Blue shoes with zips and advocacy for ME

With all the focus on #millionsmissing just now I have been thinking about the shoes I was wearing in September 1982 when I went off to do my (ill-fated) year abroad in France, not yet nineteen. They were blue and pointy with a diagonal zip - I got them in Schuh and later fictionalised them in a scene in The State of Me where Helen is on a ferry returning home from France because she feels so hideously ill. In real life, I came home from France twice - I  actually went back, because my GP couldn't find anything wrong and thought I was homesick (months later, a locum GP discovered I had Coxsackie virus - he'd also had it - he recognised my chest pain, the feeling of having a heart attack - and luckily recovered). I still recall, going up the gangplank, if that is what it is called, on my way back to Normandy, so determined to beat whatever the hell was making me feel so ill - a wee fucking soldier, really - little did I know I was only storing up more hell, not allowing myself to rest. 

I have looked for photos online of blue shoes from Schuh from 1982 but I can't find anything. They were hideous (I also remember watching Boy George singing 'Do you really want to hurt me?' on television in our host family's living room).

I'm not officially involved in #millionsmissing Edinburgh, but I know it will be brilliant. Carol Monaghan MP has taken up the cause of slaying the toxic dragon that is PACE and also Stuart Murdoch from Belle and Sebastian will speak. I may bus/taxi to the Mound event on Saturday - a hop and a skip from me - Edinburgh is very walkable, if you are healthy and able -  I will see how I feel on the day. I was so shattered emotionally and physically after the Scottish Parliament event in January, and I have been advocating for ME sufferers for decades, in one way or another - I really need to step back now and focus on other things (novellas-in-progress, for example).

I was delighted to see that the fabulous Lighthouse Books has a display of books with blue covers in aid of ME Awareness Week - and The State of Me is there (photo nabbed from Lighthouse tweet). It is a little ironic that my France shoes were blue as blue is also the cover of ME Awareness.

I am also delighted that there is a feisty new generation of activists, they do us all proud, many of them advocating from bed with hellishly diminished lives. I do think the climate is changing, finally, though I don't honestly expect a cure for ME in my lifetime. I just hope newly diagnosed twenty-year-olds will not go through another thirty years of life-changing illness as I have done. I always say it takes a  decade to adjust to ME, and I hope soon others will not have to make such an adjustment, as the illness will be eminently treatable if not curable.

To hand wash or not to hand wash...

Have just realised that my new lovely thick polo neck - reeking of wood smoke from the weekend - is hand wash only. I hope it likes life in the laundry basket, it will be there a while, it will take me a day's energy to wash the big bastard. So tempted to shove it in machine on WOOL, but that way tragedy surely lies.

Leonard Cohen: I'm Your Man, a film by Lian Lunson

I came across this 2005 Leonard Cohen tribute  film  via Open Culture.

What a gem, an absolute gem.

The filmmaker is here.

Wonderful clips of Leonard, and my favourite covers are by Rufus and Martha Wainwright. (I also love Antony and the Johnsons' version of The Guests, though not in the film.) 

I didn't know that Rufus and Lorca Cohen - Leonard's daughter - had had a baby girl earlier this year. Can you imagine the gorgeous lullabies she will hear?

And there is this from 1965 - it's like watching a French film, it makes you want to smoke and wear polo necks (even when you are anti-smoking, as I am, I love polo necks though).

Those lovely boys

Last night, two emails from 6-yr-old nephew - who never emails.

'hello'

'how are you?'

I probably won't get another for a year, but these wee fragments make me smile.

I spoke with 10-yr-old last week. I joked with him - is the pilot wearing pants today? He replied earnestly, Yes! and told me what colour of boxers he got for his birthday. Not really dark blue, not really light blue. (Our in-joke - when we played at air traffic controllers last time I had to report him for not wearing pants in the cockpit.)

Three

I have on three pairs of socks and my feet are still like ice. I can't heat up. It's an M.E thing. The heating is cranked up. I am so tempted to cut the fingers off my gloves but that would just be silly. Be gone, Arctic weather front!

Cromwell's a moth

I love cowl necks, cosy and lovely, but they catch crumbs - especially if mohair - and you feel like you have a Captain Birds Eye beard. Not so lovely. Makes me feel like a Tudor (the polo neck, not the beard - yes, I used this line in my book). I am reading Wolf Hall, everyone's called Thomas, it's hard going and my headache was so bad I could barely read at all last week. But the writing is beautiful, quirky, funny and moving and you feel the book is doing you good, you will be enriched after reading it. I'm only at page 160 and I know I will be many weeks finishing it (650 pages). When I googled Thomas Cromwell a while back the keys glitched and 'Cromwellsamoth' came up as the search term. I often think of this.

1984

The jumpsuits in the Observer magazine are horrible. I used to have one - red with gold stripes and bows that you tied on your shoulders and flapping bows at your calves too - but this was 1984 and such things were allowed then.

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.

Not understanding the triangle

Thought this meant DO NOT SPIN, but it means DO NOT USE CHLORINE BLEACH. Could have saved myself the trouble and energy of wringing out my lovely grey dress by hand and almost ruining it. I really must get a maid.

Sheikh it all about

You've got to hand it to the 'Sheikh of National Unity', he wears a robe made up of flags of the different Palestinian factions, and tries to spread peace...

The Truth About Lionel's Gloves

I asked recently why Lionel Shriver wore gloves indoors and have been kindly told by John H that she has a condition which affects her circulation. I had wondered if her reason was medical, or just a quirk or fashion thing. At first, it doesn't seem a big deal having to wear gloves indoors, but I think it would be. Hands are like eyes, not windows to the soul exactly, but they are so expressive, and wearing gloves is maybe more masking than you would think - a bit like being a constant thief. But I guess she is well used to it - like any chronic medical condition, it becomes 'normal', and you work round it, leaving others to make their own truths about you.