Sunday, 10 July 2016

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.

Monday, 23 May 2016

Introduction to James Baldwin

I have never read James Baldwin - there is no reason, so many books are (necessarily, due to time and energy) unread - but after seeing this twelve minute film by Sedat Pakay, From Another Place (1973), I was mesmerised, and bought Giovanni's Room. I did not know that Baldwin spent significant time in Istanbul. The film is exquisite, his voice seduced me and I had to have him.

Hillary Johnson, author of Osler's Web, has also recommended that I read Negroland, a memoir by Margo Jefferson, an American journalist and critic.

Sunday, 1 May 2016

Wellcome Book Prize 2016 - ignorance rewarding ignorance

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

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

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

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

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

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

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

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

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

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

Monday, 28 March 2016

Tiny joys

The world seems abominable at the moment, but I smiled this Easter weekend. I saw two rainbows yesterday, one in the afternoon, a portion, stubby and thick, and one in the evening, a thin huge arc. And today a goldfinch as high on a tree as you can be; starlings that could be female blackbirds until you get close, a chaffinch singing its heart out and two princely beautiful male eider ducks. The world seemed almost bearable again. By the way, a broken rainbow is called a watergaw in Scots.

Thursday, 11 February 2016

Penelope Lively on ageing reminds me of getting used to being ill at twenty

I've just started Penelope Lively's memoir Ammonites and Leaping Fish, I had not heard of this book and am glad that artist and writer Nancy nudged me in its direction. For a long time, I've been reading about South Asia in 1940s and 1950s in an attempt to put together some kind of fictionalised version of my father, and Nancy told me Penelope talks about Suez in 1950s, which is perfect as my dad travelled by ship from Pakistan to UK at least once in that decade (I even found the passenger list). I'm not yet at the Suez part, but Penelope's chapter on old age makes me smile. Talking about adapting to old age - she is 80 - she says:
You get used to it. And that surprises me. You get used to diminishment, to a body that is stalled, an impediment? Well, yes, you do. An alter ego is amazed, aghast perhaps - myself in the roaring forties, when robust health was an assumption, a given, something you barely noticed because it was always there. Acceptance has set in, somehow, has crept up on you, which is just as well, because the alternative - perpetual rage and resentment - would not help matters. You are now this other person, your earlier selves are out there, familiar, well remembered, but you have to come to terms with a different incarnation.
Getting used to a different incarnation is, of course, very different when you are young and the catastrophe of illness has punched into your life. I always say it takes about a decade to get used to having ME. That's probably how long it took me. In The State of Me when Helen is still horribly ill, aged 21, in bed, she lists 10 things about her old life:
6. Looking at photos of other self in other life. Tracing finger over old self, a smiling girl in a hockey team. My hockey stick lay like a corpse in the back of my cupboard, club foot poking through my clothes, reminding me of my frailty. I had tried to throw it out twice, but Nab had brought it back in.
And in real life I didn't really ever have difficulty accepting, it just was, though at the beginning, when acutely ill, I was more terrified than anything of how ill you could feel and not be dying. I think I have always dealt with my illness with dignity, but there may well be some rage at the fucking circus of psychiatrists who have made life so hard for us by denying our illness is physical. The PACE trial is crumbling though. And we have Americans - journalist and academic David Tuller and professor of psychology James Coyne - to thank for that.

(And I had to look up ammonite. )

Tuesday, 12 January 2016

'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. 

Tuesday, 5 January 2016

The Appa Dance (made us happy as carpets)

We had much hilarity with MadLibs over the holidays. My eleven year old nephew introduced us to the game. You're asked for adjectives, adverbs, nouns, names and places, but only the questioner knows the title of the story. A narrative emerges, flash fiction, nonsensical and surreal. Appa is my nephews' nickname for me, sometimes they will call me Appa instead of Auntie Nasim. (My brothers and I had a very old aunt in Pakistan when we visited in the seventies, we knew her as Auntie Appa, we did not know then that 'apa' was Urdu for elder sister, we thought Appa (two 'p's) was her name.

The Latest Dance Craze
Have you heard about the latest dance craze sweeping Paris? It's called The Appa! Slip on your hunting shoes, turn up the speakers on your Christmas tree and let's master the moves that put this bleak dance on the map: put your hands on your shins, stomp your nose and strike a sad pose. Take fourteen colourful steps to the left, spin irresponsibly, then take two boisterous steps to the right. Throw your mouth in the air and sway your foxes from side to side. For the big finish, stick out your belly button and wiggle it excitedly. Repeat all of these circular steps until the song is over.

It reminded me of The Time Warp in Rocky Horror. In the early eighties, we spent many a happy night as students in the cinema, doing all the actions. In another Madlibs,  'happy as carpets' came up. I want to use that gorgeous phrase in a story.

*Update I received this photo on Twitter of the 'happiest carpets I know', stunning image of dyed rugs drying in Tangiers: