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.

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

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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?

'Mongol' by Uuganaa Ramsay

I finished Uuganaa Ramsay's memoir 'Mongol' the night before last night. Uuganaa, who is Mongolian, and grew up in a  'ger' (yurt), is now in her mid-thirties, and lives in Scotland with her husband and their three children. Four years ago, she had a baby boy, Billy. Billy had Down's Syndrome and, tragically, because of heart complications, died at just three months old. In writing his story, and her own story, Uuganaa has turned her precious boy's short life - and her grief - into something beautiful.

She has become passionate about educating others about Down's. She's certainly in a unique position to comment on the misuse of the word 'mongol', historically used to describe people with Down's Syndrome. I learned that it was actually British doctor John Langdon Down  -  who had coined the term 'mongol' in 1860. Of course, conflating a disability with an ethnicity is both offensive and unhelpful.  The word mongolism was officially dropped by WHO in 1965.  I don't recall the word mongol ever being associated with my wee aunt, certainly not within our family. It's not uncommon, though, to hear people still using the word 'mong' pejoratively. I imagine it is heard in playgrounds. In 1970s/80s, when I was at school,  'spaz' was the word most likely to be used.

I enjoyed the honesty and simplicity of Uuganaa's prose: there's a certain clarity, I think, that comes with writing in a language that is not your native tongue. The final chapter made me cry (I don't often cry at books). And the early and middle chapters describing Billy are compelling and moving. I also enjoyed learning about Mongolia, gorgeous details like the pale blue paint behind the goats' horns to identify them as her family's herd. When we were kids, we would refer to somewhere very far away as being in Outer Mongolia, with little or no idea of where Mongolia actually is. This book is an education. The only yurt I have ever been in is the hallowed writers' yurt at the book festival, and it was fascinating to learn of lives lived in yurts, the daily routines. The strength of (extended) family bonds is very much highlighted.

'Mongol' is, as memoirs are, necessarily time-driven rather than plot-driven, and while I learned a lot about Mongolia, I felt there were some sections, where we perhaps get too many 'facts' and not much story. It can feel a *little* dry at times. However, halfway through, the narrative takes an unexpected turn and feels almost novelistic - I couldn't put the book down after this.  And, as I said above, the final section, which deals with Billy's passing, made me cry. I read towards the inevitable event and I felt my throat tighten. I'm glad that Uuganaa and her husband had lovely hospital staff to support them through this dreadful time, though the image stays with me of an insensitive young doctor who came to Uuganaa's ward, earlier  in the story,  to see the 'floppy baby'.

I saw  Uuganaa launch her book at a packed event a few weeks ago in Edinburgh. I was struck by her poise and grace when she read. I highly recommend her memoir, which is published by Scottish indie press Saraband. I'd love to read what she writes next.

Down's Syndrome Awareness Week

Today is the start of Down's Syndrome Awareness Week and I think of my wee aunt. We grew up together, she was our pal, she was the boss! She was adored by all of her nephews and nieces, ranging from her own age to almost thirty years younger. My youngest cousin, in her mid-twenties, tells me she still kisses her photo every day. And this beautiful film for World Down's Syndrome Day is stunning in its simple message, Everyone Has the Right to be Happy. I can't watch it without an overflowing of tears. More on the awareness week here.

Jim'll Fix It

Watching last night's Panorama, What the BBC Knew, in which the BBC investigates itself,  I was  reminded of how deeply we were all anaesthetised - for want of a better word -  in the seventies and eighties about the reality of who Jimmy Savile was: he was avuncular and eccentric, he was a good man; he was up there with Blue Peter and John Craven's Newsround, part of the safe furniture of childhood. My wee aunt with Down's Syndrome, a couple of years older than me, used to love him and I can see her vividly, grinning and giggling, her blue trousers, legs crossed, sitting on the floor watching Jim'll Fix It.

Last night showed a clip of Jim giving out medals to some cub scouts, instead of individual medals they got one big joint one, and he looped the medal strap round all of their necks. At the time, this would have been seen by us as playful and affectionate - watching now it's like he was putting a noose around their necks.

I reference Jimmy in my novel, my very ill character Helen wants Jim to fix it for her to be better. It's 1984. It feels odd  to re-read these words now.

At the weekends, I would sit clamped against the radiator or lie on the couch while Sean and his friends watched videos. Sometimes Ivan was there. The highlight of Saturday was watching Blind Date. I would fantasise about being chosen and worried sick about being sent on a date where you had to walk a lot. Sean said I should write to Jimmy Savile: Dear Jim, Please can you fix it for me to be healthy? I’m twenty-one and live in Scotland. I could see myself sitting in the television studio, with the medal round my neck, grinning idiotically at the audience. Rita and Nab would run on with tears in their eyes, thanking Jim for the miracle.

The  current disturbing BBC calamities aside, like so many, I cannot understand how others 'knew' of Jimmy Savile's crimes, but remained silent over the decades. Different culture back then or not I just don't get it.

Memories

Sadly, two of my friends have lost a parent recently, aged early seventies, and yet my lovely stepdad just celebrated his 82nd birthday, he is physically doing pretty well, has had both knees replaced,  has survived prostate cancer and he always looks dapper, even when he is just shuffling round the house, I think that is because he is Danish - he never looks untidy. Still, he is now in his third year of vascular dementia, so there is much untidiness of thought. He calls Tinker, Tailor, Soldier, Spy  - Tinker, Tailor, Soldier, Spiderman, and he is not joking. I know about dementia, I volunteered for Alzheimer's Scotland for five years in the nineties and my wee aunt got dementia in her forties, a few years ago - the combination of Down's and dementia surely one of Nature's cruellest quirks, she died in July. My stepdad has always had quirky sayings and I'm not sure now whether what he says is a result of his memory being destroyed, or just his own way of saying things: I don't have eyes in my neck (I don't have eyes on the back of my head) and  It's on my house  (It's on me, I'm paying). It was 'on his house', and we had coffee in Waterstone's and on the way in he asked if they still had my book, so he remembered my book launch from three years ago, I was impressed. But later he fell, missing the last step, not realising the bannister curved in the other direction, I did not see this mishap, my mother was with him, on their way to the toilets, but he assured me  'he had no wounds'. I am so glad he is fictionalised as Nab in my novel, some of his wonderful traits in print forever.

Gorgeous

My wee aunt's service was beautiful and simple, overwhelming too, I'm all cried out. A Catholic service just as my granny and grandad - and she herself - would have wished. I have no religion but the hymns were gorgeous and even the interludes of readings/prayer - a kind of buffering from what is about to happen, the actual burial. Like any funeral or wedding, family members thrown together, people we don't see for years on end, suddenly in the same space. There's much to catch up on, but not enough time, conversations started and not finished, and as usual I was talking so much - someone asked me about my book - I did not manage to finish eating, the tables were being cleared, so I nabbed a scone away with me though I had to forgo the jam and cream. The last time we were all together was at my granny's service almost three and half years ago. At that time, my publisher had just gone into liquidation and the book's future was in horrible doubt, so it was so lovely, this time, to have people coming up to me saying how much they had enjoyed it. The morning of the service we were staying with my aunt and uncle who live very near the street I grew up in and I joked with my mother that I was up so early I felt like I should be going to school.

Darling wee aunt

My wee darling aunt passed away yesterday. I didn't think I'd be able to get up north last week and it was such a gift that I got to see her and kiss her and hold her hand again. She had strong notions of heaven - she was brought up Catholic and loved the campness and pomp and ceremony of it all. I hope in her heaven there are tomato sandwiches (her favourite) and Scottish pipe bands (she loved dancing) and policemen (she loved men in uniform) and giant packets of felt pens (she was a dabhand at colouring in, never going over the lines) and most of all, her beloved mum and dad. All of us - her cynical/agnostic/atheist family - so very touched to see her rosary beads wrapped round her wee hand - placed there by my uncle, I think - as she lay in hospital these last six days. She inspired the character Brian in my book and I love that some of her quirks are in those pages forever. So, goodbye, my darling wee aunt. I hope you are peaceful now. If I can be half the auntie you were, I will be doing just fine.

(I would like to add that her care this last week was exquisite and sensitive, all thanks to our wonderful NHS.)

A very long post on balance & pain & beauty

People tell me they enjoy this blog because it gets the balance of ME and non-ME right, how do I manage it? I'm not sure I know. My impulse to write - when I am able - is what has saved me from this illness, even just a couple of sentences. My posts are often short. I constantly have words banging together in my head, I would prefer if they were gently colliding. Still, I could never blog about ME all the time, it would bore the arse off me - remember I've had this since 1983 - but of course I must mention what is important, and my rage and disgust at the non-believers never goes away and intensifies periodically.

But neither can I bear undiluted self-absorption - and you do find it on some ME blogs, ironically those who are less ill tend to be the most solipsistic. You will come across this 'monopolisation of suffering' on non-ME blogs too, I guess it's human nature. Of course, there is a therapy to blogging, and we all construct masks when we blog or FB or tweet - unconsciously or not - but when some people - the least isolated, the most supported - seem constantly unable to see beyond themselves, that depresses me a little.

Unfortunately, those with very severe ME are usually too ill to blog much, they are too busy surviving the day, hoping tomorrow might be slightly less awful. Greenwords is a wonderful example of someone severe blogging, her posts are infrequent, but she does it so bloody well. And she is a dabhand on Twitter. Gardening is her passion, she is mostly unable to do it herself, but she is a 'passive gardener' and I learn stuff from her blog/tweets. (I like blogs where I learn something.) Other (ME) blogs I dip into are Digitalesse (photograpy); Ciara writes gorgeous posts on motherhood and Dr Speedy updates us on all the lunacy with just the right amount of scathing.

There was no blogging when I was very severe, I do wonder what I would have expressed of my illness back then if the internet had been around. Intense chronic symptoms distort your view, it can be hard to think of anything else. I remember I used to write my symptoms down to keep track of them and make bargains with God, whom I've never believed in. I'm no saint but I somehow manage(d) to keep hold of the fact that terrible things - and beautiful things - are going on elsewhere, no matter how much this illness has impacted on me. Like Helen Fleet, my character, I have a sense of absurdity, which no doubt helps me cope. But I can't blog solely about my life when children are being bombed in Lebanon/Gaza, flooded in Pakistan . . . take your pick of the horrors.

Still, some days you just want everything to be good for yourself and that is okay. There are still days my heart could shatter at what I have lost. And those with unremitting, severe ME deserve fucking trophies, they really do. I don't tend to put my worst days and hours up here, I think because a lot of that is in my novel, which is my weapon, and I feel I don't have to fight anymore (though I do, really, we all do).

Life can be extraordinarily painful and extraordinarily beautiful, there is luck and there is bad luck. It is how we respond that makes the pain bearable or unbearable. And how we respond depends on who we are at the core, and also on the support we have. Without support, this illness could very easily undo you.

When I see my wee aunt (who is fifty, she has Down's Syndrome and now dementia) I get the extraordinary pain and beauty at the same time. My heart breaks every time I see her, but when she smiles, it unbreaks and the world lights up. I saw her recently and fed her a miniature Milky Way and helped her drink a small carton of Ribena with a straw. It took over an hour. She is strapped into a wheelchair during the day. I hugged her and kissed her and sang a few verses of the Hokey Cokey, once her favourite song/dance. She can no longer walk or speak or read or write or colour in. I was in a state of total exhaustion for the next few weeks from this visit up north, that scary, jetlagged, all muscles compressed into a tin sensation, clumsy and forgetful, but all that mattered was I'd spent precious time with her.

Even taking the wide and bizarre spectrum of ME into account, if you look around the internet and see just how many claim to have (or have had) ME, I still fear that it is being over-diagnosed in some places, some seem to wear it as a badge, inappropriately. This is the fault of GPs and self-diagnosers who are - understandably - stumbling in the dark because of the nonsense peddled for so long by the Wesselyites. (Yeah, we don't actually know what's wrong with you, let's just call it ME. Now, be a good girl/boy, go and do some star jumps and we will train you not to feel pain.)

With any longterm illness comes much pain and chaos - and moments of beauty. We need balance to cope with it all. I don't always get the balance right in real life, but I hope I can do it on this blog.

*I meant to add this blog before but got distracted, have been tweaking this post for a week, it started as a post about my wee aunt and went in another direction. Holey Vision writes with grace (literally, her dog is called Grace) and humour about life with progressive loss of vision. Her spirit and lack of self-pity are quite something.