Six years on, still getting lovely feedback on novel

Almost six  years on, lovely to get feedback from readers of The State of Me: this from Merry Speece in Ohio:

I just finished reading The State of Me and wanted to tell you how much I liked it. I particularly admire your intelligence and sense of humor and your commitment to advocacy. I enjoyed the story (you are a born novelist), and you did a good job explaining the illness ME. I have been ill for more than 45 years. My mother was also ill; I have no memory of her as well.

Full comment is here.


I see that Merry writes poetry and prose.

And on subject of poetry, I came across Rosemary Tonks in an article last week, fascinating woman, I must look up her work.

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...'

America and the Man Booker

I haven't really given it much thought - whether America should be in the Man Booker - though am probably more against than for - but I like meandmybigmouths's thought no.10.

Have just started one of this year's shortlisted, Ruth Ozeki's A Tale for the Time Being. I can't say I love it yet, but books don't always reveal their strengths immediately. I certainly want to keep reading it.

And delighted to see this great new review of The State of Me up on the Booksquawk review site.

In love with Robert Hass

I hurt my fucking back - again - this time taking laundry from the basket (the tiniest 'wrong' move can fell you, but you can't avoid it as you don't know what it is 'til too late), so I spent last night eating Solpadol 30/500 and reading Robert Hass. I have fallen for him bigtime, his poetry is splendid and I can't believe I had not heard of him before. He reminds me a little of Lydia Davis, another writer I recently discovered (and love).

'It is good to sit down to birthday cake

with children, who think it is the entire point

of life and who, therefore, respect each detail

of the ceremony... '

Robert Hass,  'September Notebook: Stories'

*

And I can't resist this new review of The State of Me. Always pleased when a reader comments on the writing as well as the (hugely important) message about the illness.

Free ebook and a review!

Summer give-away by The Friday Project: the ebook version of The State of Me is available as a free download for a limited period! I was pleased to see this new, rather lovely,  review (4 stars) on Amazon yesterday:  I love the honesty of the review and that the s/he feels bad about pointing out the 'negatives'. 

This chatty, funny and insightful book was thoroughly absorbing. Nasim has done a wonderful service to people with ME, by being very open about all aspects of the illness but never self-pitying nor boring! The reader can only cheer her on whilst she snatches what life she can out from under the debilitating illness. All the characters are written well and the writer has a knack for portraying relations deftly but true. It was truly a joy to read, if sometimes a little heartbreaking.The only reason I haven't given the book 5 stars is that I felt it could have done with editing down a little of some of the inconsequential chatty detail. The author plays with form, which is wonderfully entertaining, but I would have liked to have seen it used more consistently which I think would have made it more affective. For instance the author swapped between first and third person for the first part of the book, but at some point that was just dropped. Perhaps it could have been used to great effect later on, or perhaps that needed to be edited out altogether? I feel mean writing the above though, because this book has been my constant companion for days and I've read it every chance I got.      

I felt I wanted to respond to the points made, not as criticism (a reader's views are a reader's views) but more for clarification. The 'inconsequential chatty detail' made me smile, having just ploughed through Knausgaard (see previous post) where the dialogue is often inconsequential. A favourite scene of mine (in A Man in Love) is a New Year party where the dialogue suddenly comes 'alive', there are conversations dripping with meaning, long sentences, which contrast sharply with the previous, often static, 'purposeless' dialogue. Knausgaard's point is that dialogue *is* often boring and inconsequential, he is not concerned, and in The State of Me,  pared down dialogue (that doesn't move the plot along) is to reflect the utter tedium of chronic (at times, severe) illness.

The points about the shifts from third to first person are a little more challenging  as a great deal of time and energy (I view everything in terms of energy)  was used on these shifts. The technique was not simply 'dropped' as the reader has observed, it was deliberate. I shift between first person and third person throughout the book, third person to show her most ill, isolated times, and of course, the third person narrator has a knowingness that Helen doesn't. ie that 'chronic fatigue' will come to be the tragic misnomer for Helen's illness a decade down the line, that myalgic encephalomyelitis, the neuroimmune process that has punched into her life, will be endangered as a diagnosis, hijacked by psychiatrists. The flitting between third and first was mostly intuitive, it just happened. I also use asterisks a lot - and present tense - to slow down the pace, though the asterisks have been lost in the Kindle edition, but I'm told it hasn't detracted from the experience of reading the novel, but I still prefer the paperback version for this reason, while delighted that people can also read the e-version. Still, re. the shifting views  being 'dropped', it is always interesting to hear how your writing is perceived. That is the whole point!

Enjoy the free ebook, it is only for two weeks. Please do write a review on Amazon or Goodreads or blog or Twitter if you can. Reviews are hard to write  (at least, I find it hard) and I always appreciate when people do write a review, even a very short one.

*Just to say the book is only free via Amazon UK and iTunes UK.

A Norwegian novel & a knighthood

I love the time between Christmas and New Year. It feels like the whole world is resting. A Norwegian friend told me about this novella: The Faster I Walk, the Smaller I Am by Kjersti A. Skomsvold. The writer  has had ME, my understanding is she has more or less recovered, but I do not know the details of her illness, how long she was ill for. It is unusual to recover fully from classic ME, but Norway is ahead of the game, so maybe she rested adequately from the start, giving herself a better chance of recovery. I'm told she was in a nursing home for a year.

It's a quirky wee book, makes you smile out loud, though it does get a bit repetitive, with the confusion of remembered events and imagined events, and past and present blurring. Sometimes, it can feel a bit like a collection of quirky observations and memories without much meat, but it is short, and eminently readable, certainly worth reading for the drollness, and the absurd observations made by the main character, Mathea Martensen, an old woman approaching death.

It received a first novel prize in Norway.

Writers need to be observers and being ill and housebound/bedridden is perfect for observing. I could sense that some of her observations had come from her being ill. You become  a still point while life goes on around you in a blur. Skomsvold has also written a fictionalised memoir (at least I think it is fictionalised) about her illness, Monstermenneske, which translates as Monster Human, she feels she is no longer human but disappearing into something else (so my Norwegian friend tells me, she is reading it just now). I look forward to reading the English translation when it is out. My friend knows the translator a little. This same friend brought over gravadlax last week,  it was divine.

I read a few lovely things about The State of Me on Twitter over Christmas, and I especially liked this blog review: 'One standout books from the first half of the year was 'The State Of Me' by Nasim Marie Jafry'. 

... If you fancy some tales of knights in shining armour, you may like to know that Professor Simon Wessely has just been knighted for 'services to Military Healthcare and to Psychological Medicine'.

The Honours list is of course good old boys patting other good old boys on the back, 'no more than postcard pomp' as Tanya Gold says in the Guardian.

Owen Jones also has wise words on the whole pantomime. Danny Boyle has sensibly refused his, as writers and artists tend to.

I'm not sure what those with Gulf War Syndrome make of this knighthood, though I can hazard a guess, and now that Simon is Sir Simon I'm sure we in the UK can look forward to further conflation of my illness - the neuroimmune illness ME - with the 'medically unexplained fatigue' that responds to Simon's favourite therapies of CBT and GET - therapies rejected by the Norwegian Health Directorate. And to hell with those with severe/ongoing ME whose lives continue to be blighted, to a greater or lesser extent.

We can only look forward to the results of international research - Norway, for example, where clinical trials of Rituximab are going on - and conferences like Invest in ME, which strive tirelessly to educate.

And we have the biobanks in Oslo and London, established this year.

I need something funny and this clip from Family Guy - 'that novel you've been working on' - always makes me smile.

And more lovely book suggestions, from Lesley in France, I always love learning of books I had not heard of, though I have so many on this year's still-to-be-read pile, God knows when I'll ever get round to any of them!

When

When someone who knows little about the illness reads my novel and enjoys the story *and* learns - and gives 5 stars - I am very happy. A lovely wee Goodreads review. Thank you, Björn.

A sight for sore eyes

Am boring myself rigid with all this ME talk last few days, I'd much rather talk about books and writing, and not be in tears, but the quackery and fuckery MUST be challenged, so that we can have peace to live our lives. Really. And this is just too gorgeous not to post: 

Myalgic Encephalomyelitis: International Consensus Primer for Medical Practitioners 2012

A wee snippet:

Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.
 
Solution
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

See how much progress scientists and doctors can make when the lunatic fringes - yes, it's unpleasant to be unfairly labelled, isn't it? - Wesselyites, be they doctors, journalists, or members of the public who swallow any narrative presented in a newspaper article - stay the hell out of it!

The Primer link is really worth looking at, it is easy to read, lovely colours, not drab and clinical. It explains why everyone gets so upset.

Thank you.


* And a lovely new review of The State of Me. I like that Katie recognises the writing of  it half killed me. I'm not sure that everyone does.

Tra-la-la la-la

The Medical Research Council (MRC) is finally wising up, it would seem, just a shame it has taken thirty years, and so much damage done, but it's now seeking to fund more biomedical research: ME Association has the details.   (I can't help thinking that the MRC probably feels it should get a Blue Peter badge for its charming recognition of ME as a neuroimmune illness but that's just me being jaded and cynical (I wonder why).)

And I found this review of The State of Me, had not come across it, very pleased that the reviewer considers that 'the success of the novel is due to Nasim Jafry's wonderful voice, which is wry, consistent, clever, and observant. A few carefully chosen details convey a great deal'. 

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.

Educate, educate, educate!

Have been so preoccupied with my mum being ill this last ten days that ME International Awareness Week has had to go on the back burner. Scott blogged this on Monday and it was nice to see this review going up on Amazon and Goodreads. I like reviews that quote from the book - once I knew the novel off by heart, but with time you forget. Nice to see snippets and be reminded of what you wrote.

I managed to attend the ME Awareness Cross Party Group event at the Scottish Parliament last night, organised by Mary Fee MSP, which I hope got more MSPs engaged, though I'm not sure how many attended (mine didn't, disappointingly). I really was so wrecked, in that zone of feeling outside everything but somehow you chat through it all. I cheerfully told Mary that I'd voted SNP in the council elections (though I'd swithered in the booth); I hope she understands my mishmash of a head - true cognitive dysfunction, momentarily confusing an MSP you know is Labour with your own MSP who is SNP - and that she didn't go home and burn my book.

The great thing about an ME event is that when you have to suddenly sit down on a trestle table, or the nearest thing, no one bats an eyelid. I took along a copy of The State of Me to gift/donate and gave it to a charming young woman  who has been ill for fourteen years. She looked like a Southern belle, I was struck by her demureness.  I didn't mix as much as I would have liked to, but I did meet some inspiring people and left with a feeling of hope. There are, thankfully, enlightened medics (I heard Dr Greg Purdie of NHS Dumfries and Galloway speak for first time), politicians and teachers (Can you imagine the horror of your sick child being forced to attend school?) out there, but not enough has changed since my diagnosis in 1984 - so much time and money wasted on bogus  'research', too many shutters coming down. Yes, there are chinks of real progress, but we still have a huge uphill task, we  need to educate, educate, educate - and those in the dark need to want to be educated, they need to come forward, it's a two-way process. Otherwise we are just preaching to the converted.

Thanks again to Mary Fee, and the hardworking charities who attended, I didn't manage to look at all the stalls and missed a demo of a fascinating VLE (virtual learning environment)  project in development from Perth and Kinross for children who are missing out on the school experience (not just educationally but also socially) because of illness.

And the Garden Lobby is a gorgeous space.

* Just heard that 17 MSPs attended, good news indeed!

** ME Research UK's summary of the event.

Three things

Three things I've learned:

• Balsamic vinegar is a bastard if you spill it, you get an ice rink on your kitchen floor.  

• My new printer (Christmas gift, old one was gubbed for six months, it was printing stripes down the margins) only works if I switch it on before laptop. Otherwise, I get relentless, rage-inducing messages about unsupported ports.

• Voltarol  deep heat treatment is more helpful than diclofenac tablets. I am pleased.

And sorry to be  a book bore, but I just saw this on Amazon.

All the fun of the fair - part one hundred

Just over three years ago, JH wrote a rather confusing and contradictory Amazon USA review of TSoM, which, of course, she is entitled to, but I understandably took issue with her saying the novel 'did more harm than good' (the book hammers home that ME is neurological, and not just 'fatigue'). When I saw a new UK review go up today I was curious  - and then most surprised - to see JH had posted the same USA review from 2008 -  though considerably more mellow than the original - 'What a shame that such a brilliant novel is so let down by poor quality medical information on M.E' - edited for the hundredth time, perhaps - on Amazon UK 2012.

Very interesting that it coincides with BBC Alba documentary (which seems to be on youtube for now, so I guess it has made its way to Australia). I mean do people usually leave three years between posting the same book review? Is she suddenly afraid that my novel is going to lead UK readers astray?

So I'm switching comments off on this post, cos I truly can't be arsed with it all, but just leaves me feeling a little sad. (And there is every chance, once JH has made her  point, that TSoM, an autobiographical novel - best read with an accompanying list of political/medical facts - or best not read at all - will have - once again - edited/removed the review by the time this  blog is posted).

But she has made her point - and I am making mine.

* 9 March 2012, Goodreads  also now carries this review, demoted from 3 stars to 2 stars, how will I ever sleep again! Seriously, this reader's failure to contextualise the novel is astonishing, and her attempts  to discredit my portrayal of ME are more than a little insulting not to mention bizarre.

Two lovely things

Congratulations to Kitty Aldridge and the other winners of the Bridport Prize 2011, announced yesterday! I was v. chuffed to make the shortlist of 100 (out of 6000 entries) in the short story category, a long time since I had written anything new. Also, delighted that The State of Me has been in top 100 paid Kindle literary fiction for last month (with occasional dips out). I'm sure the bargain 99p has something to do with it.  A nice short Kindle review here.

Crafty Green Poet reviews TSoM

My tooth which seemed better has been louping since Saturday night so off I go back to dental hosp. Meanwhile, a review of The State of Me from Edinburgh poet, Juliet Wilson, who also blogs as Crafty Green Poet.

A review from USA , & an Israeli novel

Thanks to Janis in USA for this interesting review of TSoM. I like her inclusion of other works that deal with illness. It really is lovely to still be getting reviews 30 months after book came out. I don't tend to write my worst days here, but I have been unable to do much today at all. I went outside for five minutes, it was freezing and the daffodils have been battered by the gales. I kept going back to bed, but I hate the feelings in my muscles, so I got up again. I went to the sofa and tried to read but my arms hurt holding the stupid book - no, not true, it's not a stupid book, it's a rather good novel called CrocAttack! by Israeli writer Assaf Gavron. Then I tried to 'meditate' - ie lie with eyes closed, but I can never empty my mind, NEVER - with some crappy New Age music - a CD I got in San Francisco in nineties - I feel like a parody when I listen to it, but it is undeniably relaxing all that cheesy tinkling of water.

Short and sweet

Had an email yesterday from someone who had just read The State of Me. It's always lovely to get feedback on the book, and especially nice when someone comments on the writing over the M.E content. This reader said: 'I love your writing: phrases like the two youngest bridesmaids dart round the table like cerise goldfish are beautiful and perceptive, and there were many like that - startling in their freshness and accuracy'.

What's interesting is I hear that sentence about the bridesmaids almost as if for the first time. There's a point where you almost know your book off by heart, but as time goes on, the words slip away, and like everything else, the memory becomes fainter. This reader also thanked me for 'spending the energy it must've taken to write it'. After the last couple of days of feeling a bit mashed up - physically and emotionally - with my contributions to an M.E thread, this was lovely to hear.

Peregrinations' review of The State of Me

Am very pleased that Lesley of Peregrinations enjoyed The State of Me. Lesley is Scottish and also studied French at uni in eighties, she now lives in France. Lesley's mum is going to suggest TSoM for her book group. I love the word of mouth route that makes books go round - please excuse this terrible pun.

Review of The State of Me by Nicky Reiss

Thanks, Nicky, for this lovely review of The State of Me. It has made me smile - Jana's comment on circumcision - you really do forget what you wrote all those years ago. Nicky, who has previously worked in Rwanda and DR Congo, had to give up her job due to ME.

A review from Japan...

This reader in Japan was initially reluctant to read TSoM, thinking it would be an angry misery memoir, but she seems to have found solace in the book. I am happy: it reinforces for me the point of presenting my story as fiction.

* I had a nice email from Rachel M, she is now in Australia, not Japan, she is Japanese Australian. I had thought she was in Japan from the little I had read of her blog.