A couple of good things, a couple of bad things

Yesterday, I returned the dreadful Hystories by Elaine Showalter to the library, what a relief to have that book out of my possession, her cavalier dismissal of neuroimmune illness is simply bizarre. I can't even be bothered to talk about it any more, I tweeted a few times about it last week. I also discovered that local libraries stock food recycling/compost bags, so was very happy as I have just used up the ones the council provided a few months ago up. I was hoping to take out Claire Messud's The Woman Upstairs, but I could not remember her name, I was furious with my stupid head - and it does feel like a kind of stupidity, this cognitive bleakness caused by ME - not the normal 'can't remember what I came in for', more like a database being erased from your head - spaces where facts should be: I was trying to remember her husband's name too, as a way back to her, I knew he was a critic - James Wood - and by the time I remembered, the library was closing... And not only can I now tell the difference between a herring gull and a lesser black-backed, I've learned there is such a thing as a red admiral butterfly *and* a small tortoiseshell. I thought tortoiseshells were only a kind of cat. You live and learn.

'The Missing Shade of Blue' by Jennie Erdal

In Jennie Erdal's brilliant memoir Ghosting (2004) she 'came out' as the ghostwriter for the flamboyant, larger than life Naim Attallah. I remember loving this book and telling everyone to read it. So when Peregrinations mentioned The Missing Shade of Blue to me, Erdal's first novel under her own name, I was intrigued, but  with my mother having been ill it took me even longer than usual to finish, my customary stopping and starting more stopping and stopping.

And I confess I have mixed feelings about this one.

I loved the reflections on the role of fiction and the art of translation, and the gems of information on David Hume - I didn't know about 'the missing shade of blue' - but I found Edgar, the rather limp half French, half Scottish translator who narrates the novel,  unconvincing  and prone to some terribly clunky sentences - perhaps because English is supposed to be his second language - I'm not sure - but 'a worm of panic wriggled in my gut' is hard to forgive. I also found the main female characters - Carrie and Alice - two-dimensional, and  Carrie's 'dramatic' secret feels wholly contrived (as well as there being too much telling and not enough showing).

However, I loved Sanderson, Carrie's husband, the philosopher academic, whom we come to know entirely through Edgar - he's a big, colourful, rude presence and you want more of him, he lights up the book. And in spite of not really caring about Edgar, I did find myself wishing him happiness as the novel gathered pace,  I must've been more engaged than I thought.  So I give this 7 out of 10. Definitely worth reading. And a gorgeous cover.

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.

Cat litter

You know when you shred newspaper to make cat litter, that's how my head feels: all the words and facts and thoughts are chewed up. I am shattered.

Even

Even a minor cut (slicing iceberg lettuce last night, hacked my thumb instead, blood on salad, had to throw some leaves away - my friends are not cannibals, after all) makes me think of how fragile we are, physically. We are just so easily harmed.

Soup

I had possibly been a bit nippy in the bookstore, there was confusion with my Society of Author's discount, there was misunderstanding on both sides, in the end I had to say: I am chronically ill, my brain sometimes has problems absorbing information. Please be patient. I would not usually reveal such a chink in my armour but I was so frustrated at not being able to do the sums. I really get more scatty by the day, it is fucking ridiculous. Totally unrelated, I love that you can make soup from anything. Really. It feels quite virtuous to boil up everything in the vegetable drawer of the fridge.

Light

I love the evening light, I went into the garden the other night, just to look. In a corner, some beautiful wee blue flowers are pushing through, my neighbour gave me the seeds some time ago. They grew into a gorgeous carpet last year. I'm so pleased to see them coming back. This night I stared, I'd forgotten completely their name. I crouched down (my back stabbed me, which I did not like one bit) and touched them and wondered: what the hell are you called? This is what is meant by cognitive difficulties and M.E, it's not normal absent mindedness, it's like part of a database has been erased. There's a hole where the word should be. I can be in a roomful of people and suddenly not know the name of someone I've known for years. Anemones. They are called anemones.

Words

Someone somewhere said that in the novel I did not make enough of the brain fog you get with ME. Maybe Helen Fleet was not so affected, or maybe she wanted to underline the physical (you would need to ask her), but I certainly have real problems with concentration, especially if I am preoccupied by something. Whatever that something is - and especially if it is bad, but also if it is good - my head is expanded with that one thought and my concentration is zapped: I forget things, I drop things, I become ditzy as hell, I can't find words, I'm sure I appear dim. This has been such a week, exhausted by Easter family stuff (which has been lovely), and stressed with eye appointments and some other stuff, city dwelling, I have found myself, at least three times, in important conversations, searching frantically for the right word, and it is simply not there, not even a whisper: the word I want has been quietly erased from my bank of words. And today I remembered a Bowie song, 'Words' I thought it was called and John Lennon had written it, but some googling showed me it is 'Across the Universe'. I get so moved by 80s' (or 70s') music, this is what I was listening to before I got ill, and after I got ill. A lump in my throat. Always.

Pyjama rage

I spent a good twenty minutes looking for my pyjama bottoms last night, cursing their whereabouts, only to realise I was already wearing them. I'd put them on under my skirt earlier cos I was cold.

Taps

I can't describe the fury I feel towards myself when I leave the taps on (again).