Ten years since The State of Me - publishing & illness (&Lionel Shriver)

This August it will  be ten years since the The State of Me was published. I'm still very proud of the novel and it remains my weapon in the fight for truth about my illness. A decade has been enough time for me to get over the roller coaster of the publishing process - and I have happily mostly forgotten the shock of it all. It was like a never-ending game of snakes and ladders. As a result of the liquidation of my indie publisher, the novel did not receive the marketing it should have done - but I remain very grateful my precious work was not lost in the drama and that HarperCollins rescued the book. This review by writer Elizabeth Baines remains one of my favourite reviews.

The path to being published was though unbelievably stressful and possibly contributed to my later developing idiopathic bilateral uveitis, a rare and serious autoimmune eye condition, where your iris attacks itself. It was a truly awful time, pouring steroids into my eyes, with the side effects of increased eye pressure, which also had to be treated (I'm sure ME was implicated and I still get six-monthly checks at eye hospital). I still remember at the time a friend telling me not to read  José Saramago's Blindness, which I, of course, did read.

If I were well, I'd no doubt be on to my third, or even fourth novel, by now, but I live necessarily in the margins of the writing world. It is often said you are only as good as your last book, but I'm happy to say that my novel is still being read quietly in the background, giving people pleasure and educating about ME.

I was delighted recently that Nick Duerden, a journalist and writer who has made a good recovery from his own very disabling postviral illness, messaged me and said he found the book 'very powerful and gripping'. He also said: 'You write fear, confusion and anger very well indeed. It moved me'. Nick is author of the recent memoir Get Well Soon (Green Tree, 2018). In the same week, Scottish film director and screen writer May Miles Thomas sent me a lovely card saying how much she had enjoyed the novel. I'd sent May a copy as a thank you for having the opportunity to watch her brilliant and hypnotic film Voyageuse free online on Vimeo.  Voyageuse made me think a lot about the layers of storytelling and how we (re)construct a life. I highly recommend this film.

I have been asked by Lighthouse Books to speak about writing and disability at a one hour event with other ill/disabled writers (I identify as chronically ill rather than disabled, the social model of disability does not in my view serve people with ME particularly well). I have said yes though I never know how I will be on the day, but am flattered as it's a decade since The State of Me was published. I've been shortlisted for a couple of short fiction awards since then, and had short non/fiction published here and there - details in sidebar - but because I live with ME, every minute of every day, I am the polar opposite of prolific (my novella-in-progress in 2015 is still in progress).

I do, though, know about the writing process - The State of Me took probably eight or nine years to write/publish in all - and I do, of course, know intimately about chronic illness. Writing is harder when you are ill. Everything is harder when you are ill. But writing (even as slowly as I do) sustains me. I would love to publish another book in my lifetime, I may be sixty by the time that happens, and I am not joking when I say that. Approaching my mid-fifties, I find I am thinking more about life and death and what we do in  a lifetime. I'm also more acutely aware of just how much my illness has thieved from me. (Interesting to read this interview with Elizabeth Strout who didn't publish her first novel until she was forty-two (I was forty-four). She went on to win a Pulitzer.)

*

Lionel Shriver has been off on one of her wee rants again - this time she is bemoaning the fact that Penguin Random House has a diversity drive. She petulantly writes:

“Thus from now until 2025, literary excellence will be secondary to ticking all those ethnicity, gender, disability, sexual preference and crap-education boxes. We can safely infer from that email that if an agent submits a manuscript written by a gay transgender Caribbean who dropped out of school at seven and powers around town on a mobility scooter, it will be published, whether or not said manuscript is an incoherent, tedious, meandering and insensible pile of mixed-paper recycling. Good luck with that business model. Publishers may eschew standards, but readers will still have some."

How can she be so goddam myopic and insecure? Diversity can only ever be a force for good (as long as we are talking about actual meaningful representation and not just tokenism). Do we really want to be reading the same novels about the same characters by the same people over and over again? There is an excellent response to Lionel's nonsense here.

I can honestly though say I have never felt discriminated against in terms of ethnicity (in fact, mixed race writers are all the rage) or disability, though one agent unprofessionally left her job without telling me, I imagine she did not realise just how slowly I wrote. It was a huge shock to me, but somehow I picked myself up and kept writing, slowly, slowly. Self-belief and the importance of bearing witness to the catastrophe of my illness was what drove me. But like many debut writers, I just felt constantly thwarted by the gate-keeping mechanisms of publishing in general. To be constantly told how good your writing was but because of marketing/pigeonholing there was no 'fit' for your book was soul-crushing. I think though pigeonholing is less rigid now, fiction and memoir are more readily blurred. The idea of what constitutes a novel is much more fluid.

When my novel was eventually published ten years ago, it had nothing to do with representation of illness/disability -  the notion of diversity was not being trumpeted back then. My novel was published in spite of my illness rather than because of. It was published on its own merit, as novels should be. Also, I'm mixed race but The State of Me has nothing to do with race - I'm sure Lionel would be very confused: a mixed race author with a white main character whose illness/disability informs the whole novel. Also, my character does not use a mobility scooter, but I had my first try of one a few weeks ago at the Botanics in Edinburgh and it was bloody liberating.

*

Illness brings a walling off, there are simply aspects of being a writer that are impossible for me. I cannot embark upon the circuit of readings and  festivals that is required of writers these days. The performance part is, for many, a significant part of the writing life. I was lucky that (pre-liquidation) my indie publisher had no concerns about my being unable to do the running around and promoting. It does break my heart a little that I am walled off like this, but that is the case with many aspects of my life. Many years ago in late nineties, I was shortlisted for the Robert Louis Stevenson Award on the basis of a short story. The award is a month in France in Grez-sur-Loing where RLS spent much time. It looks blissful and restful and surely promotes one's creativity. I seduced myself into applying  as my undergraduate year in France in 1983 was cut short because of the onset of ME and I felt that RLS, himself ill his whole adult life, would have wanted me to go. But had I won I would have been unable to go as I learned later that you have to cycle through the forest to get your groceries.

Still, a decade ago I had my book launch in Waterstone's on George Street (it still had the comma then, though now closed down) - it was probably the happiest moment of my life.

Wellcome Book Prize 2016 - ignorance rewarding ignorance

*Updating this post: fantastic news, first ME biobank in Europe is officially opening its doors to external researchers on May 12 at London School of Hygiene and Tropical Medicine. More info here.

I resent using any more energy - it truly takes its toll - on the daft neurologist Suzanne O'Sullivan, but the travesty of her winning the Wellcome Book Prize is too important to ignore. I've been trying to correct her harmful nonsense about ME since she won the prize last week, on Twitter. She herself blocks everyone who challenges her, including the mother of severely ill patient Whitney Dafoe whose father, Stanford scientist Ron Davis, is valiantly trying to complete the ME jigsaw.

In serious scientific circles, there is no longer any doubt that myalgic encephalomyeltis/chronic fatigue syndrome (I hate that name, but it is used in research) is  a serious, complex physical illness - though poorly understood, it is NOT psychiatric or psychological. However, that didn't stop O'Sullivan from including ME in a chapter of her 2015 book, It's All in Your Head, a study of psychosomatic illness - or rather a series of anecdotes about patients she has seen. She has published before on carpal tunnel syndrome and non-epileptic seizures (I have not been able to find any papers on ME, unsurprisingly).  Whatever the merits of the other chapters, O'Sullivan has no expertise whatsoever in ME, but that didn't stop the judges from being seduced by her magnificent nonsense (worth noting I think that no one in the research world has heard of Suzanne O'Sullivan, but she is elevated to an ME 'authority' just by having this book published).

Her ME chapter is, of course, wholly uninformed and manipulative, unoriginal in its prejudice and bias. I reviewed the book last year on Goodreads.  Her Rachel chapter is revealing only in what it omits. It's fairly clear to anyone who is informed about ME -  as patient, carer or true specialist - that O'Sullivan is havering (good Scottish word). She's not going to rock the science, of course, that is progressing nicely - but unfortunately she is persuading new gullible readers that ME is an unconscious switch in our heads that flicks on and mimics serious illness. You couldn't fucking make it up that in 2016 this got the Wellcome Book Prize. The judges - I imagine intelligent and decent people - though only one seems to work in medicine/science - simply rewarded ignorance with ignorance.

What is *most* galling is the fawning, ignorant media, who have indulged her all week, themselves almost wilfully ignorant of biomedical research. They assume a mantle of authority. And readers and reviewers of O'Sullivan too become overnight experts in a neuroimmune illness they know nothing of.

I was told earlier by an obnoxious book reviewer (he was making quips about his own hypochondria and full of praise for her book, saying he'd be 'thrilled' to know he didn't have a serious neurological disorder, and wondering why do patients have  a problem with a likely psychological diagnosis) that the ME chapter is *only* 20 pages and that he had no interest in debating further. I told him I've been ill for 33 years, diagnosed by a consultant neurologist, and 250, 000 in UK have ME, so 20 pages is not just 20 pages; and I suggested perhaps it's best not to tweet about a book if you have no interest in discussing the issues. For this, he blocked me. My voice silenced just like that. Basically told to dry my eyes, we have nothing to complain about. A quarter of a million lives already severely diminished, further harmed by O'Sullivan's nonsense. Yes, book bloggers know best. What a luxury to be able to dismiss those 20 pages! He blocked others too who tried to educate him.

Interestingly, no one in the UK media has yet asked Suzanne O'Sullivan about the toxic PACE trial - which has just been in court over failure to share its data (someone on Amazon has suggested there might be a significance that one of the judges works for QMUL, but surely not, that is just too depressing to contemplate that judges would not be independent. Though the way this illness has been relentlessly politicised since the nineties truly stinks. Personally, I don't believe there was any 'fix', just lazy, old prejudices about ME being confirmed). O'Sullivan predictably praises GET/CBT in her book - cannily, without actually naming PACE - as the most effective treatment, with no reference at all to the harms of graded exercise. Just as she praises Simon Wessely, without naming him. His name, of course,  now carries too much baggage. Her claim that he is 'the person in the UK who has taken this illness the most seriously' is, I'd confidently say, a giant whopper (there are a few in the chapter). She conveniently omits the 1980s' UK specialists: Melvin Ramsay, Peter Behan, Betty Dowsett, John Richardson, and Nigel Speight (my illness was taken very seriously in 1984 by Professor Behan, then Doctor).

And, of course, she disingenuously conflates ME and 'chronic fatigue', just like those psychiatrists she emulates. O'Sullivan - and those like her - seek to control a dying narrative. She has been silencing those who politely challenge her. I was blocked when I simply asked her this. She lives in a little bubble on Twitter, which only lets praise in. Patients with ME have no right of reply. Is this not quite strange for a scientist? The prize is about stimulating scientific debate, one wonders what she is so afraid of. The truth, perhaps?

It has been gruelling having this illness for 33 years, and indescribably exhausting trying to educate others, yet still we are facing this prejudice and nonsense from a small, self-congratulatory club in the UK (USA are miles ahead, although we do have fantastic initiatives here like Invest in ME annual conferences). As someone else said on Twitter, how much evidence do these people need, what will it take? What do they all gain from acting like petulant children, fingers in ears?

I cried when I read that O'Sullivan had won the Wellcome Prize. Could this really be the most deserving book on the shortlist? - it is not even well written, the somewhat toneless chapters all blur into one (not to mention that the made-up patient name 'Camilla' is alienating, but that is a trivial point).  I have now run out of words, trying to educate the seemingly ineducable, but I do still have my precious novel. It remains my weapon. Two of these books tells the truth about Ramsay-ME, one recycles nonsense:

More updates:  *For ME Awareness Day (12 May) Prof Julia Newton on abnormalities found in ME. 

** More on PACE trial shenanigans.

*** Updates on mitochondrial research.

The daft neurologist (cont'd) ...

My book being published in 2008 has been one of the happiest times in my life - though the process was certainly not without its trials (and I developed very frightening uveitis afterwards - the whole fiasco took its toll) - and on the launch night I was in heaven. The room was packed, copies of my novel piled up beside me, my nephews - then just three and six - were sitting in the audience and walked up to the front with roses during the reading. That was the only actual launch event I did, I can't possibly run around the country/world doing writerly things and that breaks my heart.

Still.

 *

You would think/hope that thirty years after my diagnosis of ME - abnormal muscle biopsy, abnormal EMG, abnormal blood tests etc etc etc - all would be fine and dandy, we would be waiting patiently and quietly for the elusive biomarker, as dedicated researchers worked hard to help us find a cause and cure. No chance. 

The (ever more desperate) psychiatric lobby is always hiding behind you, waiting to jump out and squeeze the very soul out of you. This past fortnight we have been treated to a work called 'It's all in your Head: True Stories of Imaginary Illness' by a daft neurologist called Suzanne O'Sullivan, who apparently googled ME and then wrote her ridiculous chapter on ME/CFS and false illness beliefs. Her book sits on the table in the same Waterstones I had my launch. It is very tempting to place copies of The State of Me, offer a 2-for-1, prevent readers being  duped. And Suzanne is of course, doing the whole literary trail, book festivals galore. She seems wholly unperturbed about spreading medical misinformation.

This Bookseller article referred to her book as 'groundbreaking and controversial'.

I can confirm however that it is certainly not groundbreaking, more a dreary recycling of the biopsychosocial narrative because as I already reviewed here on Goodreads, it includes a case study 'Rachel', a young woman with 'ME/CFS' who 'fails' to manage her fatigue and doesn't get better. Naughty Rachel. She refuses psychiatric treatment (Good for you, Rachel). The chapter is manipulative and incoherent. Vacuous too. 

This is 2015, let's just remind ourselves. Yet Suzanne has not managed to keep up with the science in spite  of having it all at her fingertips. If Suzanne were not so dangerous, she would be a hoot, but this is, frankly, indefensible:

 'I will not be obtuse. I believe that psychological factors and behavioural issues, if they are not the entire cause, at the very least contribute in a significant way to prolonging the disability that occurs in chronic fatigue syndrome. Do I know that for sure? No, nobody does...'

'...So is it a somatisation disorder? ME/CFS is an illness in its own right that has not traditionally been referred to as a somatisation disorder, but that is not to say that it does not share common ground with psychosomatic disorders. It manifests as multiple medically unexplained symptoms. Sufferers of both disorders carry similar behaviours and illness beliefs and neither leads to evidence of organic disease however long you wait.'

 'There is certainly evidence that ME/CFS can be precipitated by exposure to an infecting agent (no shit, Sherlock!) but once the infection has cleared, there is no way of explaining how the syndrome of chronic fatigue develops, except perhaps to consider the psychological vulnerability of those affected and their behavioural response to the illness.'

The icing on the cake (this part is also in my Goodreads review but is worth repeating for those of us who actually have an understanding of the stinking politics around this illness):

'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 alone 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. ME was being 'disappeared'. The patients she sees with dissociative seizures most likely don't have classic ME in first place. (Who knows what they have, given that ME/CFS has become a dustbin diagnosis, thanks to Oxford criteria, so loved by Wessely school.)

But O'Sullivan seems not to be unaware of the problems with criteria. (She really ought to watch Leonard Jason, professor of psychology, his 2014 presentation on case definitions and criterion variance is excellent.)

And we don't ever find out what happens to Rachel, she is not followed up. O'Sullivan also fails spectacularly to describe the experience of probably all of us with ME, of pushing ourselves to recover only to relapse catastrophically.

So, a doctor who is not an expert in ME feels entitled to devote a whole chapter of her book to ME, in which she shamefully undermines all the years of hard work those of us with the illness have done to educate. She is taking the piss. She will not rock the science, of course, it is progressing nicely, but she could well do damage to someone with ME who has faced disbelief from friends or family.

What I have realised, though, is there is little point in railing against the oafs, it only makes you more ill. And to my surprise, even book review threads contain oafs, I did not know this. I was naive and thought that book threads might be a useful way of educating other readers about ME. People who read are nice, friendly, reasonable. Not so.

Oafs abound. And they steal your energy, they are noise in your head. They are self-important, bloated and entirely lacking in self-awareness. They know best, you see. Your thirty-three years of lived illness does not equal their opinion. And they also have a skill of blocking out hard, objective science. They have convinced themselves that 250 000 people in the UK are somatising across the decades. As someone on the book thread said, their blocking out of evidence is a psychologial phenomenon in itself.

The Countess of Mar has written a stonkingly good letter to O'Sullivan and copied it to her publisher Chatto and Windus (and also to Simon W's seemingly joined-at-the-hip friend David Aaronovitch). It is just so dispiriting that Suzanne's publisher saw no harm in her framing of ME as psychosomatic. I guess they just see £ signs (ooh, controversial, edgy science).

The truth is, of course, that O'Sullivan has indulged herself at our expense, and her publishers have indulged her too, by including a neuroimmune illness in a book of 'all in your head' disorders.  It goes without saying that no one in the ME patient/research community had heard of her until a few weeks ago, and yet readers - frighteningly gullible - are willing to bestow authority on her.

Dearie me.

Happily, the Annals of Internal Medicine have just put this very fine NIH  report online: National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

I have decided not to blog about ME any more, not unless there is good news to report,  advances in research, positive events. I have educated others as much as I can,  but it is simply too draining, physically and emotionally to challenge nonsense.

Science is winning, it always has been.

But in the meantime, I have banished the oafs.

Manto & translation, & Pakistani fathers

This is Saadat Hasan Manto's Mottled Dawn, Fifty Sketches and Stories of Partition, published by Penguin India. The cover is exquisite, it came the other day. The painting is 'Melting Wit' (2005, acrylic on canvas) by N. S. Harsha. I'm not sure if the clowns are bleeding or melting. Harsha says: 'I fill my work with gaps and loose ends; I want to lead and mislead the viewer. Ambiguity makes a picture very exciting'.

I've already read 'Toba Tek Singh' online - the first story in this anthology -  and have also read the introduction by Daniyal Mueenuddin, whose own short story 'A Spoiled Man' from In Other Rooms, Other Wonders is one of the saddest stories I've ever read. I look forward to the rest of Manto's  deceptively simple yet brutal and sometimes funny stories about Partition. It struck me that Manto was only seven years older than my Indian-born Pakistani father, who migrated to Karachi briefly in the late forties before coming to the west to work as a doctor. Manto migrated to Lahore from Bombay, but he was never happy there. Both of them died as not old men through alcohol excess.

These stories have been translated by Khalid Hasan and I was interested to read that Aatish Taseer - the estranged son of  the assassinated Pakistani politician (himself the nephew of poet Faiz Ahmed Faiz ) - does not approve of Hasan's translations, suggesting he lacks 'the simplicity, speed and vitality' of the original prose. He has translated Manto himself in an anthology of Selected Stories (Random House). I downloaded these last month and have read a couple. This reviewer is critical of Taseer's criticism of Hasan as a translator. As I only know a few words in Urdu - banana, water and thank you - I have to trust that whoever has translated has done a fine job.

And, on translation, here is a list of the best books of 2012.

Four years

Four years to the day, The State of Me was launched, one of the happiest and most surreal and exhausting times of my life.

Stunning

The Olympic cauldron was stunning,  that is no exaggeration, the copper petals floating up to form one single torch, I had tears. I also cried at 'Flower of Scotland' in Danny Boyle's wonderfully quirky and emotive opening ceremony, and at Muhammad Ali carrying the flag. It was a bit dislocating to see Kenneth Branagh (recently in Wallander) as Brunel, but you were reminded of what a great actor he is, so much in his eyes. The Palestinian athletes brought tears to me too. The Pakistan team - playing hockey - is, sadly, not expected to win any medals, and I thought of my (pretty crappy) hockey 'career' at high school. But Pakistan is making the Olympic footballs, did you know? I'm not really into sport, and obviously don't play, these days, but I can relate to the process of pushing yourself to your absolute limits to get something you want more than anything - in my case, The State of Me being published - and facing hurdles, and overcoming them with pure self-belief and perseverance (and a spoonful of luck). I also very much admire physical stamina and talent and endurance, and wish all the Olympic athletes the best of luck! (I'm fickle with my support, at primary school I got into trouble for cheering for Ireland at a Scotland - Ireland  hockey match - I felt sorry for Ireland as they were losing.).

'Birth of a book'

Wonderful: old-fashioned book printing, almost makes you want to throw away your Kindle!

99 reasons why I should go back to my Kindle

I keep almost forgetting I've got a Kindle but on Monday I will be eagerly downloading Caroline Smailes' innovative ebook 99 Reasons Why. The eleven endings have caused quite a stir, some people getting their knickers in a right old  twist.  You can read one of the endings here.

I am excited and  want to read them all! 

Update* Just saw this Reuters video, where both Caroline and Scott Pack (our publisher) talk about  99 Reasons Why.


(And I should really go back to Tim Winton's Dirt Music which I think I started end of January on Kindle,  was enjoying and stopped for no good reason (I wonder if the paperback at my bedside would have lured me back sooner, the Kindle can seem inert by comparison, it's just not as seductive if you need a bit of  a push). Though I admit chapter two of The Return of Captain John Emmet  - the paperback - didn't really grab me -  I was reading it at the eye clinic, maybe that's why - I loved the first  chapter - so I've lent it to my mother in the meantime. Two chapters is certainly not enough to dismiss entirely. I will go back, I usually do.)

Have I written a historical novel?

Interesting to see that Jarvis Cocker is joining Faber as an editor, what a quirky, lovely event. I love Pulp and listen to Jarvis on 6 Music on Sundays when I remember he's on (listening again is just not the same). Faber's editorial director was the agent who very much encouraged me to turn The State of Me into a novel, when I showed it to her  in 2000. Back then, it was a very long short story - maybe 20,000 words - called Through the Round Window. I did not think I had the stamina to write a novel, and had no idea about writing novels, but somehow I got there. She said I wrote 'clear, gorgeous prose' - that phrase has always stayed with me. She was no longer working as an agent when I eventually finished the book, five/six years later, but she was certainly instrumental in my keeping the faith that my writing worked. Self-belief, I think, is the greatest tool to getting your book published. Well worn advice but true, if you don't  truly believe in your writing no one else will. I think the final word count was around 100,000 but I would need to check. BBC Alba asked how I managed to write a novel, having ME. I could not write a whole first draft, which I imagine is how most writers write. I certainly had an outline, but I would finish one chapter, polish  it up as much as I could before going on to the next. I simply could not have faced having to go back over 100,000 raw words, editing from scratch, that would have been overwhelming. The book has an episodic feel - short scenes and pauses -  and I think that very much reflects the illness, the many necessary rests in-between tasks, the white space, the gaps where you 'recover'. Again, this was all unconscious, I wrote what I wrote, the way that I could. I remain so happy I got there, and especially now, with all the XMRV/WPI stramash, my novel almost feels historical, pre- any of this research/debate. I think though, although  it spans 1983-1995, it still very much reflects the truth of the illness, the chaos and hell we find ourselves part of. As always, my heart goes out to those who remain severely and unremittingly  ill.

Gorgeous

My wee aunt's service was beautiful and simple, overwhelming too, I'm all cried out. A Catholic service just as my granny and grandad - and she herself - would have wished. I have no religion but the hymns were gorgeous and even the interludes of readings/prayer - a kind of buffering from what is about to happen, the actual burial. Like any funeral or wedding, family members thrown together, people we don't see for years on end, suddenly in the same space. There's much to catch up on, but not enough time, conversations started and not finished, and as usual I was talking so much - someone asked me about my book - I did not manage to finish eating, the tables were being cleared, so I nabbed a scone away with me though I had to forgo the jam and cream. The last time we were all together was at my granny's service almost three and half years ago. At that time, my publisher had just gone into liquidation and the book's future was in horrible doubt, so it was so lovely, this time, to have people coming up to me saying how much they had enjoyed it. The morning of the service we were staying with my aunt and uncle who live very near the street I grew up in and I joked with my mother that I was up so early I felt like I should be going to school.

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.

Tweets & Kindles & Tulips

Am almost afraid to blog after the last few days of chaos, previous comments still not restored, but I just want to link to an excellent post by Johan Mares. And this is positive news too. I felt like I'd been on a demo on Thursday night after tweeting for #may12th (reading tweets is energy consuming too, a cockpit of information), and I was pleased that Marco Biagi (newly elected MSP) and AL Kennedy (one of my favourite writers) RT'd one of my tweets, but of course the health editors ignored me, they ignored all of us. Someone remarked that Richard Horton (The Lancet editor) has his head in sand, I would like to suggest that his - and all the PACE supporters' - is somewhere considerably less pleasant. This is a timely article on the editing of health journals: 'Are journal editors like used car salesmen?'

The Kindle version of my book was briefly at #92 in literary fiction, I guess it spiked as a result of tweeting. I am told that Kindle is now 80% of market (of ebooks), though when I see one on the bus - kind of infrequent up here - I still think it has something of Star Trek about it.

I went into the garden on Thursday evening - post-demo - even though it was very windy, I needed air. My arms felt like rags, and my head had that horrible heated up, inflamed feeling. The tulips were streamlined by the gusts and made me think of a dog's ears being blown from a car window. They made me smile.

Guardian books podcast & Egypt

The Guardian podcast on books on illness is here, I was delighted to get a mention (approx 14 mins in), I really did not expect to, thanks again so much to those of you who tweeted the editor. Just shows that being a low profile tweeter - as I most certainly am - still gets results! As is often stated, writing about illness - or any catastrophic situation - is a way of making sense of the chaos, and is undoubtedly therapeutic as well as creative. My decision to write The State of Me as a novel and not a memoir has, in my mind, been reinforced to have been the right decision; illness is still mostly dealt with through non-fiction and I simply opted for a different way. The podcast made me think back to the rocky, rocky road to getting published. I wasn't just writing about being ill, I was writing about an illness that was (is) not believed by many to be physical: it was crucial to have my voice heard.

Also, written as a novel, it had to have more than time moving it along, there had to be plot too. Of course, when your character is very ill for months and years on end, there is no plot, there is only time. We mark our days and hours in terms of feeling like hell, or slightly less than hell. But if you have a love affair at the centre of the book - abracadabra! - there is plot. Being well-versed in chronic illness and stormy longterm love affairs, that was the natural way for me to go.

This podcast is very listenable - I will go back - and features well-known, older books on illness. I've read them all except Robert McCrum's memoir My Year Off (1998) and the Barnes' translation of Alphonse Daudet's In the Land of Pain (that very much appeals, I'd find it too hard in French). Also, good to learn of a new book, The Two Kinds of Decay (2011) by poet, Sarah Manguso. I very much related to her preference of writing in sparse, fragmented prose. Sarah also describes having plasmapheresis as a treatment for her rare autoimmune condition CIPD (diagnosed after half an hour by a neurologist!), which I also had - briefly - as an experimental treatment for ME in 1984 - an autoimmune treatment for a neuroimmune illness. I thought I would die afterwards. 
 

The new plasma was from a Polish donor. The technician told me I had great veins and that I might feel faint during the proceedings. It took three hours. He told me what Highers his son was doing and what colour of carpets him and his wife were getting for their new house. When it was over he said, That’s you, you’re half Polish now. He handed me a see-through bag of my old plasma. It was the colour of dirty goldfish water. A porter wheeled me back to the ward and delivered me to Bob. I had the bag of old plasma on my lap. (Chapter Six)
 

There are, of course, time constraints but the podcast could also have included Candia McWilliams' magnificent memoir on writing and blindness What to Look for in Winter (2010). I also recall enjoying Spalding Gray's slim memoir in the nineties, Gray's Anatomy (1993), his account of searching for a treatment for an eye condition, 'macular pucker'. When I read about others' illness, there must be humour, if the tone is too earnest I will pass. And I've been thinking about what books make me feel 'better'. When I was very ill, I read Midnight's Children, it became my project. I loved it. I cannot pick up my (yellowed) copy now without being taken back to that bleak time. Parvati the Witch is the character I remember.

Interestingly, one of the readers interviewed in the podcast - twenty minutes in - who benefits from attending 'therapeutic reading groups' - actually has ME. It struck me that to have our illness mentioned, like this, is a small step forwards. It is just another illness, one of many illnesses. No drama, no controversy. A woman with ME attends a library project, just as a woman with MS or lupus might.

Just after I realised TSoM was in the podcast on Friday I learned of something truly wonderful, Mubarak had resigned. I cried a little. How fabulous that by standing peacefully in a square for eighteen days you can bring down an entire dictatorship. There are lessons here for all of us. I am overjoyed for the Egyptians, I hope the Palestinians are next, hopelessly naive as that may sound.

Is the Wizard of Oz the magic behind ebooks?

Epublishing seems so random, I think there is a drugged up Wizard of Oz behind it all. I heard today - through Twitter - that The State of Me is now available in the Australia iBook store. I had no idea! Meanwhile, the corrected Kindle version for Amazon UK (there were glitches in the original) is still in a queue, and The Book Depository, for reasons I cannot fathom, has just removed the ePub/Sony link to my book. (I also see the one review displayed there used to be five star but is now demoted to three star.) All of this makes me dizzy, best not to think about it. And, yesterday, the Guardian asked, Is the ebook the new hardback?

The opposite of the moon

I'm not the first to have observed that the fascinating and moving rescue of the Chilean miners has been reminiscent of watching a moon landing. A grainy capsule, images being broadcast from an eerie, alien world, except this is down (almost half a mile) instead of up (250 000 miles). I can't help but worry for the last man to be rescued, waiting on his own for Phoenix to come sliding back for him. I've been thinking of Zola's Germinal, which we read in our second year at uni. I recall re-reading it for an exam, my cousin and I had gone to a caravan in the Trossachs for Easter and would go jogging first thing, study all day and get tipsy at night in front of the cosy stove. Those were the days. Good luck, brave miners, I hope by morning you are all 33 safely out, back with your loved ones. It must be sweet agony for those still waiting, 13 I think. I read this piece in Indy with interest. The book deal is already being sewn up. And Oakley - who donated the sunglasses to the emerging miners - are getting major free advertising. I am curious to know how long they have to wear dark glasses for, how long does it take to readjust? And not to dampen the joy of it all, but ... I hope these miners make a fortune from selling their stories to the media. They deserve it.

A tiny accordian

A week ago, I saw someone reading an ebook on the bus. An Amazon Kindle. The first time I'd seen an ereader in public. It felt odd, jarring, the moment has stayed with me. I sneaked a look at the text, it was clear, but the keys for navigating made the book look like a tiny accordian. I was going to ask the girl if she liked her Kindle but she had earphones in. I honestly can't imagine ever wanting an ereader. I am turning into George Mackay Brown.

I still don't know the fate of the Kindle version of The State of Me, if they have managed to iron out the glitches. I am hearing that there are issues with ebooks and asterisks.

Those corrections...

Forty seconds into The Review Show Jonathan Franzen realised there were errors in the UK edition of his new novel. I'd be furious too but 80 000 books being pulped makes me want to cry.

The future of the novel

Loved the discussion of the future of the novel on BBC Review Show last night. David Shields - his book was discussed - wants more reality in fiction, I am certainly intrigued by his book Reality Hunger: A Manifesto. The panel seemed to have mixed views about ebooks. I don't think I'll ever be a fan. I like my books made from trees. And the thought of libraries not surviving (ebooks) is just too bleak for words. Also, it has come to my attention that the asterisks have inexplicably disappeared in the Kindle edition of my book (#95 in Kindle literary fiction I just saw, next to Ovid, no doubt a brief status!), and the stranger/Helen sections are not very easy to read, publisher is looking into. If you do not have an ereader you can download Kindle for free for PC and sample the first four chapters of the novel.

* The ebook is being withdrawn until the glitches are fixed.

Rainbows in my Eyes by J. K. Rowbory

I became aware of J. K. Rowbory's poetry collection through Twitter (which I use only occasionally) and am delighted to see this review by Clare Dudman. Jenny has severe ME and proceeds from her book will go towards her treatment. I have not bought Jenny's book yet because I preferred to see extracts - I think readers always like to see a sample of what they are going to read - but from the extracts Clare has posted I'm very keen to read the rest. Though no longer severe, I am well aware of the hell of severe ME (and also the hell of getting published!). I am thrilled for Jenny and love the cover.

ME Association review of The State of Me

I am not a member of any ME groups these days but am very happy that a copy of ME Essential, the ME Association's quarterly magazine, has just come through the door - it has a review of The State of Me by Tony Britton, the publicity manager of the MEA.

'... Some searingly beautiful self-perceptive paragraphs are tricked out now and then, which quite take the reader by surprise. But precious this is not. The tone overall is of someone in love with life and words... And Nasim is absolutely word perfect on neurological ME, though the way she drives through to the heart of what is wrong with Helen - by breaking away from the narrative to chat to a stranger in her mind - keeps the reader glued to the page. The book is immensely and imaginatively instructive as a result.'

Reading through the rest of the magazine I am struck, almost anew, by how much people's lives are blighted by this condition, and of the ignorance that still abounds. Not that I need reminded, but it makes me shiver when I see aspects of the illness laid out formally in a magazine like this, and relive the battles that people with ME are still having to conduct.

And I feel proud all over again that my book made it.