the first condition of being sentient. The sensitivity of her own mutilated body made her aware of the skin of everything alive – trees, fruit, water, birds, and, naturally, other women and men. And so, in painting her own image, as if on her skin, she speaks of the whole sentient world” (322). By drawing attention to this Finbow is agreeing with Nietzsche and Foucault that art is an act of freedom-making borne of suffering. This extends to the person’s life – including their art – so that what is rendered is expressive of a way of being rather than illness per se. It is perhaps for this reason that he objects to Susan Sontag’s attack on the use of metaphor as aestheticizing the “what should not be imagined”  – the abhorrent disease that is cancer. To this Finbow replies, “what nonsense”, and argues that when Sontag wrote about cancer in her book Illness as Metaphor (1978) she was, in effect, aestheticizing it.

The problem here is that there is a difference to be made between aesthetics and aestheticization. Aestheticizing, at its root, directs the viewer/reader to the artist/author rather than the object. An artwork is the product of a transformation that directs our attention to the ineffable; it is this that, in part, gives it aesthetic value. This is not always an easy line to draw, but it matters in this book because Finbow treats of both aesthetics and aestheticization in the course of his descriptions and discussions. By dramatising the artists and writers he discusses as either patients or doctors, Finbow risks muddling this distinction. So, for example, he writes: “Dr Sontag sits back in her chair, her fingers pyramided above the desk, the silver streak (poliosis) in her hair illuminated by the overhead fluorescent strip lights”. And later, “She closes the book, gets up, takes me by the crook of the arm and says authoritatively, ‘Let’s go to your office. I think we need to have a little chat’” (300). For this reader at least, these passages had the effect of displacing attention from the book’s argument about illness to the author’s interest in his subject matter, which at times I found unhelpful.

In terms of the book’s overall aim Finbow goes some way to demonstrating that illness improves the work of the artists considered, though he does not show exactly how art draws upon illness. Instead, the book remains a bricolage of ideas that coheres as a sort of image, a story of the necessity of ill health in our lives. Its overall message – drawn from Nietzsche – that life needs illness, is incomplete without it, is an important one. Health is not separate from illness, and a deeper understanding of health includes the idea that it can be strengthened by illness. And for that, and its historical and biographical detail, Notes from the Sick Room makes for a most useful and interesting read.

Alan Radley is the author of Works of Illness: Narrative, Picturing and the Social Response to Serious Disease. Ashby-de-la-Zouch: InkerMen Press, 2009.

Book Review: Deleuze and Baudrillard: From Cyberpunk to Biopunk

25 Apr, 17 | by amcfarlane

Deleuze and Baudrillard: From Cyberpunk to Biopunk by Sean McQueen, Edinburgh: Edinburgh University Press, 2016, 288 pages, £70.

Reviewed by Dr Anna McFarlane (University of Glasgow)

Sean McQueen’s first monograph ambitiously aims to create “a cognitive mapping of the transition from late capitalism to biocapitalism” (1) and to do this through tracing trends in science fiction from the cyberpunk movement of the 1980s and early 90s through to a subgenre only recently designated as ‘biopunk’. Following Fredric Jameson, a scholar known for his analysis of postmodernism and Marxism in late capitalism, McQueen argues that cyberpunk is the quintessential literature of late capitalism and therefore a fitting place to begin his analysis of this recent cultural movement from late capitalism to biocapitalism which, McQueen argues, “is the frontline of capitalism today, promising to enrich and prolong our lives, whilst threatening to extend capitalism’s capacity to command our hearts and minds” (1-2).  In McQueen’s schema this is a transition from the ‘control’ of late capitalism to the ‘contagion’ of a biocapitalism that he argues is an increasing threat to individuality and the autonomy of the body.

The book’s title belies its contents to some extent, given that the first half of the book does not focus on texts from cyberpunk’s ‘canon’, such as it is, but focuses on the ‘cyber-‘ aspect of cyberpunk to investigate texts that engage with the concept of control. Anthony Burgess’s A Clockwork Orange (1962) is not generally considered cyberpunk-proper in reviews of the genre, but its themes of control, and of the renegade individual fighting subjection by the state, certainly resonate with the work of figures in the cyberpunk canon such as William Gibson and Pat Cadigan. Another of McQueen’s chosen texts, JG Ballard’s novel Crash (1973), has been subject to debate about the extent to which it can be considered science fiction, let alone cyberpunk. Such deviations from the ostensible theme may be traces of the monograph’s origins as McQueen’s PhD thesis, but their reworking in this monograph is satisfying for those coming to the book for considerations of Deleuzian and Baudrillardian thought, who might consider the texts to which their philosophies are applied a secondary consideration. McQueen successfully cuts through the archaeology of decades of readings and misreadings of these two thinkers, often with a sharp word for scholars who come to the original philosophy with their own preconceptions, and hence leave it repeating unjustified or inconsistent critiques of these two thinkers. His own readings come across as fresh and new, perhaps because he works against a backdrop of scholars who have become too accustomed to invoking the names of Deleuze and Baudrillard without putting in the time to tackle their complex bodies of work first-hand.

The primary interest in the book for scholars of the medical humanities comes in the latter half, where McQueen turns to biopunk. This is a relatively new term in science fiction scholarship (following in the -punk traditions of cyberpunk, steampunk, and dieselpunk, to name but a few), but McQueen finds the term’s origins in classic science fiction, such as Mary Shelley’s Frankenstein (1818, commonly considered science fiction’s foundational text) and HG Wells’s The Island of Dr Moreau (1896). The first example of contemporary biopunk McQueen draws upon is Vincenzo Natali’s 2009 film Splice, in which a couple who work for a pharmaceutical company use DNA to create a hybrid creature.

The film draws on the tradition of Frankenstein to express fears of uncontrollable technological change, while also specifically critiquing a biocapitalism guided primarily by profit margins, rather than by philosophical or ethical considerations about the effects of its research.

McQueen’s readings of Deleuze and Baudrillard focus on some of these thinkers’ key concepts, how these have been relevant to cyberpunk and its investigation of ‘control’, and how they might function in contemporary debates about the ‘contagion’ that McQueen finds characteristic of biopunk. He contrasts Deleuze’s concept of the ‘body without organs’ with Slavoj Žižek’s ‘organs without a body’, both of which attempt to offer a representation of desire without the restrictions of hierarchy (to draw on only one valency discussed in the book). Žižek provides something of a bridge between Deleuze and Baudrillard here, as his Lacanian impulses are echoed in Baudrillard’s attempts to consider psychoanalysis, and how it might function in a society defined by the imaginary realm of consumption and consumer fetishism. Under biocapitalism, the consumption impulse could quickly move towards the point where the market’s freedom to use cells and discarded bodily tissue for profit is in tension with the long-held belief that it is immoral to profit from the cells of organs – as argued by Marlon Rachquel Moore in a recent article for BMJ Medical Humanities, “Opposed to the being of Henrietta: bioslavery, pop culture and the third life of HeLa cells”, which teases out the historical racial injustice that is now being relived, without hope of reparations, by the family of Henrietta Lacks whose ‘immortal’ cells continue to be the basis for untold profit in the biotechnology industry. The move from co-opting the labour of classes of the population under slavery, and later forms of capitalism, to co-opting the use-value of the body itself is the journey with which McQueen engages here as he moves from readings of Karl Čapek’s R.U.R. (Rossum’s Universal Robots) (1921), the science fiction play that brought the word ‘robot’ into English usage, and Eric Garcia’s The Repossession Mambo (2009, filmed in 2010 as Repo Men) which sees a biounderclass fitted out with artificial organs and forced to pay crippling interest rates or face having their organs repossessed – and dying in the process.

The electronic copy of this book, from which I reviewed, leaves something to be desired. Like many academic books, it uses endnotes which cannot be easily referenced as one reads in the electronic form, and the book’s use of abbreviations for the major works of Deleuze and Baudrillard exacerbate this problem as the reference list at the beginning of the book cannot be easily consulted. This makes for particular difficulties when quotes from the major texts are picked out as introductory to chapters and their sections, leaving the reader occasionally unsure as to which of the theorists is being quoted. However, the content of the book ultimately extends the case for considering biopunk as a unique and important subgenre of science fiction that, in turn, deals with the unique and important development of biocapitalism. McQueen’s readings of Baudrillard and Deleuze manage to scrape away some of the sedimented assumptions and misreadings of the past and offer exciting new ways to consider their work. His reference to both major and minor texts from both thinkers will introduce readers to insights they had not previously considered – again, especially relevant to students of the medical humanities might be Baudrillard’s comparison between cancer and capitalism in The Transparency of Evil (1990), the biopolitics of organ transplantation in Kazuo Ishiguro’s Never Let Me Go (2005), or Thierry Bardini’s account of subjectivity after bioengineering, Junkware, which McQueen turns to in his final chapter reading of Brandon Cronenberg’s Antiviral (2012).

As I pointed out above, McQueen’s book does not always stick to the limits laid out in his title, (for example when he reads texts that are not considered archetypically ‘cyberpunk’ under that rubric, or in the latter half of the monograph where Foucault’s thought is just as crucial to his argument as that of either Deleuze or Baudrillard), and his book should come with a warning for those who have never tackled Deleuze or Baudrillard before, given the slew of concepts that are not fully unpacked here for beginners. However, the book that emerges is cohesive and amounts to an often passionate argument for considering class consciousness in the era of bioengineering, biohacking, and biopolitics.

Book Review: Thinking in Cases

23 Jan, 17 | by cquigley

 

Thinking in Cases

by John Forrester. Published by Polity, 2016.

Reviewed by Dr Neil Vickers

 

John Forrester, who died in 2015, was the most original historian of the human sciences of his generation. His great love was the history of psychoanalysis – he was for 10 years the editor of the journal History and Psychoanalysis – and he published no fewer than 4 major books in that field, including the classic Freud’s Women (which he wrote with his wife, Lisa Appignanesi).

Thinking in Cases is the first of two books to be published posthumously, the second being the monumental Freud in Cambridge (co-authored with Laura Cameron), due out later this year. It comprises six essays written over the last two decades on what he memorably termed ‘case-based reasoning’. Forrester, along with many historians of science, believed that case-based reasoning had embedded itself in a variety of disciplines, in ways that experts were often reluctant to acknowledge. It might be thought that in the era of evidence-based medicine, medical education no longer needs the case. Yet, as Forrester argues in his classic essay, ‘If P, Then What? Thinking in Cases’ (1996), novice practitioners learn their science by absorbing a handful of standard experiments from scientific textbooks. These case studies – for that is what they are – serve not only to make the underlying principles more memorable, they also provide something like a shared professional memory.

Much of Forrester’s thinking on case-based reasoning was informed by his decades-long engagement with the work of Thomas Kuhn, with whom he studied in the early 1970s. The most brilliant essay in the book (‘On Kuhn’s Case’) treats the evolution of Kuhn’s thought as a case study in how the philosophy of science actually works at an individual level. Kuhn, it turns out, came from a family that was steeped in psychoanalysis. His grandmother had analysis in Cincinnati with Alfred Adler, sometime in the 1910s or early 1920s. His mother edited some of Karen Horney’s works. And most important of all, he twice underwent psychoanalysis himself, first (briefly) as a child, and again as an adult, between 1946 and 1948. The end of this second analysis coincided with two great changes in Kuhn’s life. He was admitted into the Society of Fellows at Harvard which enabled him to abandon his career as a theoretical physicist and to become a historian of science instead. And he embarked on a marriage that lasted 30 years. He decided to abandon physics for history when he read Aristotle’s Physics. At first he was baffled by the great man’s obtuseness. How could someone who had written so penetratingly on so many other subjects have got the laws of the physics so wrong? But one day it dawned on him that Aristotle was investing concepts like ‘motion’ with completely different meanings from the Newtonian ones he had learned as a boy, and that, once he had made allowances for this altered usage, Aristotle’s physics not only made sense but was far in advance of its time. This Gestalt shift in his own thinking was the first instance of the famous ‘paradigm shift’ which became the master idea of Kuhn’s book The Structure of Scientific Revolutions (1962). Forrester leaves us in no doubt that it was the result of analysis. In an interview published in 2000, Kuhn stated that it was while he was in analysis that he learned ‘to climb inside people’s heads’. He recognised that this ability was central to his work as a historian of science and that for this reason he owed psychoanalysis ‘a tremendous debt’, even though he didn’t much enjoy being a patient. The Aristotle epiphany occurred while he was in analysis. Forrester points out that Kuhn’s method was both individualistic and psychologistic. Kuhn called himself an internalist historian of science because of his overriding preoccupation with the problems his subjects were trying to solve. The historical contexts in which they tried to solve them were a secondary matter. But he was an internalist in the more informal sense that he worked by climbing into other people’s heads. In the same interview Kuhn recalled feeling he could ‘read texts, get inside the heads of the people who wrote them, better than anybody in the world’. These other people were encountered as auxiliary selves – extensions of himself. Forrester quotes several anecdotes Kuhn told about himself in which new selves – famous scientists all – would arise almost in the manner of out-of-body experiences.

The other highlights of the book for me were two pieces on the LA analyst, Robert J. Stoller (1924-99). The first puts forward an extended speculation concerning Stoller’s analysis of a woman on whom he conferred the pseudonym Belle. Belle is the protagonist of one of Stoller’s best books, Sexual Excitement: The Dynamics of Erotic Life (1986). The turning-point in Belle’s analysis occurred when she described a daydream she’d nurtured from childhood in which a figure called The Director instructed her to humiliate herself sexually before a group of adults (and sometimes animals). Stoller was bothered by what he took to be his patient’s seductive behaviour towards him. It was only in retrospect he realised she was pressing him into the role of the Director. (Belle’s mother was a famous Hollywood actress who took up with a number of Directors. The injunction to perform was everywhere in family life.) Forrester suggests it was from Belle that Stoller drew his controversial theory that sexual excitement ultimately depended on hostility. He suggests that the book detailing her case history, written years after her treatment ended, was an attempt to model a more benign form of watchfulness for her. Stoller consulted Belle over every draft of the book and gave her carte blanche to alter anything she didn’t agree with. It was sobering for them both to discover that they had very different views of what had been valuable in their work together. Forrester suggests that the writing of the book was the decisive part of the treatment for through it he showed her that he didn’t need to be entertained by her. ‘If he had not published his book,’ he writes, ‘her analysis would have been a failure.’

The second Stoller-related chapter (unpublished until now) is a paper on ‘Agnes’, one of the world’s first male-to-female transsexuals. Agnes’s case was first described in Harold Garfinkel’s Studies in Ethnomethodology (1967) but Garfinkel took Stoller on as a co-author as he was one of Agnes’s psychiatrists. Agnes claimed to have been born intersexed and, starting in the late 1950s, went through an arduous vetting procedure lasting many years in order to obtain surgical gender reassignment. Many years later she told Stoller that from the age of 12 she had in fact taken her mother’s hormone replacement medication which resulted in her acquiring female secondary sex characteristics. Garfinkel the sociologist thought that Agnes’s attempts to pass as female shed light on what maleness and femaleness were, as socially-credited qualities summoned up into being every moment of every day. Her deception about her history was just another instance of what she had to do to ‘pass’. Stoller on the other hand originated the concept of core gender identity on the basis of his treatment of Agnes. He met Agnes’s mother and discovered that she had regarded herself as male from the age of eight and that she had passed her own ambivalence about her gender identity on to her adored son, whose transformation into a woman she supported wholeheartedly.

Thinking in Cases is an ideal introduction to Forrester’s thought, containing some of his most important papers. He combined a scientist’s delight in devising new methods to understand recondite things with an exceptionally acute sense of the role of contingency in intellectual discovery. These strengths were central to his style of reasoning and, as these pages testify, made him one of a kind. Everyone with an interest in the medical case history and its wider ramifications should read this book.

Book Review: Aliceheimer’s

5 Oct, 16 | by cquigley

978-0-271-07468-9lg

 

Aliceheimer’s. Alzheimer’s Through the Looking Glass

By Dana Walrath. Published by The Pennsylvania State University Press, 2016.

 

Reviewed by Dr Martina Zimmermann.

 

Dana Walrath’s Aliceheimer’s. Alzheimer’s Through the Looking Glass is the second graphic memoir by an adult child about her mother’s Alzheimer’s disease, after Sarah Leavitt’s Tangle. A Story About Alzheimer’s, My Mother, and Me (2012); a further contribution to the steadily growing body of dementia caregiver life-writing. The best-known representative of this body is surely John Bayley’s Iris: A Memoir of Iris Murdoch (1998) – given the account’s prominent filmic adaptation, its unceasing consideration in literary scholarship, its persistent presence in the lecture theatre and seminar room, and the countless citations other caregivers take from this text. For these caregivers, Bayley’s narrative has provided inspiration, and at times moral justification – especially for how they tell about the patient’s loss of self. Walrath foregoes reference to the experiences of other caregivers. Instead, she connects her account to Lewis Carroll’s Alice’s Adventures in Wonderland (1865) and Through the Looking Glass (1871). Allusion to Alice’s Adventures in caregiver narratives is not new: Cécile Huguenin made the connection in Alzheimer mon amour [Alzheimer my love] (2011) and Sally Magnusson in Where Memories Go. Why Dementia Changes Everything (2014). Both wife and daughter refer to being lost in an environment that resembles Carroll’s nonsense world, exposed to the nonsensical organisation of caregiving and lacking support from practicing clinicians. Walrath, however, maps her narrative onto Carroll’s story to depict the condition itself. In doing so, she offers an unexpected perspective on Alzheimer’s disease; she seemingly creates a new condition: Aliceheimer’s. Concurrently, Aliceheimer’s acknowledges that Alzheimer’s disease creates a new person, indelibly linked to the Alzheimer’s disease experience. Alice is no longer “her old self” – a “proud, hardworking career woman [who] had done all the cooking and cleaning for her family of five, without any outside help” (11). Having fallen down the rabbit hole, she now is “her new self” (27): Aliceheimer.

A pronounced feature of Alice’s dementia is disease-related hallucinations and fears, and Walrath dedicates a large part of her account to this aspect of her mother’s illness experience. This choice of presentation makes Walrath’s narrative unique. In fact, affective symptomatology, that is auditory hallucinations as well as ideas of jealousy, had been described by Alois Alzheimer in the landmark case of Auguste Deter in 1906. However, cognitive and histopathological features took priority in medico-scientific and healthcare descriptions of dementia patients in the first half of the twentieth century and beyond. And while the patient’s mind and psyche entered the literary arena much earlier and more explicitly (since the 1920s) as compared to when and how old-age psychiatrists and social medics began to take an interest in this area, they continue to remain absent from most caregiver accounts. Walrath describes some of her mother’s hallucinations, but more importantly, she gives them new meaning, depicting them as Alice’s space time travel and a special power (37). What happens under the spell of Alzheimer’s disease happens in wonderland. Mapping her mother’s experiences onto the adventures of Carroll’s character is a gambit that enables the caregiver to counter-narrate the patient’s social death and loss of self in a culture “where death is taboo, and aging is not celebrated” (47).

Walrath confirms what anthropologist Janelle Taylor explored in her prize-winning essay “On Recognition, Caring, and Dementia” (2008), namely that recognition is considered to be the “public threshold” (69). Specifically, the first thing Walrath is asked when her interlocutor learns that Alice has been placed in a nursing home is: “does she still recognize you?” (69) An anthropologist herself, Walrath asserts that “more than recognition of individuals and their social roles, it is recognition of intention and behavior that matters” (69). This insight is core to Walrath’s caregiving practice, as she assigns intention to Alice’s hallucination-caused behaviour – a strategy also pursued by Reeve Lindbergh in No More Words. A Journal of My Mother, Anne Morrow Lindbergh (2001). Lindbergh’s literary account of her mother’s dementia features among those we perceive of as particularly enabling because it seeks to identify the patient’s continued identity and self within dementia. Similarly, Walrath concedes that “there is loss with dementia, but what matters is how we approach our losses and our gains. Reframing dementia as a different way of being, as a window into another reality, lets people living in that state be our teachers – useful, true humans who contribute to our collective good, instead of scary zombies.” (4) This approach echoes that of other caregivers, like Arno Geiger in Der alte König in seinem Exil [The old king in his exile] (2011), Ruth Schäubli-Meyer in Alzheimer. Wie will ich noch leben – wie sterben [Alzheimer’s. How will I continue to live – how will I die?] (2010) or Cécile Huguenin, who depict their parent or partner as teachers. But in comparison to these caregivers Walrath does not give her mother her own narrative space. Aliceheimer’s remains Walrath’s account. And as such it reveals that a balance between continuity of identity for the patient as parent and continuity for the caregiver as child is not easily found – neither in the illness experience itself nor in an account thereof.

Walrath writes beautifully about how she creates continuity within and for her mother’s behaviour, how she discovers gain within loss. But we are only told about the “more benign hallucinations” (5) relating for example to the patient’s sundowning (35), not the difficult ones. We read about Alzheimer’s disease as “a time of healing and magic.” (4) But we are not told about the profound challenges of dementia caregiving. We gain such information only from the acknowledgements, where Walrath concedes that “[c]aring for Alice required a community […that] gave Alice space to be herself and to grow even through loss.” (71) Where are the caregiver burden and identity crisis of the child in this narrative? Are these challenges not explored in more detail, because we are expected to fill them in from our knowledge of the mainstream dementia narrative? I believe that the key to these questions is found in the narrative’s collage technique.

There is a clear compositional strategy in Aliceheimer’s: on the left the patchwork image of pages cut from Carroll’s text incorporated into Walrath’s own drawings and colouring; on the right Walrath’s written account in one-page long snippets and impressions. In a first instance, this arrangement gives the disease-inflicted, hallucination-provoked chaos a systematic structure. But more importantly, it enables Walrath to tell two different stories. The author encourages us to “[p]age through to feel the storyline as it exists in the drawings on their own” (5). But the collage depicts a truth on which the textual narrative – effectively like every Alzheimer’s disease memoir – remains silent: the patient’s complete disintegration and dissolution. The collage arrangement leaves space for the onlooker to imagine the full truth conveyed in Aliceheimer’s. In the end, Aliceheimer’s is Alzheimer’s: a disease of relentless loss and decline.

aliceslide1

Roughly a third of the account covers the time from when Alice is placed in what Walrath terms “memory care”. From the time of Alice’s placement the pictorial narrative tells an explicit story of decline, regression and involution, of what Walrath only once spells out in writing, namely that “with each passing day, Alice was becoming developmentally younger” (61). The collage images show Alice as a young bride, a school girl, in her babyhood; Alice’s eventual bodily and mental disintegration become clear from images depicting Alice in the immediate post-fertilisation phase with the zygote (a spiral cut from a page of Carroll’s text) surrounded by sperm cells (64), and another image reducing Alice to mere DNA (the cut-out text from Carroll’s narrative that links the molecule’s two strands together featuring key characters in Alice’s adventures [66]). Instead of telling about Alice’s disintegration in the nursing home in her written account on the right, Walrath now takes to peering through the looking glass in yet another way. She sets out to explore Alice’s past and describes her personality in the past. With this account, she can place the “old” Alice before the increasingly disintegrating Aliceheimer. Not only do photographs of the young Alice begin to replace Walrath’s drawn image of her mother. In this final third, some chapters extend over more than one page, indicating that the caregiver needs to tell more of the story than the image alone can or should tell. Where the narrative snippet spreads onto the next page, the accompanying image is repeated in magnified form, suggesting that eventually the caregiver’s story must replace the patient’s world. Walrath, indeed, depicts her mother as increasingly transparent early on (10-15) and – like other caregivers such as Elena De Dionigi in Prima di volare via. Quello che l’Alzheimer non ci può rubare [Before flying away. What Alzheimer’s cannot steal from us] (2012) – as flying away (18-22).

aliceslide2

Aliceheimer’s remains Walrath’s account also for the fact that it creates continuity for the daughter that reaches beyond her professional interests. In the first place, it tries to give meaning to the caregiving process, as the daughter now has to mother the mother, or as Walrath – mother of three boys herself – puts it: “I had always wanted a daughter” (57). Equally, Walrath describes the period of caregiving as a time when she “wanted to create a bond with my mother, to redo the past, and to fill the hole inside of me” (1). And as such, Aliceheimer’s also remains Walrath’s account when the narrative turns into the daughter’s search for the mother’s past as the story of her own origin; a past that will be forgotten with Alice’s memory loss; a past that harbours Alice’s as much as her daughter’s identity as Armenian. In this regard, Walrath’s narrative fits into the tradition of adult-child caregiver narratives that arose during the 1990s’ memory boom; narratives about a parent’s dementia whose forgetting becomes linked to the danger of an entire generation’s loss of collective memory about the trauma and fate of the Jewish people – if we think about Linda Grant’s Remind Me Who I Am, Again (1998) or Lisa Appignanesi’s Losing the Dead (1999). Like many caregivers before her Walrath becomes the “archivist”, not only of the mother’s memories, but an entire people’s history: she travels to Armenia to “make the missing pieces of our past into more than ideas” (61).

Peter Keating has described Carroll’s Alice as having “pioneered the new mood of freedom and exploratory play in children’s books”. Walrath’s narrative could be read as representing a new mood of freedom in how to deal with Alzheimer’s disease. It is a narrative about Alice’s different identities, views and truths of the world; a narrative showing that “[c]onflicting realities can coexist in a single image just as they do for people with dementia and their caregivers” (5). Walrath asserts that her mother “escapes the captivity of Alzheimer’s through story” (29). Also Walrath herself escapes the captivity of Alzheimer’s through story: the captivity of the medico-scientific and wider cultural narrative of decline, diminishment and loss. To my mind, Walrath’s reference to Carroll’s “Lobster Quadrille” (47) is most revealing. In this adventure, Carroll’s protagonist offers to tell her experiences on condition of not “going back to yesterday, because I was a different person then”. Living well with the patient comes down to living in the present moment – living within the world and experience of Aliceheimer. When this is not possible any longer, Walrath’s memory of her mother’s old self, Alice, will come to replace both Alice’s memory and Aliceheimer herself.

If this is the first Alzheimer’s disease narrative you pick up you will come away with the feeling of having read a kind of fairy story – about Alzheimer’s through the looking glass. If you read it against the last decade’s caregiver life-writing, you will see it fitting into how adult children increasingly assert their parent’s continued identity and self within dementia. Reading it in the context of nearly thirty years of Alzheimer’s disease life-writing, Aliceheimer’s appears original in its collage approach, and buoyant in its message of how to “bring back the humanity of a person with dementia” (5). But it also matches what has developed into a kind of prototype caregiver dementia narrative. It tells of biographical disruption; searches for continuity for both parent and child; aims at preserving collective memory; presents – as John Wiltshire has discussed in relation to John Bayley’s memoir – “the issues of identity which are implicit in all illness experience with particular acuteness”. Aliceheimer’s is a story about the possibility to find quality of life in dementia caregiving; the possibility to see Alzheimer’s disease as creating a new self, a self that can be lived with and written about up to the moment when we feel threatened in our own self.

 

 

The final review in this series – Alzheimer’s disease and graphic memoirs – will be Sarah Leavitt’s Tangles.

The first in the series – Alex Demetris’s Dad’s Not There Anymore – was posted here.

 

Related Reading

David M R Orr, Yugin Teo. Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change? Med Humanities 2015;41:2 8185.

Martina Zimmermann. Deliver us from evil: carer burden in Alzheimer’s disease. Med Humanities 2010;36:2 101107.

 

Book Review: The Slumbering Masses

3 Oct, 16 | by cquigley

UMN06 Wolf-Meyer Selected.indd

 

Matthew J. Wolf-Meyer, The Slumbering Masses: Sleep, Medicine, and Modern American Life (Minneapolis & London: University of Minnesota Press, 2012)

Reviewed by Steffan Blayney

 

Need a quick recharge? Power up with a power nap. Geniuses like Dali and Einstein loved sneaking in some extra ZZZs.

Opening up my Mozilla Firefox web browser, a cartoon Albert Einstein greets me with this friendly message. Albert’s suggestion – one of a rotation of quirky, entertaining factoids on the Firefox homepage – is indicative of a particularly modern attitude towards sleep. The examples of Dali and Einstein, it implies, show that sleep is not just a period of repose, but something that can – and should – be organised in constructive ways. More than simply providing a break from work or play, sleep can be used to ‘power up’ the sleeper, so that they might make the best and most productive use of their waking hours.

In The Slumbering Masses, anthropologist Matthew J. Wolf-Meyer traces the origins and implications of this and other of our contemporary notions of sleep, charting in particular the rise of sleep medicine in the twentieth century. The book is resolutely interdisciplinary, combining archival research with ethnographic fieldwork in sleep clinics and support groups, as well as numerous interviews with doctors, patients, and their family members. While Wolf-Meyer’s focus is limited to the United States, much of his argument can be applied across the Western industrialised world. The way we sleep, he argues – and the way we think about sleep, both medically and culturally – is the product of a particular combination of historical and social forces, largely coming into play from the late nineteenth century.

While we tend to think of sleep as a natural fact – a human constant across cultures and time periods – recent scholarship has uncovered a rich, and often surprising, history and sociology of sleep. In his 2001 article ‘Sleep We Have Lost’ – expanded in his 2005 book At Day’s Close – historian A. Roger Ekirch revealed that, before the advent of industrialisation, most people in Europe did not sleep in one consolidated period overnight, but more usually in a segmented or ‘biphasic’ pattern of ‘first’ and ‘second’ sleeps, interrupted by a period of wakefulness.

Our conceptions of ‘normal’ sleep provide Wolf-Meyer’s starting point for The Slumbering Masses. How, he asks, have we come to view eight hours of sleep – consolidated, motionless, solitary or with an intimate partner, in a room set aside for the purpose – as, if not an inviolable norm, at the very least the standard to which we must all aspire? Like Ekirch, Wolf-Meyer apportions a large degree of responsibility to industrialisation, and – more broadly – to a particular set of discourses associated with the rise of capitalism. With a nod to Max Weber, Wolf-Meyer devotes a chapter to ‘The Protestant Origins of American Sleep’. Early protestants’ commitment to worldly industriousness, the argument goes, generated a view of sleep as the enemy of productivity. A whistle-stop tour through more than three centuries of American protestant thought uncovers repeated characterisations of sleep as temptation, distraction, or waste of time. In 1690, the Massachusetts preacher Cotton Mather warns his readers that the devil lays ‘his most fatal snares … on the bed, where it is lawful for us to sleep’ (54). A century later, Benjamin Franklin admonishes his elite Parisian friends for their irregular hours, advising a strict routine of four-in-the-morning starts.

The advent of industrialisation and the factory system, with the concomitant requirement to regulate and coordinate large numbers of bodies, saw the question of sleep become a biopolitical problem. It was not the ‘lone sleeper’ but the ‘slumbering masses’ that became the subject of concern and regulation. In the nineteenth and twentieth centuries, Wolf-Meyer argues, ‘normal’ sleep became defined in relation to the spatial and temporal rhythms of industrial capitalism, centred on the working day and the working week. It was increasingly assumed that workers would build up fatigue during the day or over the week, enabling them to sleep for a solid period each night before returning to the factory ready for work. Against this background, alternative forms of sleep became pathologised as ‘sleep disorders’. In this context, the rise of sleep medicine in the twentieth century can be seen as a form of discipline, directed at aligning our bodies with the spatiotemporal demands of industrial society.

The four central sleep disorders discussed in The Slumbering Masses are sleep apnea, insomnia, parasomnias (such as somnambulism, night-terrors, sleep sex, and sleep eating), and narcolepsy. Each of these, Wolf-Meyer argues, is, in their own way, a disorder of time and of space, and a disorder of social life. The body does not sleep when and where it should. Sleep medicine attempts to realign individual’s bodies with the spatiotemporal rhythms of society through therapeutic interventions: behavioural, prosthetic, or pharmaceutical. Its model of treatment is not curative, but regulative, requiring the patient to submit to a regular and ongoing regime of closely monitored, chemically-controlled, or prosthetically-enhanced sleep and wakefulness.

‘An overlooked aspect of biopower’, Wolf-Meyer writes, ‘is the construction of the inevitable over and above its usual insistence on the production of the normal’ (155). The production of knowledge about bodies is concerned not only with what the body should do, but with what the body, by definition, must do: the limits and flexibilities of its behaviours, rhythms and potentials. Disordered sleepers, Wolf-Meyer argues, threaten our expectations about the body’s inevitabilities. Their stubborn refusal to align their bodies with the social demands placed upon them, disturb the very spatiotemporal order of capitalist modernity.

While some cultural critics (prominently Jonathan Crary in his 2013 book 24/7: Late Capitalism and the Ends of Sleep) have argued that the constant demands of technology and the market are destroying our sleep, Wolf-Meyer makes the more subtle argument that capitalism functions to make us sleep more efficiently. Rather than demanding the ‘end of sleep’, the social relations of capitalism require that we sleep in certain ways, and at specified times, so as to make us the most productive subjects in our waking hours. The model of the late capitalist subject, Wolf-Myer argues, is not the insomniac – ‘constantly awake, alert, and productive’ – but the narcoleptic, medicated ‘both to remain alert throughout the day and to sleep soundly at night’ (17).

If Wolf-Meyer’s nuance provides a useful corrective to polemics such as Crary’s, however, he does at times run the risk of ignoring important recent transformations in the structuring of time and space under neoliberal capitalism. In an economic environment no longer governed by the regularities of the factory, the traditional boundaries between work and leisure, production and consumption, day and night, are increasingly flexible. While Wolf-Meyer is critical of theorists who have predicted the ‘end of sleep’, he is perhaps premature in dismissing the ‘twenty-four hour society’ as a failed project. For example, while emphasising a reversal in the late-twentieth century drive towards open-all-hours businesses in the United States, Wolf-Meyer neglects the impact of the internet and mobile technology in ensuring that we are able to remain consumers even when the shops are closed. In the UK, to provide just one example, a recent Guardian article reported a rise of 30% in online shopping between the hours of midnight and 6am.[1]  Moreover, as one of the most interesting passages in The Slumbering Masses explores, one effect of globalisation has been to align the hours of workers in developing countries with the socioeconomic rhythms of Western capitalism, requiring, for example, operatives in Indian call centres to work according to American or European time zones, office hours, and holidays. The implication of this form of ‘spatiotemporal imperialism’ (188) is that our regular eight hours in the West may come at the expense of the disrupted sleep of millions of others around the world.

The Slumbering Masses is wide-ranging in its explorations of sleep and sleep disorders past and present. Interspersed with chapters on the history of sleep medicine and the pharmaceutical industry are often fascinating digressions on, amongst other things, sleep in children’s literature, the career of the ‘sleepwalking defence’ in American criminal law, and the manipulation (or minimisation) of sleep in extreme sports and the military. The downside of this impressive scope, however, is that the book can often feel unfocused. While numerous lines of argument are introduced, not all are followed through, while their relationship to an overall master-thesis is sometimes unclear. Wolf-Meyer’s prose is often dense, and at times frustratingly imprecise. Items of theoretical jargon are introduced with little explanation, only to be jettisoned a few pages later, often with the effect of obscuring, rather than clarifying, his arguments.

Wolf-Meyer’s strengths lie in his ability to combine patient historical research with a concern for the contemporary, and in his anthropologist’s attentiveness to the structures of everyday life. Perhaps due to his extensive fieldwork on the both sides of the doctor-patient divide, he is able to provide an account of sleep medicine that, while critically-informed, is at the same time refreshingly sympathetic, far-removed both from a top-down approach to the history of medicine that disregards the experiences of patients, and from the often caricaturish approach of much medical history, which presents practitioners as no more than the stooges of a nefarious ‘medical imperialism’. Having discussed the numerous past and present forms of sleep that humans have indulged in, The Slumbering Masses ends with a call for a new bioethical stance based towards variation and difference. ‘Multibiologism’, as Wolf-Meyer terms his (perhaps utopian) proposal, would entail ‘a cultural and medical acceptance of nonpathological variation within species, which recognises both society and biology as mutable limits’ (244). With a medical model less tied to an opposition between the normal and the pathological, he suggests, variations across bodies and behaviours might provide the basis for an expanded conception of human potential, and for a multiplication of new possibilities for life and society.

 

Steffan Blayney is a PhD student at Birkbeck, University of London. Twitter @SteffanBlayney.

[1] https://www.theguardian.com/money/2014/oct/10/internet-online-shopping-30-per-cent-rise-midnight-6am-john-lewis

Reclaiming Reflection: Creative Writing and the Medical Humanities (3)

16 Sep, 16 | by cquigley

 

 

Reminiscence Bumps: self-mythology and the landscapes of the mind

by Eleanor Holmes

 

When I think about the landscapes of the mind, I recall the undulations of the brain’s surface. The ridges and valleys of cortex, the gyri and sulci I had learnt about in my neuroanatomy classes aged nineteen. Those white plastic tubs we eased open to reveal two, pale grey hemispheres floating in straw-coloured formaldehyde. That clinical but distinctly organic smell of burnt rubber, astringency and wax. How we sliced sections of brain with something that resembled the knife my father used on home-cured ham. How surprisingly soft it was to cut.

Prior to starting my Spring School creative writing week at Newcastle University in 2014, I had read Pieces of Light: The New Science of Memory by Charles Fernyhough. It has been an invaluable source of information on the latest scientific research on memory, particularly autobiographical memory, but it has also been hugely inspirational as a piece of science writing (or creative non-fiction). Two things particularly stood out to me when reading the book and in researching this subject. Firstly, the notion that memory is random and secondly, that it is ultimately self-serving. As Charles Fernyhough states and the American writer and physicist Austin O’Malley wrote:

“Memory is a crazy woman that hoards coloured rags and throws away food.”

The randomness of memory is something that has often struck me. Why do we remember odd, apparently insignificant facts and not the things that would seem more important when looking back on our lives? Why can I recall the sandwich filling (garlic sausage) my brother threw out of the window that blocked the guttering, aged thirteen, but cannot remember the name of the actor who lodged with us? How can I remember the cigarette brand and packaging my grandmother smoked (Benson and Hedges, Silver) and a conversation we had about a TV programme aged fourteen but cannot remember any of the details of her funeral?

 Yet it is the small details, those seemingly random colourful rags that stick and then float to the surface when we recall the past, especially it seems when writing about it. It is particularly that rich period for memory from our teens to our twenties, the reminiscence bump that Charles Fernyhough writes about in Pieces of Light, that keeps emerging in my writing, whether I want it to or not.

“A British study showed that when autobiographical memories were cued verbally, there was a predictable peak between the ages of eleven and twenty-five: the well replicated phenomenon known as the reminiscence bump.”

The majority of the poems I wrote in 2014 for the Spring School fell into this verbally cued reminiscence bump. On the first day of our course, the poet Bill Herbert asked us to think about “where am I from?”, followed by “where do I identify as home?” This led to an exploration of self and belonging that I initially found hard to write about. I was born in Bristol, we moved to the Midlands when I was seven and there I stayed until I left for Nottingham University.

I disliked living in land-locked Warwickshire and didn’t manage to change this land-bound situation when I moved to Nottingham for university, but at least I had moved north. I have always been moving north, by increments, as well as edging closer to the sea. I had wanted to go to medical school in Newcastle but didn’t get an interview. I wonder whether it is really a coincidence of fate that led me to the North East (Durham initially and then Newcastle) or something that needed to happen; a kind of embodied genetic pull to this landscape next to the sea. Tynemouth is where I live now, positioned on the mouth of the Tyne and next to the North Sea with its wild surf and beaches, stretching up the Northumberland coast to Scotland like a golden thread. This is the place I am now most likely to call home.

What emerged from Bill Herbert’s class was a need to write about my birth, my mother and our at times difficult relationship. It was a theme that was to flow through all my submitted poems, along with water as the element that I most identify with. Bill also encouraged us to think of body as place, by reading an extract from Paterson by William Carlos Williams, a theme that resonated with me and the obsession I have with writing about the human body and my memories of anatomy and dissection from medical school.

It is now clear to me (after six years of pursuing a writing life alongside medicine) that when I write I don’t always decide in advance on form, I just like to write. It is later that I make a decision as to whether I am writing poetry, prose or script, when looking back over the words. Fiona Evans took our scriptwriting class mid-week and I was encouraged when she advised us not to be tied to form or structure. Her session also introduced me to Marina Carr as a playwright, specifically her play By The Bog Of Cats. As we read sections of this script it felt to me to be very poetic and suddenly the idea of scriptwriting seemed less daunting.

Learning about performance and the concept of the clown with ‘Miscreations Theatre’, and the history behind the art form with Helen Limon as facilitator, also influenced my poems, particularly the idea of embracing the ridiculous. The importance of being able to laugh at yourself I hope comes through in my writing. Black humour, said to be a medical trait but more often than not a coping strategy for the difficulties encounters of healthcare work, is something I often explore when writing about medicine and health. Too easily my writing can stray towards the subject of death; my father jokes that it is my favourite topic. It is perhaps an occupational hazard but I hope to strike a balance between being respectful of serious subjects whilst seeking out the humour inherent in most human interactions.

In William Fiennes’s class we were asked to draw a map from memory. I ended up drawing a detailed plan of my childhood home where we lived from the age of seven to sixteen, and wrote about the memories attached to this house. Here it seemed was an endlessly rich seam of childhood and teenage memories in terms of a reminiscence bump that still feels very vivid to me. I liked the idea of writing about my territory being invaded and many stories bubbled up from this exercise. I hoped it would link several themes together by highlighting an aspect of my growing up and the emergence of identity. This aspect of identity as an internalised life-story is another recurring theme in my writing, one that is so clearly linked to reminiscence bumps and the reason psychologists believe this age looms so large in people’s memories.

I am aware that much of what I’ve learned in creative writing workshops is that these small details – proper nouns, the use of all five of the senses when we write – that help to bring our writing alive. This must be linked to the way we remember. When we write we are creating a world (the world) for the reader, just as we do for ourselves when we remember the past. Memories are not stored like files in a cabinet, they are created anew each time we recall the past. We narrate our lives as serves us best at the time of recollection.

Childhood memories particularly are often recalled through collaborative acts of remembering, like a collage. I know that in a number of the poems I have written some details I’ve had to ask my mother about, as I couldn’t recall something exactly, or the name of a place or person. My mother, father and brother have helped me fill in the gaps where needed, but it is also noticeable that they do not remember everything as I do. Charles Fernyhough writes:

“The idea that the past is a story that we tell ourselves, whose vividness can be no guarantee of its authenticity, highlights our reliance on language for social acts of remembering. If our autobiographical memory system serves to create a coherent narrative of our own past, it is a system that can frequently fool us into believing stories that are not true, as evidenced by the fact that many of us ‘remember’ events that we no longer believe actually happened.”

This was the concept that I was fascinated to read about in Judith Schalansky’s beautifully realised Atlas of Remote Islands: Fifty Islands I have not visited and never will. Christy Ducker recommended this book (it’s really very beautiful, brilliant and unique) and the preface particularly intrigued me:

“The absurdity of reality is lost on the large land masses, but here on the islands, it is writ large. An island offers a stage: everything that happens on it is practically forced to turn into a story, into a chamber piece in the middle of nowhere, into the stuff of literature. What is unique about these tales is that fact and fiction can no longer be separated: fact is fictionalised and fiction is turned into fact.”

I think everything I write tends to start out as an exploration of autobiographical memory that I then run with, to a greater or lesser degree. Christy Ducker invited us to think of a place that we were experts on, then asked us to put someone into that environment who had no knowledge of it. This was the inspiration for My Mother Visits the Dissection Room, a blend of factual information in terms of place (the dissection room I remember from medical school and that I have lately re-visited) and my knowledge of my maternal relationship that ended up as a poem about an imagined scenario that incorporated all of these elements.

 

My Mother Visits the Dissection Room

by Eliot North

 

She said she wanted to go there.

So I pulled some strings,

read her the rules.

“Sensible shoes?” she said.

“Yes Mother. Plus clothes

you don’t mind ruined.

Fixers, they don’t wash out.

The smell will get you,

but not of death. More chemicals

like wax and rubber.”

But my mother, being my mother

didn’t seem to mind.

Walked right up to the

plastic head,

stuck her hand inside.

“You won’t even know

I’m here,” she said.

Pulled on a dark-blue lab coat.

Watched closely

as I unzipped the body bag,

revealed cavities and cages.

Stood on tiptoes to peer inside,

scribbled in her notebook.

So I placed a stool

three feet away;

her territory and mine.

When the students filed in

they looked at her,

the older woman with colourful shoes.

Whilst I quizzed the students,

she daubed her paints.

At the end they crowded round her.

Admired her line and

brave use of colour

whilst I put the organs back.

As the students left

she called out to them.

“Call me Poppy!” she cried.

They waved from the door.

“Weren’t they interesting?

What a wonderful body,

all those nooks and crannies.”

I slung the heart in a plastic bag.

Looked at my watch

before herding her out.

Then as we went to the door

she turned round and said,

“Shall we say the same time next week?”

 

Published by Ink, Sweat and Tears on 30/08/2016 http://www.inksweatandtears.co.uk/pages/?p=11697

 

These two concepts, the unreliability of memory and the way in which we narrate our lives using a blend of fact and fiction to best suit ourselves at the time of telling, is endlessly fascinating to me. I’ve struggled at times to differentiate between what I think actually happened and what I have imagined when recalling the past. The poems I write are often a conscious blending of fact and fiction, something termed in memory research as imagination inflation (what a great term!) I don’t like to pin down my writing necessarily as creative non-fiction. I would prefer to think of my poems as fictionalised truths. In this my drive towards a cohesive narrative wins each time; I will bend the facts to meet the needs of the story I am writing. Who hasn’t done that after all?

 

Acknowledgments

This essay draws on the poetry, prose and script suggested by tutors Bill Herbert, Christy Ducker, Fiona Evans, Helen Limon and William Fiennes, as well as the following books, performances and readings:

Fernyhough, Charles, 2013, Pieces of Light: The New Science of Memory, London: Profile Books Ltd. (quoted passages p 3, p 20, p 54.)

Ishiguro, Kazuo, 1995, The Unconsoled, London: Faber and Faber Ltd.

Lively, Penelope, 2013, Ammonites and Leaping Fish: A Life in Time, London: Penguin Books Ltd. Extract read by the author at NCLA Reading: ‘Penelope Lively in conversation with William Fiennes,’ on 1/5/14.

Payne, Nick, 2014, Incognito, London: Faber and Faber Ltd. (Script) and Performance at Live Theatre, Newcastle, 30/4/1/4 followed by post-show discussion with the author, neuroscientists and clinicians working with memory disorders.

Schalansky, Judith, 2010, Atlas of Remote Islands: Fifty Islands I have not visited and never will, London: Penguin Books Ltd. (quoted passage pp. 19 – 20)

Henig, Robin Marantz, The Reminiscence Bump: People looking back on life remember their twenties best. Psychology Today, Posted October 24, 2012. Cited https://www.psychologytoday.com/blog/cusp/201210/the-reminiscence-bump 2/8/16

Reclaiming Reflection: Creative Writing and the Medical Humanities (2)

15 Sep, 16 | by cquigley

 

Creative Non-Fiction: imagination and the nature of truth

by Eleanor Holmes

 

A copy of Primo Levi’s The Periodic Table lay on my bookshelf for years, a gift from my father, one of his favourite texts. The fact that I’d not actually read it until my creative writing tutor at Newcastle University, the author William Fiennes, re-introduced me to the collection, specifically the final story Carbon, reveals how I had for most of my life considered non-fiction to be less worthy of my time than fiction.

Why had I drawn such a distinction?

I had read numerous books at medical school by Oliver Sacks, such as The Man Who Mistook His Wife for a Hat and more recently Hallucinations. These books, it turned out, definitely fell under the banner of creative non-fiction. On the one hand they could be considered factual science writing, but Oliver Sacks as an author seemed to be doing so much more than that. This realisation made me re-think what this genre was or indeed could be. Since taking William Fiennes’ module in 2013, my consumption of creative non-fiction has dramatically increased and shows no signs of abating.

Creative non-fiction, as I now understand it, is writing based in truth that uses literary techniques more commonly associated with poetry, prose and script. The attention to character, voice, style, shape, structure and form mark out this genre from journalism and reporting; the facts of a piece not necessarily being as important as the way in which it is written. For me, the words ‘not necessarily’ are crucial here.

The suggested reading list provided by William Fiennes surprised me in its breadth and scope: memoir, reportage, nature writing, science writing, portraits, travel writing, case studies and essays. Unwittingly, I had read more than I had expected but it had never occurred to me to ask, “What kind of book is this?”

In favouring fiction, particularly the novel, I’d often sought to escape reality and move away from my own experiences as a child, growing up, going to medical school and latterly working as a doctor. I soon noticed that in writing creative non-fiction, whether telling your own story or that of another person, the writer can leave themselves very exposed. There is something that appeals to readers when an author states ‘this happened’ – to them or to someone else. It creates a stamp of authenticity that can be quite interesting to unpick.

The criticism Jon Krakauer received after publishing Into Thin Air is a reminder of this. In telling his own story, he was also telling the story of those who had died on Everest. His book reads like a thriller, the tension created by the narrative pace is palpable, but the story was never going to be easy to write or to be without its controversies. The moral and ethical debate surrounding consent and sensitivity when writing creative non-fiction is very interesting to me, particularly as this is something I have wrestled with when I have wanted to write about my own work as a doctor, the truth of my own experiences.

Having researched the science behind memory, I now know that when we recall something, memories are created from scratch using different areas of our brain. In remembering, we create our own unique version of the truth, every single time, which begs the question “what is truth anyway?” The latest scientific research on memory, gleaned from my reading of Charles Fernyhough’s fascinating book Pieces of Light, sits quite neatly alongside the fact that creative non-fiction can often blur what has happened (fact) with things that have been imagined (fiction). This creative license and economy with the truth when telling our own stories is something we are all likely to be familiar with, writers or not. I cannot remember with perfect accuracy conversations I had at the age of ten, but I can use my imagination to fill in the gaps, thereby telling the story I want to tell.

This seemed a minefield to me when I started to write, so much so that I wrote under a pen name and still do. This name is no longer a secret, I have become more comfortable writing about my experiences as time has passed. It now acts as more of a separation of my writer and doctor roles. The professional duties I am bound by I take very seriously; those of anonymity, confidentiality and consent. But these same concerns paralysed me for many years in terms of writing about my life as a doctor and all that medicine has done to shape who I am. The subject of family I find far easier to explore than strangers, colleagues or indeed patient encounters; not that I do not also consider and respect those professional parameters when writing about my family, particularly consent, as my mother will attest to in my latest series of creative non-fiction blog posts entitled Consultations with my mother.

The two poems I’ve written and published about clinical encounters (He Blew Me A Kiss in the previous post and The Milkweed Monarchs here) are two examples of how you can blend medical science and clinical detail within a human narrative, writing from different points of view, using characterisation and voice alongside a narrative arc. Interestingly, I can’t seem to write poetry without some kind of narrative inherent in them, perhaps because I was a prose writer before I started to write poetry. It wasn’t possible to gain consent to write these poems from the persons that inspired them, so providing anonymity was very important when I considered publication; a very deliberate blurring of fact and fiction.

One writer from William Fiennes’ reading list particularly stood out for me, and that was Jo Ann Beard. We read her story Werner, and the dramatic tension she created and her poetic prose style mesmerised me. This was a piece of writing based in truth, but it was someone else’s story, that of a man called Werner who the author had read about and contacted. The way she got inside his head, however, and the use of flash backs was so effective at creating this man’s inner world as well as re-enacting the outer facts of his extraordinary escape from a burning building, that you felt you were experiencing what happened as if you were Werner himself.

What particularly struck me after reading this was “how did she achieve this?” I have since researched Jo Ann Beard and found her writing described as ‘dramatic re-enactments.’ I went on to source another essay called Undertaker, Please Drive Slow which was published in Tin House after The New Yorker declined to run it as creative non-fiction. She wrote this forward to the piece:

In December 1997, Cheri Tremble committed suicide with the assistance of Dr. Jack Kevorkian. What follows is a merging of fact with fiction: the external details of Cheri’s life and illness are as accurate as possible, gleaned from interviews with her friends and family, while the internal details – her thoughts, her memories, and what occurred after her loved ones saw her for the last time – are imagined.”

In Undertaker, Please Drive Slow she utilises flash backs to Cheri Tremble’s past and childhood, flickering memories that mark her decline from a healthy, working woman and mother through her diagnosis of breast cancer, the treatment she endures, then her terminal decline. The images she uses to convey the final circumstances of her death are free of cloying sentiment and all the more powerful for it.

This writing is however right on the edge, clearly controversial because of the subject matter and the question of ownership as well as truth, whatever we mean by this. It does however shed light on a subject that is so rarely spoken about, that of death and dying. Clearly we cannot ask the person who has died to tell us about their experience of dying, but in this extraordinary essay I feel Jo Ann Beard comes as close as possible to doing that. There is a kind of alchemy at work here, the way she pushes creative non-fiction as a genre to its very limits to explore an emotional truth that I believe would not have been possible if this had been written as fiction.

Primo Levi notes in Carbon his final essay of The Periodic Table:

The reader, at this point, will have realised for some time now that this is not a chemical treatise: my presumption does not reach so far… Nor is it an autobiography, save in the partial and symbolic limits in which every piece of writing is autobiographical, indeed every human work; but it is in some fashion a history.”

I have now finished reading The Periodic Table, a book that defies easy classification, something I now realise is a positive draw for me and that I seek to explore in my own writing. The blend of short stories, memoir and science writing, woven together by Primo Levi’s love of chemistry, his training and work in this field, his survival of Auschwitz and the horrors of the Holocaust, and his undoubted genius with words is such a moving and life-affirming whole.

BBC Radio 4 have just dramatised The Periodic Table for radio, the different chapters named after single elements from the periodic table broadcast in episodes, ranging from fifteen minutes to an hour. This provides a perfect entry point to Primo Levi’s work as well as a way in to explore this rich and endlessly rewarding genre of creative non-fiction. If you read or listen to no other essay of Primo Levi’s make it Carbon, the story of a single atom of carbon as it journeys from limestone crag to the author’s brain cell as he writes. As William Fiennes said to me it is perfection in writing, the perfect full stop.

BBC Radio 4 iPlayer: Primo Levi’s The Periodic Table, available now: www.bbc.co.uk/programmes/p040d1vz/members

 

The Milkweed Monarchs

by Eliot North

 

I was riding my favourite bike. The Chopper

with the red flag and the silver streamers on the handlebars.

Minding my own business, cruising down Beach Road

to school at Kaikoura Flat. Happened right outside the

Whale Watch Office. “Idiot tourists,” Dad said,

“never bloody look where they’re going.”

 

Don’t remember much after that. Just the pain

in my belly, the voming and that funny shaped

bruise that crept like a shadow across my skin.

“Handlebars mashed his Pancreas,” the guy said to Mum

after they airlifted me to Christchurch. Wish I could

remember the ride. They’d given me the needle by then.

 

Couldn’t understand a word when I came to; most of

the docs were from England. Got my own room

on the kids ward though, was pretty stoked at first.

Turns out nine weeks in one room can really turn you off

a place. Kept telling me I couldn’t eat and put a stupid tube

in my chest, for that pseudo-food to drip in overnight.

 

Would’ve gone mad if it weren’t for the Monarchs.

Mum and Dad bought them in from the farm,

loads of tiny ones on bunches of Milkweed. Boy were

they hungry, just ate and ate whilst I couldn’t. Got fatter

and fatter, the black and yellow stripes growing further

and further apart. They were more interested in them than me.

 

Didn’t mind though, those ugly critters. Gave most of them

names. Watched how they crawled around my room before

they tucked their tails under like upside-down question marks.

Mum said I was daft, but I knew the Monarchs would save me.

As soon as they slipped into those bright green overcoats

and changed for good, with their precious crowns of gold.

 

“Coincidence,” the docs said. I don’t reckon. My pancreas

would’ve been stuffed if it weren’t for them. When the cocoons

turned black and then transparent, I could see the orange

wings inside.  First one came out all small and wet with

a loud POP!  Like the noise my brother makes when

people kiss on TV. I knew it was my time too.

 

Just pressed the buzzer and the nurses came flying.

Pulled out the drips, blood spurting over the sheets

but I was free. Stretched my arms wide and stuffed a

Chocolate Fish in my mouth before they got near my room.

You should’ve heard the shouting but I didn’t care;

there weren’t no Pseudocyst in me no more.

 

Commended in the Hippocrates Poetry Prize NHS category 2014

http://hippocrates-poetry.org/hippocrates-prize/2014-hippocrates-prize-open/2014-hippocrates-commended.html

Published in the accompanying anthology

 

Acknowledgements

This essay draws on the suggested reading list provided by William Fiennes for his Creative Non-Fiction course at Newcastle University and the following books, periodicals and podcasts:

Beard, Jo Ann, 2002, Undertaker, Please Drive Slow, Tin House Magazine, Portland: McCormack Communications. Vol. 3, No. 4, pp 27 – 59.

Levi, Primo, 2000, The Periodic Table, Penguin Books, London. Translated from the Italian by Raymond Rosenthal.

Fernyhough, Charles, 2012, Pieces of Light: The New Science of Memory, London: Profile Books Ltd.

Cusk, Rachel, 2013, New Writing: Memoir, Newcastle: Mslexia Publications Ltd. pp 30 – 42.

Radiolab podcast: Season 3, Episode 4, 2007, Memory and Forgetting, New York: accessed 1/3/13 at www.radiolab.org.

N+1 podcast: Episode 3, 31st August 2011, Both Fish and Fowl – Jo Ann Beard, New York: accessed 16/3/13 at www.nplusonemag.com.

Reclaiming Reflection: Creative Writing and the Medical Humanities (1)

14 Sep, 16 | by cquigley

 

Poetry and Reflection: a powerful tool for learning

This post is part of a series over the next three days on the theme of Creative Writing and Medical Humanities by Dr Eleanor Holmes (pen name Eliot North).

 

 As a GP Tutor I’ve delivered seminars on the patient centred medicine (PCM) component of Newcastle University’s Medical Undergraduate (MBBS) course to 1st and 2nd year students, for the past three years. Professional reflective practice is taught and assessed across all five years of the curriculum.

The ability to reflect and learn from clinical encounters is central to medical education and continuing professional development. Delivered within a creative context, I believe written reflection can also be an important tool to foster wellbeing and resilience in healthcare students and professionals.

Working in an increasingly overstretched and under resourced system such as the NHS, in which clinician burnout and mental health problems are on the rise, the question of how we reflect on the difficult and complex nature of care is becoming ever more important to address.

Stating that the answer might be found outwith Medicine may seem heretical, but it is my belief that we need to look outwards to move forwards. The Arts and Humanities, like Health and Medicine, explore and reflect upon the human condition. What therefore can we learn from each other?

My last seminar with my first year group was entitled ‘Professional Reflective Practice 2.’ After a year of working together trust, an essential element of clinical reflection, had been built within the group. I used my own writing, a poem called He Blew Me a Kiss, as a launch point for discussion, which was published under my pen name Eliot North.

 

            He Blew Me a Kiss

 

She liked Frank, they connected

despite his expressionless face. Behind the wound-up limbs and tremor

a gentle man shone out from the mask.

 

When she visited they would share a cuppa,

chat about this and that. Do the ‘medication shuffle’;

a two-step dance they both knew well.

 

She’d heard about stem cell research.

How they’d taken swabs from patients’ skin. Growing stem cells

from skin cells in dishes, right there in the lab up the road.

 

These stem cells would then become brain cells.

Models of Parkinson’s just like Frank’s. For testing newer and better

medications and perhaps one day even a cure.

 

The last time she saw Frank it was snowing

but he insisted on accompanying her out. Standing by the gate like a sentinel

he’d wave her off that one last time.

 

Later she’d think of stem cells like kisses

blown on the winter air. The moment captured in her rear-view mirror;

A hand lifted slowly, toward a frozen face.

 

Published by EuroStemCell ‘Tales from Within: Imaginative Non-Fiction on Stem Cells,’ 2013. (Frank is a pseudonym)

http://www.eurostemcell.org/he-blew-me-kiss-eliot-north

 

I have found that reading a poem aloud, that I’ve written myself, is an extremely powerful learning tool. There are obvious medical elements I can draw out regarding Parkinson’s Disease and stem cell research, but more than that the poem makes an important statement about connectedness, communication, the complex and varied role of a doctor as well as the limitations of medical science. It speaks to students about the importance of getting to know patients and continuity of care; how embracing the humanity in an encounter can be both powerful and revelatory.

The moment captured in the poem will live with me until the day I die, reading it always chokes me up; I choose to show this emotion to my students. We as clinicians who teach, whether in seminars or on the wards and in clinics, are hugely powerful role models. By stating and showing that this encounter moved me I am by example saying, “It’s OK to show emotion.” This leads to discussions about professionalism, boundaries and clinician wellbeing linked to the evidence base that demonstrates better patient outcomes when doctors show that they are emotionally affected when breaking bad news.

I wrote this poem many years after the event, it was something that sat in my brain waiting to come out. I wish that I’d been able to share it with the man who inspired the poem but he died some years before I got it down on paper. It was a EuroStemCell competition, partnered with the Centre for Regenerative Medicine in Edinburgh that spurred me to write it.

The challenge to submit an ‘imaginative non-fiction’ poem that incorporated stem cell research brought this encounter immediately to mind, the link between stem cells and Parkinson’s a way to explore how I felt about this patient. Discussing the creative process and the fact that I write under a pen name and changed the patient’s name forms a nice link to the importance of anonymity, confidentiality and consent, as well as patient and doctor voice.

With my students I then facilitated a creative guided writing exercise on a memorable clinical encounter followed by small group work, drawing and writing Haiku. The seminar culminated in poster presentations delivered by the students to the group. The results were insightful, empathetic and moving; their use of metaphor and close observation giving authenticity to the explorations they had made of encounters with patients and carers struggling to cope with dementia, a potential diagnosis of cancer and the communication difficulties witnessed for a patient with learning disabilities, linking this to issues of capacity and consent.

As someone who uses creative outlets as a way of coping with the stresses of practicing medicine, it amazes me that the word ‘creative’ can strike fear in to the hearts of medical students and healthcare professionals alike. I believe that by embracing creativity and essentially our inner child, written reflection can be much more than a required component of assessment and appraisal. All humans have the capacity to be creative, no matter how much they protest to the contrary. The skill lies in being able to coax it out of them.

 

Acknowledgements

All of the work I’m currently doing in this area is in collaboration with Sue Spencer with whom I wrote the guided writing framework I used above with my students, influenced by reading the books and on-line resources below. We are delivering a ‘Reflection of Clinical Encounters’ workshop using creative writing methodologies in November 2016 for the Staff Development Programme, School of Medical Education, Newcastle University.

Writing Poems by Peter Sansom, Bloodaxe 1994

The Poetry Toolkit – The Poetry Trust 2010, available as a free PDF download http://www.thepoetrytrust.org/images/uploads/pdfs/Toolkit%20for%20Teachers.pdf

 

Related reading

S E Gull, R O’Flynn, J Y L Hunter. Creative writing workshops for medical education: learning from a pilot study with hospital staff. Med Humanities 2002;28:2 102104

Khaled KarkabiOrit Cohen Castel. Teaching reflective competence in medical education using paintings. Med Humanities 2011;37:1 5859

T J Collett, J C McLachlan. Evaluating a poetry workshop in medical education. Med Humanities 2006;32:1 5964

‘I am Book’ – Clare Best

1 Jul, 16 | by cquigley

Illustrated talk for University of Kent symposium

on Artists’ Books and the Medical Humanities, on 21 April 2016

http://www.kent.ac.uk/english/research/conferences/artistsbooks.html

I had been so looking forward to this wonderful symposium devised, designed and immaculately planned by Stella Bolaki, and to seeing the exhibition of Martha Hall’s and other book artists’ work  – which is still on until 14 August  (Prescriptions Beaney House of Art & Knowledge, 21 April-14 August 2016). Then I went down with a virus the day before the symposium and lost my voice overnight. Stella very kindly delivered my talk for me and showed the images that went with the words. Here is a potted version of my talk. See some of the images at https://selfportraitwithoutbreasts.wordpress.com/2016/05/26/illustrated-talk-for-university-of-kent-symposium-on-artists-books-and-the-medical-humanities-on-21st-april-2016/

As well as being a writer, I have worked as a fine bookbinder, a bookseller, an editor and a Creative Writing teacher. Throughout my life, making books has provided me with metaphorical and physical structures within which to reconstruct versions of my self, and body.

I am Book. A bold statement, but a pragmatic one. To a great extent we are all Book. We have our narratives, we talk of turning the page, or of starting a new chapter in our lives. We shelter, disguise or hide ourselves between covers. But I think I’ve always been particularly absorbed in the idea of books, of Bookness, and today I’m going to talk about why that is so, and perhaps my sense of Bookness might suggest things about artistic identity in general.

My father was a papermaker for his entire working life. As children, my brothers and I spent our Saturday afternoons at Dartford Paper Mill, where my father was then Manager. Our lives were full of paper samples and offcuts. I wrote on them, folded them into pamphlets and made childish books out of them from my earliest years. And I was an obsessive reader. It all began with the illustrated Golden Treasury of Poetry I was given for my 6th birthday. It’s still one of my most precious belongings. I feel a primal thrill when I open it. Most of the time, growing up, I had my nose in a book.

I went on to read English Literature at Cambridge, gathering along the way a passion for print and fine books, and after university I decided to become a book maker and book doctor – I trained as a Fine Bookbinder and loved working with fine papers, cloths, marbled papers, leather, vellum, gold leaf. But after nearly wrecking my eyesight with close work (gold tooling) I was obliged to change professional direction. I went to work for Tim Waterstone in the early 1980s when his bookshops were taking London by storm. In time I moved across from the art book department at the High Street Kensington store to working with Waterstones Publishing Division, first as a researcher, then as an editor. Later I was an editor for ten years with the French publisher Gallimard Jeunesse and their English language partner Moonlight Publishing.

I can see now that up to this point I was wanting more and more to inhabit Bookness – to read, to make and bind, to edit and publish and sell – but had not yet dared to jump into the very stuff of my identity, or identities – the writing itself. And, through the writing, to uncover the reasons for my Bookness in the first place.

So I see these stages of my life, up to my early 40s, as serial constructions, deconstructions and reconstructions of different versions of myself in the world, in efforts to find out what I was and where I belonged. I was creating and exploring a kind of library showing different aspects of my identity, or indeed different identities.

Since then, the past twenty years have represented a deeper and infinitely more satisfying deconstruction and reconstruction of my self, my selves, through writing and making Books that I inhabit from the inside, outwards.

I had always written, but the pressure to ‘come out’ as a writer built up through the 1990s and beyond. The latter part of this period then coincided with another pressure in my life, that of facing head-on my high risk of contracting the genetic breast cancer in my mother’s family. The result of this confluence was my first full collection of poetry, Excisions, which has at its core the autobiographical cycle Self-portrait without Breasts.

(Here I would have read a few of these poems, alongside showing some of Laura Stevens’ photographs which were taken in two shoots, the first a few weeks before, and the second some 18 months after, my risk-reducing double mastectomy.)

 

Self-portrait without Breasts

 

Tangled hair, charcoal-socket eyes,

mouth slack after one more long night

restless on my back. This body’s fenscape,

manscaped, hills removed – the meaty joins

still livid, tight shut mouths

where distant territories were stitched

 

in touch. Blood seeps in deltas over ribs,

yellow and purple track to the waist.

You’re even more beautiful now, you say

and I believe, for though I never was, I am

explorer, seeker – I’ve travelled

and I have an ear for truth.

 

Memento

 

When you cast me, I held my breath

as the plaster set. You kept your focus,

capturing the contours of my breasts.

 

Remember that awkward fold by the clavicle,

air trapped between layers, remember

my fear – that flesh could not be cast

 

to look like flesh. But now, when I touch

the rough white woven skin, I want to quit

my body, let the twin chalk rind

 

contain my breath, while I recall a lover’s kiss,

the heat of milk-tight flesh, my newborn

trying to focus as I held him.

 

How will I remember this?

Numb flesh stapled over ribs,

my breath snagged within.

 

Making the Self-portrait poems provided me not only with a way of working through and revisioning my experience of this trauma and its many repercussions, but also with a way of reconstructing my changed body into a body of work – and, metaphorically and literally, into a Book. Excisions has proved to be a key book in my development as a writer and in my personal growth – a milestone on my artistic journey. At the level of line and stanza, as well as at the level of physical object, I used poetic form to bring new order to my altered identity and to my sense of belonging both in terms of family history and artistic inheritance.

I later put together that very solo experience of writing the Self-portrait without Breasts poems with Laura Stevens’ before and after photos (in book/pamphlet form, as Breastless).

Since then I have returned several times to the Bookish concept of collaboration – through a site-specific theatre piece called Vacant Possession co-written with Sara Clifford in summer 2015, through a multimedia project Take Me With You: the museum of friendship, remembrance and loss, with the film-maker Tim Andrews, which was launched at BSMS in February 2016, through Springlines, a project with the painter Mary Anne Aytoun-Ellis in which we are exploring hidden and mysterious bodies of water across the South of England – and through a three-way collaboration to make CELL, involving my own long poem in twelve parts, Michaela Ridgway’s drawings and Katy Mawhood’s design.

This last project, CELL, had been many years in gestation before being published in its unusual ‘almost-pamphlet’ state in 2015, and in some respects it is – of all the books I have made – the one that most closely represents, in its themes and emotional content and in its form, my own earliest sense of identity.

The poem is a retelling of the story of Christine Carpenter, a girl of fourteen who was enclosed in an anchorite cell in 1329. She requested release after more than a thousand days of living in the cell, and did come out, only to be forcibly re-enclosed when the Bishop heard of her release.

I myself was sexually abused, and emotionally ‘locked away’ as a young child. I underwent many years of isolation, silence, shame and suffering before finding my way out of the cell and into healing.

(I would then have read out parts of an interview about CELL with Kay Syrad for the most recent edition of The Frogmore Papers.)

 

Kay Syrad in dialogue with Clare Best about CELL (Frogmore Press, 2015)

 

‘KS: Getting ready to read CELL, I found myself acting rather ritualistically: I cleared the table, placed the pamphlet parallel to the edge of it, carefully removed the wrapper, studied the cover and the printed burgundy paper sleeve, eased off the sleeve and finally held the pamphlet in my two hands. Standing up throughout, I read the poem until I came to the point where, following the diagram, I was to unfold the pages in a way that creates a paper ‘cell’. There could be no rush.

 

I think this is the closest I have come to genuinely embodied poetry: knowing there is a potential space within the form, waiting for it, creating it, reading the poetry within that confined space, unfolding the structure to a flat sheet and then refolding it into its pamphlet form – these experiences seem to me quite as emotionally significant as reading the poem. Would you agree?

 

CB: With CELL, I wanted the reader’s experience of content and physical form to be especially closely bound.

 

To write the poem, I’d researched what happens to the body and mind in situations of extreme privation such as enclosure in a basic cell over this kind of period. I wanted to emphasise the changes Christine would have lived through by achieving a physical form for the work which is several different things at once (pamphlet, paper sculpture, flat printed sheet) and which suggests alternations between different states.

 

The object’s form is designed to mirror the unfolding drama described in the poetry and the drawings. Early sections of the poem can be read by turning the pages, so far so relatively normal. Then the reader discovers the ‘cell’. Next they must open the entire sheet – making the ‘cell’ vanish and freeing its imagined prisoner – in order to find and read the last section of the poem. Finally, refolding the sheet into a pamphlet is like re-enclosing Christine or even burying her. Throughout, the reader is in some way complicit in the events of the poem simply by carrying out the act of reading.

 

KS: Your crystal clear, unflinching poem lives and breathes not only the pain of its subject, Christine Carpenter, but her heart-breaking effort to justify her pain – and in this way the poem speaks to every woman who knows the cultural and mortal price of imagined or projected ‘sin’. Clare, what precipitated the writing of CELL?

 

CB: I’d started thinking about the themes in CELL when I spent some intense weeks working with male life prisoners, witnessing the damage that separation and isolation can do to a person. And I know a lot, personally, about the damage inflicted on the self by shame. Finding and retelling Christine’s story presented an opportunity to write in a focused way about the double prison of isolation and shame.

 

CELL evolved slowly over a number of years when I was working on other poems and sequences and also on a prose memoir which explores relationships between daughter and father, daughter and mother. Christine’s mother plays an important role in CELL, although we never hear her voice. There are also male figures in the poem – the priest/father figure whom Christine watches through her cell window, the real or remembered or imagined Lucifer/rapist, and the Bishop. The mother’s absence, together with the ambiguous overlapping presences of these males, points to some essential but unspoken truth about Christine’s vulnerability. Today we would probably say that she was acting out a traumatic past. I am interested in how the ‘choice’ of extreme deprivation (still) can be framed as religious cleansing.

 

But in some ways I wrote CELL blind and it wasn’t until the poem was almost complete that I realised fully what it was about.

 

KS: The pen and charcoal drawings by Michaela Ridgway (who is herself a poet) also embody a claustrophobic intensity in the way they refuse to stay within their borders, at once hiding and exposing a female body that is tender and fierce, layered, smudged (almost erased), dark or clear. Can you tell us how this extremely effective collaboration began and how it developed into what we see here?

 

CB: I was finishing the umpteenth draft of CELL and beginning to think about how to send it out into the world, when I saw Michaela’s powerful and enigmatic drawings of female nudes which she was posting on Facebook. We met and talked at length. Michaela completely ‘got’ the poem and the layers of it, plus she agreed with my aim of wanting poem and art to work independently and together – this was no illustration task.

 

We talked about how we wanted words and images to complement each other, moods and feelings to bounce around between them. From this point, our work was to whittle down the choice of drawings, discover how to sit the images within or across the confines of rectangular spaces, and figure out where to place them in relation to the poetry in order to imply both incarceration and breakout, confinement and rebellion. We also wanted some significant blank space – with only a single folding sheet this was challenging, but we managed it!

At the same time that Michaela and I were thinking about all this, we were consulting the designer Katy Mawhood, whom I had commissioned. Katy had excellent ideas for placing Michaela’s art and my words in the context of the particular pamphlet form we had decided on. For instance, Katy’s suggestion for the lettering on the cover, where the C of CELL appears like a cap over the neck of a headless female figure, was daring. Michaela loved it and so did I. In fact, that C and the entire cover design encapsulate the power of word and image working in close harness.’

To finish, I’d say that for me and for my evolving identities, the idea of Bookness carries sacramental meaning.

Books, in all their forms and in all their manifestations in my life, have been my saving and my making, my containment and my freedom, my focus, my work and my relaxation.

I made my first books with my father’s discarded paper. Later – in training to be a bookbinder – I was preparing to rescue, restore and protect my own damaged and vulnerable yet resilient substance, my own Bookness. I was drawn to bookselling and publishing because they kept me in close contact with my life blood. But writing and imagining my own Books into being has been and is for me the most faithful and true expression of my identity/ies.

I like to think of my bookbinding skills, tools and materials as interchangeable with elements of my life and creativity. I start with flat sheets, I fold and sew and cut them into books, press them in presses, cover them, decorate them, leave them under weights. Like the surgeon or the tailor – as a writer, artist and maker of books, I keep my knives sharp, my eyes clear, my needles and tape measure close to me.

As a child I reached for what was closest and I made of the materials what I could, what I had to. I have continued to do this and I will do it all my life.

 

The bookbinder

 

Pare the leather, thin the skin

where it must stretch and crease.

Then paste: the tanned flesh darkens,

 

wet and chill, fingers working

over spine and cords, into joints,

mitreing corners neat and flat.

 

Bandage the book in paper, let it

settle under weights, day after day

until the leather’s dry and tight.

 

When the time is right for finishing,

black the room, clamp the book

spine up in the beech-wood press,

 

the lamp pointing where to begin.

Hot brass letters and a vigilant hand –

an accurate blind impression.

 

Paint in glair with a fine brush,

lay on gold leaf, with level breath.

Tilt the light, shadows will reveal

 

the place to press the tool again.

Now, strike the gold – feel the title

word by word, bright in the grain.

 

Clare Best is a poet and writer with particular interests in writing body and landscape. Her poems are widely published in magazines including The Rialto, The London Magazine, Magma, Resurgence, Agenda and The Warwick Review. A chapbook, Treasure Ground (HappenStance 2009), resulted from her residency at Woodlands Organic Farm on the Lincolnshire fens. Breastless – poems from the sequence Self-portrait without Breasts with photographs by Laura Stevens – came out with Pighog in 2011, and Clare’s first full collection, Excisions (Waterloo Press 2011) was shortlisted for the Seamus Heaney Centre Award. She teaches Creative Writing for Brighton University and the Open University, and lives in Lewes, Sussex.

www.clarebest.co.uk

http://selfportraitwithoutbreasts.wordpress.com

Kay Syrad’s website: www.kaysyrad.co.uk

 

Book Review: The Way We Die Now

28 Jun, 16 | by cquigley

 

O'Mahony_THE WAY WE DIE NOW

 

Seamus O’Mahony, The Way We Die Now. Head of Zeus, 2016.

 

Reviewed by Richard Smith

 

Perhaps the first and most important thing to say about this book is that it’s a joy to read. I started it on a flight from Dhaka to Mexico City when I was exhausted, but quickly I was deeply engaged and read it for the last two hours of the flight. When I was eating alone I chose it rather than my E M Forster novel. “But isn’t it depressing?” asked a friend. “Not at all,” I answered, “it’s a joy.” Most books a medical journal sends you to review may be packed with wisdom, but they are a labour not a joy to read. (I might add, as a committed Kindle reader, that the book is also physically beautiful, even including a ribbon as a bookmark, a splendidly old fashioned delight.)

Seamus O’Mahony has written the book using his own extensive experience of people dying in acute hospitals and the experiences of friends and family, but the best parts of the book may be his critical accounts of thinkers—like Phillipe Ariès and Ivan Illich—who have gone before and his witty analysis of the deaths of various celebrities, including Susan Sontag and Christopher Hitchens, both sceptics who fought death beyond what was sensible.

I hope that when I die that I have a doctor like O’Mahony to look after me, a doctor who is deeply conscious of the many failings of medicine and his own fragility. He tries all he can to avoid The Lie, giving the false impression that a dying person is not dying, and he calls together patient, relatives, and nurses to have the Difficult Conversation, the discussion when he tells patients that they are going to die. “It is much easier,” he writes, “in the middle of a busy clinic, to order another scan than to have the Difficult Conversation.” And “The entire modern hospital system conspires against those doctors willing to have this dialogue: the relatives, the chaos and noise of the environment, the techno-juggernaut of modern hospital care, the customer-friendly doctors who are happy and willing to dole out false delusional hope, and sometimes the patients themselves, who may not want to hear what the doctor has to say.”

The last clinical medicine I did was in an oncology ward in New Zealand, and I was left feeling that I’d completely misunderstood my medical education. I thought (and this was 1978) that patients with metastatic cancer, most of those in the ward, were close to death. But nobody mentioned death. The patients were all making plans for the future, the doctors were irrepressibly optimistic. O’Mahony “confesses” that he is an oncology, “schmoncology” “apostate” and quotes the Lancet Commission that “cancer treatment is becoming a culture of excess.” (The use of religious words is important because O’Mahony, brought up as a Catholic, agrees with Illich that modern medicine is becoming a global religion.)

The core of O’Mahony’s argument is that death is a bloody business and always will be. It is, as Henry James calls it, “the distinguished thing” that cannot be tamed or controlled, and the concept of a “good death” is a fantasy dreamt up by palliative care physicians, who offer deluxe dying to the few. Most people die in acute hospitals, which have become “a dustbin for all sorts of societal problems, not just dying” and are places of “filth, torture and death, a sort of antechamber to the tomb.” Dying well in such places is virtually impossible, and anyway “The needs of patients seem to come a poor second to those of the staff and the institution….much of modern medicine is characterized by a culture of excess and dishonesty, and this culture ill serves the dying.” People are poorly prepared for dying, and even the fashionable idea (of which I’m a victim) that “To philosophise is to learn how to die” is so much nonsense. None of us know how we will react when we learn we are close to death, rendering advanced directives absurd. And the move to assisted dying is a vain attempt to strip death of its “awesome grandeur.” Doctors, he complains, are “the whipping boys for our inadequate understanding of how we die.”

E M Forster would seem largely to agree with O’Mahony: on the day that I read The Way We Die Now I also read this in Howard’s End: “Sane sound Englishmen building up empires, levelling all the world into what they call common sense. But mention Death to them and they’re offended, because Death’s really Imperial, and He cries out against them for ever. Death destroys a man: the idea of Death saves him. Behind the coffins and the skeletons that stay on the vulgar mind lies something so immense that all that is great in us responds to it. Men of the world may recoil from the charnel house that they will one day enter, but Love knows better. Death is his foe, but his peer, and in their age-long struggle the thews of Love have been strengthened, and his vision cleared, until there is no one who can stand against him.” [If like me you didn’t know the meaning of “thews” it’s “the muscles and tendons perceived as generating strength.”

Wisely, O’Mahony doesn’t venture into love, but I think he’d be sceptical of the poetic notion that love can conquer death.

O’Mahony is a “doctor’s doctor” insofar as he resent the intrusion into the doctors’ space of lawyers, politicians, managers, evidence based medicine, guidelines, personalised medicine, narrative medicine (“which provokes mockery and contempt for its smugness”), shared decision making, informed consent (“a legalistic fantasy”) and worthy but empty platitudes from royal colleges, medical schools, medical journals, and the like. He believes, for example, that there is no good way to break bad news, although he concedes that there are bad ways, which does mean that there are better, if not good, ways. Medicine has, he believes, become a service industry rather than a profession. He seems as well to be in constant battle with patients’ relatives insisting that every last thing be done for their dying relatives—but he recognises that this folly comes not simply from families but from medicine and doctors having helped create unrealistic aspirations. He quotes Kieran Sweeney, a doctor who wrote about being diagnosed with mesothelioma: “When is enough enough? This will be the defining question for the next generation of practitioners.”

He raises but does not explore what medicine is for, writing “I obstinately cling to the notion that a doctor’s role is limited: our job should be the treatment of illness.” Are doctors not to be about promoting health and preventing disease? And what about relieving suffering? Some argue that that is the true role of the doctor, recognising that suffering and illness are not the same thing. Taking O’Mahony’s notion literally would imply, which he surely didn’t intend, that once the doctor could no longer treat the illness (not the patient, note) he would hand over the dying person to somebody else. In fact, he believes, as I do, that caring for the dying patient is the job of all doctors not just palliative care physicians. Perhaps he can explore what medicine is for in his next book.

“The default setting of modern medicine is full intervention,” writes O’Mahony, “unless you are instructed otherwise.” This might be the starting sentence for a chapter arguing in favour of advanced directives and assisted dying, but in fact he’s strongly against both. His argument against advanced directives is simply that we cannot know how we will feel about dying until we arrive at the day when we know it’s close, so an advanced directive is meaningless. I have an advanced directive which I’ve emailed to my wife and children, and like most doctors I think at this stage that I don’t want anything heroic. I doubt that I’ll have the courage to forego all treatment like Ivan Illich, but I find the prospect of morphine and whiskey much more attractive than chemotherapy. I accept that I may think differently when the day comes, and if I’m conscious and in my right mind then the advanced directive won’t be needed. If, however, I have, say, a stroke, then I may well not be conscious. In those circumstances it is what I think now that is relevant—even if I would have thought differently if conscious.

His argument against assisted dying seems to be an objection to control. He does not rehearse the arguments for and against assisted dying but rather objects on almost poetic or religious grounds. It is an affront to “the distinguished thing” to try and control it, and people are behaving like God in trying to control death. He writes almost cruelly about Marie Fleming, an Irish “right to die” campaigner who took her case to the Supreme Court and became “something of a national heroine.” She had, he writes “an obsession with control” and her time in court “gave her ‘the voice she always craved.’” Had she succeeded in her case then “she would have altered forever the way in which I practice my profession.” O’Mahony may retire before it happens, but it seems to me that assisted dying is going to become routine eventually just as abortion has. We can trace its steady appearance around the world, including most recently in Canada.

I’m not sure why O’Mahony should object so strongly to control. I imagine that he is in control of most of his life–and very glad that he is. He was presumably in control of getting married, choosing his profession, and determining how he would spend his spare time and energy. The problem seems to be with trying to control death—partly because it never can be controlled. We will all die—and thank goodness that we will—and we can’t control that, although many are trying. But we can potentially control how we die. O’Mahony does not write about suicide, but presumably he accepts its legality. He’s no doubt read Hume’s famous essay making the case for suicide. There are several arguments against assisted dying, but I don’t accept O’Mahony’s argument that trying to control death is unacceptable.

O’Mahony writes approvingly of “tame death,” a termed coined by the French historian Phillippe Ariès. In pre-industrial Europe tame death was characterised by “indifference, resignation, familiarity, and lack of privacy.” None of those—except perhaps resignation—are likely to return, and O’Mahony thinks that we are unlikely to be able to fashion a secular version of tame death—because “death is tamed by ritual.”

But is he right to be so sceptical? He’s surely right that death in an acute hospital is unlikely ever to be anything but mostly bad. But does death have to happen in hospital? And does death have to belong to doctors caught up in what he calls “the madness…[of] much of modern medicine”? O’Mahony advises that “A wise person needs to acquire and treasure an amicus mortis, one who tells you the bitter truth and stays with you to the bitter end.” That amicus mortis could be a doctor, but it need not be—and even if is the doctor does not have to be in the hospital. We are seeing the emergence of doulas for the dying, lay people and a modern version of amicus mortis.

It’s a pity that O’Mahony does not write about the social movements—like Dying Matters in England and Good Life, Good Death, Good Grief in Scotland or the community programme in Kerala, India—that are trying to bring death back into life and demedicalise it. Perhaps he would be scornful, but, as his book convincingly shows, doctors have made a mess of death—perhaps lay people, assisted by doctors, can do better.

 

Related articles and posts:

Neil Vickers. Book review: At the end of life: true stories about how we die. Med Humanities 2012;38:2 122123

F Brennan. ‘As vast as the world”–reflections on A Very Easy Death by Simone de Beauvoir. Med Humanities 2004;30:85-90

Robert C Abrams. Book review: The Violet Hour: Great Writers at the End. http://blogs.bmj.com/medical-humanities/2016/06/10/the-reading-room-the-violet-hour-great-writers-at-the-end/

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