Wednesday, 2 April 2014

'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.

Monday, 17 March 2014

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.

Thursday, 13 March 2014

I used to hate Twitter, now I love it

Before I'd ever used it, I hated Twitter, I was a bit Jonathan Franzen and thought it was nonsense. Now, I love it. It's perfect for low energy, you can dip in and out and say what you need to in 140 characters. And there are links to some great resources: I can bookmark articles in a jiffy and read later when my head is up to it (in truth, not all that's bookmarked gets read). My ME symptoms have been pretty bad this last ten days, that feeling of having weights in your head and neck and legs. And dizzy, so damned dizzy. I have fought it, tried to go out to do errands, only to end up spending long spells of the day in bed (I never bloody learn). I do restrict the number of people I follow to 500, otherwise it's too much like a flashing cockpit that I can't process. And I'm always tweaking who I follow: I hate to give up on someone whose tweets I like, but needs must.

The truth is that Twitter can be an Aladdin's cave (of course, it can be a hell-hole too, but you just don't go to those dark places of jabber-babble). I was so pleased before Christmas to discover The Mushin Museum in Cardiff, I was directed there by an anaesthetist when I was looking for information on anaesthesia in 50s/60s for a novella I'm slowly, slowly writing, semi-based on my doctor father. You don't necessarily use all the facts you research, but you still need to know them, you need the mental 'furniture'. The curator at the Mushin museum  has been enormously helpful to me. By coincidence, I learned from an old CV just this week that my father had actually worked under Professor Mushin  - whom the museum is named after - in the early 60s. That gave me shivers. 

Then, the other day, I discovered artist/writer Nancy Campbell when she favourited a photo of snowdrops I'd put up that found its way to her. I learned that Nancy has written a gorgeous book called How to Say I Love You in Greenlandic, which I know will be perfect for my stepdad, it will revive his Greenland memories, so important now as he slips further into dementia. Through Twitter, we were able to be in touch directly and I have ordered her book.

I also came across The Istanbul Review recently. This gorgeous Turkey-based literary journal, 'with a presence in Edinburgh', is distributed in the UK by local indie store Looking Glass Books. I submitted some flash fiction to them last week on the off-chance and was delighted to have it accepted.

We all know Franzen gets his knickers in a twist about writers bragging on Twitter, sure, that happens, there can be dreadfully off-putting self-promotion - across all platforms - but you just avoid it. For me, social media is something of a godsend as I can't run around all over the place promoting my novel - but most of us use Twitter wisely when we self-promote - and why the hell shouldn't we publicise our writing, after the blood, sweat and tears that goes into writing, and having a book published!  But we also have a generosity of spirit towards other writers we admire, and that is invaluable.

Twitter is also a great tool for those who are chronically ill and bedbound or housebound. You can feel like shit with a capital S, but send out a tweet, a wee firework into the world, from your pillow. I often think back to my horribly ill days in 80s: unless you had physical visitors, it was a case of writing letters and phoning. Hard to believe now. I was 'amused' - if that is the right word - to come across a young woman with ME who had her many symptoms listed on an App on her phone, ready to present to the specialist she was seeing. We were both diagnosed at twenty, with the same hellish illness, but very different worlds, technologically. Her blog is here, she makes me smile. She loves her lipstick too, never a bad thing.

And, of course, Twitter is great for hearing about the latest research papers on ME - and the skulduggery - without having to trawl through the internet. I follow the excellent Tom Kindlon for this.

Wednesday, 5 March 2014

Doctors who know what they're talking about

Doctors who know what they're talking about, the opposite of the Wessely school.

And here is more on the nonsense of the PACE trial by Neil Riley, chairman of ME Association. I think we should remind ourselves of what Wessely said in 2011:  'For those who appreciate these things, the trial is a thing of beauty'. He  also described the trial as 'large and elegant'.

Enough to make you weep.

Sunday, 23 February 2014

Fathers & stepfathers & childhood houses

I was surprised - and flattered - last week to learn I'd been nominated for a Scottish Asian Women's Award, in the 'achievements against all the odds' category. I wondered what I had done to qualify: it's five years since my novel came out, though perhaps someone saw The Scotsman story or the repeat of the BBC Alba documentary.  I don't, to be honest, feel particularly representative of Scottish Asian women, though I am proud of my Asian roots, they are part of who I am.  If I see an elderly Asian man in the street, my heart collapses gently. I often say I feel  'fake' mixed race as my Pakistani father, born in British India, died when I was eight and I didn't really grow up between two cultures; I am more in tune with what an alcoholic father is than a Pakistani one (I'm in the painfully slow process of writing about him - unexpectedly painful in several ways - although it is a fictionalised account). He was doing his medical degree in Bombay at the time of Partition, and I'm fascinated by what that must have been like for him.

I actually withdrew my name from the awards as I couldn't attend the judging panel, it was too short notice, though I think they are still trying to arrange a later date for me. I do, of course, feel representative of women (and men) with ME and if this nomination can spread awareness, that is fine and dandy.

I spent yesterday with my Greenland-born Danish stepdad, he continues to drift into his own wee twilight world. Sometimes, I sit with him and google Greenland just to see what comes up. We look at videos of Ilulissat, the town where he was born, and he exclaims, That's the hospital, or That's where Per and I had our confirmation, pointing to the beautiful old church. The house he grew up in is now an art museum with a permanent collection of Emanuel Petersen, a Danish  artist. He was overjoyed when I showed him this.  

I was in my own childhood home last summer for the first time in almost thirty years, though I have  passed by dozens of times visiting family. Last year, some of my Pakistani family visited Scotland, I hadn't seen them for many, many years, we went out to Loch Lomond in two black cabs, ten of us, and we stopped outside the old house. Like a scene from a movie, we lined up against the wall and had our photos taken. The owner was in her garden and kindly invited us round the back to have a look. I was emotionally and physically exhausted from the trip and when I saw my uncle's heels disappearing into the kitchen I thought I was dreaming, but sure enough the owner had invited him in. I went in after him and it was surreal to be in a house that was mine and wasn't mine. The stairs up to the bedrooms seemed so steep and I remembered how I used to sit down to rest halfway when I was severely ill. The most surreal thing was to look out the window of the back bedroom and see my Pakistani cousins' children playing on the swing.

Thursday, 13 February 2014

Three essays & a review

I highly recommend Deborah Levy's recently published essay, 'Things I Don't Want to Know' - it's feisty and sharp, with long, gorgeous sentences that can make you dizzy if you are not careful. Towards the end she says: 'What do we do with the knowledge that we cannot bear to live with? What do we do with the things we do not want to know?' I also enjoyed Zadie Smith's essay on writing, 'That Crafty Feeling', which I came across a couple of weeks ago on Poets and Writers,  Lines We Live By. Zadie's tone can sometimes feel a bit too artfully self-deprecating, but I love her obsession with the first 20 pages of whatever she is working on, and this: 'After each book is done, you look forward to hating it (and you never have to wait long)...'

Also enjoyed Janice Pariat's 'A line runs through', her short piece on borders in literature in which she references Saadat Manto's short story 'Toba Tek Singh'. I read Manto for the first time just over a year ago and was bowled over.

And allow me to link to this new review on Amazon of The State of Me which begins: 'This is an excellent book from a gifted writer. I don't think it ever received much publicity, and so I suspect nearly everyone reading it suffers from or knows someone who suffers from chronic illness. This is a shame as it's a superb portrayal of the "world" of chronic illness, yet at the same time it is never dreary or too depressing...'

Thursday, 6 February 2014

Warning: do not overheat your lavender wheat bag

I've been wearing my lavender wheat bag like a stole these last few months, I have intermittent neck pain - I'll get a sudden creaking noise like a tree, and a short sharp pain, then toothache in my neck/left shoulder for the rest of day. Last night, I overheated the bag in the microwave, I scorched it - amazing it has not happened before, the scorching - it smelled like a singed dog. I used it anyway, took it to bed and woke up surrounded by wheat kernels, scattered like confetti. The scorched bit had burst. I am sad. I love this wheat bag, is excellent for back and neck pain, though sometimes it does burn your skin if you're not careful.  It feels like a pet has died. But time to get a new one.