Monday, 19 May 2014

Good things: film, dance, books

Last week, I got the DVD of  the documentary film Voices in the Shadows, which came out in 2011 -  of course, I've known about the film for ages, but have never felt in the frame of mind to watch it, until now. The portrayal of severe ME - the most severe imaginable - is harrowing and although I was not this severe, it still taps into my very bad times, and chills me to be reminded of them. This film is beautiful in its simplicity: the multi-systemic, devastating illness ME  has been hijacked by psychiatry, the criteria diluted, the research polluted. Patients are being made worse by brutal regimes of graded exercise. It is well worth watching. The narratives will shock you, even when you think you are jaded and can no longer be shocked by the neglect - and abuse - of the medical profession towards patients with ME. Dr Nigel Speight and  Professors Leonard Jason and Malcolm Hooper  articulate the plight of severe ME sufferers with such grace and compassion, it's hard not to have tears. My anger at the gang of medics who are guilty is reignited. And my heart breaks - again - for those who suffer from severe, unremitting illness. Dr Speight talks of a 'sort of new Stalinism coming into British medicine'.

As I got ill in autumn 1982, before the Wessely school nonsense/conflation/denial -  I had Dr Behan and Dr Ramsay on my side - I was myself never forced by powerful medics to pretend that I was not actually physically ill. Although, it was not a walk in the park getting diagnosed, it took 18 months. And like most PWME, there were people in my life I simply blocked out because of their  lack of understanding. You have to, in order to survive. And I will never forgive those people. I often say that without strong family support this illness could undo you. I also think that it is actually impossible to truly ever understand ME unless you have it. Even now, borderline moderate/severe - housebound much of the time because of post-exertional malaise (PEM) - I can look fine and seem fine for a window, but behind the scenes I feel as I've been hit all over with a mallet and my brain is on fire. I can't form a sentence, I drop words. I  bump into things.


And this is gorgeous,  I love the energy in the performance -  actor Sarah Gordy  dancing in 'Violence of Discovery, Calm of  Acceptance'.


Nothing makes me happier than secondhand book stalls. Such jewels and bargains to be found last week at a Christian Aid book fair in George Street, literary fiction and non-fiction for £1 - boxes and boxes of  books, including Penguins and Pelicans. It was sunny and there were trestle tables outside, it was like Paris. It reminded me of how much I love paper books. And I wondered what secondhand book fairs/shops will be like in fifty years. Will they even exist?

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