Sunday, 20 September 2015

Two papers and two films

I very much enjoyed this paper by Rose Richards: Writing the Othered Self: Autoethnography and the Problem of Objectification in Writing About Illness and Disability - she writes from the point of view of someone who has had a kidney transplant and notes that there are not many narratives around her particular illness. I found lots  resonated, although the paper refers to non-fiction/academic writing.

Also, a recent USA report via ME Research UK  is well worth a look, I have not read the whole report, it's very long, but the key arguments about ME are there. I've quoted a short paragraph via a tweet.

And I recommend two films I saw on DVD this month - both, by chance, about actors rehearsing for a play, and the lines they rehearse echoing real life. Cycling with Molière (in French with Fabrice Luchini whom I adore) is lighthearted and funny, though slight. Still, I probably enjoyed it more than the somewhat pretentious though clever Clouds of Sils Maria (with Juliette Binoche, but in English). We studied  Molière's  L'Avare  at university all those years ago and I recall the mirth like yesterday.

Saturday, 12 September 2015

Art and death and farewells in Glencoe and Greenland

Twitter can be wonderful. I first met artist and writer Nancy Campbell via Twitter, last year in March. Nancy had favourited a snowdrops photo, and I discovered she had produced a beautiful book, in the form of art cards, How to Say 'I Love you' in Greenlandic. I immediately got the book for my stepdad (I may have traded a copy of my novel for Nancy's work, I can't recall - I've done this several times, used my novel as currency for art).

My stepdad spent many happy hours reading through the cards, enunciating the Greenlandic words - I can see and hear him now - correcting me when I got the pronunciation wrong. Childhood memories are important in dementia, and we didn't know the old songs/fairytales/poems that would stimulate him, so these cards played a special role.  When he died, I wrote a message on one of the cards, wrapped gold ribbon round it - a bit 'blingy', but it was all I could find - and placed it in his coffin. You'd be surprised at what is not allowed in coffins for cremation - some of the other objects we'd wanted to place were not permissible. There is an instinct, I think, to put in many objects of comfort for the departing soul. Though that is, of course, more to comfort ourselves.

I was delighted when Nancy told me she'd applied for an art residency at Ilulissat's Emanuel Petersen Museum, which, before it was a museum, was my stepdad's childhood home. We could not have known that by the time she did the residency my beloved stepdad would have passed away. By sheer coincidence my mother had planned to scatter his ashes in Glencoe, the same week Nancy was in Ilulissat. Nancy kindly asked if there were any mementoes of my stepdad's we would like her to take to Greenland. We decided to send her his order of service with loving messages written on the back by various members of our Scottish/Scandinavian family. I asked Nancy to perform whatever ceremony she could, I suggested making a wee boat and floating it away, but was putting the event entirely in her hands. I knew she would know what to do.

Scattering my stepdad's ashes in Glencoe - or more accurately Glen Etive - was a peaceful and beautiful occasion. The sun shone and we played Local Hero soundtrack gently in the background - he loved this music - and my younger nephew played a sad folk song on the violin. Buachaille Etive Mor stood solid and strong in the background. There were deer,  and house martins diving all around. We put a few drops of whisky on the ground to send him on his way. I brought back some wild flowers and pink heather, the flowers died straight away, the heather has survived and is on my bookshelves.

Early on in their marriage, my mother had a local artist paint Buachaille Etive Mor for my stepdad as a gift. It was one of his favourite spots in the world. The painting hangs in their house and now when I look at the painting I know he is there, physically part of the landscape. Internet connection in Greenland and Glencoe is, unsurprisingly, fickle, so I did not know what Nancy had done on that day, but I did think about Greenland when we were in Glencoe and was curious.

Last week, Nancy sent me a beautifully detailed, long email of what she had done, I read it in tears, touched by her great thoughtfulness and creative gestures. She had placed my stepdad's memorial card on top of the harmonium in the museum for a couple of days, among the stunning Emanuel Petersen paintings. And she put sage leaves around him that she'd brought from her garden in Oxford. She said she liked the idea of sage helping spirits to rest. After the harmonium, for the final goodbye, Nancy chose to place his order of service in an Ilulissat hilltop graveyard, under a piece of gneiss she had chosen as an anchor. She placed him at the southern most tip of the graveyard, pointing towards Scotland. She told me that in Inuit culture, wide views of the sea are important for the location of burial sites. This is a photo of the cemetery taken by Nancy. There are harebells and blueberries growing, and mussel shells and plastic flowers on the graves.

                                                                     Ilulissat, photo by Nancy Campbell, 2015

Nancy and I have never met - though I hope we do, one day - and she did not know my stepdad, but by a quirk of fate, she became intimately involved in our bidding farewell to him. His twin brother, who lives in Copenhagen, hopes to scatter his remaining ashes in Ilulissat next year. Then the farewell will be complete.  I think of how our lives are threaded, my stepdad could never have known that the artist whose cards he enjoyed so much in the last year of his life would be taking him home to Greenland. And Nancy, when she favourited a photograph - garden snowdrops I'd taken on my very unsophisticated phone - could not have known where that would lead.

It is seven months now since my stepdad's passing, my own grief is more gentle, for sure, but it's without exaggeration when I say that he was my best friend. Now that he is gone I know this more than ever. I have yet to meet a kinder man. Thank you, Nancy, for what you did for him.

Thursday, 13 August 2015

Prof Julia Newton's excellent severe ME research; & active verbs & buffoonery

Terrific to see Julia Newton's recent research project: identifying those with severe ME in Newcastle area. 

Real science.  That might actually help people.

The buffoons are, to be sure, slowly retreating. The new BACME - those self-appointed experts - medical guidelines state that 'CFS/ME is not a mental health issue'. No shit, Sherlock! You can tell they are trying weakly to embrace the biomedical model, having, of course, previously supported the horribly flawed biopsychosocial model, but their true colours are still there - no mention of pacing, which is how people with ME fucking survive.

And still predictably promoting PACE/CBT nonsense -  psychobabble galore, it really is a hoot, active verbs and everything:

But they can't give up all their beliefs at once, can they? And who is regulating BACME? 

Perhaps being part of the ME Research Collaborative has reigned them in a  bit.

Sunday, 2 August 2015

Writing, Rituximab & a Japanese film about death

Three pieces on writing I have recently enjoyed:

An interview with Janice Galloway, who has a new collection of short stories out. Speaking about the blurring of memoir and fiction, she says: 'It’s all stories, as far as I’m concerned and your job is to tell the story interestingly and not be dull.'

I agree with her wholeheartedly.

Here, writer Fiona Melrose on how a Caravaggio painting she loves makes her think about story and construct: 'Someone central in your story has to want something that drives some sort of journey, even if the thing they want the most is to stop everything from changing.'

I think that's an interesting point. Writers learn early on their main character has to want something - I remember reading years ago that your character has to really want something, even if it's just a glass of water - but wanting things not to change is often a driving force in real life, so of course applies to fictional characters.

And a very interesting essay on ethnicity and writing - should ethnicity limit what a writer can write? - from  Susan Barker, who describes herself as 'British — mixed-race English and Chinese, but linguistically and culturally British'. I too am British, a Scottish mother and Pakistani father, and I certainly feel culturally and linguistically Scottish. 

I've been thinking recently that Helen Fleet my main character in 'The State of Me' is white, it never occurred to me that she wouldn't be. My novel is about illness, not race. Writing Caucasian characters is natural to me, whereas writing Asian characters is harder as I did not have much Asian influence in my childhood. I am less confident with Asian characters, but that does not mean I should not write them. After all,  fiction-writing is pretending to be someone else. And I am in the slow process. 

I tried to say more about this in the comment thread of an excellent blog post about diversity and fiction  back in June by Nikesh Shukla.

Going back to Susan Barker's essay, she says: 'In a best case scenario, what should determine the legitimacy of fiction is the writing itself, and though this is not always the case, fiction writers should not be deterred from writing from other cultural perspectives.'

Indeed, it's the writing, always the writing.

Also, good news on Rituximab last month, phase 2 of the Norwegian drug trial was published. I feel cautiously optimistic. Just so gratifying to see actual science in progress, after decades of buffoonery.

And I highly recommend this Japanese film from 2009, 'Departures', a gorgeous film about death.

Friday, 10 July 2015

'Trying out different fathers' - my thoughts on Omar Sharif

Had tears today, hearing that Omar Sharif has died. Sad for his family, but happy for him that he no longer suffers the ravages of dementia. To me, he is more than the handsome Egyptian actor who glittered in Dr Zhivago and Lawrence of Arabia.

I grew up hearing that my father looked like Omar Sharif. My father was my mother's first husband, she met him in the sixties when he was a doctor and she was a nurse, a Mills & Boon romance without the happy ending. My father died in tragic circumstances when I was eight. My memories of him are hazy. He looks handsome in photos, and I can definitely see the resemblance (though I think Omar had the edge). When I first saw Dr Zhivago - aged thirteen? - I couldn't watch Omar Sharif without thinking of  my father. The tram scene had me weeping, and not just because Yuri  doesn't get to see Julie Christie again. I've since seen Dr Zhivago many times over the years, and the tram scene is me watching my father dying, which sounds fanciful, but that is the truth. My memory also tells me that I first saw Dr Zhivago in Karachi, when we visited in 1974 (after my father had passed away), but that is not true, I watched it a few years later at the cinema in Glasgow.

And I still can't even listen to Lara's Theme without welling up.

In May, when the media revealed that Omar Sharif had dementia I had a lump in my throat, having recently lost my beloved stepfather to dementia. To know that this brilliant actor now had dementia  touched me. And when my stepfather passed away, five months ago, I was unable to contemplate even a sentence of the novella I've been slowly writing, based on my father. My head was full of Greenland, there was no room for Karachi (my father was my father for eight years, my stepfather was my father for thirty-eight years).

The character based on my father is called Omar, I'd juggled many names but Omar fits best. Recently, I've ventured back to the novella but I'm a different person writing as I no longer have a stepfather, there is a huge gap where he should be. Moreover, fictionalising my father has its own griefs and complexities: I  think of Bernard MacLaverty who has spoken of 'writing as a way of trying out different fathers'.

I say to my mother sometimes, Did he really look like Omar Sharif? Yes, she says, he did.

RIP, Omar Sharif.  In the meantime, I will try out different fathers.

*I watched Monsieur Ibrahim last year, I recommend it.

Sunday, 21 June 2015

The longest day

Today is the longest day and also Father's Day - the first one without my beloved stepdad. I can hear his lovely voice. I think of the hours I spent with him showing him pictures of Ilulissat on the iPad. He couldn't grasp how they got there, he thought I had done it, I'd explain, it's the internet and he'd say I didn't know the internet was interested in Greenland.

Since he left, I wear his Harris tweed jacket when I'm cold or missing him, it feels like he's hugging me. Today, I miss him and feel cold, it's freezing, June in Scotland usually is. So the Harris tweed is doubly needed, and I feel like a student in eighties again, when we'd wear  mansized - usually, our boyfriends' - clothes.

An orange poppy bloomed this morning, of course I see it is a sign that he's here.

And below some gorgeous wee pink wildflowers that I rescued before my mother, who was visiting, mowed away.

Saturday, 20 June 2015

The daft neurologist (cont'd) ...

My book being published has been one of the happiest times in my life - though the process was certainly not without its trials  - and on the launch night I was in heaven. The room was packed, copies of my novel piled up beside me, my nephews - then just three and six - were sitting in the audience and walked up to the front with roses during the reading. That was the only actual launch event I did, I can't run around the country/world doing writerly things and that breaks my heart.


You would think/hope that thirty years after my diagnosis of ME - abnormal muscle biopsy, abnormal EMG, abnormal blood tests etc etc etc - all would be fine and dandy, we would be waiting patiently and quietly for the elusive biomarker, as dedicated researchers worked hard to help us find a cause and cure. No chance. 

The (ever more desperate) psychiatric lobby is always hiding behind you, waiting to jump out and squeeze the very soul out of you. This past fortnight we have been treated to a work called 'It's all in your Head: True Stories of Imaginary Illness' by a daft neurologist called Suzanne O'Sullivan, who apparently googled ME and then wrote her ridiculous chapter on ME/CFS and false illness beliefs. Her book sits on the table in the same Waterstones I had my launch. It is very tempting to place copies of The State of Me, offer a 2-for-1, prevent readers being  duped. And Suzanne is of course, doing the whole literary trail, book festivals galore. She seems wholly unperturbed about spreading medical misinformation.

This Bookseller article referred to her book as 'groundbreaking and controversial'.

I can confirm however that it is certainly not groundbreaking, more a dreary recycling of the biopsychosocial narrative because as I already reviewed here on Goodreads, it includes a case study 'Rachel', a young woman with 'ME/CFS' who 'fails' to manage her fatigue and doesn't get better. Naughty Rachel. She refuses psychiatric treatment (Good for you, Rachel). The chapter is manipulative and incoherent. Vacuous too. 

This is 2015, let's just remind ourselves. Yet Suzanne has not managed to keep up with the science in spite  of having it all at her fingertips. If Suzanne were not so dangerous, she would be a hoot, but this is, frankly, indefensible:
 'I will not be obtuse. I believe that psychological factors and behavioural issues, if they are not the entire cause, at the very least contribute in a significant way to prolonging the disability that occurs in chronic fatigue syndrome. Do I know that for sure? No, nobody does...'
'...So is it a somatisation disorder? ME/CFS is an illness in its own right that has not traditionally been referred to as a somatisation disorder, but that is not to say that it does not share common ground with psychosomatic disorders. It manifests as multiple medically unexplained symptoms. Sufferers of both disorders carry similar behaviours and illness beliefs and neither leads to evidence of organic disease however long you wait.'
 'There is certainly evidence that ME/CFS can be precipitated by exposure to an infecting agent (no shit, Sherlock!) but once the infection has cleared, there is no way of explaining how the syndrome of chronic fatigue develops, except perhaps to consider the psychological vulnerability of those affected and their behavioural response to the illness.'

The icing on the cake (this part is also in my Goodreads review but is worth repeating for those of us who actually have an understanding of the stinking politics around this illness):

'In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.'

There is something very interesting alone in the fact that Suzanne does not seem to have actually met (m)any patients with classic Ramsay-ME  - in 1990s when she was training, the Wessely/CFS school was just taking root. ME was being 'disappeared'. The patients she sees with dissociative seizures most likely don't have classic ME in first place. (Who knows what they have, given that ME/CFS has become a dustbin diagnosis, thanks to Oxford criteria, so loved by Wessely school.)

But O'Sullivan seems not to be unaware of the problems with criteria. (She really ought to watch Leonard Jason, professor of psychology, his 2014 presentation on case definitions and criterion variance is excellent.)

And we don't ever find out what happens to Rachel, she is not followed up. O'Sullivan also fails spectacularly to describe the experience of probably all of us with ME, of pushing ourselves to recover only to relapse catastrophically.

So, a doctor who is not an expert in ME feels entitled to devote a whole chapter of her book to ME, in which she shamefully undermines all the years of hard work those of us with the illness have done to educate. She is taking the piss. She will not rock the science, of course, it is progressing nicely, but she could well do damage to someone with ME who has faced disbelief from friends or family.

What I have realised, though, is there is little point in railing against the oafs, it only makes you more ill. And to my surprise, even book review threads contain oafs, I did not know this. I was naive and thought that book threads might be a useful way of educating other readers about ME. People who read are nice, friendly, reasonable. Not so.

Oafs abound. And they steal your energy, they are noise in your head. They are self-important, bloated and entirely lacking in self-awareness. They know best, you see. Your thirty-three years of lived illness does not equal their opinion. And they also have a skill of blocking out hard, objective science. They have convinced themselves that 250 000 people in the UK are somatising across the decades. As someone on the book thread said, their blocking out of evidence is a psychologial phenomenon in itself.

The Countess of Mar has written a stonkingly good letter to O'Sullivan and copied it to her publisher Chatto and Windus (and also to Simon W's seemingly joined-at-the-hip friend David Aaronovitch). It is just so dispiriting that Suzanne's publisher saw no harm in her framing of ME as psychosomatic. I guess they just see £ signs (ooh, controversial, edgy science).

The truth is, of course, that O'Sullivan has indulged herself at our expense, and her publishers have indulged her too, by including a neuroimmune illness in a book of 'all in your head' disorders.  It goes without saying that no one in the ME patient/research community had heard of her until a few weeks ago, and yet readers - frighteningly gullible - are willing to bestow authority on her.

Dearie me.

Happily, the Annals of Internal Medicine have just put this very fine NIH  report online: National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

I have decided not to blog about ME any more, not unless there is good news to report,  advances in research, positive events. I have educated others as much as I can,  but it is simply too draining, physically and emotionally to challenge nonsense.

Science is winning, it always has been.

But in the meantime, I have banished the oafs.