Thursday, 19 February 2015

It's hard to be original about grief

It's very hard to be original about grief; it's a time to be got through, that is all. Today, I find it hard to believe that I lost my beloved stepfather two weeks ago. After the phone call, the immediate minutes, hours, days passed in a blur. I veered between wailing and relief for the first week. He was 85 years old and had been spiralling further into severe (vascular) dementia, but we did not know he was so poorly, we thought we had him for a good while longer. He died peacefully in his sleep, but his passing was a shock, especially for my mother. He will be spared the indignity of not knowing who he is, not knowing who we are, and so will we. But he has left a huge gap, he was a wonderful man, the kindest man I knew. I was lucky to have him for my stepdad for thirty-eight years. A few weeks ago, I had underlined and tweeted a quote from Damon Galgut's In a Strange Room: 'In every departure, deep down and tiny, like a black seed, there is the fear of death.' I could not have known then I would not see my stepdad again.

The day before he died, he was sitting up in bed eating trifle and reading one of his many Greenland books. When, a few days later, my brother and I accompanied my mother to register the death, the registrar asked us what my stepfather's father's occupation had been, we answered, the governor of western Greenland. The registrar half-smiled as she typed and said, I've never heard that one before. We smiled too and the sun shone and we glimpsed a time when the ache of not having him will have given way to gorgeous memories. Meanwhile, we wait.

Monday, 26 January 2015

The pantomime of PACE

More nonsense from the PACE trial/biopsychosocial gang in mid-January. The BMJ and the Lancet and the Telegraph and the Times and the Guardian and the Independent and the BBC and god knows where else reported with varying degrees of ignorance and insult that people with ME were exercise phobic, as insulting a red rag as you can get. And they wonder why people with my illness feel hostile towards such  'research'. It's a fucking pantomime. The BMJ did not at first post my comment but a week later, it has appeared. You can see the other rapid responses too, though the fact it took them a week to put mine up is not exactly rapid (and my comment should read biomedical research consistently *ignored*, ignored is missing). Lots of great comments from doctors and patients and charities. We all keep saying there is a wind of change, that this idiocy has been stamped out, finally, and then they pull another mendacious rabbit out of the bag. Professor Trudie Chalder, one of the lead actors in the pantomime - but not the only one in a tightly-knit clique of offenders - has been gloriously satirised here, described as having an advanced degree in rocket science from the church of behave therapy. That sounds about right, considering the nonsense she comes out with. I was also amused to discover that chalder is an old Scots word for a measurement of grain. The possibilities are endless.

Monday, 29 December 2014

Carlos Acosta on BBC4

With television so dumbed down and dispiriting, was a joy to come across Carlos Acosta on Boxing Day night. My favourite dance was this piece, 'Derrumbe', about a marriage ending. The female dancer is Pieter Symonds. She is mesmerising. The music is spellbinding too. The whole BBC4 programme is available here for a while.

Saturday, 29 November 2014

The Missing Story

A couple of months ago my friends lent me Tagore's selected stories, recommending one in particular, 'Kabuliwallah'. When I looked it up I thought I had the wrong page because the story was not there and after checking several  times, I realised the story was missing, it had been removed. So I read another couple of stories instead and loved 'Exercise-book', a story about a little girl who loves writing so much she will write on any surface she can get her hands on. His stories can be saccharine but there are gorgeous details, and unexpected harshnesses that stab you like drawing pins in a warm bath. When I mentioned the missing story to my friends they explained they had given me the wrong book, that they had another identical edition, and that 'Kabuliwallah' had indeed been carefully removed a long time ago to fax to someone. So we swapped over the books and they gave me the edition that did have 'Kabuliwallah' on page 115. As  I was reading it, the pages fell out and I thought what have I done only to realise that these were the few pages that had been removed from the first edition, now slotted into the wrong book.  In the end, I got two 'Kabuliwallahs'; these are the tiny beautiful details that make the world go round.



Wednesday, 5 November 2014

Autumn: research & lumberjacks & novel reprinted

Watching the 2003 film Monsieur Ibrahim et les Fleurs du Coran the other night, I was reminded of my time in France at L'Université de Caen, in the scene where the son feeds his father cat food and passes it off as pâté. My flatmate and I used to buy jars of pâté, from Carrefour that looked and tasted like cat food. I still remember the red and white chequered lids. I came across my carte de séjour the other day, which gave me a pang, more than just the nostalgia of finding student items from the '80s, it was when my life changed forever. In this student ID photo, I'd already picked up the Coxsackie B4 virus (while still at home in Scotland) and was having bizarre, frightening symptoms, with no clue, of course, of what lay ahead. In the photo, I'm wearing a purple and red and white lumberjack shirt - my then boyfriend's. Lumberjack shirts were fashionable then. 

The lumberjack theme is resonant:

In interesting new research from Professor Montoya's team at Stanford, they've found specific brain anomalies in ME patients:

The analysis yielded three noteworthy results, the researchers said. First, an MRI showed that overall white-matter content of CFS patients’ brains, compared with that of healthy subjects’ brains, was reduced. The term “white matter” largely denotes the long, cablelike nerve tracts carrying signals among broadly dispersed concentrations of “gray matter.” The latter areas specialize in processing information, and the former in conveying the information from one part of the brain to another. That finding wasn’t entirely unexpected, Zeineh said. CFS is thought to involve chronic inflammation, quite possibly as a protracted immunological response to an as-yet unspecified viral infection. Inflammation, meanwhile, is known to take a particular toll on white matter.

In the reporting of these findings, one news outlet accompanied its article with a photo of a tired looking lumberjack. It's hard to overstate how fucking irresponsible this is, though we are used to articles about ME with stock photos of fatigued women decoratively slumped over laptops, or sitting on beautiful white sofas looking a wee bit peaky. And as for the illness being 'real', well, the wise/informed among us have known that for decades. But when you get idiots in the medical community renaming a serious neuroimmune illness as 'chronic fatigue syndrome' - as happened in the late eighties/nineties - and reframing the illness to suit their own agenda - you probably can't expect the media to be anything other than sloppy.

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I used to count the years after I got ill in 1982, I stopped some time in the late nineties. But, still, when autumn comes, I know deep down that another year has passed. The State of Me has, happily, just been reprinted. The cat food scene is in there, of course.

Friday, 10 October 2014

'Dans la rue': a few thoughts on Patrick Modiano

Like many, I had not heard of Patrick Modiano when he was announced yesterday as the 2014 winner of the Nobel Literature prize.  He sounds like a lovely man, overwhelmed by the news. I listened to a short interview here in French and this illuminating discussion in English. He was walking in the Jardin du Luxembourg when he got the call he'd won.  I love that he was 'dans la rue' when he heard the news. 'Dans la rue' is one of the first, most simple phrases you learn in  French and  Patrick Mondiano is 'dans la rue' when he hears his words have just won him the Nobel prize for literature. I also love - from a writer's perspective -  that his work fuses autobiography and fiction and his books are only 100 pages, shorter than the length of the typical publishing house model - probably that is why he has not (yet) been widely translated into English.

I can still read French novels - slowly, slowly - if they are not too taxing. I downloaded a Kindle sample of Modiano's Pour que tu ne perdes pas dans le quartier yesterday but it will most likely be on the virtual shelf for a good wee while with all the other samples. (I started reading  Véronique Olmi's Bord de mer in paperback a couple of years ago but it was too bleak to finish.  I may go back though.)

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I was living in France 32 years ago, exactly, I'd just started my year abroad, the third year of my joint Honours French and English degree. I was ill from the start, I'd gone off to France, not knowing I had picked up the Coxsackie B4 virus (there had been an outbreak of this enterovirus at home in the west of Scotland). The rest, as they say, is history. I just  hope the next 32 years bring some real hope to people with  ME. I believe that if I had not spent the first decade fighting my illness, pushing myself, I would be more recovered than I am today. I didn't do GET, it was not yet invented, and I would have refused to do it, but I did do real damage by 'forcing' myself better even when I was clearly still very ill. So, please, can I say again if you have classic ME, rest, rest, rest, do not go near GET, the bizarre therapy peddled by those bizarre medics. They don't know what they are talking about. Listen to the doctors who *do* know, the informed ones, the educated ones.

Thursday, 2 October 2014

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.