September

September always gives me a slight, quiet shudder, I almost don't know it's there, but I feel it. It's the anniversary of my going to Caen (in 1982) to study for a year and becoming hideously ill, with what turned out to be Coxsackie B4 virus. I'd picked up the enterovirus before leaving for France  - most likely when waitressing.

A few weeks later,  I got a severe cold in France, on top of the other bizarre and frightening symptoms. A doctor came to the house, I had terrible pain/pressure in my chest, it felt like a small animal was sitting on me, how could he know I had Coxsackie? I had strange vibrations in my muscles and the light hurt my eyes. I felt cloaked in nausea.

As soon as I could, I came home.  Got the bus/ferry/train. Really dragging myself.

I remember passing houses in Rouen on the bus and thinking of Madame Bovary.

When no one at home could tell me what was wrong, though feeling like hell, I went back to France - train/ferry/bus - really dragging myself.

Then the nightmare began.

I had to come home again.

Thirty-four years ago.

I will be grateful forever to the locum GP my mother had to call out to the house, who recognised I had Coxsackie, which led to specific viral tests and referral to consultant neurologist Peter Behan. In early 1984, Dr Behan (now retired professor of neurology) finally diagnosed me with ME, which explained why I felt like I was dying.

I will never forgive those who did not believe me. Never.

It has just gone midnight, I have a wee tear, I am not given to self-pity but sometimes I do think, this is all very fucking sad.

I do still hope maybe there will be effective therapies in my lifetime.

And I am happy and proud to have all the above fictionalised in The State of Me (2008), a bearing witness to the initial brutal  'assault' of becoming ill with ME, all those years ago.

The Panda Theory, Joseph Anton & an anthology

Gallic Books very kindly sent me a copy of The Panda Theory by Pascal Garnier when I said last week  on Twitter that I'd had to return it to the library before I had finished. I started reading it last July (I think) and got a third of the way. I look forward to starting it again. I finally finished Joseph Anton, I had a lump in my throat when Salman's second son, Milan, was born, I was surprised at my emotion. I also have huge respect - and sadness -  for his ex-wives Clarissa Luard and Elizabeth West. Clarissa sadly died in 1999. I have the Vintage Book of Indian Writing (1997) that he and West edited - in fact, I bought it that year, I see from the date, I always date my books. Interesting now to get the backdrop to the fraughtness round the publication, it was considered risky then for her to have her name on the anthology (it was a secret they were together). It was dipping into this anthology last autumn that I discovered Bapsi Sidhwa's work. And I had no idea Salman was big pals with Bono (I am not a U2 fan).

Gems

I recently read a Ray Bradbury short story, 'The Veldt', from The Illustrated Man, first published in 1951, and I was blown away, it felt so modern - and creepy - and I wished I'd read him before now (I've only read the essays Zen in the Art of Writing). Then I remembered that in The State of Me, Helen admires a 'A Flock of Ravens': 'I just read a short story by Ray Bradbury, it's called 'A Flock of Ravens', I really liked the tone, the hysteria. The man who sold it to me couldn't bend his arms properly.'

So I realised I must have read it too (my book is a  handy aide-memoire). 

I very much like this recent Goodreads review of the novel. And enjoyed this Jenny Diski article on writing, or not writing, via Fictionbitch. (Also, in order to write you need to read. But you should never force yourself to read a book for pleasure, there is a time for every book to be read.)

I've been dipping into Bord de Mer by Véronique Olmi, a French novella I read of here. The language is simple and not too taxing. And I've finally started An Exploding Case of Mangoes by Mohammed Hanif, I've had a secondhand copy on my shelves forever.

I've had a crappy cold that's recycling itself - and a racking cough - I got antibiotics yesterday, it was getting ridiculous - and have woken up more than once feeling horribly ill, more from ME than anything, that horrible weakness-nausea in the very core of your muscles, and you think: Fuck, please go away, and thank your lucky stars you are no longer like this *all* the time, confined to bed, as some poor people are.

Which brings me to Dr Betty Dowsett, I was greatly saddened to read about her passing, aged ninety-one, a true champion of people with ME. She worked alongside Dr Melvin Ramsay. (I was diagnosed By Dr Behan in 1984 according to Ramsay definition of ME, but  did not, of course, know that at the time as it was the only definition, before all the nonsense and watering down.)

*I just saw this, neuro-immune model of ME, from PubMed, June 2012.

Skim or skip or give up altogether?

Interesting article in Guardian on skipping the boring parts in books. I think even the best books have boring parts, it's almost unavoidable. (Writing, you just can't edit it *all* out, you sometimes need to keep sections in that are not the most riveting, otherwise the book has holes. At times, I was afraid there would be nothing left of The State of Me, I'd pare it down so much.) I tend to skim rather than skip, I can't read much about landscapes, I get bored with trees and shadows and sun dipping. But sometimes skipping is necessary, as you try, try, try to finish a book that you know deep down you are not enjoying. One of the books I skipped big  chunks of last year was Solar by Ian McEwan, this novel actually made me angry, it was so dull and yet so lauded. I constantly felt it was just a male writer's fantasy that hugely unattractive - emotionally and physically - middle-aged men could get heaps of women falling in love with them just because of their high intellect.  It's supposed to be a comic masterpiece - there was one - admittedly - very funny episode in the Arctic and that was it, I'm afraid. And I must confess I also skipped a lot of the highly acclaimed, prize-winning Room by Emma Donoghue, the narrative voice is innovative - the first scene heartbreaking - and the subject matter  harrowing, but the voice began to grate early on, for me. For a grim tale from a child's point of view I much preferred I'm Not Scared by Niccolò Ammaniti.

I read  French novels occasionally and thanks to a friend's gift voucher have just ordered Lorsque j'etais une oeuvre d'art by Eric Emmanuel Schmitt. I knew nothing of this writer 'til Crafty Green Poet recommended his book to me. There's a good chance that this time next year I will still be reading it, so choppy and fanciful are my reading habits.

Narratives of illness

I've been thinking recently about what books I read when I first got ill. I didn't read about illness, I simply read what I was already reading: novels. I struggled to read French, my huge dictionary clunked beside me in bed, I was trying to hang onto myself, the person I was. I never finished Voyage au bout de la nuit, it's still on my shelves. I persevered and persevered with Midnight's Children. My copy is yellowed now and I cannot open it or smell it without remembering being very ill. And yet it's one of my favourite books.

The only book on ME I had was Dr Melvin Ramsay's slim The Saga of Royal Free Disease (1986) - it is still my bible. I had a couple of 'self-help' books by Drs Anne MacIntyre and Charles Shepherd, but that was not 'til the early nineties - I can't recall exactly (I gave one to a boyfriend, I still have one on my shelf). It was in the nineties that I actually read most illness books, a good few years after getting ill. I borrowed  from an American friend (and still have it, I'm a bad person) Norman Cousins' Anatomy of an Illness (1979) - he used intravenous vitamin C, a treatment I'd also tried with positive results. In a more spiritual phase, I bought a book called The Alchemy of Illness (1993) by Kat Duff. My brother sent me Osler's Web (1996), which I still dip into and refer to. And I still love and dip into Susan Sontag's Illness as Metaphor (1978) - who doesn't?

These days, when diagnosed with an illness - any illness - you have a treasure chest of books to try - self-help and memoir - not to mention the stories, some gems, that the internet can unearth. Naturally, you devour this information, you need to know exactly what has punched into your life, derailed you. You are sustained by others' narratives. You need reassurance; you need confirmation (certainly in the case of ME, so great has our fear been of not being believed). Of course, the quality of all of these shared narratives - online and off - varies greatly. There have been one or two ME 'self-help' books I couldn't get to the charity shop quickly enough.

The misery/illness memoir really took off in mid-late nineties and by the time I was writing about my own illness the genre had - in my opinion - been done to death so I veered as far away from it as I could. This did not stop some editors from trying to pigeonhole my novel as 'sicklit'.

There are, I think, many more works of fiction on mental illness than physical illness. Perhaps mentally ill characters are seen as more interesting, they are more likely to behave 'badly' (if you are physically ill for a long time you are dull and boring, not taking part. Or you die.). I did read Helen Garner's novel The Spare Room (2008) - about friendship and cancer - I enjoyed it but didn't think it lived up to the hype (the ill character also has intravenous vitamin C, and she is definitely not dull).

Now, when I read about illness (non-fiction), I want to read about other things, not just the illness. Last year, I loved Elisabeth Tova Bailey's The Sound of a Wild Snail Eating, it is very much about other things. And I'm currently reading The Vagabond's Breakfast by Richard Gwyn, I saw Me and My Big Mouth review it. I don't always share Scott's taste in books - he hates Midnight's Children! - but I'm very much enjoying this. It is about other things.

And the writing has to engage me, always the writing.

What I am trying to say  is that when you are  ill in a life-changing way - and you have stopped being stunned by the event - you will probably hunger for illness narratives; but, later, you simply don't need or want them (unless they stretch out beyond the illness and tell you about the world). I know that people who are not ill will see things differently. The world of illness is new to them, unusual and strange.

***A lovely quote from Kat Duff, which I just found underlined in green pen (can't help wondering how long ago I did this and why green pen): ... Frankly, from the point of view of illness, healthy people seem ridiculous, even a touch dangerous, in their blinded busyness, marching like soldiers to the drumbeat of duty and desire.

The opposite of the moon

I'm not the first to have observed that the fascinating and moving rescue of the Chilean miners has been reminiscent of watching a moon landing. A grainy capsule, images being broadcast from an eerie, alien world, except this is down (almost half a mile) instead of up (250 000 miles). I can't help but worry for the last man to be rescued, waiting on his own for Phoenix to come sliding back for him. I've been thinking of Zola's Germinal, which we read in our second year at uni. I recall re-reading it for an exam, my cousin and I had gone to a caravan in the Trossachs for Easter and would go jogging first thing, study all day and get tipsy at night in front of the cosy stove. Those were the days. Good luck, brave miners, I hope by morning you are all 33 safely out, back with your loved ones. It must be sweet agony for those still waiting, 13 I think. I read this piece in Indy with interest. The book deal is already being sewn up. And Oakley - who donated the sunglasses to the emerging miners - are getting major free advertising. I am curious to know how long they have to wear dark glasses for, how long does it take to readjust? And not to dampen the joy of it all, but ... I hope these miners make a fortune from selling their stories to the media. They deserve it.

Reading French in bed

I've had some pretty crap ME days this last few weeks, I don't really mention them cos it's all so very dull. But recently I was in bed reading Le Scaphandre et Le Papillon with my French dictionary - a huge brick of a book - and I felt like I was Helen Fleet. It was chilling to rewind to to the eighties, in bed trying to keep my French up. Then I felt huge relief that it is now and not then and that I have achieved what I have - my degrees, my voluntary work, my novel - and being a fine auntie to my nephews - in spite of it all. And I thought of those who deal with severe, unremitting ME, year after year after year, and once again I praise them to the skies, wondering how they cope. (I know how they cope, they cope because they have to.) Yesterday, as I was going about my day I felt like a wind-up doll, slowly running down, with not a chance in hell of being wound up again. And more muscle pain than I care to think about. So today is complete rest. And yet I feel lucky.

A week

What a week, physio on Tue and eye hosp yesterday. And more snow. I really hate the snow by now. I want to shoot it or injure it in some way. I hope this weekend to finish reading The Elegance of the Hedgehog. It is pretentious as hell, but I am loving it. I am reading it in English, a bit too tricky for me in French. (I can read Amélie Nothomb in French, that makes me happy.) I learned that, for weeks, I have been doing a piriformis stretch which is too aggressive, I hope I have not made my back worse. My ankle has been numb for ten days, like it's been to the dentist and the injection is wearing off - I have never had anything like this before. And I am sick of NSAIDs and codeine. But my eyes are calm, well, kind of calm, not entirely calm, but calm enough and I continue to taper the drops.

On 'Mme Bovary' & Living with Rufus & Martha

I just watched 'Madame Bovary', it came free with the Independent this weekend. I love Isabelle Huppert, the way she can look plain and beautiful in the same moment. All I could remember from my French lectures was that Emma Bovary hates her husband, there's a guy with a club foot, and she takes arsenic at end. Oh, and Flaubert uses style indirect libre, I remembered that too, how useful! On the subject of unrequited passion, I think I love both Martha and Rufus Wainwright, I wish they could be my flatmates and sing to me all the time.

Unread Books

I am bad at finishing books, this is not the real me, before, I would never not finish a book, it had to be read from cover to cover, every word absorbed. It took me years to rid myself of this trait (plus headaches like helmets), but thankfully, now, I only read what is readable, what I want to read. But often I have a few books on the go at once, none of them really gripping me . . . just now: Tracey Emin's Strangeland, Russell Hoban's Amaryllis Night and Day, and Yann Martel's short stories from before he was famous. I like to read in French, but choose simple language. I love Amélie Nothomb and have just started La Salle de Bain by Jean-Philippe Toussaint. I also like Marie Darrieussecq, but have to read her in English, her sentences are too complex.
© 2006 NMJ