Fathers & stepfathers & childhood homes

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 snail-slow process of writing about him - unexpectedly painful in several ways - although it is a highly 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 far too short notice, I must always plan my energy meticulously, 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 of dementia. 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. 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  physically and emotionally shattered 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 would have to sit down to rest halfway when I became severely ill with ME. The most surreal thing was to look out the window of the back bedroom and see my Pakistani cousins' children playing on the swing.

*update: Uuganaa Ramsay won the Scottish Asian Women's Award 2014. I reviewed her book MONGOL here.

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...'

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.

Different kinds of light

The exhibition of Chinese lantern warriors at Edinburgh University is beautiful and haunting, the figures sway gently in the wind, the old quad is a gorgeous backdrop. These ninety figures made me think of Jelly Babies marching. And there are benches for resting, always important.

And Bruce Munro's 'Field of Light', which I have not yet seen, has just opened in St Andrew Square. It looks like a glorious field of glass tulips. We are lucky to have these wonderful installations on our doorstep.

Light also in the news that 8000 research journals will now be available free online in public libraries. No more ludicrous paywalls to access  papers of interest.

And more light in American journalist David Tuller's recent article on the absolute inadequacy of the name Chronic Fatigue Syndrome to describe a serious neuroimmune illness (the name was coined in the USA after the Lake Tahoe outbreak in 1984. Dr Dan Peterson has since apologised for the nonsense of such a name). Tuller’s excellent article makes the point that the illness myalgic encephalomyelitis (ME) is not owned by any one speciality, this is true, and this is perhaps why it was possible for psychiatrists in the UK to flood into the ‘void’ and try to own the illness themselves.

I *can* see how the terminology is confusing for outsiders. In the UK, ME has been known as ME since the mid-1950s (and WHO has recognised it as a neurological illness since 1969). It was only towards the end of 1980s that the 'CFS' terminology came in to use in the UK, thanks largely to the core of psychiatrists known as the Wessely school. This school effectively tried to ‘disappear’ ME and replace it with CFS, a nebulous fatigue syndrome that is a thousand miles away from the complex neuroimmune illness that is ME. They started to use the label ‘CFS’, but this slowly became ‘CFS/ME’ as they tried to merge the illnesses and dilute the criteria for ME. And,  confusingly, ME is also now referred to as ‘ME/CFS’ by doctors who *do* believe in ME. And CFS is, even more confusingly, also the research term used across the board. 

My rule of thumb is if you see the term 'CFS/ME', you know you are dealing with skulduggery.

When I was diagnosed with ME in early 1984 - 16 months after becoming ill with Coxsackie b4 virus - by a consultant neurologist, I had never heard of Coxsackie or ME and had to educate myself. It is hard to imagine now how very little information there was in the public arena. Personally, I always refer to my illness as ME, this is the illness I have, I simply don’t know what CFS is. And the fact remains that the psychiatric lobby's choices of treatment - graded exercise and CBT - don’t make people with ME better, and in fact often make people worse. In spite of  its best attempts to 'out' us as a patient population suffering from false illness beliefs, we remain ill. The obfuscation and conflation of ME with nebulous fatigue syndromes is simply not sustainable.

Finally, I welcome this event featuring Dr Mark VanNess speaking about  the safety of exercise in PWME tomorrow in Bristol, and the wonderful Dr Nigel Speight. I wish I could go. Actual scientists, lighting the way, like hundreds of  marching lantern warriors. More on Dr VanNess's work here.