Category: disease memoir

Nabokov and epilepsy

Currently I am reading Colin Grant’s A Smell of Burning: The Story of Epilepsy for review. As it happens, I open the TLS webpage  this morning and come across this article on whether Vladimir Nabokov had a form of epilepsy. Galya Diment, the author of the piece, is certainly a careful reader of Nabokov:

I write about Nabokov and teach him every year, which means that I constantly re-read him (“One cannot read a book”, Nabokov famously advised his students; “one can only re-read it”). And certain passages in his autobiographical and fictional writings – amounting overall to a kind of obsession – started to come into sharper focus: he, too, must have suffered from some form of epilepsy.

 

I am always a little wary of attempts at retrospective diagnosis. This is especially so in psychiatry, where a trawl through a writer’s journals will almost certainly reveal introspective passages that can be spun as depressive, or ecstatic passages that can be spun as manic, etc. etc. It can also lend itself to a form of nothing-buttery; Philosopher X’s thought is best understood as HE HAD ASPERGER’S SYNDROME.Politician X’s acts are best understood as HE WAS A PSYCHOPATH. While there can be some interesting insights from this kind of thinking, retrospective diagnosis can only be part of a story, and to my mind a relatively small part. I have written about this at more length and in a more academic setting before. And this kind of things is not confined to psychiatry.

One of the fundamental issues in retrospective diagnosis is simply this; a doctor in practice wouldn’t make a diagnosis without seeing a patient, “taking the history”, doing some form of examination etc. So why suspend this principle for a case in which the patient is dead, possibly a very long time?

In fairness Galya Diment’s TLS piece of Nabokov is more nuanced than other examples of the genre, although this passage is fairly typical of mining the literary data for hints of a diagnosis:

Since there are no medical records available, the best sources of relevant clues are of course Boyd’s biography and Nabokov’s personal letters. Boyd lists the following known health problems that the writer apparently suffered from: “adenoma . . . concussion . . . heart palpitations . . . influenza/pneumonia . . . intercoastal neuralgia . . . lumbago . . . lung damage . . . nervous strain . . . pleurisy . . . psoriasis . . . shadow behind the heart . . . sunstroke . . . urinary tract infection . . .”.The “nervous strain” is particularly intriguing, since it is so vague. “Volodya has had a kind of nervous breakdown, due to overwork”, Edmund Wilson wrote in 1946 to their mutual friend, Roman Grynberg, the editor of Russian émigré journals. In 1952 Nabokov himself wrote to Grynberg, that his state of health was such that his nervous system only just then “had stopped resembling tangled barbed wire” (“перестала походить на спутанную колючую проволоку”), which is quite reminiscent of Kinbote’s characterization in Pale Fire of Shade’s clusters of epileptic seizures as “a derailment of the nerves at the same spot, on the same curve of the tracks, every day, for several weeks, until nature repaired the damage”.

“I was so joggy and jittery and buzzy with insomnia and so forth”, Nabokov complained to Wilson the following year, “that I decided to lay aside Pushkin for a few months.” “Pushkin” was his translation ofEugene Onegin, and he was already working on Lolita by then as well. There was definitely enough labour and anxiety there – as there had surely been in 1946, and in 1952 – to cause much general stress, but the way he describes it – “joggy and jittery and buzzy” – is also a perfect characterization of epileptic events.

 

The evidence Diment marshals  includes some family history (his cousin Nicolas Nabokov) and some features possibly (only possibly) linked epilepsy :

Nabokov shared his synaesthesia – “coloured hearing” and seeing letters in colours – with his mother; it occurs, we are told, in at least 4 per cent of temporal lobe epilepsies. He also apparently shared with her, as he reveals in the same chapter, “double sight . . . premonitions, and the feeling of the déjà vu”, all three definitely characteristic of epileptic seizures.

“Definitely characteristic” may be accurate, but “characteristic” does not mean diagnostic. At times Diment acknowledges the weaknesses in her argument:

Nabokov knowing or suspecting he had epilepsy may also explain why he never drove a car. Back in the 1940s when the Nabokovs bought their first American automobile, people diagnosed with any form of epilepsy, including the mildest, were routinely prevented from having a licence. I should note, however, that it is probably equally likely that – as most Nabokov memoirists and biographers suggest – he simply proved to be a talentless learner and, in general, preferred to be chauffeured by his wife, Véra, just as he and his family had been chauffeured in St Petersburg and Vyra, where they spent the summers.

Perhaps the most interesting – and in its way possibly more convincing than other pieces – element of her argument is that Nabokov would have concealed his seizures. A strong theme of what I have read so far of Grant’s book is stigma – not entirely historical – of epilepsy. As is clear from the above, I am something of a sceptic of retrospective literary diagnosis – but what Diment’s article illustrates very well is Nabokov’s extraordinarily specific ability to describe certain states of mind and experiences that hover between the mental and physical.

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.

“This book is dedicated to mental health nurses everywhere -the unsung heroes of psychiatry” – Dylan Evans, “The Utopia Experiment”

“The Utopia Experiment” is the story of Dylan Evans’ attempt to create an 18-month experiment in post apocalyptic living, in a remote part of Scotland. It was only after I finished reading it that I discovered I had heard of Dylan Evans before  (follow the link to find out why). “The Utopia Experiment” was the first time I had been genuinely impressed by an Amazon “You may also like…” recommendation – up to then this much-hyped feature (only Spotify’s “Discover Weekly” had heretofore impressed me) had always seemed to me quite banal, simply recommending books very like what you have already bought.

Anyhow, “The Utopia Experiment” is an interesting and absorbing read, with much to ponder on on the nature of progress and our hidden motivations . A relatively small part of the book deals with his time in a Scottish psychiatric hospital. Evans unravels over the course of the eponymous experiment, ultimately being admitted involuntarily (although, contra the impression gave by the blurb, he returns to the commune for a time after discharge)

Evans writes, early on:

A psychiatric hospital is a blunt instrument for treating mental illness. You take someone whose life has disintegrated and put them in a building with other lunatics. Once or twice a day you give them some medication, and once a week the doctor pays a visit. That’s more or less it.

This matter-of-fact, rather deadpan tone conveys much of the account of his admission. In his early days in the hospital, he found “my imagination conjuring up all sorts of fearful images of evil psychiatrists and brutal nurses”. The reality he describes is more mundane.

“This book is dedicated to mental health nurses everywhere -the unsung heroes of psychiatry” we read on the dedication page. Ironically enough, while there are three named doctors in his account of the hospital, but no nurse is named (even with what would presumably by a pseudonym) The consultant, Dr Satoshi, comes across as a sympathetic character who takes the trouble to read Evans’ online manifesto and steers him towards the work of Kazimierz Dabrowski on “positive disintegration.”

A typical sample of Evans’ account of hospital life follows the description of the hospital as a “blunt instrument” above:

 

It’s probably necessary to have some time for just resting, for not doing the crazy manic stuff that is likely to make things worse. But since mental illness often involves the loss of any daily routine, it is also important to rebuild some kind of structure. The nurses did their best to help me construct a rudimentary timetable, prodding me out of bed in the mornings, and taking me for occasional walks outside the hospital.

One time, a nurse spotted me pacing frantically around the courtyard, and came over the see if she could calm me down.

‘Don’t worry, Dylan. Things aren’t so bad. What’s the worst that can  happen?’

Perhaps the nurse thought I would conclude that the worst wasn’t all that bad after all, and cheer up. But this isn’t a good question to ask someone who has spent the past year worrying about the collapse of civilisation. It immediately prompted a cascade of rich visual images, culminating in a picture of me suffering a particularly horrible death.

For Evans, his focus on civilisational collapse was ultimately a manifestation of a previous depression, and he is strong on the misanthropic narcissism that underlies an awful lot of we-are-doomed rhetoric (from all parts of the political and cultural spectrum). There isn’t – or shouldn’t be – any necessary reason that an appreciation of the natural world (and a sense that our lives are often out of kilter with our true selves) should lead to apocalyptic fantasies of the destruction of (the rest of) humanity. Evans learns, in ways, to accept the mundanity of life and our (flawed) civilisation and (flawed) institutions. His description of life in the psychiatric hospital, a relatively small part of the overall narrative, is in ways a microcosm of his overall journey – from a media-mediated sense of apocalyptic dread to an appreciation of the “unsung heroes” of everyday life.

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.