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.)

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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.

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

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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.

'Telling stories is really telling lies'

I used to collect wee scraps of writers' quotes that I liked and paste them into a book. I found this snippet I cut out years ago from BS Johnson:

"Life does not tell stories. Life is chaotic, fluid, random; it leaves myriads of ends untied, untidily. Writers can extract a story from life only by strict, close selection, and this means falsification. Telling stories is really telling lies."

And I love this:

"The novel is a form in the same sense that the sonnet is a form; within that form, one may write truth or fiction. I choose to write truth in the form of a novel."

Goldfish & wisdom

I had a wisdom tooth out on Wednesday so still feeling a bit fragile but keeping it all at bay with illegal amounts of Nurofen and codeine. I got adrenaline-free local as adrenaline is not great for ME, though I wondered - briefly - if the dental surgeon perhaps thought I had false illness beliefs after the media circus last month, though he gave absolutely no indication of this (I console myself that most people can probably see through the bollocks of Wesselymania). He was great and I came away loving our NHS. In my novel, the main character's father is a dentist and I've been thinking of this scene:

My real father Peter had his own dental practice above a butcher’s shop. He had minty breath and slept with his nurses. (A little more suction, please, Denise!) When you went through the close to get to the surgery upstairs, you could smell the meat from the butcher’s delivery entrance. Sometimes there was blood on the ground. There was a fish-tank in the waiting room and the goldfish always had a string of white shit hanging from its tail. Peter left when I was ten but we still went to him for fillings. I didn’t find the divorce traumatic – I’d never really liked him. The only thing I have in common with him is that we both love raw onion.

I did a search for 'goldfish' to find this scene and found three occurrences, that always intrigues me, recurring images that I have forgotten.

'The Threats', a stunning new thriller from UK media

Hoping to draw a line under the hyperbole and bias in the media that have caused so much stress and despair to people with my illness, this last four weeks. We've had the threats of 'suicide bomber' patients ramped up to such an extent that if researchers into ME weren't actually scared off before - a fact which has been ludicrously and harmfully exaggerated - they sure as hell will be now.

Thanks, Simon.

And any letters of reply from our point of view or our charities' - ie people with ME, who live with it, who know it, who research it - have been so brutally edited, we've been lucky to get an adjectival phrase published.

'The Threats' has been a highly entertaining, unnerving mini-series, broadcast over a month:

First, we had Nigel in BMJ.

Then Tom on the BBC, who was so excited he sounded like he was in a spoof documentary.

Then Esther on Radio Five.

Then a panoply of small scale reports.

Then Rod; then David; then Stefanie with Simon himself in the Times.

Then Robin in the Observer.

Then a lovely cartoon in THES (removed).

Then Simon in the Spectator.

Then Max in the Telegraph, unplugged on Friday (then removed, remixed by Monday).

Then Robin on the Guardian Science Weekly Podcast in case we hadn't got the gist in the Observer.

Then Simon repeating himself on the Spectator blog, Coffee House.

So, I think we've got the message now, loud and clear - Simon and his followers will do anything to prevent biomedical research into ME, they desperately want to keep it all to themselves - with their loveable, eccentric and conflating notions of 'false illness beliefs' and 'chronic fatigue syndrome'. I return to an excellent quote regarding this whole stramash, from a journalist in 2007:

“I’m sure there is a lot of psychiatric literature on how denying another person’s reality triggers all sorts of deep hostile responses”.

No one endorses threats, obviously, but the point spectacularly missed by the media is that Simon and his disciples are responsible, in the first place, for creating a climate in which such threats might flourish, by denying the reality of a neurological illness for decades, the way they have.

My final point on this - I am so very, very, very weary with it all - is: Simon, if you want to be a neurologist so much - stealing neurological illnesses and labelling them as psychiatric - then why on earth did you become a psychiatrist?

* I'm pleased 'The Threats' wasn't in any Scottish broadsheet, but I could, of course, be forced to eat my words.

** I just saw this very moving trailer from Voices from the Shadows, premiering this autumn in Mill Valley, California.

Storytelling (6)

Interesting blog post here from BMJ - discussing the way we use metaphors to understand and describe illness. I left a comment and only later realised the author of the piece is a psychiatrist; my comment has not been published so perhaps he is of the Wessely persuasion, who knows (or perhaps he simply has not had time, I prefer to think that is the reason, but one never knows, these days). Professor Wessely, as we know, takes metaphors and illness a step further and actually declares the illness to *be* the metaphor itself. Quoting him from the Times, the weekend before last: “Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

Yup. All getting a bit Elaine Showalter.

It's worth noting that there are, of course, fine psychiatrists - and psychologists - who fully understand that ME is neuroimmune and don't give us more grief to cope with than we already have - ie coping with the illness itself.

I also want to flag up Hillary Johnson's Osler's Web website. I still remember receiving my copy of Osler's Web in 1997, my brother had posted it to me from USA. It's funny, in my head the book is orange, but in reality it is only the spine that is orange, the cover is black and red with a little white - but my memory is of opening a package with an orange book inside. I went to Hillary's blog last night to follow up a comment I'd left earlier and was delighted that she mentioned she had very much enjoyed The State of Me, she calls it 'classy writing'.

In 1997, the year I opened an orange book that was not really orange, I'd only started thinking of the possibility of writing a novella - never imagining I would cope with a full length novel - about the illness. There is, interestingly, orange - the colour and the fruit - in The State of Me. It features a fair bit, no idea why. (Swans do too.)

This extract describes Helen Fleet's 21st birthday:

She has lots of cards with a dual message: Congratulations on the key of the door! Get well soon! She thanks everyone politely. Her arms and legs are injected with poison. She doesn’t have the strength to peel an orange. Her mother has made beef stroganoff (the cows haven’t gone mad yet) and fresh cream meringues. Helen has her birthday meal on a tray in bed. She has a sip of champagne. Jana sits with her and makes her put on her new lipstick. Helen feels like a clown, a grotesque invalid wearing bright red lipstick and titanium earrings.

* My comment on BMJ blog has been posted, so I am glad, not being censored, after all.

Storytelling (5)

More Wesselymania from a UK press apparently lobotomised when it comes to reporting on ME. Wessely jerks these health editors like puppets, it's truly obscene, this cartel of hyperbole and hysteria. We have been treated by the media to a cruel distillation of events since 29 July. Only one side of the story is reported. No mention of the abuse PWME endure from CBT psychiatrist militants. Really - why are Wessely and co still going on about these threats? If they have indeed come from a *tiny* minority of the patient community - why then the need to bleat to the media every week? The way this is being reported you would think these researchers were trembling for their very lives as we speak. Has the Science Media Centre secured Simon a slot in every newspaper every weekend 'til the end of time? (As someone said elsewhere the Science Media Centre is the Science Mendacity Centre when it come to the reporting of ME, which it constantly conflates with 'chronic fatigue'. And Simon, of course, sits cosily on the SMC panel.)

I also see he has changed his wording about Iraq, he is less glib now.

It is really time these people grew up, and left biomedical researchers to do the real job. If they want to research nebulous 'chronic fatigue' - apparently common! – ME is NOT common – that’s fine. But please leave those of us with neuroimmune illness alone and stop causing us harm with your obsessions and inability/refusal to embrace actual science.

And let's just remind Wessely and his disciples of the International Consensus Criteria for ME, published in Journal of Internal Medicine in July 2011.

From Abstract: The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).
And let's also remind them of a recent BMJ thread which the Observer writer must surely have missed when he was recycling - sorry, researching - this article.

Storytelling (2)

Truly disheartening to see 'chronic fatigue syndrome' - unforgivably and ignorantly - referenced as a modern form of hysteria by Asti Hustvedt in her book Medical Muses - this from Guardian reviewer:

This turns Hustvedt's book into a study of how the diagnosis of illness can be chosen, a negotiation between doctor and patient. With a nod to contemporary life, Hustvedt points out that "no drug exists to cure anorexia, bulimia, self-mutilation, chronic fatigue syndrome and multiple personality disorder and no genetic flaw has been found to explain them. Furthermore, as was true for hysteria, these contemporary disorders are thought to be contagious, spread by suggestion, imitation and therapy."

It would appear she needed some juicy 21st century illnesses to compare to late 19th century 'hysteria', and lazy googling led her to believe that 'chronic fatigue syndrome' fits the bill. Of course, one is immediately reminded of the dreadful Elaine Showalter. A shame she (Hustvedt) hadn't been more diligent in her research, her book sounds like it might have been interesting, but this juxtaposition of chronic fatigue syndrome with anorexia and self-mutilation and multiple personality disorder is simply alarming.

More here.

It also made me think of the novel The Story of Marie and Blanche by Per Olov Enquist, about which I wrote a few lines a few years ago. Am sure certain medics (and a certain academic) would still love to get out the ovarian compressors for women with ME. Maybe the NICE guidelines can add the compressors to CBT and GET?

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.