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literature

The Reading Room: When Breath Becomes Air

9 May, 16 | by cquigley

 

Hope, Oncology and Death

Seamus O’Mahony

 

When Breath Becomes Air by Paul Kalanithi. London: The Bodely Head, 2016.

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Paul Kalanithi was nearing the end of his neurosurgical training at Stanford when aged thirty-six, he was diagnosed with stage IV lung cancer. He had never smoked. He was referred to an oncologist specializing in lung cancer. “Emma Hayward” – not her real name – is a central figure in his posthumously-published memoir When Breath Become Air. At their first consultation, Emma refused to discuss survival statistics for stage IV lung cancer, but encouraged Kalanithi to return to work as a surgeon. I shared Kalanithi’s initial reaction: “Go back to work? What is she talking about? Is she delusional?” He argues that for the patient, cancer survival statistics are of little help or succour: “It occurred to me that my relationship with statistics changed as soon as I became one . . . Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

But statistics and probability were important for Kalanithi. Examining his options, he reasoned: “Tell me three months, I’d spend time with family. Tell me one year, I’d write a book. Give me ten years, I’d get back to treating diseases.” After an initial encouraging response to chemotherapy, his oncologist is wildly optimistic:

Going over the images with me, Emma said, “I don’t know how long you’ve got, but I will say this: the patient I saw just before you today has been on Tarceva for seven years without a problem. You’ve still got a ways to go before we’re that comfortable with your cancer. But looking at you, thinking about ten years is not crazy.”

As it turned out, Kalanithi survived for twenty-two months following his diagnosis, some distance short of ten years. Encouraged by his oncologist’s optimism, as well as Samuel Beckett’s famous exhortation (“I can’t go on. I’ll go on”), he returned to work as a surgeon: “One part of me exulted at the prospect of ten years. Another part wished she’d said, “Going back to being a neurosurgeon is crazy for you – pick something easier.”” Returning to the operating theatre, he had to lie down during his first case, but “over the next couple of weeks, my strength continued to improve, as did my fluency and technique.” Soon, however, the stark reality of his disease caught up with him:

But the truth was, it was joyless. The visceral pleasure I’d once found in operating was gone, replaced by an iron focus on overcoming the nausea, the pain, the fatigue. Coming home each night, I would scarf down a handful of pain pills, then crawl into bed . . .

Inevitably, as his disease progressed, he knew he could no longer work as a surgeon. When a CT scan showed that his disease was advancing again, “Emma Hayward” managed to put a defiant, Churchillian spin on the situation:

“This is not the end,” she said, a line she must have used a thousand times – after all, did I not use similar speeches to my own patients? – to those seeking impossible answers. “Or even the beginning of the end. This is just the end of the beginning.”

And I felt better.

On the day he was due to attend the graduation ceremony from his residency program, Kalanithi was taken suddenly ill, and ended up in the Intensive Care Unit, where various specialists, including nephrologists, endocrinologists, intensivists and gastroenterologists squabbled over his treatment. Kalanithi refers to this as “the WICOS problem” – Who Is the Captain Of the Ship? Emma – who had been away on holiday – returned, and took over the role of captain. Having pulled her patient through this crisis, she reverted to her relentless optimism: “” You have five good years left,” she said.” Kalanithi, however, saw this wishful, magical thinking for what it was: “She pronounced it, but without the authoritative tone of an oracle, without the confidence of a true believer. She said it, instead, like a plea.” He is remarkably forgiving of this fudging and fibbing, this hesitation to be brave:

There we were, doctor and patient, in a relationship that sometimes carries a magisterial air and other times, like now, was no more, and no less, than two people huddled together, as one faces the abyss. Doctors, it turns out, need hope too.

“Emma Hayward”, like many American oncologists, is part conventional cancer doctor, part shaman. She seems to have been able to simultaneously believe two truths. The conventional cancer doctor part of her surely knew that Kalanithi was, at that point in his illness, unlikely to survive five months, let alone five years, yet the shaman part of her half believed the lie she was telling her patient and herself. Her no doubt well-intentioned exaggeration of Kalanithi’s survival prospects led him to take the ill-advised decision to go back to work as a surgeon, when his remaining time might have been more fruitfully spent with his family and his books.

Kalanithi muses on the nature of hope in terminal illness:

When I talked about hope, then, did I really mean “Leave some room for un-founded desire?” No. . . So did I mean “Leave some room for a statistically improbable but still plausible outcome – a survival just above the measured 95 percent confidence interval.” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average?

Atul Gawande wrote how the entire edifice of American cancer treatment is based on the assumption that all patients with advanced cancer are in the small, statistically favoured end of the bell-curve, the medical equivalent, he observed, “of handing out lottery tickets.” Cancer patients are routinely treated on this assumption (or hope), but are not prepared for an outcome – death −  which is overwhelmingly more likely. Optimists would cite the example of the palaeontologist and writer Stephen Jay Gould, and his famous essay, The Median is not the Message. Diagnosed with a rare form of cancer (primary peritoneal mesothelioma), Gould looked up the survival statistics, and found the median survival was just eight months. He noticed, however, that the survival bell-curve was not symmetrical, that it was right-skewed, with a small minority of long-term survivors. Gould reasoned that he might just be in this small minority: “I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment.” He was right: he survived for twenty years, dying of an unrelated cancer. I would imagine that this essay is holy scripture for American oncologists.

I am, I confess, an oncology apostate. Cancer treatment seems to offer some patients a toxic combination of false hopes and a bad death. And the oncology community itself acknowledges this. The Lancet Oncology Commission produced a  lengthy report in 2011 called Delivering Affordable Cancer Care in Developed Countries : “The medical profession and the health-care industry have created unrealistic expectations of arrest of disease and death. This set of expectations allows inappropriate application of relatively ineffective therapies . . . cancer treatment is becoming a culture of excess.”

Can we give our patients hope, yet still be honest with them? “Hope” has acquired a very narrow meaning in the cancer setting, namely, an expectation of long-term survival. But for our patients, hope can mean all sorts of things: a reassurance that they will not suffer unbearably, an opportunity to settle affairs and spend time with family, a sure knowledge that their doctor will accompany them on the road as an amicus mortis. Giving hope does not mean creating an atmosphere of histrionic pretence, an atmosphere which inevitably explodes as the end nears. Hope and honesty are not incompatible.

Unfortunately, honesty is heavily disincentivized in modern medicine. A study published in the New England Journal of Medicine in 2012 found that the less patients with advanced cancer knew about their prognosis, the happier they were with their doctors. Nearly all families, and many patients, prefer the Lie. Although he eventually realized that his oncologist was telling him what she thought he wanted to hear, Paul Kalanithi believed in, and acted on, her initial over-optimistic prognosis. If a  man as well-informed and intelligent as Kalanithi could buy the well-intentioned Lie, what hope for the “ordinary” patient?

 

Seamus O’Mahony’s book The Way We Die Now was published on May 5 by Head of Zeus.

 

The Reading Room: This Living and Immortal Thing

13 Apr, 16 | by cquigley

 

And so it goes…this thing called life

Fergus Shanahan

 

9781783781676

 

This Living and Immortal Thing

By Austin Duffy

Granta Books, 2016

 

If authors write what they know, then Austin Duffy knows a lot, but This Living and Immortal Thing, his first novel, blends experience with fiction and offers more than informed opinion and insight to medicine, science, life and death. This is a story. The story teller is an Irish doctor who has left a childless, stagnant marriage to specialise at a famous cancer centre, recognisable as Memorial Sloan Kettering in Manhattan. As a post-doctoral trainee, he is comparatively mature in his mid-forties, and contemplates life and events in his new surroundings. Thinking of his younger brother Donal back in Ireland, he notices that America differs from home in having relatively few cases of Down’s syndrome. “They would not have allowed him to be born…with their blood tests and ultrasounds and amniocentesis needles…” His brooding juxtaposes several contrasting images: the bustle of the city ignoring a lone street protestor; the urgency of the clinic versus the controlled environment of the research laboratory; and a bored, hung-over clown employed to entertain sick children, bald from chemotherapy, reminds us that for the hospital staff illness is routine, but for the patients it is crisis.

At first, there is a trace of glibness in the narrator’s clichés but these are progressively replaced by more heartfelt prose that unfolds like a diary. His jadedness is jolted by the freshness and allure of Marya, a young Russian immigrant who volunteers as a translator in the hospital. Their dialogue is clipped, droll and loaded with sexual energy. She uses irreverent and refreshingly direct language. “So what sort of doctor are you anyway?” “You’re like, what…forty five? Are you homosexual?” He reveals his story with typical Irish reserve. But this is no ordinary flirtation; she has a secret. She seems hurried and doesn’t bother with his name – ‘post-doc’ will do. Post-doc is both intrigued and attracted, and his scientific mind repeatedly notes that men are seldom distracted from sex for long, regardless of the context.

“…doctors, they’re so stupid!” exclaims Marya, frustrated after witnessing a tactless communication of bad news to a patient. “I don’t translate word for word but only some….”  Silently, post-doc reflects how difficult it is to explain things properly though a translator but also easier because one is removed and less responsible for one’s words. He likens it to a high altitude bomber out of range from the sights and sound of the horror inflicted below. He is dispassionate about his experiences with terminally ill patients: “For the most part,” he says, “there is nothing to do except sit across from them and be kind.” In a commentary on communication, the eminent medical scientist Robert Brook once defined a physician by the following equation: physician = emotion + passion + science. Post-doc surely has emotion and recently switched from clinical to laboratory science, but may have lost his passion.

While grieving the physical and emotional distance from his own potential progeny, his care for the experimental animals is tender and touching, with each identified by name. He is opinionated about what it takes to be a good scientist, and is respectful but deeply critical of his supervisor Dr. Solter. Like all good scientists, post-doc is attentive to detail, painstakingly recording his observations, with a measure of humorous humility when Henrietta, his favourite mouse, is pronounced to be male by the visiting vet.  On the sole occasion when post-doc says something kind about Dr. Solter, it is to concede how well Solter communicates with the next of kin of a terminally ill patient. Curiously, he doesn’t seem very excited about the promise or impact of his own research; he bores a group of students when he is called to explain his project. Perhaps this is disillusionment or perhaps it is the key point: the scientific method is slow and repetitive and gives the lie to the popular misconception that science is fun.

There is, of course, no mystery about where the story will go, but this doesn’t detract from the parallels between the laboratory mice and the patients, the cancer cells and the frozen embryos from post-doc’s marriage, and a vigorous new cell line from a once vibrant donor. Along the way, the story is speckled with informed commentary on topics ranging from cancer to clinical arrogance. Some of post-doc’s asides are authoritative, like those on the poetry of W.B. Yeats and the music of Brazil. Others are enigmatic: “There comes a time when all there is to do is worry” and “Illness makes for an oddly insubstantive discussion,” whereas other pronouncements are quirky: “Generally you are better off when things are not resolved at all. You only have to ask any one of my previous patients that. It is rarely in your interests.”

If this is a book about cancer, then it is also about life, death, loss and replacement, and a book about medicine. With each, there is uncertainty. Medicine is the art and science of managing uncertainty. Post-doc has moved from the clinic to the research laboratory where it is “more controlled and predictable…in contrast to clinical work, where you have only an illusory or – at best – superficial control over things.” When questioned by Marya, he is vague on the reason for his change: “Humans are tricky, I suppose… Unpredictable.” In the research laboratory: “You set your own conditions and, to a large extent, the future is predetermined.” Is this self-serving? Is post-doc a reliable narrator? Later, he claims: “Given the choice I would take uncertainty over certainty every time.” He believes that a true scientist’s mind should move slowly and should “question everything.” He is critical of people like Solter whom he believes “has too much certainty” to be a natural scientist and whose mind is “moving too quickly for science…” Since childhood, post-doc has had a searching mind and was described by his school teacher as “a fan of distraction.” Now, he wants to slow things down in his life, to focus and to cope with the passing of time, and this, in his view, is as good a reason as any for going into the laboratory, where he can focus on the continual cycle of life, death and replacement.

This is a book that I expected not to like, much of it too familiar to me. Now, I miss the accented penetrating language of Marya and the distractions of post-doc.

The Reading Room: Jenny Downham’s ‘Unbecoming’

17 Feb, 16 | by cquigley

 

Unbecoming by Jenny Downham.

Published by David Fickling Books, 2015.

 

Reviewed by Katie Hodgkinson, Medical Student

 

Unbecoming jacketfront

They say don’t judge a book by its cover, but the cover of Unbecoming is beautiful, and the story inside even more so. I’m generally a bit wary of Jenny Downham as an author because I did not enjoy Before I Die, and when I read the blurb for her most recent work, I wasn’t intrigued. It sounded very stereotypical, and to be honest, just like every other young adult book out there.

How wrong I was.

Unbecoming is a long, thoughtful book that covers three family stories, giving us three beautifully explained situations. The power behind such wonderful writing will make you think and question whether you’ve really determined the extraordinary richness behind the lives of people you might generally consider entirely average.

The book follows the story of three characters: Katie, who’s struggling with her sexuality, her mum Caroline, who’s struggling with just about everything, and Katie’s grandmother Mary, who has Alzheimer’s and who has just lost her long term partner. Unlike most young adult books, Unbecoming contains an LGBT character without the need for the book to be entirely devoted to the issues of LGBT acceptance and romance. I thought Mary’s story in particular was very well crafted and it formed the bulk of why I liked Unbecoming so much. The book explains the thoughts and feelings of someone with progressive memory loss very effectively, and for this reason I’d say that this book (or at least Mary’s parts) is a must read for anyone working with the elderly.

At the start of the book, Katie and Caroline barely know anything about Mary. We begin at the same point that many doctors might do – seeing the grandmother as someone in need of care, but for whom we have no particular attachment. Mary is sent home with Caroline and Katie to a world unfamiliar to her.  As the story develops we learn more and more about Mary – how she struggled to raise Caroline, how her relationship with her sister and father shaped her, and how all of this affects how she interacts with Katie. There are a lot of difficult topics involved, yet this remains an optimistic book.

At the beginning I thought that this was going to be a very long and tedious read about some very commonplace issues. Katie starts off by talking about her life and it all sounds very much like a whiny blog post from a teenager about how hard her life was – but then a rich tapestry evolves. When you meet someone you just don’t consider the ways that his/her life might interlink with those around them. This book demonstrates just how wrong such thinking can be. I’ve never read anything that works so well in support of holistic care – although there are several problems that could be solved so easily, in context some solutions make no sense at all. You question the hospital’s decision to send Mary home to a daughter she’s never known, and who has no idea how to cope with her mother. You wonder why on earth social services are so unhelpful to a family already struggling. The expectations placed on these three women by society are woven in and together seamlessly, showing you just how flawed these expectations can be, especially when created by those who have no understanding of what the lives and challenges of those outwardly viewed as ‘normal’ might be.

Unlike most young adult books, the focus here is firmly placed on family relationships. Yes, there is romance in Katie’s developing liaisons, but love doesn’t in the end conquer all. It also isn’t a typical ‘issue’ book that focuses exclusively on sexuality or dementia or learning difficulties or depression – it just presents the problems as part of everyday life, which makes them much more realistic. There was a real sense of the characters having a whole life, rather than the book merely showing the progression of one aspect. There is supposedly a twist at the end, but I thought that this was quite predictable and left a flat conclusion to an otherwise amazing book.

Unbecoming covers several hard-hitting issues and on discussion you’d assume they were too numerous to cover sensitively in one work. The book successfully shows us that an ‘ordinary’ person will go through many of these struggles in the course of their life, sometimes all at once, and that normally it just wouldn’t be considered that anyone would be processing this much turmoil in their life at any one time. Divorce, learning difficulties, Alzheimer’s, the changing views of society on single parent families, sexuality and grief – all of these are covered beautifully, giving us a real understanding of these three women and what makes them act in the way that they do.

The storytelling around Katie’s sexuality is beautiful. Far from realising her orientation and everything being sorted as is so often depicted in the fictional world, we see that same sex relationships are just as, if not more complex than otherwise seen. There is none of the usual ‘you’re gay I’m gay therefore we’re automatically in love with each other’ trope that seems so prevalent in young adult fiction at the moment. The pressures on Katie are realistic and ones that we can all relate to, and it’s so interesting to read the views of Caroline and Mary on these issues.

The descriptions of the relationships between mother and daughter, siblings and grandparents are diverse and evocative. There is something in Unbecoming for everyone because of the sheer detail and complexity, delivered so well as to be relatable in every sense. There is a slow unfurling of what makes these people tick and it’s something we perhaps miss in the hustle and bustle of everyday medicine. The relationships in the book develop slowly, with individual thoughts and processes being described so beautifully as to be haunting. You’ll go through your days after reading this book questioning everything. Unbecoming succeeds in delivering justice to the gradual development of its characters, both in spite of, and because of, the difficulties afforded to them.

The Reading Room: Clive James’s ‘Sentenced to Life’

4 Feb, 16 | by cquigley

 

Sentenced to Life

by Clive James. Published by Picador, 2015.

Reviewed by Dr Sam Guglani.

 

On a ward round, I notice a colleague speaking with one of the palliative care nurses – about a patient, or perhaps about processes, maybe even about a personal matter. His posture, and what I can hear of his tone, feels familiar. That particular weight and tempo given to conversations with palliative care, like those invoked for hospital chaplains – both the ostensible familiars of death and carriers perhaps of a particular wisdom. What wisdom? What lessons are there for the living – or do we romanticise it all? – from those so near the dying and those close to death?

The extraordinary Clive James – critic, essayist and poet – is unwell and almost certainly close, however modern medicine allows us to define that, to death. In 2011, he developed emphysema, renal impairment and leukaemia. A couple of years ago, medics and media alike anticipated his death as imminent, but new drugs have him in remission, very much alive and impressively prolific. He finds this ‘all a bit embarrassing’ and, regardless of the sensibility of that emotion, there is a sense of the world’s said media shuffling its combined feet and checking its watches. Waiting for him to die, so they can get on with the business of illuminating his life.

James, however, is ‘restored by [his] decline/ And the harsh awakenings it brings.’ And amongst a remarkable number of recent publications – translations of Dante, collections of essays – last year he returned to one of his first mediums of artistic expression: poetry. Described by James himself as ‘funeral poems’, Sentenced to Life feels like a collection of elegies. It forces us to think again about elegy as poetic utterance: what it is for and what action it might hold for the still living. Is it an analgesic against the pain of loss? Or might it turn us to face that loss, face death squarely, and in doing so actually illuminate life? Understood as such, might every poem – as Seamus Heaney is said to have commented – in fact be an elegy?

Throughout the collection, James points to the stark fact of human life’s presence and all our experiences, here, transiently, on this earth. In Event Horizon, he proclaims:

you get to see the cosmos blaze

And feel its grandeur, even against your will,

As it reminds you, just by being there,

That it is here we live or else nowhere.

 

And all the poems feel like they follow from this assertion, worrying away at the question of what we then do with our lives, how best to live, questions of meaning. For Clive James, so much meaning clearly gathers in the very fact of the world’s beauty as refracted within the human gaze. In Too Much Light, his cataracts ‘invest the the bright spring day/ With extra glory, with a glow that stings.’ In the title poem, he looks with astonishment at goldfish swimming in a garden pool: ‘never touching, never going wrong:/ Trajectories as perfect as plain song.’ Both poems sing of the imperfections of human agency, our messy trajectories and sight, as being both a source of pain and of wonder. But the fact of dying, of breathing the air ‘as if there were not much more of it there’, heightens for him a sense of sustained astonishment in the brevity and glory of every conscious moment, and its released multitude of revelations. He goes on, in Sentenced to Life, to reflect:

Once I would not have noticed; nor have known

The name for Japanese anemones,

So pale, so frail. But now I catch the tone

Of leaves. No birds can touch down in the trees

Without my seeing them. I count the bees.

 

This view of life’s preciousness echoes Dennis Potter who, in the last months of his life, spoke of seeing the beauty of the blossom outside his window in Ross: ‘it is the whitest, frothiest, blossoms blossom that ever could be, and I can see it…The fact is, if you see the present tense, boy do you see it! And boy can you celebrate it.’ Within these poems though, the revelation of our earth- and time-bound lives and of these brightly lit moments, carry further still. They bring us to what T. S. Eliot described as: ‘the only wisdom we can hope to acquire…/ the wisdom of humility.’

This is most manifest in his acknowledgement of the inevitability of death. In Driftwood Houses he declares this unsentimentally:

To hear me talk

You’d think I found my fate sad. Hardly that:

All that has happened is that I’ve hit the wall.

Disintegration is appropriate’

 

Such honest and forthright acceptance that our flesh must weather and fray feels infrequent in the consumer clamour within medicine and society for longevity, perhaps even for immortality. In Plot Points, further to the expressed awe in Event Horizon, James parallels the universe’s diminishing with our own, and notices how capable we are of choosing to forget both:

While you were reading this

Millions of stars moved closer

Towards their own extinction

So many years ago –

But let’s believe our eyes:

They say it’s all here now.

 

None of this hard-won sense of truth feels bleak or despairing, but instead is suffused with enchantment and perspective. He suggests that the truth clears away ‘so many souvenirs’. And in a life such as his, there are many such souvenirs. If there is regret in these poems, and there’s much of it, it isn’t around the fact that he is dying, but rather around how he has lived, how he might have lived otherwise: ‘If I seem close to tears/ It’s for my sins, not sickness.’ And from this regret he comes away with the remarkable conclusion that his current state is in fact more authentic than the illusory existence that preceded it. In the brilliant poem, Landfall he asks – ‘those years in the clear, how real were they’, and goes on:

I called it health but never stopped to think

It might have been a kind of weightlessness,

That footloose feeling always on the brink

Of breakdown: the false freedom of excess.

 

So now, rather than a life of ‘sirens’ and adoration, he asks for, and is gratified by, the present and the real: ‘Remember when I asked for thousand kisses?/ Let’s make it ten. Why not kiss me just once?’ And he arrives at, and brings us to, a place of ‘Thanks for the heartbeat which still lets me live:/ A consolation even now, so late’. Thanks for our life-giving pulse is a different position altogether to one of reductive expectation and rights. Faced with our finitude we might readily arrive at either: at thanks or at greed. However, it is a position of gratitude that opens us to what we owe, over and above what it is we are entitled to.

T.S. Eliot asked not to hear of ‘the wisdom of old men but rather of their folly, / Their fear of fear and frenzy, their fear of possession, / Of belonging to another, or to others.’ In the presence of his death, Clive James pushes against Eliot’s assertion and details in formally accessible and powerful poems, a recognition of his essential belonging to others, his fragility and so demonstrates acres of wisdom. In Leçons de Ténèbres, he wonders at the value of this:

But are they lessons, all these things I learn

Through being so far gone in my decline?

The wages of experience I ran

Would service well a younger life than mine.

I should have been more kind. It is my fate

To find this out, but find it out too late.

 

I can’t agree that wisdom like this can ever be won too late for any of us and, if we choose to listen, it will serve younger lives. So we ought to listen – as patients, as doctors, as one-day patients, and as human beings.

 

The Reading Room: Ronald Britton’s ‘Between Mind and Brain’

27 Jan, 16 | by cquigley

 

Between Mind and Brain: Models of the Mind and Models in the Mind

by Ronald Britton. Published by Karnac, 2015.

 

Reviewed by Dr Neil Vickers.

 

Ronald Britton is one of the most significant psychoanalytic theorists writing today. Now retired from clinical practice, though still active in training, he is perhaps best known for his contributions to Kleinian theory. His first book, Belief and Imagination: Explorations in Psychoanalysis (1998), asked questions such as ‘What is and where is the Imagination in any modern model of the Mind?’ and ‘How can we conceive of it in psychoanalytic terms?’ His second, Sex, Death and the Superego: Experiences in Psychoanalysis (2003), set out his thinking on three concepts that were important to psychoanalysis historically. Britton has always used literature as a kind of interlocutor for analytic theory. Belief and Imagination contains lengthy discussions of, and arguments with, Wordsworth and Coleridge, Blake, Milton and Rilke, as well as Freud, Klein and Bion; and Sex, Death and the Superego contains a compelling reading of the Book of Job and a fascinating extended speculation about the role that Wagner’s operas played in Jung’s correspondence with Sabina Spielrein. Britton is a medical humanist avant la lettre.

 

The theme of his new book, Between Mind and Brain: Models of the Mind and Models in the Mind, is that we think in models. Britton’s concern is more with the mind than the brain though the early chapters do make reference to contemporary neuroscience. In the first chapter Britton asks a question that once tormented Freud: would psychoanalysis and brain science ever arrive at a substantially overlapping account of mental experience? Britton’s answer is ‘probably not,’ though he thinks the reasons for this have changed since Freud’s time. The success of quantum biological models in neurology has resulted in a situation in which a mechanistic account of how the brain works has been replaced by one that is probabilistic (so outcomes can never fully be determined in advance), and full of complex, counterintuitive interaction (Patrick Haggard of Queen Square has demonstrated that, in a range of situations, the brain executes our intentions before these are consciously formulated in the mind). Freud originally hoped to ground concepts like repression in the workings of different types of neurones. Today, Britton suggests, convergence would have to be sought in other places, using different concepts borrowed from each discipline. At one point, he playfully suggests that the evaporating black holes of quantum mechanics might somehow dovetail with the psychic ‘black holes’ that psychoanalysts have described in very disturbed children. But the comparison remains at the level of play, because the two models aim to capture very different things. And models, along with their potential and limitations, are where Britton’s real interest lies.

 

For better or worse, psychoanalysis, like other psychotherapies, has to derive its models from directly-reported mental experience. Fantasies, conscious and unconscious, are models in Britton’s sense. But so too are theoretical constructs such as the Oedipus complex, the ‘depressive position’, or ‘basic assumptions’. Many people imagine that psychoanalysts apply these models dogmatically to their patients. On this view, patients are talked into seeing their difficulties as having an Oedipal origin, say. Britton takes this case apart at some length. The psychoanalyst, in his view, should aim as far as possible to set aside all models, especially those to which he is most attached. They will only distort what he sees. To understand another person, you have to tolerate not understanding him or her for a long time. Britton is on record as saying that he assumes he does not understand his patients for the first two years of four- or five-times-a-week analysis. Of course, psychoanalytic models are brought in, sceptically, but only gradually.

 

Occasionally, patients’ difficulties will be very well captured by a model. In Chapter 6, Britton gives the example of a man called Peter who entered psychoanalytic psychotherapy with a stammer. Peter led a very ordered life. He did not work. He had a celibate marriage. He avoided talking to his mother on the telephone, writing typed letters to her instead. And he appeared to have few friends. The model that seemed to fit Peter’s case was of a narcissistic organisation, as described by Herbert Rosenfeld. Patients in the grip of narcissistic organisations may want to make contact with others in the outside world but are prevented from doing so by an internal figure or group of figures who threatens terrible punishment. So it seemed with Peter who felt he had to isolate himself from his wife and mother and from the world of work for reasons that were unclear. Eventually he revealed that from the age of fourteen, ‘there had been a voice in his head that had ordered him not to speak and not to get close to anyone’ (53). Stammering was a way of obeying that voice. Peter also revealed he never stammered and could talk fluently when he was at home alone or when he was with children. Britton and Peter’s analyst took care not to introduce Rosenfeld’s model directly in Peter’s treatment until such time as he gave them cause to, which to their amazed delight he did. The model might otherwise have been a source of distortion and misunderstanding.

 

Analytic models can be useful only if they illuminate the analyst’s subjective experience of the patient’s subjective experience. But before such a point can be reached, analyst and patient have to learn to hear one another in as unprejudiced a manner as each can manage. It is to Britton’s credit that he does not minimise how difficult this can be for both parties. This stage of ‘building out into the dark’ as Freud called it, has its own micro-models too. Chief among these are the beliefs that the patient holds about himself and his analyst. ‘Believing,’ writes Britton, ‘is a form of object-relating. I think belief as an act is, in the realm of knowledge, what attachment is in the realm of love. The language of belief is clearly cast in the language of a relationship’ (82). For this reason, beliefs offer a point of entry into the patient’s internal world and the figures who inhabit it. They supply models of that world, seen from a certain point of view. At a more basic level still are the unmentalised psychophysical experiences that manifest themselves in the transference as ‘imageless expectations’ (19). These await transformation into the models constituted by fantasies, symbols and dream elements. These lower-level models form the bedrock of most patients’ and analysts’ analytic experience. The larger theoretical models such as the Oedipus complex or the ‘depressive position’ shimmer in and out of view but they must take their shape from this more detailed and theoretically open work. They have no substantial existence independently of it.

 

The systole and diastole of this process are transference and countertransference. Britton subscribes to the now widely-held but once heretical view that the analyst’s countertransference, far from being an obstacle to analytic progress, is a spur to it. The analyst has to be willing to receive the patient’s unconscious fantasies and to allow them to act on his unconscious mind. The hope is that the analyst will have enough self-understanding to distinguish what belongs to the patient from what he brings himself. Acting as the crucible for other people’s unconscious experience in this way is intellectually and emotionally demanding. As Britton observes, ‘Analytic neutrality does not mean freedom from emotion, it means unbiased observation of its play within ourselves’ (23). In his last book, Sex, Death and the Superego (2003), Britton went so far as to propose a new psychoanalytic nosography based on the kinds of countertransference experience that different sorts of patients evoke and some of that work is rehearsed again in chapter 7 of Between Mind and Brain.

 

Unsurprisingly, given his previous books, Britton thinks that literature and theology are rich sources of models of mental life. This volume contains interesting new material on myth as a model of mental life and on writing by Blake, Milton and Mary Shelley. Britton sees Milton as a man divided against himself. The theologian author of De Doctrina Christiana needed to secure himself against a suspicion that God might be a sadist (a line of inquiry which Stanley Fish argues runs through Paradise Lost). But the poet of Paradise Lost makes Satan the hero of his poem and depicts him as ‘a whole person experiencing conflict, remorse and dread’ (115). Satan (distinct from Milton) is a destructive narcissist in Herbert Rosenfeld’s terms and by engaging with him imaginatively, Milton defends himself against the depressive melancholia Britton thinks lay at the core of his theology. Britton has a vivid sense of what an achievement it is to live out ones conflicts in this way. In similar vein, Britton reads Blake’s Marriage of Heaven and Hell as an exploration of what is entailed in substituting one’s own ideal self for the superego. Most impressive of all is the chapter on Mary Shelley’s Frankenstein (‘What made Frankenstein’s creature into a monster?’). which Britton reads as a parable about the absolute horror of perinatal rejection for both mother and child’ (106).

 

I have given the barest indication of the many riches contained in this very fine book. I was left with only one puzzle. Britton says a great deal about Darwin the man in this book but very little about Darwinism’s implications for psychoanalysis. He complains at one point that the radicalism of Darwin’s theory of evolution has scarcely penetrated educated opinion. I think he’s wrong about that but what about Darwinian models of psychoanalysis: Bowlby’s, pre-eminently, but also the more modern version of attachment theory promulgated in this country by Peter Fonagy, Anthony Bateman and Mary Target and in the United States by figures such as Allan Schore? Neuropsychoanalysis is completely Darwinian in outlook. It would be good to have Britton’s opinion of these models, not least because they engage so many of his interests. The same thought was with me when it came to neuroscience, a field Britton holds in high regard. Neuroscience uses a thoroughly Darwinian framework when considering the structures of the brain: the basal ganglia making up the reptilian complex were the first to evolve; later came the limbic system, the seat of most of our emotional reactions; finally, the neocortex evolved, from which we humans derive so many of our cognitive advantages. These structures, which can be found in non-human animals too in different proportions, now supply the basis for a great deal of neuroscientific theory. Has psychoanalysis nothing to say about them?

These quibbles are based on a wish that the book had been longer. Coming away from it, my overall feeling was of gratitude for such an incisively-argued and powerful book.

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

13 Jan, 16 | by cquigley

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

30 Oct, 15 | by cquigley

 

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

2015 Manchester: Carcanet ISBN: 978 1 784100 56 8

 

Reviewed by Professor Alan Bleakley

Emeritus Professor of Medical Education and Medical Humanities

Plymouth Peninsula School of Medicine, Plymouth University UK

 

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

 

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

21 Oct, 15 | by cquigley

 

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

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

 

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

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

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

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

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

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

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

Esteban Rodríguez-Ocaña

Dpt. History of Science. University of Granada, Spain

erodrig@ugr.es

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

2 Sep, 15 | by cquigley

 

Instrumental by James Rhodes

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

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

 

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

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

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

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

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

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

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

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

 

References

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

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

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

12 Aug, 15 | by cquigley

 

ePatients

The Medical, Ethical and Legal Repercussions of Blogging and

Micro-Blogging Experiences of Illness and Disease

 

Institute for Collaborative Research in the Humanities

Queen’s University Belfast, 11-12 September 2015

The provisional programme for this conference is now available:

Friday 11th September

11.00 – 11.30         Registration

11.30 – 11.45          Welcome

11.45 – 12.45          Keynote 1:

                                      Anne-Marie Cunningham (Cardiff University)

                                    Learning with and from epatients

1.45 – 3.45               Panel 1:

                                      Chair: Nathan Emmerich (QUB)

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

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

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

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

4.00 – 5.40              Panel 2:

                                       Chair: Pascal McKeown (QUB)

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

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

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

5.45                            Drinks Reception, The Naughton Gallery

7.00                           Conference Dinner, Deanes at Queen’s

Saturday 12th September

 10.15 – 11.45          Panel 3:

                                      Chair: Paul Murphy (QUB)

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

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

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

12.00 – 1.00             Keynote 2:

                                     Julia Kennedy (Falmouth University)

                                     In Our Blood: Mapping Multiple Narrative Accounts of Leukaemia Online

 1.45 – 3.15               Panel 4:

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

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

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

 

The deadline for registration is August 14, 2015.

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

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