Syrian National Orchestra (and my tiny memory of Damascus)

I often think that literature and music and art are what keep us going. This is reflected in the moving story of the Syrian National Orchestra for Arab Music - forced to fragment as many of the musicians have now fled Syria - which reunited recently for a short tour in Europe.  One of the violinists, now a refugee in Germany, finds comfort in playing, it helps her express 'all this homelessness and loss and blood'. She teaches music to refugee children. Another musician, a qanun player, a refugee in Sweden with his wife and young children, says he doesn't find solace in music when he is sad, rather he struggles to play, as he feels 'destroyed inside'. The majority of the orchestra still live in Damascus. Whenever I hear the word Damascus, I think of us stopping off on our way to Karachi (my one and only trip there) in 1974, my Scottish mother taking me and my brothers to visit a year after my Pakistani father had died. There was a man at the airport in Damascus drinking tea in the cafe - a huge Formica circle-shaped bar - and I was scared as I was sure he was a ghost. I was only ten and had not met many dark-skinned men so it was not odd that I thought this man with sad eyes was my father.

'Five Years'

I cried last night watching this BBC Two documentary 'Five Years', which focuses on five key years of David Bowie's work. I loved most of his seventies' stuff, the later music less so. I also loved the clips - 1 hour 9 minutes into the programme - of him playing John Merrick in The Elephant Man, with exquisite vulnerability and beautiful ugliness.

I had not followed Bowie's music for a long time but there was a time when he was all I listened to, in my teens and twenties (alongside Leonard Cohen and Frank Zappa). The outpouring of sadness on social media is, of course, not just the passing of an extraordinary and unique artist - aged only 69 - but the mourning of our own Bowie-wrapped memories (and that wrapping has beautiful, silver bows).

But now a shift has taken place and our memories are, in a way, suddenly hollow. 

I had all of his albums, my cousin and I exchanged 'Heroes' and 'Space Oddity' as Christmas gifts one year, I don't remember who gave what, but he was so physically beautiful on both covers. I remember how the 'Diamond Dogs' cover folded out. It was sumptuous. And how I could never get into  'Lodger', I'd play it over and over, hoping to like it more, but having to admit to myself I didn't...

I remember seeing the German film Christiane F. at a Glasgow cinema (no longer there), mesmerised by the Bowie soundtrack. The boyfriend I went with died many years ago from a brain haemorrhage,  I don't know the circumstances, we had lost touch, but I remember what I wore to the cinema that night, a long red cotton Indian print dress.

(I also remember the pink trousers I wore, dancing to 'John I'm Only Dancing' in the QM Union.)

I don't have a favourite track, it's almost impossible to choose one, but the song that always pierces me is 'Five Years' and it is in my novel. When I was told by a consultant neurologist in 1984 - almost eighteen months after becoming ill with Coxsackie virus - that I had myalgic encephalomyelitis (ME) and it could last for five years, I was horrified and truly didn't know how I could bear feeling so  ill for another five years. I was twenty years old. My character Helen Fleet says:

On the way home in the car, I hoped we’d crash and that I’d be killed instantly and Rita would walk away without a scratch. I kept thinking of the David Bowie song ‘Five Years’: . . . five years left to cry in . . . steady drums, louder and louder and louder . . . five years, stuck on my eyes, high violiny bit. (The State of Me, Chapter Five)

It's hard, I think,  to describe Bowie without resorting to dreadful clichés - all I can say is I have a lump in my throat and even writing this I have tears. Yesterday, I realised how much of a part he had played in my growing up. When I hear the tinkling at the beginning of 'Ashes to Ashes', I am back in my childhood living room in 1980, aged sixteen, not yet ill, watching Top of the Pops. At New Year, I tweeted this, it feels a bit dislocating now. 

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.

Lou Reed, Doris Lessing and Lionel Shriver

I felt sad about Lou Reed, 71 is not old (especially as I am approaching 50). You feel sad not only for the (at times, grumpy) man, but for the person you were when you listened to his music. Transformer was an album I listened to countless times with my first boyfriend in early 80s. We were together for five years. I can still see us taking the album out of the sleeve to put it on the record player. He lived in a 'rough' area and his dad was a communist. He'd shout upstairs, It's time Nasim was going over the road, and  the boyfriend would  dutifully walk me home. All of them are dead now, the druggy boyfriend, the father and Lou Reed. In that order.

I've just started Doris Lessing's The Memoirs of a Survivor, it's been yellowing on my bookshelves, I've no idea when I got it. I'm only 35 pages in but love its strangeness and clarity, and Hugo the yellow cat/dog. Am smiling that her character smokes one cigarette every day, one of the characters I'm writing just now does too - her luxury in one dreadful day after another. These coincidences always happen, and are always going to happen, but just so you know I'm not nicking from Doris. (I met a woman once who smoked one cigarette every New Year's Eve.)

I'm having an eye saga again, no uveitis, thankfully, and touching all the wood in the world, every single tree, but the pressures have risen again, no idea why as there is no inflammation, and I stopped using steroid drops two years ago, but the pressure-lowering drops do not agree with me, they cause eyelid swelling - most eye drops do in my case, and ME can make you especially sensitive to drugs - which is just not on. And my poor eyes are dry as stones. When you have an opthalmology appointment now, they phone you a week before and you press this key and that  key to confirm. I'm always scared I make a mistake, but I love our NHS and would happily press keys every day to confirm.

And speaking of eyes, am very tempted to say to Lionel Shriver, Dry your eyes, Lionel. Also tired of her and Jonathan Franzen badmouthing social media, they don't understand that many writers use it intelligently and creatively. Yes, Lionel, dry your eyes.

'While my brain is not shaming me.'

Last week, I took my Danish stepdad to an SNO concert at the UsherHall for his 84th birthday. A hop and a skip from me. He loves classical music, knows much more than me, though has forgotten most of what he knows. It's well-documented that music is beneficial for people with dementia, it seems to unlock memories (I've started visualising dementia as having a huge padlock around your head). Whenever I am with him now I automatically take his hand or link in to his arm. He always tells me that he can't walk fast these days - he has completely forgotten that I can't either, and his pace is perfect for me. 

The conductor was Danish, Thomas Søndergård. My stepdad told me how to pronounce his name and when he came onto the stage he said,  not quietly, There's Klaus.  It’s not Klaus, it's Thomas, I whispered back. I had the programme on my lap and he must have taken it about ten times during the concert and read it and handed it back to me. He also had his walking stick between his legs, propping up his hands periodically. I kept an eye on the stick, afraid it would fall and clatter. I felt like I was doing my own conducting, making sure things would stay calm. I kept looking at his knees, he was wearing his new brown cords, so dapper! 

If I sit for more than twenty minutes I get vicious pins and needles, so I kept moving my feet, subtly (I hate fidgeters myself and want to stab them). I held my stepdad’s hand off and on and kept looking at his face to see his responses to the orchestra. At times, he seemed transported by the music, at times, he was not focused at all, looking around the hall. He kissed the side of my head a couple of times.  During the Mendelssohn, he turned to me and said, not quietly, Good pianist. I gently said Ssh, and he said, twice, They can’t hear us. I suppose he had a point. And the pianist was wonderful. I was fascinated by the whole orchestra, their arms, all those arms,  violins and cellos, all that lactic acid. I can’t see this kind of thing without marvelling at the ability to sustain movement without utter exhaustion. 

At the interval I’d pre-ordered a wee Glenmorangie for my stepdad, and the bar, standing only, had kindly put two seats aside for us. My stepdad was happy, but asked if he could have ice in his whisky. He has never in his life taken ice. On the way home, I asked him if he had enjoyed himself and he said, Up to a point. He enjoyed the Mendelssohn but found the Brahms finale 'a bit too fierce'. We both loved the second movement. Later, he said to me, While my brain is not shaming me, can I thank you for the lovely time you gave me? He is still aware that he has memory problems and will sometimes knock his head with his fist in frustration. He had already thanked me several times and will do so again the next time I see him.  I loved my evening out with him, I had a gorgeous time.

Watching Glastonbury made me feel old...

I watched snippets of Glastonbury, it made me feel old, though not as old as The Rolling Stones (have never been a big fan but loved their wrinkled energy, Kenny Rogers too, he made me smile). I learned of new bands. I really liked: The xx, Stealing Sheep (gorgeous girls), Jake Bugg (gorgeous boy), Weekend Vampire and Laura Mvula. I thought back to the Loch Lomond Rock Festival, held in the old bear park -  we had a bear park and a bear escaped one year. I remember seeing The Buzzcocks, and I brought home a boy called Michael - in my memory, he slept in the bath (I was fifteen), but I can't  see my mother having allowed that.

A Norwegian writer, a Pakistani orchestra & a biomedical conference

Have recently discovered:

Karl Ove Knausgaard's novel/memoir A Man in Love (part two of a six-part series. I skipped part one, and the others are not yet translated). His writing is slow and self-obsessed, but there is something comforting about the pedantry and rhythm. I am wading through, it is worth it for the gems, and observations on the Swedish/Norwegian arts and writing scene. I first came across him in this review a while back, and a Norwegian friend has since filled me in on the stooshie he caused back home.

And the Lahore-based Sachal Studios Orchestra. The background to the musicians is here, a little heartbreaking. This is their version of REM's 'Everybody Hurts', and Dave Brubeck's 'Take Five'

And this wonderfully hypnotic Sufi music, which is used in the opening sequence of The Reluctant Fundamentalist.

Also, today is the annual International Invest in ME conference in London with researchers from all over the world. Is being live tweeted by  @DeBortgjemte.

A Norwegian novel & a knighthood

I love the time between Christmas and New Year. It feels like the whole world is resting. A Norwegian friend told me about this novella: The Faster I Walk, the Smaller I Am by Kjersti A. Skomsvold. The writer  has had ME, my understanding is she has more or less recovered, but I do not know the details of her illness, how long she was ill for. It is unusual to recover fully from classic ME, but Norway is ahead of the game, so maybe she rested adequately from the start, giving herself a better chance of recovery. I'm told she was in a nursing home for a year.

It's a quirky wee book, makes you smile out loud, though it does get a bit repetitive, with the confusion of remembered events and imagined events, and past and present blurring. Sometimes, it can feel a bit like a collection of quirky observations and memories without much meat, but it is short, and eminently readable, certainly worth reading for the drollness, and the absurd observations made by the main character, Mathea Martensen, an old woman approaching death.

It received a first novel prize in Norway.

Writers need to be observers and being ill and housebound/bedridden is perfect for observing. I could sense that some of her observations had come from her being ill. You become  a still point while life goes on around you in a blur. Skomsvold has also written a fictionalised memoir (at least I think it is fictionalised) about her illness, Monstermenneske, which translates as Monster Human, she feels she is no longer human but disappearing into something else (so my Norwegian friend tells me, she is reading it just now). I look forward to reading the English translation when it is out. My friend knows the translator a little. This same friend brought over gravadlax last week,  it was divine.

I read a few lovely things about The State of Me on Twitter over Christmas, and I especially liked this blog review: 'One standout books from the first half of the year was 'The State Of Me' by Nasim Marie Jafry'. 

... If you fancy some tales of knights in shining armour, you may like to know that Professor Simon Wessely has just been knighted for 'services to Military Healthcare and to Psychological Medicine'.

The Honours list is of course good old boys patting other good old boys on the back, 'no more than postcard pomp' as Tanya Gold says in the Guardian.

Owen Jones also has wise words on the whole pantomime. Danny Boyle has sensibly refused his, as writers and artists tend to.

I'm not sure what those with Gulf War Syndrome make of this knighthood, though I can hazard a guess, and now that Simon is Sir Simon I'm sure we in the UK can look forward to further conflation of my illness - the neuroimmune illness ME - with the 'medically unexplained fatigue' that responds to Simon's favourite therapies of CBT and GET - therapies rejected by the Norwegian Health Directorate. And to hell with those with severe/ongoing ME whose lives continue to be blighted, to a greater or lesser extent.

We can only look forward to the results of international research - Norway, for example, where clinical trials of Rituximab are going on - and conferences like Invest in ME, which strive tirelessly to educate.

And we have the biobanks in Oslo and London, established this year.

I need something funny and this clip from Family Guy - 'that novel you've been working on' - always makes me smile.

And more lovely book suggestions, from Lesley in France, I always love learning of books I had not heard of, though I have so many on this year's still-to-be-read pile, God knows when I'll ever get round to any of them!

We could send letters

The title of this post is from one of my favourite Aztec Camera songs and it reminds me very much of when I first got ill, when ME punched into my life, and everything was so frightening and terrible. And on the subject of letters, I am at this moment bowled over by the wonderful Countess of Mar, a longtime advocate for people with my illness (she has been ill herself from organophosphate poisoning), who has just written a dazzling open letter to Simon Wessely. 

After the article in the Independent recently, in which the Countess of Mar and others suggested Simon did not deserve the Maddox medal, there was an  utterly predictable and nonsensical response from Esther Crawley and her friends, mainly psychiatrists and psychologists. Responses to her letter are at bottom of the Indy letters page, you need to scroll down.

I'd decided not to blog any of this because I'm so very bored and exhausted by the Wessely school - as I've said elsewhere Simon gets himself more coverage than the American presidential elections. 

But the letter  from the Countess of Mar  just had to be blogged.

And Professor Hooper has also responded to Esther and co.

And the Canadian National ME/FM Network has written an open letter in response to Simon's recent attack on the Canadian Guidelines (which Scotland favours).

Maybe, maybe, maybe, just maybe these 'bio-psycho-socialites' will now leave us the hell alone.

Just maybe.

*Simon's response to the Countess of Mar, and her reply to his reply. 

** The entire Mar-Wessely thread is now here.

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.

100 RPM - stories inspired by music

100 RPM, a gorgeously designed ebook anthology, is released today, the project of Caroline Smailes,  whose enthusiasm is irrepressible and inspiring.

All money raised goes to One in Four charity, which supports victims of sexual violence.

And an  introduction by Nik Kershaw!

Caroline has explained all on her blog.

There are a hundred stories and every story is one hundred words or less and has been inspired by music on You Tube. The playlist is here.

My own story was inspired by Scottish band Glasvegas' version of 'Silent Night'.

I hope you enjoy the book and pass on the word! I'm off to download my copy.

I'm finding I like microfiction more and more, the possibilities as a writer and the little energy required as a reader. Perfect!

* Review of my story here.

** And thanks to Glasvegas for RTing the anthology.

Gorgeous

At the weekend, my nephews' village primary school won an inter-school football tournament, an unexpected victory.  I heard that one wee boy who didn't even play - too young - took his shirt off and did a lap of honour. Gorgeous. The team is  being taken to an Italian restaurant for lunch this week, what a fabulous treat (I can't recall anything remotely as sumptuous at primary school). But this is a  generation of nephews who ask for Jamie's summer salad in their packed lunches.

My older nephew, still glowing, actually glowing, from the gold cup victory, can now play 'Mull of Kintyre' on the trumpet. He wanted to skype and play to my mother, not realising she is too ill just now. I can't wait for my session.

And: 'The clouds are punctuating the ceiling': my stepdad's explanation of the crazy May sun/shower cycle we're having.

*for those not in UK, this is Jamie.

Instead...

Maybe instead of giving my old CDs away to noble causes I should have smashed them and made beautiful animal sculptures. These are simply gorgeous by an Australian artist, Sean E Avery.

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?

Stornoway Gazette previews BBC Alba documentary

Preview of BBC Alba documentary  from the Stornoway Gazette. I'm told I am mainly in Part One, but make a brief appearance in Part Two (to comment on the need for biomedical research). I was filmed for probably two hours, so am curious what will end up being used. Professor Behan, the consultant neurologist who diagnosed me in 1983/4 appears in the second part. Coincidentally, BBC Alba filmed him in Glasgow in the morning before then coming to film me in Edinburgh in the afternoon (I had said mornings are out for me!). I remember thinking how bizarre that all these years after he treated me, we end up being filmed on the same day for a documentary. I have taken this description of his work from MEA: 

Professor Behan has now retired from his consultant and research post at the Institute of Neurological Sciences (Southern General Hospital) University of Glasgow but is still involved in ME/CFS research. Along with colleagues, including John Gow and Abhijit Chaudhuri, he was responsible for much of the early research that helped to establish a biomedical/neurological model of causation. He also worked very closely with Dr Melvin Ramsay. His wife, Professor Mina Behan, who sadly died a few years ago, was also heavily involved in ME research - muscle and mitochondrial abnormalities in particular.

I still remember being horrifed when he told me my illness could last for five years. How can I bear this, I thought, how can I bear it? It was inconceivable to me - unfathomable - that I could be so ill and no one could to anything to help me. But Professor Behan was my absolute saviour, to this day I can't thank him enough for telling me what was actually wrong, 1 had been ill for over a year by the time I got my diagnosis.

And that is why The State of Me is in three parts, each of which spans five years. And that is why I still can't listen to 'Five Years' (David Bowie) - one of my favourite songs - without a pang.

Leonard Cohen: I'm Your Man, a film by Lian Lunson

I came across this 2005 Leonard Cohen tribute  film  via Open Culture.

What a gem, an absolute gem.

The filmmaker is here.

Wonderful clips of Leonard, and my favourite covers are by Rufus and Martha Wainwright. (I also love Antony and the Johnsons' version of The Guests, though not in the film.) 

I didn't know that Rufus and Lorca Cohen - Leonard's daughter - had had a baby girl earlier this year. Can you imagine the gorgeous lullabies she will hear?

And there is this from 1965 - it's like watching a French film, it makes you want to smoke and wear polo necks (even when you are anti-smoking, as I am, I love polo necks though).

All

All I've seen of Glastonbury is two Glasvegas songs; one Coldplay ('Yellow'); a few seconds of U2 (can't bear them); and tonight I happened to switch on and Tricky was on stage with Beyonce for a fragment of time, it was bizarre, he was like a wee scared boy miming, you couldn't actually hear him. I wanted more of him. I vaguely recall, some years ago, seeing him in a documentary where he was wearing a dress - or said he liked wearing dresses, my head is not clear - and I loved him, there was a poignancy. I must dig out Maxinquaye.

'One Of Us Cannot Be Wrong'

'One Of Us Cannot Be Wrong' is, of course, one of Leonard Cohen's (many) fabulous songs. I've had it in my head since The Lancet published its editorial the other day on the hugely negative patient response to the PACE trial:

...But one cannot help but wonder whether the sheer anger and coordination of the response to this trial has been born not only from the frustration many feel about a disabling condition, but also from an active campaign to discredit the research...

Oh for Jesus' sake, patronise and demonise us some more, why don't you?!

The Lancet received forty-four letters of complaint and published eight. It did not publish any from patient charities. Here once again are the ones rejected.

Dr Speedy, as always, has a wonderful take on things.

So it goes on, a handful of (biopsychosocial) researchers v. patients worldwide disagreeing passionately on the safety and efficacy of graded exercise and CBT for a neuroimmune illness that has torn up many of their lives.

As Leonard says: One Of Us Cannot Be Wrong.

***Cheney P, Orlando Workshop, International Congress of Bioenergetic Medicine 1999, audio tape #2 (“The most important thing about exercise is not to have them do aerobic exercise. If you have a defect in the mitochondrial function and you push the mitochondria by exercise, you kill the DNA”).

******If you are on FACEBOOK, please take a few minutes to vote for Whittemore Peterson Institute, it desperately needs funding. Nicky has clear instructions on her blog! Many, many thanks. The PACE trial wasted almost £5 million pounds on psychobabble, just think what biomedical gems that money could have unearthed.

**********Oh, it just gets better and better. I had wanted this to be a short post, I am so fucking exhausted with PACE and its fallout. Now we have them telling Professor Hooper that the trial was never about ME but about the much more nebulous 'chronic fatigue'.

Really, these PACE people should come up to Edinburgh and get a slot in the Fringe comedy circuit this August: the blackest medical comedy ever written and performed!

************** Countess of Mar wins award for outstanding services to PWME

A review from USA , & an Israeli novel

Thanks to Janis in USA for this interesting review of TSoM. I like her inclusion of other works that deal with illness. It really is lovely to still be getting reviews 30 months after book came out. I don't tend to write my worst days here, but I have been unable to do much today at all. I went outside for five minutes, it was freezing and the daffodils have been battered by the gales. I kept going back to bed, but I hate the feelings in my muscles, so I got up again. I went to the sofa and tried to read but my arms hurt holding the stupid book - no, not true, it's not a stupid book, it's a rather good novel called CrocAttack! by Israeli writer Assaf Gavron. Then I tried to 'meditate' - ie lie with eyes closed, but I can never empty my mind, NEVER - with some crappy New Age music - a CD I got in San Francisco in nineties - I feel like a parody when I listen to it, but it is undeniably relaxing all that cheesy tinkling of water.

From Glasgow to Saturn (19)

Delighted to have a wee story (Parched) - very wee, very short - in issue 19 - of From Glasgow To Saturn, Glasgow University's free online literary magazine - wonderfully named after Edwin Morgan's poetry collection (1973). I try not to think that it's thirty years since I went to uni, that would mean I am very, very, very old. I went when I was just sixteen, a couple of months from seventeen. My brothers were the same, we were all pretty much the youngest in our year(s) - at school and uni. We can go to school at four in Scotland. The other day I had hot chocolate from a vending machine and was transported right back to the student union, known as the QM, short for Queen Margaret Union (the other union, the GU, the 'men's union', didn't let women join til 1981). I still remember vividly sitting on the QM steps during Freshers' Week, an unseasonably warm October, in my clogs and skimpy Indian dress, I had a hippy thing going on back then though I hated folk music and listened mostly to David Bowie and Frank Zappa.

I am so glad I didn't know what was ahead, just sitting on those steps, carefree as hell. I got ill in my third year and unlike Helen Fleet I didn't come home from France once, I came home three times, I kept going back 'cos they couldn't find out what was wrong. I still remember trudging up the gangway onto a cross-Channel ferry, knowing that something was dreadfully and completely wrong. And I don't mean my perm - yes, I had a perm! My hair is already crazy hair - and yet I had a perm! Because my cousin had one, I wanted one too.