Essay on The State of Me in Etudes Ecossaises, a bilingual academic journal

Was very interested to be alerted to this reading of my 2008 novel  in Etudes Ecossaises: Temporalities in Nasim Marie Jafry's The State of Me by Laura MacDonald. It is gratifying to see such a close reading of one's work, especially so many years after publication.

Learning to swim in Lahore; Muriel Spark and Kjersti Skomsvold

I recently reviewed Isambard Wilkinson's Travels in a Dervish Cloak, this passage stays in my mind:

Pakistani novelists of  a certain vintage remember a golden era in Pakistan's first decades when Anglo-Indians danced at Karachi's Metropole, hippies spun vinyl at discotheques, Pakistan was advertised as an exotic holiday location and Dizzy Gillespie beguiled a Sindhi snake charmer's serpent with his trumpet. That innocent age, if it ever existed, was dead.

It makes me nostalgic for a Karachi I barely know. We visited in 1974, two years after my father had died. I find myself scraping those memories up, trying to build a narrative (I have a letter that a visiting British doctor staying at Hotel Metropole left for my father who was then working at Jinnah Hospital in mid-1950s). I recall that we stayed in Lahore for a few days in the Intercontinental and that was where I learned to swim without arm bands. A far cry from the swimming lessons at primary school back home, where you would shiver as you were checked in line for verrucas. There was also an earthquake when we were in Lahore and all the dishes shook on the hotel breakfast table.

*

Many of us have been giving  Muriel Spark for Christmas because of the centenary of her birth. I've just re-read The Driver's Seat. I read it when I was about sixteen and didn't understand it, I am not sure I understand it any better but I much more appreciate the elegance and construction of this slim,  disturbing novel. And the humour is marvellous.

I just got a copy of Norwegian writer Kjersti Skomvold's MonsterHuman, which is now available in English. I blogged about her a few years ago and read her debut novel, which she started writing on post-it notes when she was very ill with ME. I'm obviously very interested in autobiographical, fictionalised accounts of ME and look forward to MonsterHuman. I see on Wikipedia that Skomvold also studied French at L'Université de Caen, which is a great coincidence as I was studying there in 1982/3 when I first became ill with Coxsackie virus, which later evolved monstrously into ME. We got ill at a similar age though I am a good decade older.

I love the start of new year, a whole new pile of to be read books on the bedside table:

Stairs and Whispers is an anthology by deaf and disabled poets that I have just started dipping into. It looks brilliant.

Two papers and two films

I very much enjoyed this paper by Rose Richards: Writing the Othered Self: Autoethnography and the Problem of Objectification in Writing About Illness and Disability - she writes from the point of view of someone who has had a kidney transplant and notes that there are not many narratives around her particular illness. I found lots  resonated, although the paper refers to non-fiction/academic writing.

Also, a recent USA report via ME Research UK  is well worth a look, I have not read the whole report, it's very long, but the key arguments about ME are there. I've quoted a short paragraph via a tweet.

And I recommend two films I saw on DVD this month - both, by chance, about actors rehearsing for a play, and the lines they rehearse echoing real life. Cycling with Molière (in French with Fabrice Luchini whom I adore) is lighthearted and funny, though slight. Still, I probably enjoyed it more than the somewhat pretentious though clever Clouds of Sils Maria (with Juliette Binoche, but in English). We studied  Molière's  L'Avare  at university all those years ago and I recall the mirth like yesterday.

A Series of Unexpected Events - The Well Made Project

As part of London  Creativity and Wellbeing week 4-12 June, The Well Made Project is hosting an online exhibition called A Series of Unexpected Events. 

'Over the course of a week, this online exhibition on art and health will publish an artwork by a different artist each day. These distinct pieces, each conveying the impact of a life event, will gradually build up a wider narrative around wellbeing.'

The artists are here.

Extracts of my novel will be used at some point, I don't know how/when/where, which makes it even more interesting!

Even if you are not on Tumblr you can subscribe to the event here.

Enjoy.

Do No Harm by Henry Marsh; & another doctor turned writer (Suzanne O'Sullivan, who believes ME is psychosomatic) *updated

I'd read a couple of chapters of Do No Harm before I realised that Henry Marsh is the subject of Geoffrey Smith's 2007 award-winning documentary The English Surgeon, which I saw four or five years ago. The film first came to my attention because at that time a production company was planning to use my novel as the scaffolding of a documentary about ME and Geoffrey Smith was the director (it fell through, as these things do, and the film seems now to have halted). I warmed very much to Henry Marsh in the documentary and I love him again in Do No Harm: his humility and self-deprecation shine through his brilliance as a surgeon, he is honest about his faults - he can be short-tempered and vain. He mocks himself for getting annoyed at having to queue at a supermarket check-out when he is an important neurosurgeon. His gorgeous, pared down prose reflects a surgical precision, he says what has to be said, no more, no less. The details of the neurosurgery he practices can be hard to read, I grimaced more than once, and while the technicalities are fascinating,  it is Marsh's humanity and wry humour that makes the book so readable. A doctor who admits wholeheartedly to the luck that is involved in a complicated operation succeeding or failing, a doctor who admits to his own mistakes and can't bear to think of the patients who have suffered at his hands. My favourite line is when he describes how important it is for doctors themselves to experience the anguish of being an angry or anxious relative (or patient) - his baby son had a, thankfully, treatable brain tumour: Doctors, I tell my trainees with a laugh, can't suffer enough.

I often think that doctors who have experienced illness themselves  make better doctors.

*

Not all doctors can write although the publishing world seems awestruck when they do. A new book came to my attention at the weekend by Suzanne O'Sullivan, she has been at Hay promoting It's All in your Head: 'True stories of Imaginary Illness', and the papers have had interviews and extracts. The Sunday Times reported that she controversially thinks ME is psychosomatic. So there you go, a doctor I've never heard of, her opinion slips in like a wee sharp knife - I'm hardly going to warm to her. Still, I can admire good writing even if I dislike the writer's opinions, but the extract in the Guardian is plodding and dull, this happened and then that happened, clichés sprinkled here and there, my interest flagged. And the subject seems derivative, a mix of Oliver Sacks (whose writing I loved) and Elaine Showalter (the horror, the horror!).

Just imagine for a moment you had ME and you were referred to this neurologist, what would she say to you, that it is all in your mind? My consultant neurologist ordered a muscle biopsy and EMG in order to confirm suspected abnormalities, but this of course was pre-'CFS' days (nowadays, you can apparently google 'chronic fatigue', pop down to your local fatigue clinic to get a diagnosis of ME, then get better in a few hours after the Lightning Process, this is one journalist's experience - and he actually confirms O'Sullivan's suggestion that some patients are ill because they google symptoms, he refers to himself as a prolific 'cyberchondriac'. This, of course, is not the experience of patients who have actual ME).

These doctors, such as O'Sullivan, who continue to deny that ME is a physical illness are making a choice not to listen, to ignore the research and abundance of literature, it is very worrying. Their position is  untenable, but still they hang on.  Who benefits? - not patients with ME, that's for sure. The ME Association has just published a report on the harms of CBT and GET as primary treatments for ME, I wonder if it will make a blind bit of difference.

First, do no harm...

Precisely.
_________________________________________________________________________
*Update 

Suzanne O'Sullivan's book does indeed include a chapter on 'ME/CFS' - 'Rachel'.  It is,  unsurprisingly, manipulative and incoherent. In Suzanne's world, you google ME and decide it matches your symptoms and that is what you have got.  (She also patronisingly said on Radio 4: 'I don't think the internet has been so much of a problem for doctors as such, I think it is a problem for patients and people.')

And this may, in fact, be the most revealing passage in the chapter:

'In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.'

There is something very interesting in the fact that Suzanne does not seem to have actually met (m)any patients with classic Ramsay-ME (in 1990s when she was training the Wessely/CFS school was just taking root). Rachel, the girl in her book with ME/CFS is, to my mind, an artificial construct, a composite character with the 'behaviours' of ME patients - internet diagnosis, increasingly helpless, 'over-helpful' parents - that the Wessely school adores. Rachel rejects the psychiatric treatment offered her. We never find out what happens to her, though Suzanne says: 'The impact of our emotional well-being on our health is not a trifling problem. I only wish I could convince Rachel of this'.

Her apparent lack of contact with patients who actually have ME - coupled with not following the science - would perhaps explain why she felt that including ME in a book of imaginary illnesses was acceptable. But hallelujah! Suzanne is still at pains to tell us that she does believe we are ill, honestly, she believes us, but we just have to be good and understand that it is all in our heads.

I have reviewed the chapter on Goodreads (and Amazon).

The ME Association has complained to the Times about David Aaronovitch's review of the book - and his re-assertions - yawn yawn - that ME is probably psychosomatic. Invest in ME has also complained to The Times. How many hundreds of hours have we had to waste challenging these oafs?

How many hours?

'Mongol' by Uuganaa Ramsay

I finished Uuganaa Ramsay's memoir 'Mongol' the night before last night. Uuganaa, who is Mongolian, and grew up in a  'ger' (yurt), is now in her mid-thirties, and lives in Scotland with her husband and their three children. Four years ago, she had a baby boy, Billy. Billy had Down's Syndrome and, tragically, because of heart complications, died at just three months old. In writing his story, and her own story, Uuganaa has turned her precious boy's short life - and her grief - into something beautiful.

She has become passionate about educating others about Down's. She's certainly in a unique position to comment on the misuse of the word 'mongol', historically used to describe people with Down's Syndrome. I learned that it was actually British doctor John Langdon Down  -  who had coined the term 'mongol' in 1860. Of course, conflating a disability with an ethnicity is both offensive and unhelpful.  The word mongolism was officially dropped by WHO in 1965.  I don't recall the word mongol ever being associated with my wee aunt, certainly not within our family. It's not uncommon, though, to hear people still using the word 'mong' pejoratively. I imagine it is heard in playgrounds. In 1970s/80s, when I was at school,  'spaz' was the word most likely to be used.

I enjoyed the honesty and simplicity of Uuganaa's prose: there's a certain clarity, I think, that comes with writing in a language that is not your native tongue. The final chapter made me cry (I don't often cry at books). And the early and middle chapters describing Billy are compelling and moving. I also enjoyed learning about Mongolia, gorgeous details like the pale blue paint behind the goats' horns to identify them as her family's herd. When we were kids, we would refer to somewhere very far away as being in Outer Mongolia, with little or no idea of where Mongolia actually is. This book is an education. The only yurt I have ever been in is the hallowed writers' yurt at the book festival, and it was fascinating to learn of lives lived in yurts, the daily routines. The strength of (extended) family bonds is very much highlighted.

'Mongol' is, as memoirs are, necessarily time-driven rather than plot-driven, and while I learned a lot about Mongolia, I felt there were some sections, where we perhaps get too many 'facts' and not much story. It can feel a *little* dry at times. However, halfway through, the narrative takes an unexpected turn and feels almost novelistic - I couldn't put the book down after this.  And, as I said above, the final section, which deals with Billy's passing, made me cry. I read towards the inevitable event and I felt my throat tighten. I'm glad that Uuganaa and her husband had lovely hospital staff to support them through this dreadful time, though the image stays with me of an insensitive young doctor who came to Uuganaa's ward, earlier  in the story,  to see the 'floppy baby'.

I saw  Uuganaa launch her book at a packed event a few weeks ago in Edinburgh. I was struck by her poise and grace when she read. I highly recommend her memoir, which is published by Scottish indie press Saraband. I'd love to read what she writes next.

Art & catastrophe, & BBC Alba documentary, repeated on 6 and 13 January

The BBC Alba 'Toxic Tiredness' documentary from January 2012 is being repeated tonight at 9pm*. The Gaelic parts are, of course, subtitled. I previously blogged about both episodes here (part one) and here (part two). I appear in episode one right at the beginning looking like a bag lady, with my usually rather funky prescription sunglasses - they filmed us at weird angles outside for a few shots, the effect is alienating and disorienting, maybe that was the intention. And then at approx - 2.30, 7:30, 13, 18:30, 24, 29, 40:50 and 48 mins (I talk about the novel here and read an extract).

And Professor Peter Behan, the consultant neurologist who diagnosed me in 1983/84, appears in episode two, 35 mins in. He is magnificent. I especially liked:

  '... there is an essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense'

Dr Charles Shepherd  of the ME Association - also diagnosed by Peter Behan -  makes a great contribution too (though I don't necessarily agree with *everything* he says). The early-mid eighties was still a hard time to get a diagnosis, it took me almost 18 months, but  the psychobabble that we know today was yet to reach its dizzying heights of obfuscation -  this conflation of  serious neuroimmune illness with 'chronic fatigue' has, as we know only too well, done untold damage. We can only hope that science is now progressing, albeit slowly, unfettered by the hijackers. Here's to some decent biomedical research in 2014.

* Part 1 repeated Tuesday 7th at 10pm and soon on iPlayer

*

And I came across these wonderful photos by Penny Clare the other day on the Centre for Medical Humanities blog. She took them while severely affected and bedridden. I particularly like A fingernail celebrates New Year (I don't want to breach copyright so am not posting any photos here).

 More of Penny's photos can be seen on the excellent Phoenix Rising site.


For me, these photos highlight the link between creativity and illness, we are 'forced' by the illness into places we never knew we would go. We are still ourselves but catastrophe has given us a different way of expression. I often think of my novel/fiction as  my response to catastrophe. Writing often is.

Fabrication (in fiction and medicine)

It's something of a relief to be finished Karl Ove Knausgaard's A Man in Love (I finished a week ago) though I would still recommend it. There are four volumes of the series (of six) still to be translated. I skipped the first one as I don't much want to read about alcoholic fathers, especially when I am trying to write about it (have been sporadically for the last year, a kind of novella-memoir). I feel the same way, these days, about alcoholic father narratives as I do about illness narratives, jaded, but I recognise we still have a desire and need to read - and write - such narratives. My favourite quote from trawling through 520 pages of A Man in Love - and it is a trawl but worth it for the gems - is when he is talking about potential research for a novel:

"… just the thought of fiction, just the thought of a fabricated character in a fabricated plot made me feel nauseous, I reacted in a physical way."

And at the end of this memoir/novel, he tells us:

"The only genres I saw value in, which still conferred meaning, were diaries and essays, the types of literature that did not deal with narrative, that were not about anything, but just consisted of a voice, the voice of your own personality, a life, a face, a gaze you could meet."

Knausgaard is wholly self-obsessed - and not as interesting or original in his 'profound' thoughts as he thinks he is - and neither is he afraid to use dreadful clichés - but his narrative/voice is oddly compelling - and comforting. He has certainly pulled something off, although I am still unsure of what exactly it is. And I love this comment: You write novels because something is broken. 

*

A great article from Dr Nigel Speight in the Saudi Journal of Medicine and Medical Sciences, making some excellent points about the politics and history of ME. He notes that in severe cases:  Multiple symptoms are the norm, and severely affected cases may have more than 20 symptoms. I remember when I first got ill in 1982 I seemed to have a new symptom every day, I would write them down to keep track (this was, of course, the beginning of the writing process but I could not have known at the time):

"Her symptoms have signed a lease behind her back and moved in permanently. They like living in her muscle tissue. It’s nice and warm there." (The State of Me) 

Dr Speight also refers to the scoundrels McEvedy and Beard, the psychiatrists who famously claimed that the Royal Free outbreak in 1955 had been hysteria without even examining the patients (1970), and incomprehensibly influenced others. Dr Byron Hyde, in his very interesting book, describes how when he met McEvedy years later he had justified the hysteria claim by saying it made for 'an easy PhD'. You couldn't make it up. (A shorter version of Dr Speight's article is here via ME Association.)

Fiction, memoir and International Consensus Criteria

Charming article from Chimamanda Ngozi Adichie  on fiction and memoir, she says: 'I long for a new form, a cross between fiction and memoir...' and speaks for us all when she says that 'fiction is more honest than memoir'. This is exactly why I wrote The State of Me as a novel and not a memoir, I wanted to get closer to the truth, as I described here. Also, I love that she is so laidback about fiction and memoir overlapping.

I'm re-reading 'On Being Ill', Virginia Woolf's brilliant essay in which she ponders the lack of novels about physical illness: 'The public would say that a novel dedicated to influenza lacked plot ...'.  It made me think of this extract from chapter eleven of my novel:

stranger   What did you do today?

me              I made cheese scones and put a dead bee in the bin. 

*

Last week, I received a few printed and bound copies of The International Consensus Criteria 2012 from Invest in ME, and on re-reading, am struck again by how important such a document is:

Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.
 
Solution
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

*

 

I wish every GP in the land had a copy on their desk, would stop them writing derivative nonsense like this  (annoys me more as Margaret McCartney is a Glasgow GP, perhaps she thinks consultant neurologists at Southern General routinely gave plasma exchanges for somatisation disorders in 80s?).  Her article is from 2008, maybe she has educated herself since then about biomedical abnormalities, one can only hope. 

The ME Association is, in fact,  sending out educational material to GPs this May. Patients have given names of practices they wish the booklet to go to. Education of GPs is, of course, paramount to stopping the  lazy perpetuation of myths and fiction that has done so much harm to people with my illness. Am curious: are there any 'meeja' doctors in UK who write responsibly and accurately about ME?  I honestly don't know of any.

Why do we read fiction?

Can reading literature make doctors better doctors was one of the questions posed at a 'Dissecting Edinburgh' event last month. It made me think of James Wood's How Fiction Works where he describes how in 2006 a Mexican municipal president decided that his police force should be prescribed reading certain novels - One Hundred Years of Solitude was on the list -  to make them 'better citizens'. And psychologist Keith Oatley speaks of fiction as a 'kind of simulation that runs on minds', and argues that novels can help us understand the world better. I'm not sure if  doctors *can* 'learn' empathy from fiction (I tend to think you've got empathy or you haven't) but  it's certainly  interesting to think of why we read rather than the more often discussed why we write. Both questions are answered by Portugese writer Fernando Pessoa: 'Literature is proof that life is not enough'. (I came across this gorgeous quote a couple of months ago in Pascal Garnier author's note in The Panda Theory. It is often in my head now.)

I happened the day before yesterday to be reading the quaint and bizarre short story 'Rab and His Friends' (1859) by Scottish doctor John Brown  featured at the Dissecting Edinburgh event - Rab is the name of a dog belonging to a man whose wife has incurable cancer - when I learned that Iain Banks is terminally ill. I had a lump in my throat. I remember reading The Wasp Factory in a friend's flat in Aberdeen in eighties. And how crazy we all were for The Crow Road in the nineties. I recall it was dramatised too. Such sad, sad news.

Disability and culture

Interesting podcasts/discussions on cultural representations of disability from Centre for Medical Humanities.  I've just listened to Beyond the ‘Narrative of Overcoming’: Representations of Disability in Contemporary French Culture Sam Haigh (University of Warwick).

Creativity, pain & an owl hooting

In the current New Statesman, TS Eliot Prize-shortlisted poet Julia Copus - who suffers from endometriosis - makes the point that there is more made of the connection between creativity and mental illness than creativity and physical illness. The link with the physical is just as significant, she says. She speaks specifically of the link between creativity and excruciating pain: 'But always after the pain comes the gradual, miraculous release from pain, and with it the sense that my stay in in that strange other realm to which illness transports us is by no means over'. Severe pain takes you to a place where you can think only of the pain and nothing else. From my own experience, the end of the pain would be the beginning of perfection: in my severe days, I used to make atheistic deals with God, please make me better,  I will never complain again about anything. I had almost constant brain tumour headaches/a fist of pain in my spine and when I walked across the kitchen floor I felt I was going uphill. Copus describes how Matisse came to painting from law after a bout of appendicitis. His mother brought him art supplies while he convalesced. He left law and became a painter.

There is also the being ill and observing, as I noted in my review of Kjersti A Skomsvold's The Faster I Walk, the Smaller I Am - you may be too ill to physically write but you can still observe, and shelve the observations away. You have  an enforced stillness, an enforced witnessing, that you simply would not have were you not ill. Many of Helen Fleet's observations in The State of Me are my own,  from those days of  'exile' that longterm illness brings.

And I'm sure there's more fiction/drama where the central character is mentally ill rather than physically ill. As I said in a previous post (towards the end), perhaps mentally ill characters are seen as more colourful, they are more likely to behave 'badly'. If you are physically ill you are dull and boring, not taking part. Or you die.

There has been an owl hooting the last few nights, at first I thought it was a fox shrieking, but it is definitely twittwoo. I discovered that this is in fact two tawny owls, the female goes twit and the male replies twoo. I love this, I had no idea.

Who controls the story?

I've been not particularly well this last week and reading Joseph Anton in bed, it's a long book - 600 pages, which on a Kindle can seem endless, you don't get the same sense of progress you get with a paper book - but compelling even though Salman can be a bit up himself. Whatever you think of the man, he can write, and this book is like a banquet of Michelin food and junk food (the bitchiness, the gossip), on which you gorge and have indigestion afterwards and need to take a break. It is also repetitive, necessarily so, and lots and lots of detail. 

I feel linked with Salman's books as I read Midnight's Children when I was very ill in mid-eighties. I had to stop and start, stop and start, but persevered. Reading this novel was my window on real life when my own life was suffocating and claustrophobic, bedridden as I was with ME. Then five, six years later when all the hullaballoo started I was in London trying to find part-time work, heading (unknowingly) for a catastrophic relapse and the news on TV was of books being burned and I recall watching with my flatmates and feeling baffled, and so very ill (for neuroimmune reasons). Fast forward another six years, and I saw him speak in Edinburgh, I think the Traverse Theatre, and we had to go through airport security (as usual, I had to sit while others kept my place) and  afterwards we left with signed copies of The Moor's Last Sigh (which I still have not read, but I will). Salman says in his memoir that when he was writing TMLS he was annoyed he could not travel to India to do the research and was worried about 'authenticity', but many writers have to imagine the places they are writing about (and he already had much experience of India). I would love, for example, to have the option to go back to Pakistan, I have family there, but I can't risk the vaccinations, or not having the vaccinations, and so I have to rely on memory (of a 6-week trip as a child) and my heart. (Salman's exiled Somalian writer friend Nuruddin Farah advised him to write from what he'd kept in his heart.)

My favourite line so far  is: 'At the heart of the dispute over The Satanic Verses, he said, behind all the accusations and abuse, was a question of profound importance: Who shall have control over the story? Who has, who should have, the power not only to tell the stories with which, and within which, we all lived, but also to say in what manner those stories may be told?...'

I am struck (not for the first time) by this concept of 'who owns the story', who is in control of the narrative, and while I am trying not to write about ME as I am so fucking bored with it, this is what happened with my illness, the narrative was stolen and distorted by a clique of medics/health editors, and the story has been spun and spun like a spider's web. Thankfully, science is the opposite of these 'purveyors of untruth' and is making headway in spite of it all. This from Open Medicine Institute is encouraging.

And, this is good, an essay on why writers should use Twitter. I used to hate Twitter, thought it was bollocks - and there is a lot of bollocks on there, like the internet in general - but it is also a lovely thing, for many reasons, not least  because it takes hardly any energy. I recently came across this short interview with Dr John Chia via Twitter, he researches treatments for ME triggered by enterovirus (as mine was). And unlike the purveyors of untruth he is very interested in the  original virus that has actually caused ME.

And if anyone is interested, here is Zoe Heller's review of  Joseph Anton, shortlisted for hatchet job of the year. I think she is a little hard on him. And a more sympathetic review here from writer Laila Lalami.

Books & snails & MRC behaving badly

Great to see that The Sound of a Wild Snail Eating by Elizabeth Tova Bailey has won the Stanford 2012 William Saroyan Prize for writing. (I have hazy/fond memories of Stanford, my brother studied there many years ago). If you google Amazon and 'myalgic encephalomyelitis', there's an Aladdin's cave of books, the quality varies greatly, but this is easily one of the best. It's a gem and made me think differently about snails, this one was on the shed for a few days last month.

Nice to have some good news round this illness after the latest nonsense from the MRC, which should really get a gold medal for misrepresenting neuroimmune illness. Seems to have changed its tune - or gone back to the same old same old - since its last outing. It really is a kind of medical mafia. (I love Dr Derek Enlander's comment: The thrust of financial gain perhaps to the insurance companies and the government were priorities rather than improvement of the patient condition. Little was mentioned about the relapse that we frequently see in ME/CFS patients after exercise. This was also illustrated by Dr Shepherd’s figures. Presently we are studying pre and post exercise immunology, pathophysiology and genetics in a study at Mount Sinai Medical School, New York in a privately funded million dollar grant.)

And more here on narratives of illness, a post from 2011.

Storytelling

I finished The Vagabonds' Breakfast by Richard Gwyn a couple of weeks ago. The author is undeniably amiable and erudite, someone you'd want to have coffee with, but I found at times there was a lack of narrative drive, he seems to endlessly hang out with a ragtag of bohemian drunks in exotic, interchangeable locations, and you almost get the feeling he is putting this all down not for us but for himself. Still, all in all, a pleasurable read and his tone is always calm and poised even though he's often describing chaos and darkness. You almost forget he is ill he has so many (other) interesting things to say. Towards the end he discusses our need for narrative both as writers and human beings, the endless retelling of stories we go through:

...This eternal recounting, this need to tell and tell, is there not something appalling about it - and not only in the sense of whether or not we consciously or intentionally mix reality and fiction? Are there not times when we wish the whole cycle of telling and recounting and explaining and narrating would simply stop - if only for a week, or a day; if only for an hour?...

I absolutely loved that part.

And I hope this is still available for listening. An Irish writer with ME, Mark O'Sullivan, discusses his craft and illness: 'The whole thing with ME is about pacing'. (I also like his comment about building a book very, very slowly with 400 words a day, though for me it was often less - or no words at all. And it's the editing that really kills, leaving you on the floor, weeping with exhaustion.)

And some fabulous new fiction (an intentional mix of reality and fiction) here from the RCGP (Dr Gerada, Wessely's wife is the Chair), attempting once again to reclassify ME as a functional disorder rather than neurological. Did you know that according to the authors of this paper my illness is 'known colloquially in the UK as ME', so when I was diagnosed in 1984 and the consultant neurologist said I was gravely ill with myalgic encephalomyelitis (ME) - which I'd never heard of - he was using a colloquialism! Really, these spin doctors should get a major literary prize for their fiction.

Some more gems from these new guidelines:

GPs are encouraged to 'connect with patients by listening carefully to their beliefs about their symptoms'. Oh, just fuck off, will you! (Did you get that, Mr Hawkes, do you see what a hooligan patient I am?)

'Take a detailed bio-psychosocial history'. (Easy-peasy: I was absolutely well until I got Coxsackie B4 virus and then I was absolutely ill. End of story. An abnormal immune response which has ZERO to do with psychosocial bla bla bla.)

And still, all too predictably, peddling CBT and (dangerous) GET as the most effective therapies - oh, they are tenacious, these storytellers extraordinaire!

I will let the legendary Dr Speedy have the last word.

Narratives of illness

I've been thinking recently about what books I read when I first got ill. I didn't read about illness, I simply read what I was already reading: novels. I struggled to read French, my huge dictionary clunked beside me in bed, I was trying to hang onto myself, the person I was. I never finished Voyage au bout de la nuit, it's still on my shelves. I persevered and persevered with Midnight's Children. My copy is yellowed now and I cannot open it or smell it without remembering being very ill. And yet it's one of my favourite books.

The only book on ME I had was Dr Melvin Ramsay's slim The Saga of Royal Free Disease (1986) - it is still my bible. I had a couple of 'self-help' books by Drs Anne MacIntyre and Charles Shepherd, but that was not 'til the early nineties - I can't recall exactly (I gave one to a boyfriend, I still have one on my shelf). It was in the nineties that I actually read most illness books, a good few years after getting ill. I borrowed  from an American friend (and still have it, I'm a bad person) Norman Cousins' Anatomy of an Illness (1979) - he used intravenous vitamin C, a treatment I'd also tried with positive results. In a more spiritual phase, I bought a book called The Alchemy of Illness (1993) by Kat Duff. My brother sent me Osler's Web (1996), which I still dip into and refer to. And I still love and dip into Susan Sontag's Illness as Metaphor (1978) - who doesn't?

These days, when diagnosed with an illness - any illness - you have a treasure chest of books to try - self-help and memoir - not to mention the stories, some gems, that the internet can unearth. Naturally, you devour this information, you need to know exactly what has punched into your life, derailed you. You are sustained by others' narratives. You need reassurance; you need confirmation (certainly in the case of ME, so great has our fear been of not being believed). Of course, the quality of all of these shared narratives - online and off - varies greatly. There have been one or two ME 'self-help' books I couldn't get to the charity shop quickly enough.

The misery/illness memoir really took off in mid-late nineties and by the time I was writing about my own illness the genre had - in my opinion - been done to death so I veered as far away from it as I could. This did not stop some editors from trying to pigeonhole my novel as 'sicklit'.

There are, I think, many more works of fiction on mental illness than physical illness. Perhaps mentally ill characters are seen as more interesting, they are more likely to behave 'badly' (if you are physically ill for a long time you are dull and boring, not taking part. Or you die.). I did read Helen Garner's novel The Spare Room (2008) - about friendship and cancer - I enjoyed it but didn't think it lived up to the hype (the ill character also has intravenous vitamin C, and she is definitely not dull).

Now, when I read about illness (non-fiction), I want to read about other things, not just the illness. Last year, I loved Elisabeth Tova Bailey's The Sound of a Wild Snail Eating, it is very much about other things. And I'm currently reading The Vagabond's Breakfast by Richard Gwyn, I saw Me and My Big Mouth review it. I don't always share Scott's taste in books - he hates Midnight's Children! - but I'm very much enjoying this. It is about other things.

And the writing has to engage me, always the writing.

What I am trying to say  is that when you are  ill in a life-changing way - and you have stopped being stunned by the event - you will probably hunger for illness narratives; but, later, you simply don't need or want them (unless they stretch out beyond the illness and tell you about the world). I know that people who are not ill will see things differently. The world of illness is new to them, unusual and strange.

***A lovely quote from Kat Duff, which I just found underlined in green pen (can't help wondering how long ago I did this and why green pen): ... Frankly, from the point of view of illness, healthy people seem ridiculous, even a touch dangerous, in their blinded busyness, marching like soldiers to the drumbeat of duty and desire.

Books & truth & blood

I was truly sad to read about Candia McWilliam's struggle with a rare eye condition. I met her in the mid-nineties, she was funny and beautiful and kind. I can't recall now what writing I showed her. I've ordered her memoir from the library, though I see the memoir/fiction debate has been sparked again. It seems to me that AS Byatt wants to have her cake and eat it (though she admits she is 'tarnished' in this). Memoir is about truth or there is no point, but I suppose it can never be entirely straight as it is based on memory. Fictionalised memoir is a different matter.

Am so happy to see that blood donation from people with ME has been permanently banned from November 1. For me, this is not about the possibility of XMRV involvement, this is about the illness being accorded its rightful neuroimmune status by the blood bank. My energy is horrible just now, I'm like a calculator, ruthlessly measuring out tasks (I'm aways like a calculator, but at the moment I'm counting out in fractions of fractions). I'm definitely experiencing a sliding back this past couple of months.