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.

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.

Doctors & patients & writers ...

I attended a talk mid-week on doctors who also write, a hop and a skip from me. It was a long talk, almost two hours, and I found it so hard to concentrate towards end but it was very enjoyable hearing these three medics talk about their dual lives. You do not come across writing doctors very often and I was especially interested in their concerns about self-censorship when they also have such important social roles as doctors. During the Q&A someone referenced Virginia Woolf's essay 'On Being Ill'  - she wonders why there is so little fiction written on illness - and it seemed a good point to mention The State of Me. I said I was a patient turned writer and that self-censorship can be an issue for all writers. These doctors were all charming speakers - two are GPs, one is a child psychiatrist - and I wonder what their thoughts were when I said I have ME and have written a novel about it, that I was passionate about education through fiction. I did not mention my name or the book's title, but I wish now I had taken copies to give them.

After last week's travesty of science - and Prof Malcolm Hooper has written, as always, an eloquent response - I really have  no idea how we fix the distorted narrative. I think we have to look to the rest of the world, international biomedical research.

I have remembered a BMJ podcast from 2010 where Simon talked about ME. (This was during XMRV hype -  I always remained neutral, if XMRV was the answer, great, if not, let's move on to next thing (and we know how that all turned out). However, I have personally known since 1983 that my illness is connected in some way to my immune response to the Coxsackie B4 virus. The often not very bright media now tries and twists it to make out that it's only since XMRV that patients/researchers have linked ME to a virus. And that no XMRV = no virus. Not so.)

Anyway, in this podcast, Simon speaks around 4.25 mins in about the broad/narrow definitions of the illness, which of course is the whole crux of the conflation and chaos, though he does not seem too concerned with the chaos. The patients Simon sees/researches apparently get better with CBT and graded exercise therapy (GET), whereas those of us with my illness get worse with exercise, and I will keep saying this to those who will not listen. It struck me also that he had spoken back then about the need for other researchers to get involved, and 24 mins in, sounding very relaxed, says: 'Other disciplines should get more involved because CFS is under-researched' ...'and you'd be surprised to learn is actually  a very enjoyable and  very rewarding area of research.'

Very enjoyable and very rewarding.

No mention of the 'acute hostility and bravery' that last week earned him the John Maddox prize. The acute hostility - and I am not questioning that threats were made, I am sure they were, and no one would want to condone this - was, unnecessarily, ramped up to unbearable degrees  last year by a hysterical media, which  resulted in an entire patient population being (further) demonised. We can only wish  that Simon had perhaps practised some self-censorship in his dealings with the media.

Of course, if you actually *know* about the politics surrounding this illness  the Maddox award video seems like a spoof, like something from Drop the Dead Donkey - a newsroom satire from 90s -  an observation made by my mother. They're all daft, she said, shaking her head when I showed her. Bloody bastards, said my stepdad - who now has dementia - and later came into the living room with a pan on his head  - he loves joking with hats - but he has always been a source of great support to us throughout my illness, especially at the beginning, the utter, utter hell.

Am highlighting again this young scientist's blog where an informative discussion went on after the Maddox prize - it makes a change to have a thread where PWME are not drowned out by obnoxious, hostile, uninformed voices. *And then there is another young medic who exuberantly denounced PWME for 'stigmatising mental illness' and told us we have to grow up. He has obviously been fed the Wessely school narrative, and nothing else, but I  hoped he would be willing to educate himself and learn there is another narrative to explore.

After my novel came out in 2008 I breathed a huge sigh of relief, I honestly thought I'd never have to defend my corner again, I felt my job was done. But when we are continually assaulted  - and it *does* feel like assault - by twisted narratives and half-truths, we have to speak up, though it is truly and godawfully  sapping.

We have to speak up. These are our lives.

*I see this page has been removed, perhaps the young medic at www.thetwentyfirstfloor.com had a rethink about being so rude about an illness he clearly knows little about...

The poetry of dementia (1)

My Danish stepdad is (gently) forgetting his English as his dementia progresses and  last night he, quite fabulously, referred to fish fingers as 'fish pins'.  Lamp posts are now 'light poles' and lifeguards are 'sea rangers'. My mum has been ill and  as we waited for her having out-patient tests yesterday, he said: 'She is no ordinary, everyday human being of any kind, she is my wife.' Tautological, but wonderful (and heartbreaking). Later, my mum and I were chatting about how she is never  ill - the only times she recalls are malaria when she took us to Pakistan in seventies; having to have a salmon bone removed by general anaesthetic during a trip to Finland in nineties, and, more recently, a slipped disc. My stepdad turned to us and said: What's that about Ed Miliband? 

'Salmon bone in Finland' heard as Ed Miliband: the poetry of dementia.

Giving away CDs that you don't listen to any more

I gave a lot of CDs to charity last week, they were gathering dust, I never listen to them, but I got a pang, thinking of the different loves and friends that once had all this music in the background. Still can't listen to Portishead without feeling hollow (not that I feel hollow now, just the memory of hollow is in the very vinyl - or whatever CDs are made of - of Dummy). Of course, I've hung on to Leonard Cohen and Frank Zappa and Aztec Camera and Bjork and Pulp and Violent Femmes and Mazzy Star etc, etc, etc (REM was tricky, they're just so whiny, I think I donated a couple but kept one).  I also had a vivid memory of one of my brothers' friends, in late 80s, demonstrating the indestructibility of a Morrissey CD by pouring beer on it. He was the first of any of us to own a CD. It was this song.

And discovered a gem I'd forgotten I had, Preisner: Requiem for my friend. This piece I particularly love.

And absolutely shocked (ashamed) to find I had Dido's Here with Me -   dear Jesus, what was I thinking?

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.

Daisy Miller & ME Awareness Week

What has Daisy Miller by Henry James got to do with ME Awareness Week? I recently came across the novella on my bookshelves and a sheet of paper dropped out: lecture notes from spring term, 1982 - my last term at uni as a well person. I recognise myself in these notes and it stabs me that when I wrote them I was essentially a different person. The notes brought back a memory of a letter from my English tutor congratulating me on my 'excellent' finals' paper - I think I'd answered on Daniel Defoe's Roxana. Of course, I was never able to finish my joint Honours French-English degree as I became ill that autumn, my year abroad in France totally disrupted. I had to come home - though (unlike my character Helen Fleet) I returned to France twice, desperately ignoring how ill I felt - and spent most of that year having medical tests. Foolishly, I dragged myself back to uni in autumn 1983 - all I knew was that I'd had Coxsackie B4 virus. The symptoms persisted, I remember clearly the overwhelming nausea and pain in my spine. I managed to get an Ordinary Arts degree, a degree all the same, but a lesser degree. I only needed one subject - a couple of classes a week - luckily I'd earned enough credits in my first two years. I was ill at my graduation and I look hellish in the official photo. I wouldn't let my mother display it.

My friends had not yet graduated, they were still studying for their Honours degrees. I was experiencing that first walling off, of not being part of the life I should be leading. That summer I got worse - my symptoms had literally multiplied - and was bedridden. I was diagnosed with ME by a consultant neurologist and in winter I had a plasma exchange, the first of many experimental treatments. The toxic awfulness of severe ME is almost impossible to describe:

We were all guilty of clichés.

Have to get worse before you get better.

Tomorrow’s another day.

Light at the end of the tunnel was the favourite, but my symptoms continued to synchronise themselves in a vicious kaleidoscopic pattern and all I could see was black.

(Extract from The State of Me)

I remember hell and enforced resting and hoping then pushing myself (again, far too soon) back to study part-time for an MSc - never feeling well, always feeling I was overdoing it. I've no idea how I got that degree, I took the 'easiest' modules, I took only afternoon classes so I could sleep late in the mornings. I sat in lectures feeling like I had a brick weighing my head down. I forced myself to go to classes even when my legs were like spaghetti. My academic self was lost, I couldn't retain anything, I cried in my GP's surgery because I couldn't remember. Some days were better than others. Then - was I fucking crazy? - I moved to London to look for part-time work - most of my friends had moved to London and I thought there would be more choice of interesting jobs with part-time hours. I was thinking maybe eight to ten hours a week. I remember loving listening to GLR. I started volunteering at a centre for people with learning difficulties. One of the young men couldn't pronounce my name and called me semen, I don't think he knew what he was saying.

Four months later my whole body literally went numb in Oxford Street one day - a relapse so catastrophic that my mother had to return from abroad to care for me. There had been signs but I ignored them. Not everyone in my family was as supportive as they should have been and I haven't spoken to that person since (I think all of us have experienced someone close letting us down).

These days, I describe myself as moderate with severe dips (and I know I come across as much more well than I am). I must live my life by strict pacing, I have no choice. It's intuitive, I don't even think about it. I can feel dramatically ill out of the blue, no warning. I'm *never* symptom-free and activity always makes me worse. Any activity. Brushing my teeth still gives me burning in my arms. Writing my novel was exceptionally difficult, I don't know how I did it. Writing keeps me sane, it is my response to what has happened.

And even with pacing, the energy I do have would make a healthy person weep with disbelief and despair. I'm often housebound for at least half the week, just from the daily tasks of living. And yet I am lucky compared to some. But I can't help wonder how I would be now if I hadn't forced myself to 'recover' early on. I suspect considerably better. The problem was I didn't know what I was dealing with, I didn't know the nature of ME until I had lived it. It probably took me a decade to understand. And how could I ever have known that almost thirty years after getting ill, the circus of PACE would be the biggest show in town?

Thankfully, as a powerful antidote to this circus we have Invest in ME 6th International conference taking place on 20 May. I have now put Daisy Miller next to The State of Me. I sense that is where it belongs for now. I would like to re-read it. Less than ninety pages long, that's my kind of book!