Piece on cardiac surgery in Times Literary Supplement

In the current TLS I have a review of two books on cardiac surgery. One is Stephen Westaby’s  memoir of his career, the other is Thomas Morris’ historical perspective.


The full text is not freely available online, so here is the bit the TLS have made available to tease you all:

It is tempting to place Stephen Westaby’s Fragile Lives, a memoir of his career as a heart surgeon, in the category the journalist Rosamund Urwin recently called “scalpel lit”; following Atul Gawande’s Complications (2002) and Henry Marsh’s Do No Harm (2014) and Admissions (2017), here is another dispatch from a world arcane even for the majority of doctors. To some degree, Westaby’s book follows the Marsh template. In cardiac surgery as in neurosurgery, life and death are finely poised, and even minor technical mishaps by the surgeon, or brief delays in getting equipment to theatre, can have catastrophic consequences.

Like Marsh, Westaby, a consultant at the John Radcliffe hospital in Oxford, is jaundiced about the bureaucracy of health care and the mandatory “training” imposed on even the most experienced practitioners – “writing my personal development plan at the age of sixty-eight”. Now that death rates are published by the NHS,…

Makes you want to read the whole thing, does it not?

As it happens, Henry Marsh’s Admissions is reviewed in the same issue by George Berridge.

Helen Pearson, “The Life Project”, Review in TLS 29/03/17

I have a review of Helen Pearson’s “The Life Project” on the UK birth cohort studies in the current TLS. The full article is behind a paywall so here is the preview:

Born to fail

To a non-Briton, the oft-repeated assertion that the NHS is “the envy of the world” can grate. If imitation is the sincerest form of envy, the world’s laggardly adoption of free-at-point-of-use health care is perhaps the truest mark of how much emotional investment the rest of the world really has in the UK’s health system. Early in The Life Project, her book on the British birth cohort studies, Helen Pearson describes them as “the envy of scientists all over the world”. In this case, envy is easier to precisely pinpoint; birth cohort studies have become all the epidemiological and social scientific rage in recent decades, especially around the turn of the millennium. My own daughter, born in 2008, is a member of the Economic and Social Research Institute’s “Growing Up in Ireland” birth cohort.

1946 is the Year Zero of birth cohorts. The low interwar birth rate had caused much…



A Spoonful of Medicine, Owen Gallagher

Published in 2004 in The Irish Catholic, my only publication there – the literary editor, Peter Costello, is the father of a friend. This is a somewhat sturdy review of an entertainingly straightforward little memoir. Perhaps this piece presaged more recent writings on medical memoirs.


Owen Gallagher
A Spoonful of Medicine: Tales of an Irish Doctor
(Barny Books, Hough On the Hill, Grantham, Lincolshire, £5.99)
Reviewed by Seamus Sweeney

The public have a seemingly inexhaustible appetite for medicine, as can be seen in the TV schedules and the bookshops. There are two definite strains in medical drama. One is the hard-nosed likes of ER, or Samuel Shem’s House of God. These revel in the gory, the seamy, the adrenaline-fuelled, the sleep-deprived and the dramatic. The other sorts, as exemplified by The Royal, are exercises in gentle nostalgia and anecdote. A Spoonful of Medicine, Dr Owen Gallagher’s memoir of his time as a junior doctor, tends more towards the latter school, although it avoids sentimentality and cheap nostalgia.

This book is a collection of stories from Dr Gallagher’s years as a recent medical graduate in the late 60s and early 70s, particularly in accident and emergency, in paediatrics and in psychiatry.
Some anecdotes bear the hallmarks of much polishing over the years, and certainly some of the dialogue is rather unbelievable, with the characters coming out with perfectly grammatical paragraphs and overly pat witty repartee. There are several lapses on the part of the sub-editors, which lead to distracting typos and occasional confusion as to what precisely is happening on occasion.

However, these seem rather churlish caveats about what is a warm-hearted, entertaining book. The stories, while comic and sharply observed, are never cruel and Gallagher’s compassion comes through without ever becoming sanctimonious. Particularly in the final series of stories from his time in psychiatry, we sense his admiration and respect for certain of his patients’ bravery and approach to life.

It was a far different Ireland then, and it was also a far different medical practice. Certainly its impossible to conceive a character like Dr Moore, protagonist of one of the most memorable sections, being produced by today’s medical schools. Dr Moore was a GP whose practice revolved around the schedules of the racetrack rather than any notion of patient convenience. Moore had honed his system until the least possible amount of time was spent with the patients, with anything at all worrying referred to accident and emergency post haste. Dr Gallagher, working in the nearby A&E, bore the brunt of this extra work.

One patient recalled Moore completely ignoring his complaints, preferring to listen to the radio broadcast of a horse race, and then telling him to get himself down to the pub for a couple of pints and a few cigarettes, as “your complaint is mainly in your head, anyway.” Moore never asked a patient to undress, and would listen with his stethoscope over even the heaviest clothing. It may come as no surprise that his patients were all very fond of Dr Moore, who never kept case notes as he knew all the patients from living in the same community as them. Dr. Gallagher too came to appreciate his more endearing qualities.

It certainly is a long way from that to the obsession with targets and mission statements that marks modern health services. This book is not a sociological tract and it would be unfair to expect a deep analysis of the relative pros and cons of the health system, or indeed society as a whole, then and now. There is however a sense of loss at the passing of a certain pace of life and a certain approach to social interaction. Modern practice seems much more rushed and impersonal.

The book could also have been subtitled “what they don’t teach you in medical school.” If the book has a “moral”, it is that much of the education in human nature that makes a good doctor takes place far from the lecture hall or library. It is an enjoyable account of how one doctor acquired that education.

A Natural History of Families. Scott Forbes. TLS January 2006

I would agree with Scott Forbes that any attempt to explain social behaviour without any reference to a Darwinian framework is futile. However using nothing but a Darwinian framework is also unsatisfactory, and as the closing paragraphs of this review make clear, evolutionary psychology’s tendency to just-so stories is something I have always found suspect (I recall reading a very unconvincing paper on experimental methods in some area of evolutionary psychology which I must dig up) . The Huxley quote “in every hedge & every copse battle murder & sudden death are the order of the day” seems germane to some of my recent maunderings on nature writing.

“We are not mice” – slightly too cute as a summing up line. We are biological entities, with our location in the animal kingdom in a phylogeny of our own making and probably masking the continuum nature of species. We are animals, but are we “just” animals?

Again, thanks to Maren Meinhardt for providing me with the published text.


A NATURAL HISTORY OF FAMILIES. Scott Forbes. 228pp. Princeton University Press.

Pounds 17.95 (US $27.95). – 0 691 09482 9.

You see a meadow rich in flower & foliage and your memory rests upon it as an image of peaceful beauty. It is a delusion . . . . not a moment passes in that holocaust, in every hedge & every copse battle murder & sudden death are the order of the day.

Thus T. H. Huxley punctured a fond illusion that many hold about “nature”.
A Natural History of Families, Scott Forbes’s account of what behavioural ecologists have learned about family dynamics, is concerned with linking this knowledge to an understanding of human family life. Forbes attacks the perceived arrogance of sociologists dismissive of sociobiological insights:

“The perspective that we can explain human behaviour without a Darwinian foundation -still the distorted view of many in the social sciences -is hubris”, he writes, though he acknowledges that “linking animal to human behaviour is no simple task . . . (and) has not yet helped me in resolving the seemingly endless disputes with my sons”.

In the animal kingdom, parents tend to create more offspring than they can raise to maturity -“parental optimism”. In cases of obligatory brood reduction, at least one offspring invariably dies. For instance, Harpy eagles lay two eggs, and once one has hatched, bury the other. Among Pelicans and Boobies, the first chick to hatch wages a war to the death against the second-born (and therefore smaller) chick. These species practise a form of insurance, reminiscent of the traditional hope for “an heir and a spare”, except with added infanticide. Primogeniture is the human behaviour most obviously similar to the concepts of “core” and “marginal” broods that Forbes discusses. The core brood is the one that survives, while the survival of the marginal is at best a bonus. If something happens to the core, one of the marginal offspring can be promoted and then have a much greater chance of survival.

Infanticide and siblicide may seem, at first, wilful behaviours from an evolutionary point of view. Darwin himself wrote, in The Descent of Man, that “the instincts of the lower animals are never so perverted as to lead them regularly to destroy their own offspring”. Here Darwin nodded, according to Forbes, and both sentimentality and a failure to recognize the true nature of genetic conflict still blind us. Genetic conflict does not occur only between organisms but within organisms. Many phenomena of human pregnancy -for instance, morning sickness, pre-eclampsia and gestational diabetes -Forbes describes in terms of genetic conflict between mother and fetus, or even between the fetus’s own paternal and maternal genetic inheritances.

An astonishing number of human pregnancies are spontaneously terminated, usually before the mother is aware that she may be pregnant. The figure rises from 50 per cent at age twenty-five to 96 per cent at forty. Forbes describes evolutionary reasons for these phenomena, with mothers “screening” their offspring before continuing with pregnancy. Furthermore, many more multiple conceptions occur than multiple births. Forbes suggests that the “vanishing twin” phenomenon is analogous to the brood-reduction phenomena seen more clearly in other animals.

Forbes’s writing is lively and generally clear, though at times rather irritatingly jocular (one tires of references to “mom and dad”). He explains evolutionary theory lucidly and well, though not perhaps clearly enough for an absolute beginner. Some may find that, while his opening chapter uses many examples from the animal kingdom, his later ones lean rather heavily on a more abstract discussion of genetic and evolutionary theory. However, Forbes is good at explaining the subtlety and frequent counter-intuitiveness of current thinking on these topics.

While Darwin is surely essential to an understanding of the complexities of family life, there is more to human family behaviour than primogeniture and infanticide. As with many who seek to apply Darwinian frames to human behaviour, Forbes makes the no doubt true observation that revulsion at the infanticidal practices of the Spartans, and the general sentimentality of the “family myth”, are a consequence of insulation from the rougher aspects of existence. But what does this self-insulation -which seems to be unique to our species -tell us?

Male mice routinely kill off offspring that are not their own. Female mice spontaneously abort unborn pups on smelling a strange male during pregnancy. As is well known, infanticide and abuse of all kinds are more commonly perpetrated by step-parents than genetic parents. But “more commonly” does not mean “commonly”.

We are not mice. Scott Forbes, thankfully, is well aware of this fact.

One In Three: A son’s journey into the history and science of cancer. Adam Wishart. TLS Sept 2006


Another ten years on (nearly) piece. I was very impressed with this book at the time. Tje tone and tenor of David Adam’s “The Man Who Couldn’t Stop”  , which I also reviewed for the TLS  and will post here at some point, reminded me of this a lot.

Re-reading the review I am struck by Adam Wishart‘s criticism of medical “detachment” (or what I report here as such) and perhaps will re-read the book itself to explore this more. Also struck (again) by the failure of the War On Cancer and the denigration of basic research which it involved, again as described by Wishart. I would like to read more about this and perhaps read other sources – certainly if Wishart’s account is at all accurate (which I have no reason to doubt) it  teaches us something important about grandiose research agendas. Again thanks to Maren Meinhardt at the TLS for providing me with the published text!


For my father
Seamus Sweeney
Published: 22 September 2006
ONE IN THREE. A son’s journey into the history and science of cancer. By Adam Wishart. 312pp. Profile. Pounds 15. – 1 86197 752 2.

When Adam Wishart’s father was diagnosed with the cancer that would kill him, he found that no book on the disease was available that father and son could “read and then discuss”. Initially this seems scarcely credible -there are a huge number of books about cancer but in Wishart’s words:

there were memoirs of celebrities who had “battled” through the disease . . . self-help guides that presented basic information but provided no wider context . . . books that described the science in detail, but they didn’t seem to connect to the experience of being a patient . . . academic histories that did not seem to bring the past alive.

The Wisharts were looking for something different. One in Three begins with the six-year-old Wishart clinging “to my Dad’s enormous hand”. They are striding through London on their way to Broad Street to look at its famous pump. John Snow, in the well-known anecdote, removed its handle, so ending the cholera epidemic of 1854. This is Wishart’s first memory of his father’s quest to educate him, a quest that directly leads to this book.

Recognizing that the Broad Street story is “a rather mythologized and child-friendly version of history”, he describes other stories of scientists and scientific progress with which his father regaled him. “For two men who never spoke about their feelings, our intimacy consisted in sharing our interests in politics, history or the progress of science.” Intellectual discovery seems to have been the substitute for emotional revelation between father and son, and One in Three is part of that process.

It is an account of medical progress and the rejection of “the false ideas of the Ancients”. Wishart’s aim is didactic: “we will all be touched (by cancer), in some way. And I have learnt that an amalgam of fear, archaic prejudices and ignorance is no way to deal with it”. Among the “archaic prejudices”, he particularly despises the Galenic idea of “humours” contributing to the disease, which is echoed in the still prevalent idea that certain temperaments are more prone to it than others; according to the doctor in Auden’s “Miss Gee”: “Childless women get it. And men when they retire; / It’s as if there had to be some outlet / For their foiled creative fire”. Nor has Wishart time for Galen’s prescription of a formal and authoritative bedside manner for doctors -“a mode of behaviour which continues to be enacted in many consulting rooms”.

From this Galenic precept, he traces the now much less prevalent but still extant medical “detachment” that can seem like callousness to a terrified, vulnerable patient.

Each chapter deals with a theme -for instance, surgery, or chemotherapy, or the rise of alternative cancer care, as well as stages of Wishart’s father’s illness, considered either directly, or through the mood of the family. So the chapter on surgery discusses Lister and Billroth along with Wishart Senior’s own experience of surgery, while that on alternative therapy discusses Penny Brohn’s disillusionment with her treatment and the foundation of the Bristol Cancer Care in the 1970s, together with the Wisharts’ occasional anger and doubts.

Wishart has an eye for what Yeats called “character isolated by a deed”, the incident that exemplifies a certain trend or moment in cancer care, or helps us to understand the personality of the cancer researchers. Many of the names in cancer treatment -Sidney Farber, Robert Weinberg, even Marie Curie -are familiar simply as names. Wishart brings these complex, driven figures to life, and it is a life that barely relates to the image of dedicated scientists piously labouring for the good of humanity. For instance, Farber’s development of a chemotherapeutic agent for acute lymphoblastic leukaemia is a story of dogged determination against discouraging clinical results -which in this context means dead children -and the opposition of junior doctors alarmed by his apparently cruel experiments and aloof, Galenic manner.

Among the most memorable characters are two formidable women -Mary Lasker and Penny Brohn, both of whom confronted the cancer establishment with apparent enormous success. Indomitable, passionate, endlessly energetic, Lasker expertly played the social and political worlds of New York and Washington to persuade President Nixon to launch his “War on Cancer”. She was contemptuous of the medical establishment’s insistence that funding should be confined to basic research rather than spent on the “moon shot” approach for a total cure (involving a massive federally funded project with a single big-picture aim, along the lines of the Apollo programme). Brohn, meanwhile, after a particularly bloody biopsy, appalled by the offhand manner of her treating doctors, became convinced that her tumour was the result of “an accumulation of un-discharged grief, pent-up guilt and layer upon layer of fear”, and this conviction prompted her to found the pioneering Bristol centre. Here care was homely and comforting. Even if an insistence on coffee enemas was unpopular, the antithetical approach to Galenic medical authoritarianism was not.

Both of these indefatigable women had equivocal legacies -towards the end of her life, Lasker admitted that basic research behind genetic manipulation, on which she would earlier have poured scorn, was far more promising than the grandiloquent “moon shot” approach. The alternative therapy movement was in one sense a reaction to the hubris of the “War on Cancer”, but often became far more dogmatic and promised far more than mainstream treatment. The medical profession learnt much from its 1970s critics, and duly became more empathetic. The Bristol centre is still operational, but is now complementary with medical oncology.

Wishart combines the story of his father’s illness and death, and medical history, with skill and dignity. Anger and disillusionment are acknowledged, but there are no intemperate judgements of past figures or of contemporary authorities. Indeed, the oly figure who emerges badly is Galen. In his final chapter, Wishart imaginatively reconstructs the possible series of events at a genetic and cellular level that led to his father’s tumour. This speculative passage, reminiscent of the chapter on carbon in Primo Levi’s The Periodic Table, leads to an epilogue focused on future tactics. As well as possible improvements in public health strategies, Wishart calls for “a thoroughgoing change in taboo-shrouded attitudes, a rejection of opinion rooted in the past, in Galen’s physiological melancholy or in Victorian fear of the incurable. And there has to be a reorientation away from the heady optimism that cancer can be cured, and its flipside that a failure to discover the ‘magic bullet’ is a tragedy for humanity”. As well as admirably filling the gap that the Wisharts identified for an intelligent and humane account of cancer, this wise, dignified book will contribute to a rejection of unsatisfactory theories and practices and the adoption of something better.

Review of “Makers of Modern Medicine”, William Dormandy. Endeavour, June 2005

Original here

I wrote a few reviews for this journal of history of science – I think I lost confidence after having to confess a mistake in a review I wrote in the errata. I consulted Dormandy’s book more recently about something and founds it eccentricities a little off putting rather than charming.

Full-size image (13 K)

In recent years, historians in general and historians of science in particular have tended to shy away from approaching their subjects as ‘Great Men’ of history and providing a narrative account of their achievements. The story of science is no longer told as a series of eureka moments, with lone geniuses toiling away in the isolated pursuit of truth. Sociology, feminism and critiques of capitalism and imperialism – all have informed the new approach to scientific history.

Yet there seems to be an inexhaustible public demand for those Great Man (and, occasionally, Great Woman) stories. Books with titles like ‘The Man Who Changed Everything: The Life of James Clerk Maxwell’ and ‘The Man Who Invented the Twentieth Century: Nikola Tesla’ populate the shelves. The hunger that generates the demand for such books might reflect some deep-seated psychological need to believe in brilliant magi transforming the world. Perhaps it reflects a deeper truth: individual human beings do make breakthroughs and change practices, and although the more febrile romanticism of the Great Man school is evidently ridiculous, portraying science as the product of the interplay of impersonal social forces is equally misleading.

The subtitle of William Dormandy’s Moments of Truth: Four Creators of Modern Medicinesuggests that it is firmly of the Great-Man school. However, this is not the case. Dormandy firmly puts the lives of his subjects in their social and historical context, and explicitly states that it is necessary to do so in order to truly understand their achievements. His pithy, jaundiced tone is not one of blind obeisance to the ideas of progress and scientific omniscience, or to Great Men – self-proclaimed or elevated by others – in any sphere. However, Dormandy remains free from any ideological hang-ups and respects the individuality and humanity of his subjects.

The 19th century marked the birth of recognisably modern medicine. Dormandy has written about four medics whose lives spanned that century and, as they comprise a physician, an obstetrician, a surgeon and a pathologist, represent four major branches of medicine. He accepts a certain arbitrariness to his selection, but by covering the century and the fields that are the specialties of his subjects he hopes to achieve some kind of representative sample.

René Laennac was born in Brittany eight years before the fall of the Bastille in 1789 and would die of tuberculosis in 1825, four years after Napoleon. As well as engaging in epic battles with the blood-letters of the day, Laennac belonged to a new school of medical thinking that emphasized physical examination and the careful tabulation of results. He invented what would become the modern Caduceus: the stethoscope, thus earning his place in Dormandy’s quartet.

Ignác Semmelweis’ story is perhaps the best known of the four ‘creators’ among contemporary medical students. The Vienna hospital this Hungarian obstetrician worked in was divided into a section for wealthier women staffed by doctors, and a section for poor women staffed by midwives. There was a much higher rate of fatal puerperal fever among the wealthier women, and Semmelweis eventually proved that this was due to infection from necrotic material brought in to the ward by doctors from dissections they had conducted in the mortuary. This idea met with much resistance, owing to the medical politics of the era as well as Semmelweis’ abrasive nature.

Joseph Lister developed the principles of antisepsis; the careful avoidance of any possible source of infection during surgery that explains the ritual ‘scrubbing in’ of surgeons today. Walter Reed completes the quartet, and was a pathologist with the US Army Medical Corps. He established that yellow fever was spread by mosquitoes while he was working in Cuba, and this discovery helped to establish principles of modern infection control and prevention.

All four of these men were serious minded, and felt that they were in the vanguard of a new kind of medicine blowing away the superstition and stuffiness of the past. Dying young seems to be as beneficial for a posthumous reputation in medicine as in rock’n’roll or the movies. Of the four, only Lister had a long life, and Dormandy describes his evolution into ‘a slightly petulant enemy of many “new fangled” notions’.

As that little sample indicates, Moments of Truth is a pleasure to read. The writing is fresh and stimulating, judicious but unafraid of bracing judgement. The footnotes are as entertaining, if not more so, than the text itself. Indeed, I found myself with one hand wedged firmly in the back of the book to make sure I didn’t miss a trick. Another attractive feature of the book is a certain warmth and sympathy that is infused into the writing. Some medical histories read like the abstract manipulation of official memoranda and minutes, with the intention of proving some ideological or theoretical point or other – Dormandy’s stories are of living, breathing patients and doctors.

Review of “The Broken Boy”, Patrick Cockburn, Guardian, 9th July 2005

My other Guardian piece,  from over a decade ago. I would end up knowing Cork a lot better in subsequent years.

It is generally OK, although I find myself cringing at some awkward phrases – like “resign on marriage” or “ engaging and witty book itself has a vigorous personality.” Perhaps I am oversensitive.

Too many of my reviews feature terms like “engaging” without real justification. I am not specifically talking about Cockburn, but a tic I have in general. Part of it is an ingrained respect for the Book, so that an enthusiasm comes too early. I really should justify whjat is engaging about a specific work.

The Broken Boy
by Patrick Cockburn
320pp, Cape, £15.99

Writing about the house in which he grew up in Youghal, east Cork, Patrick Cockburn says it “owed its vigorous personality to our lack of money, which ensured that it never saw the hand of a contractor and was reconstructed piecemeal by my mother”. Cockburn’s engaging and witty book itself has a vigorous personality. It is far from the straightforward memoir of his experience of the 1956 polio epidemic in Cork suggested by the title and cover.

While being taken to see child casualties after the American bombing of Baghdad in 1998, Cockburn – a foreign correspondent – began to wonder about his own childhood experience of polio, and the epidemic about which he knew so little. Hardly any written accounts existed. In 1999, he began to interview those who remembered the outbreak, but the Chechen war and the world situation after September 11 combined to prevent him from continuing his research for some years.

This perhaps contributes to the somewhat disjointed feel of the book. Six of its 14 chapters deal with the 1956 epidemic. It begins with a six-year-old Cockburn waking with a headache and sore throat. The local doctor is called and the sensation of the stethoscope on his skin is one of the few clear memories Cockburn retains from the time. Three months earlier, in July, the epidemic had arrived in Cork city.
Cockburn was taken by ambulance to St Finbarr’s hospital in Cork city. Although terrified and uncomprehending, his memories of St Finbarr’s are sunnier than those of Gurranebraher, where children were transferred after the acute phase of the illness. Cockburn’s father, the radical journalist Claud Cockburn, wrote that children in Gurranebraher “seemed to be largely in the hands of maids – young country girls with no special training at all”. One reason for this was that female nurses, like any woman working in the public service at the time, had to resign on marriage – a glimpse of a very different Ireland from today’s.

Although Cockburn quotes doctors and physiotherapists critical of the handling of the outbreak, he himself seems curiously detached. The Salk vaccine had been field tested the year before, but was still unavailable and not entirely trusted by doctors. Quarantine was pointless, given that the majority of carriers of polio are asymptomatic. Some agitated for sporting events to be cancelled and for a form of temporary apartheid to be implemented against Corkonians – but though some politicians indulged in similar rhetoric, such sanctions were avoided.

Paradoxically, the victims of the Cork epidemic largely came from the more prosperous areas. This was because, in places where hygiene was poor, exposure to the virus was near-universal, and infants would be protected by maternal antibodies, so tended to have mild or asymptomatic forms of the illness. Improved water supply and sewage systems led to the loss of this immunity. Indeed, Cockburn argues, the outbreak could be seen as an early marker of Ireland’s later prosperity.

Cockburn writes well about his Anglo-Irish childhood, the tangled lives of his mother’s forebears and what Olivia Manning called “the usual Anglo-Irish sense of belonging nowhere”. His father Claud, described by Senator Joseph McCarthy as “the 84th most dangerous red in the world”, is a benign, rather impish spirit hovering over the book. As well as the affectionate personal memories of his father, Cockburn describes the absurdly detailed file kept on his father by British intelligence. For 20 years, with dutiful pedantry, agents followed him around recording who he met, where he went and what he did there.

The title The Broken Boy is slightly mystifying, as Cockburn doesn’t seem to have thought much about his polio experience until 1998. He does refer to “emotional scar tissue from polio” that he was aware of from an early age, but the nature of this emotional scarring isn’t at all clear. Though he spent a lot of time in school reading by himself, he writes “I was not solitary and made friends easily.” In fact, this is an oddly uplifting book. It is refreshing to read a disease memoir that is far more focused on the lives of those around the author than on trying to whip up sympathy or outrage.

Review of Don’t Fence Me In by Tony Gould, Guardian 5th February 2005

It is over ten years since this appeared in the Guardian Review – original link here

Re-reading this, my interest is whetted in Paul Brand‘s book which has a truly great and meaningful title -“Pain: The Gift That Nobody Wants.” 2005 is now long gone and the WHO’s target of elimination has not been met. 

Overall, this strikes me as a fairly well crafted, rather honest-to-goodness sturdy, book review.

Don’t Fence Me In: Leprosy In Modern Times
by Tony Gould
432pp, Bloomsbury, £20

Leprosy is an ancient disease, familiar from the Bible as well as Shakespeare, but the focus of Tony Gould’s excellent book is the past 200 years, during which scientific knowledge and medical treatment have developed spectacularly, but fearful social attitudes have persisted. Only in 2001 did Japan repeal its laws requiring compulsory detention of leprosy patients.

Gould’s sympathies, very properly, lie mainly with those affected by the disease, but he writes understandingly of the problems faced by doctors, nurses and administrators. While being alert to imperialist and colonialist attitudes – some missionaries have appeared more than half in love with suffering – he does not use these simply to damn the practices of the past. That a particular doctor or missionary had faults and attitudes unpopular today does not obviate the good of his or her work entirely.

Some leprosy advocates have argued that the Bible is the source of much anti-leprosy prejudice; Gould shows, however, that the horror of leprosy is as strong if not stronger in non Judaeo-Christian cultures. Moreover, as one missionary doctor pointed out: “When no one else cared or bothered, Christians did, and their example still inspires those of other faiths and of no faith.” Even the 20th-century pioneers of leprosy treatment and research – such as Paul Brand, born into a missionary family in India, and Stanley Browne, known as “the boy preacher” in his Bermondsey youth – came from the medical missionary tradition.
The title of Brand’s book, Pain: The Gift Nobody Wants, indicates his great realisation: the importance, indeed the blessing, of pain. In leprosy, the loss of digits and limbs results from impaired pain sensation rather than the disease itself. Most people will, for example, adjust painful shoes and thus prevent blisters and the risk of infection; those with impaired pain sensation, such as leprosy patients, don’t. This understanding, with the use of sulphone drugs from the 1940s, revolutionised the treatment and management of the disease.

The most famous figure in the history of leprosy is Father Damien of Molokai. The death of “this stubborn, self-sacrificing peasant-priest” in 1889 caught the imagination of the public worldwide. Robert Louis Stevenson defended the memory of Damien against rival clerics, and leprosy had a modern martyr and figurehead for fundraising.

Leprosy has been associated with a succession of colourful characters, from Kate Marsden, the English nurse whose mission to Siberia took her across thousands of miles “by sledge and horseback”, to Stanley Stein, the Jewish pharmacist from Texas who became the “Carville Crusader” (Carville in Louisiana was the only leprosarium in the continental United States); Gould describes them with evident admiration, while recognising that they could be maddening and stubborn as well.

Stein edited the extraordinary leprosy patients’ publication the Star, and was the scourge of the US Public Health Service. He loathed the words “leper” and “leprosy”, preferring the term Hansen’s disease. Ironically the Norwegian Hansen, who discovered the Mycobacterium leprae bacillus, was a firm advocate of the isolation measures Stein campaigned against. Gould abjures “leper” (“it’s now impossible to use it … without giving offence”), but finds himself unable to abandon the term “leprosy” itself.

Writing in a lively, engaging style capable of encompassing the intricacies of medical politics, he gives a real sense of what it meant to be a patient with leprosy well into the 20th century – the feeling of being an outcast, something otherworldly and not quite human. The patients at Carville were indefatigable in battling this, adopting the Cole Porter song “Don’t Fence Me In” as their anthem – hence the book’s title.

Much remains unknown about leprosy. One of the saddest ironies of the disease is that it is not nearly as communicable as commonly believed. It is not spread by touch, as it lacks enzymes to penetrate intact skin. Even now, the exact mode of transmission is unknown and some recent researchers have gone so far as to suggest that Mycobacterium leprae is not the causative agent but an opportunistic pathogen. My medical education taught me that the nine-banded armadillo was the only other species that could be infected with leprosy. However the New World sooty mangabey monkey shares the honour.

Leprosy, Gould concludes, has not gone away. In the United States 300 to 500 cases occur annually. And around the world – in Nepal, in India, in Indonesia and sub-Saharan Africa – the incidence of the disease remains constant. The WHO has assigned 2005 as the year of the final elimination of leprosy, although “elimination” here means fewer than 1 case per 10,000 population in all endemic countries. There is an element of statistical chicanery to this, as other measures would give a more accurate picture of the extent of the illness. Furthermore, the WHO recognises lack of bacterial infectivity as cure, rather than the lack of longer-term effects. Gould writes that many leprosy workers are highly suspicious of the “elimination” enterprise, worrying that the WHO’s grandiloquent goal is more about meeting targets than the welfare of those who have this misunderstood condition.