Colm Toibin & Hanif Kureishi & Bach

This is just perfect from Colm Tóibín, a five minute film on writing generally, and specifically on fictionalising family trauma. I agree with him about having to write the loss: using fiction to fix it and 'get it back'. A kind of rearranging, putting things back in place. I strongly feel my own writing of fiction is a response to catastrophe. I also love his comment about being able to go back to a piece of writing ten years later (what I'm currently doing, my progress is a just faster than glacial but I'm happy with the words I'm getting down). And I've been listening to Hanif Kureishi snippets on Radio 3's 'Essential Classics' - he always has gems. He says that in a world of 'lies and silence', we need art and music and novels - especially novels - to tell us the truth (1 hr and 45 mins in). I've fallen in love with this Bach piece - Prelude in B minor - from the same program (1 hr and 38 mins in). And writing this I have realised I have something in common with both these writers: like Colm Tóibín I lost my father at a young age (though I was younger), and like Hanif Kureishi I have a Pakistani father. I don't think, though, I have anything in common with Bach.

Radio 3: Childhood, memory, autobiographical narrative & fiction

I have been for some time now been attempting a novella which involves a fierce scraping of my memories in order to fictionalise events in the life of my Pakistani doctor father. Apart from the usual writing/energy challenges, it feels like quite a brutal mining of myself, and for reasons beyond me the narrative is emerging as third person omniscient. A writer friend suggested that the technical challenges of this point of view mirror the emotional challenges. I like that theory.

I am, therefore, fascinated more than ever by childhood, memory and  narrative.

Some interesting radio programmes from Radio 3's 'Free Thinking' series:

Autobiographical writing and Contemporary Fiction', a 15 minute essay slot which explores the complex intertwining of autobiography and fiction, the blurring of selves: 'These gaps between the different versions of the self leave spaces for fictional invention'.

References are made to Lydia Davis, Paul Auster and Siri Hustvedt.

I also liked the sentence: 'Memories are revised every time we remember'.

And here on childhood and memory, a longer 45 minute programme: 'Who's Got Hold of Children's Imaginations', writer Patrick Ness suggests that writing is 'the novelist's way to pin down the world and . . .  contain anxiety'. (8.30 mins)

Mona Siddiqui on Desert Island Discs

Very listenable, academic Mona Siddiqui on Desert Island Discs yesterday. I love that her luxury item would be tea. And I had not heard of Jagjit Singh.

Pregnancy & autoimmune illness

Interesting programme from Radio Scotland on the seemingly miraculous remission of autoimmune illness sometimes experienced by pregnant women (some, on the other hand, get worse). Presented by journalist Elizabeth Quigley who herself has MS and felt better during pregnancy. She asks scientists what they are doing to replicate pregnancy hormones in a therapeutic context. I know that some women with ME too feel better during pregnancy, but crash afterwards. Fascinating stuff.

And, of course, today is the day of the fabulous Invest in ME International Conference 2012. Wish I were there! Would be a joy to hear a gathering of such enlightened medics speak.

And very excited about this young lady's news in the upcoming weeks.

The Opposite of Nonsense

BBC Radio Norfolk: fantastic stuff from Dr Ian Gibson on ME: 'the medical brotherhood were pretty negative'.

The medical brotherhood is a lovely expression to describe Wessely and his cronies (though Dr Gibson gallantly does not mention Wessely by name).

'Let's do some proper research', says Dr Ian Gibson. 'Research is the way forward'.

Honey to my ears in the wake of the nonsense on Channel Four's 'Food Hospital' on Tuesday night. A young woman with 'chronic fatigue syndrome' had her life turned round by eating regularly. Yes, eating regularly improved her symptoms after thirteen years! I wish no offense to the young woman featured but I find it hard to believe that she has ME (and also that she had not looked at her diet in thirteen years of illness). The usual conflation of ME and 'chronic fatigue'. At the end, Lucy Jones, dietician, congratulates this young woman for 'improving her perceived symptoms of chronic fatigue'. Perceived? Bla bla bla.

Just looking at the Food Hospital's 'guide' to "'chronic fatigue syndrome'  - also known as ME", you can see how poorly the illness ME has been researched - maybe an unpaid intern wrote the guide on her lunchbreak? The usual well-trodden, lazy media mantra, which appears to be 'conflation, conflation, conflation!', rather than 'education, education, education!'.

And an absolute star, Dr Montoya of Stanford, honest and charming in his discussion of what researching ME entails. This event occured after the Mill Valley screening of 'Voices from  the Shadows'.

*This is an update: I also want to highlight these articles by San Francisco journalist David Tuller. Particularly, this one: Chronic fatigue syndrome and the CDC, a  long, tangled tale (this is a very long article, but worth persevering).

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.

Ignorance about ME is unacceptable when you are editor of The Lancet

I was updating my sis-in-law on PACE at the weekend and she said: 'Why are they doing this, what's in it for them?' I replied: 'I think they are in so deep with their lies, it is just easier to keep going than stop and say, Look we have been wrong all along, we are sorry.' My sis-in-law is German and she often refers to my 'pudding legs', meaning 'jelly legs', it always makes me smile.

Yesterday, I listened to Richard Horton, the editor of The Lancet, defend the PACE trial on an Australian radio programme. Horton described detractors of PACE as 'a fairly small, but highly organised and very damaging group of individuals who have ... I would say... actually hijacked this agenda, and distorted the debate ... so that it actually harms the overwhelming majority of patients'. (The irony, of course, is that he could be describing CBT/GET psychiatrists. And most people with ME are passionately against the bogus science of PACE, we are not a small group.) He went on to express his disdain for protestors for 'undermining the credibility and integrity' of the conductors of PACE.

And what about the PACE scientists undermining the credibility and integrity of patients with ME? (Got ME? Just get out and exercise, say scientists, The Independent, 18/2/11)

Meanwhile, Professor Sharpe had earlier said in defence of CBT and GET: '... you can actually make some changes in your illness, you don't just have to lie back and wait for time, it's worth a try ...'. It's that deadly little phrase that gives away the profile of these people: 'You don't just have to lie back and wait for time'. How dare he! Maybe if I had just lain back and waited for time, I might be more recovered than I am today, twenty-eight years after getting sick. I know from experience that increasing exertion/exercise is harmful, I know pushing yourself beyond limits results in catastrophic relapse. (But I have neurological ME, not idiopathic chronic fatigue, so PACE is meaningless for me, contrary to the belief of its architects.)

What is disturbing is that if you had listened to this interview knowing nothing about ME, Michael and Richard could have come across as reasonable, rational medics - though Richard does at times seem petulant - while the ME population and its advocates are portrayed pretty much as rabble-rousers. The lack of balance is quite alarming. (This is reflected in the comments on the show's website. Why was there no patient representative on the programme?)

Invest in ME have now invited Richard Horton to the 6th Invest in ME International Conference, suggesting to him that such ignorance about ME for someone in his position is simply not an option. And Professor Malcolm Hooper has just published his official complaint to The Lancet online, which Richard referred to as a '43-page diatribe' during the Australian interview. I also see that The Lancet has just rejected the ME Association's letter of complaint about PACE.

And I thought an editor's job was to edit not censor!

***I would like to add that I just saw that Richard Horton had in March 1997 written an article for The Observer's Life Magazine, entitled Why Doctors are Failing ME Sufferers' (scroll down to Alison Hunter Memorial Foundation link to see the full reference):

Horton acknowledged that "today, physicians do not take kindly to being challenged. They feel defensive and insecure. They have become accustomed to unqualified respect and genuflection. Nowhere is this trait more obvious than in the treacherous swamp of confusion that is myalgic encephalomyelitis (ME)". Outlining the objections of the Royal College's Committee to the term ME as an unsatifactory label, Horton noted "they used this semantic quarrel to establish a cardboard case against the idea that chronic fatigue syndrome is an organic brain disease."

What on earth, we may very well ask ourselves, has happened to Richard Horton's critical faculties in the intervening fourteen years?

Full transcript of radio interview here via ME Assoc.

Imagine

I was speaking on the phone to a friend with ME yesterday and we wondered what it would be like to have this illness without having to deal with the constant assault of ignorance. Imagine just having an illness, without the stress of feeling you are on trial constantly. (Imagine what our poor adrenal glands are dealing with, years and years and years of having to defend ourselves.) Most of the time you try and switch off, rise above it, get on with things, but then one morning you wake up to broadsheet headlines telling you that 'ME can be cured by exercise' - clever scientists say so! This unleashes such feelings of injustice and rage, you can't ignore it. You have to fight it. There is too much at stake. Then a few weeks later, as you are just calming down, back on an even keel, you happen to catch the end of a radio programme, a programme you wouldn't usually listen to, you are not usually awake. You are once again assaulted - by a tiny detail that may have gone unnoticed by many listeners, but not by you. You hear an actress whom you have admired in The Thick of It and Getting On, Joanna Scanlan, referring to her collapse from nervous exhaustion which led to a year's illness in the nineties. She describes how she had to give up her job as a senior lecturer and go back and live with her parents. She describes (51:30 mins in) how she had become disconnected from her passion for acting and how listening to Nirvana's 'Smells Like Teen Spirit' really helped her 'get back in touch with this creative path'. But in the middle of the conversation she slips in something deadly: Eventually the doctor diagnosed my illness to be what is sometimes called ME, probably in the old days used to be called a nervous breakdown... So once again the myth that ME is a mental illness is being perpetuated by a long, slow drip. I'm sure this actress has no idea of the blow she has just delivered, after all her doctor told her she had ME. It's great she recovered from her own particular exhaustion and found Kurt so rousing. Still, I wouldn't be surprised if the next headline is 'ME cured by listening to Nirvana'. It never fucking stops. And that is why we are so angry.

Miranda & Voltaire

I don't watch I'm a Celebrity, Get Me Out of Here. I can't watch the spiders, that big one that they have between shots (the camera zooms in and I freeze). And I find it undignified eating insects unless you are actually starving. I happened to glimpse the quite awful not really a doctor Gillian McKeith, in the opening episode. I believe she has been pretending to faint. I do watch Miranda, though always forget it's on. I like the all too knowing nods and winks to seventies' comedy. And she is funny. Also enjoyed, on Monday, The Essay, Radio 3, on Voltaire. I listened in the dark with my eyes shut and a cup of Earl Grey (which I stopped drinking for years, it gave me a headache, but I recently restarted and remember how much I love it). I quite often sit in the dark and silence with a cup of green or black tea, just to completely rest my senses. I never take milk (in tea or coffee) and I hate herbal tea. This episode of The Essay had extracts from Candide, one of my favourite books. I still have my well-thumbed copy from uni, 1982. It is pink with a yellow trim, faded now.

'A black man in Plymouth'

I've never really 'got' Twitter, am an infrequent user, but last night during the election debate, I saw how fast and furiously bullets of opinion/information can be shot out. It was dazzling, if a little bizarre. And exhausting, a cockpit of letters and symbols to be negotiated.

I was a bit underwhelmed by the debate, none of them are great orators, but Nick Clegg came out best. Cameron was ribbed mercilessly on Twitter for his black man in Plymouth line. I cringed when he said it, and couldn't imagine either of the others having done so. I find myself leaning more and more towards the Lib Dems, the fear, of course, that if you vote for them the Tories get in, and that is just too bleak to contemplate. But maybe we just need to take a leap of faith. And also, it was a Lib Dem MP - John Barrett - who read The State of Me (bought his own copy!) and blogged about it last May (3rd), showed he understood the issues surrounding ME. I sent copies in 2008 to both the Scottish Parliament and my own MP, c/o The House of Commons, but no reply.

I also 'panicked' when I saw our prospective leader(s) were standing up for the debate: How can people stand for an hour and half and speak intelligently? You have to sit down, I thought (my energy radar worrying vicariously). I also found the setting a bit too seventies' game show. We just needed Les Dawson and we would have had Blankety Blank. Alastair Stewart looked knackered and old (I don't watch ITV and probably haven't seen him since the 90s, he looked like he was still recovering from Diana's death). I turned off the televison debate after an hour and listened to the rest on radio.

To BBC or not to BBC

'Spending money on American imports like Mad Men will be cut.' If they think they are axeing Mad Men as well as 6 Music, they can forget my licence fee. But then this is the man who refused to broadcast DEC appeal for Gaza. You can join Save 6 here.

Coincidence

I had a vile headache yesterday, I was in and out of bed all day. I listened to Night Waves, they discussed a modern version of Molière's Le Misanthrope which is on in London just now, I would love to see it. After the radio programme, I had Tartuffe in my head - though I studied L'Avare and Le Malade Imaginaire at uni, but for some reason Molière always makes me think of Tartuffe. Today, the postman knocked with some cards, and a package containing a wee jar of tartufi, sent by a friend in Rome. I love these tiny coincidences.

Dear God, Please Save Us From This Horror ...

As I have stated once or twice, I am an atheist, but I am asking you, dear God, to save us from the horror that was today Amanda Platell guesting on Jeremy Vine's Radio 2 show to talk about the first time you saw your father cry. I felt quite unmoved as Amanda, saccharine and quavery-voiced, shared her story, I honestly don't even know what the story was 'cos my brain was dying as I listened. And why anyone would want to share such a personal moment with the rest of Britain and Amanda is beyond me, but they phoned in in their droves. What had no doubt been a very moving moment for the caller became cloying and mawkish - almost farcical - as Amanda overflowed with sympathy and soothing. One caller, whose father may have been in the army, I don't know, I wasn't listening, my brain was dying, described her first memory of her father crying, choking back her own tears. Amanda paused and added in silky lilts: And, of course, there is no room for tears on the battlefield.

Too Much Babbling

I can hardly listen to the radio because it's all just babbling and makes me crazy. A few days ago I turned on to hear a woman who'd had ME for four years saying she is completely cured after having lightning therapy. She has thrown away her wheelchair and cancelled her disability benefit. I am happy for her that she has recovered more or less instantly from whatever was wrong with her, but I just can't listen to this bullshit . . . you wouldn't attempt to cure MS or lupis with life coaching and NLP, so please stop peddling all this nonsense and giving false hope to people who are horribly ill! The lightning therapists concede that ME is physical, claiming we are stuck in an adrenaline loop of 'fight or flight' and that this is what is making us ill - and by retraining the way we think, we can stop the loop, and lo and behold, mow the lawn and climb a mountain. I agree that our adrenaline production is fucked (I am easily alarmed, constantly feel on red alert), and that conventional medicine still has nothing to offer, and that complimentary therapies can sometimes help alleviate symptoms (intravenous vitamin C helped me through a horrible spell), but talking about negative thought patterns to some well-meaning therapist is NOT going to cure you of ME. Over twenty years I've had a plasma exhange with steroid therapy (made me more ill than ever), anti-viral drugs, ACTH injections (they helped a bit), and God knows how many complimentary treatments, but the reality is, nothing yet shifts this illness, you can have remissions, your symptoms can vary wildly day to day, week to week, but in my experience, the illness dictates, always. They have uncovered an ME gene at Glasgow University, that sounds promising, that is honest research that could lead to a cure, it is worth media attention. But lightning therapy, fuck that for a game of soldiers, as we say in Scotland when something displeases us. (But having said all this, I do understand that people will try anything that might help them.)

© 2006 NMJ