Friday, February 27, 2009

early bird, the song

I was up with the birds again, to no good purpose at all. It just goes like this sometimes and is a feature of the M.E. rhythmless dance that a number of us have to keep step with. Sometimes it involves sleeping 12/16 hours, either continuous or staggered, at other times one is awake and wired after 3 hours, the brain speeding along impossible highways, trying in its own way to make up for lost time, and that way madness lies. Poor brain, I let it have its moment, in a few hours it will have run its course. I have just seen a fox streaking across the end of a neighbour’s garden. Sometimes, when I am awake early, I see the deer walk into our garden. I have seen them lift their heads to the cherry tree, looking for sweet fruit, but this year they won’t find it because the tree will be cut down.

I loved the snow and the cold but there is no doubt that this has been a hard winter. I notice that, apart from Brighton twice a week, I am going out even less than before and might almost venture to say that I am looking forward to the spring, just in case the wind turns and with it a measure of strength is given and the Symptoms die down a little. I would like to have a few (if not many) clear moments which, at time of writing, I have not had for many months, apart from a blip just after Christmas.
Well, but I have got a batch of poems into some kind of order and this feels like an achievement, even if nothing very much comes of it.

I have been reading, as one does, about other people with CFS/ME or similarly debilitating conditions. Often I come across the notion that one should not allow oneself to be defined by whatever it is one has. “I may have (whatever), but I refuse to be defined by it,” or words to that effect, is what people say, and of course I understand this and have said it myself. But. Speaking only for myself (for how can I speak for my fellow PWME, we have our own paths and modus operandi), I recognise that everything I undertake is in some way defined by M.E. The way I write, for example, in short, intense bursts or in pared-to-the-bone minimalist style, depending on what my energy is doing at the time and bearing in mind that when I actually do this the sand in the egg timer is, so to speak, running down. Blog posts, being more of a conversational thing, are something else again – I notice, though, that they are often in the region of 500 words, which seems to be as long as I am able to hold on to a particular thread. M.E. informs the style I bring to any activity and it does therefore, to some extent, define me. I think what people are afraid of doing is degenerating into nothing more than complaint and self-pity, but there is a difference between this and talking about what you do or opening one’s throat in order to sing (of the old, the new, the dark, the blue and the glory). We all have to sing, really, one way or another, with our real voices, in order to be properly alive.

I could probably say more but have gone over 500 words, the thread is wearing a little thin and I have to go to the dentist.

Wednesday, February 25, 2009

Poetry and Poo

No really, I’m not just taking the piss, nor am I trying to diss any poets or poetry in general. I was once invited to an evening of “pooetry” where I believe the theme of the evening was to do with matters scatological, but I wasn’t able to go – no pun intended. And I digress.

I am quite up to my eyes in sheets of paper and poetry (mine) as I am storming into Lent trying to get stuff out before the end of the week. Don’t ask why it has to be before the end of the week, some of us have deadlines to meet. This makes me sound quite important, but in fact no-one but me will give a stuff if I don’t meet the deadline. I am not only up against Time, but a whole batch of poems (what actually is the collective noun for poems that are not yet in a collection?) that still need a fair amount of work doing to them. I don’t know how this can be, they seemed quite fine when I last looked at them, but this is how poems behave if they are left lying around for too long.

And then there is Lent. You will remember that last year I put myself into self-imposed Poetry Boot Camp because it was either that or give up chocolate. I know that Lent is supposed to be all about giving something up, but what I say is that as long as it hurts it counts. So this year I will be doing Poetry Boot Camp and giving up chocolate – not to mention the cigs that have unaccountably crept back in (I blame Daughter of Signs, the Icemaiden and TPE and is it my fault that what Dennis Potter so accurately called “lovely tubes of delight” are bad for my cholesterol levels?).

I would very much like Cat of Signs to take on a Lenten restriction but she has never shown much religious inclination, or inclination of any kind that does not fit with whatever she fancies doing at any given moment. The lovely nurse at the vet’s encouraged me to get a new kind of clay cat litter to encourage her to stop pissing in inappropriate places. She likes it so much that she has quite given up going outside to do her more serious business, and she is not particular about whether the serious business goes squarely into the litter tray or flops over the side and onto the floor. She has also decided that the kitchen sink is a fun place to have the occasional recreational piss. I have been told that if there is no urinary infection then we will have to address Behavioural problems. What am I supposed to do – find her a Shrink? Something tells me she would crap on the idea of CBT.

Sunday, February 22, 2009

wild about the garden

Our sweet neighbour came over this morning to talk about our cherry tree. The fact is that it deprives her vegetable patch of sunlight and we had not been aware of this. When the tree first came to us as a wedding present it was a delicate and slender little thing that for many years gave only a handful of cherries. It was hard to get any of them because either the deer or the birds got there first, but I remember the first time I ate one from the tree – the shock of the real cherry substance in my mouth, intense and vital, announcing itself. Even the best of the shop-bought ones had been a shadow of this. Now the tree has grown large and stocky, there is nothing to be done but we have to cut it down so that our neighbour can get the light she needs. I am seeing if there might be a way of grafting a piece of it, to grow elsewhere, there are people here who know about trees.

Me, I never had green fingers, was brought up mainly in a second floor flat so never learned about gardening. In the garden of my first marriage (me being very young), we dug the earth and found all kinds of things buried in it – rusting bicycle parts, broken pottery, a whole tea set of perfectly useable cups with a sunflower motif. We wanted to make the ground good but didn’t know what to do, bought grass seed but it was the wrong kind, hard and spiky, someone called it cattle grass, and that summer was one of the hottest ever and the earth cracked, leaving fissures like open wounds. People said I was lucky to have a garden and that I should look after it and plant things, so I dug a hole in the middle and filled it with daffodil bulbs. They came up in spring like a gold fountain, exuberant, not minding the ragged terrain, but I felt like a Martian who just happened to land on this planet with strange things hidden in the ground and the daffodils were, in any case, temporary guests – the sun came early that year to dry them and the earth was hard as concrete.

My garden here looks lovely, as it happens, but other people do the work in it, not me, and it is as close as one can get to a self-maintaining garden because this is what I asked for when we had it re-planned so as to accommodate the studio. A bit of mowing and weeding is all it asks. It is a little on the wild side to be sure but this, to my way of thinking, is all to the good.

Wednesday, February 18, 2009

Poems and Piss

It was good to get an envelope through the post with a note from the editor of Obsessed With Pipework to say that they were planning to take five of my poems, to be published in the autumn edition. I took out a subscription to this after Ms Pants had some of her poems published by OWP and found myself reading it cover to cover, something I had not felt able to easily do with other, seemingly higher profile, magazines. This in itself was auspicious. I am also taking it as a good sign that the first step of my new year resolution to send work out to magazines has been given a thumbs up. I have also got a couple of new poems writ, and polished up a couple more that were languishing unattended, ragged at the edges or wanting a decent last line.

The bad news is that Cat of Signs has seen fit to piss on the carpet of what we now call the spare room. It’s the room downstairs that used to be the daughter’s bedroom, where we have a small piano and a sofa bed for when friends come to stay. C of S has generally been exhibiting what some people might call attention-seeking behaviour of late, caterwauling whenever I am wanting to attend to a piece of writing, dive-bombing from the top of the makeshift wardrobe onto the sleeping person of Mr. Signs at first bird light and generally howling at the moon in disconsolate fashion, and nagging me for milk, which she would like to have every day, but it is not good for her. I had a long conversation with a wonderful nurse at the vet’s. Cats happen to be her speciality. We need to take on board that she is, in cat terms, getting on a bit. The pissing and caterwauling may be down to a urinary infection but may also be a response to stress caused by a new gang of aggressive cats in the area. Worst case scenario is that she is developing a kind of dementia. I thought that I knew a fair bit about cats, having lived with one for nearly fourteen years but after talking to the nurse I realised - I know bollocks.

Monday, February 16, 2009

a bird, a rose, the jeopardy

I have had a strange weekend, though strange by whose standards I can’t really say, and my life is altogether a little strange when I compare it to the lives of fully able-bodied folk. If one can pull back from the idea that it is unpleasant and one would rather be feeling different it becomes, to some extent, interesting.

I have two novels on the go that I am trying to read, both very different in terms of content and style but both equally difficult for me to focus on. Increasingly, with novels, I find myself thinking that this is ok, the writing ticks all the boxes in terms of writerly craft, I can’t actually find fault with any of it; but my overwhelming response is: so what? Sometimes I skip about, back and forth, and it doesn’t seem to matter much in what order I read it. Talk about losing the plot. This means I get the essence of the author but not the narrative as it is written, I lose the unfoldingness of it.

On Saturday, after the scones and a walk which I knew I was pushing myself to take, I lay in bed, head full of white noise (M.E. head), unwilling to be dragged into what I knew would be a dark and tangled sleep. I had a pressing impulse to stay awake and record the moment. Even though I can barely read a story, my own narrative (it seems) still matters and writing is somewhat easier than reading – as talking, I suppose, is often much easier than listening. I noted that the air outside was quite blue as the light faded. There is a bird that sings, always at that time, as though occupied with some urgent and pressing matter, and I thought about the nightingale in the Oscar Wilde story, how the singing bird pressed itself against the thorn to make the white rose red, all for love. Red for Valentine.

I had fourteen hours of troubled sleep with dreams like background TV that someone forgot to switch off, and by late afternoon of Sunday I was still in PJs. In the evening I went to London to see my daughter singing the blues on a barge on the River Thames, Cry Me A River is playing somewhere in my consciousness, most beautifully, and I think again about the bird and the dark red rose.

On the platform at Clapham Junction, I sat down and had a hallelujah moment: what am I doing trying to write a novel? (do not answer this) Hallelujah, but wtf am I doing – writing as though I am living a normal (cognitively speaking) life? Short bursts of frenetic thought, words that fall out, apparently incoherent, but they arrange themselves into something that has a language, almost unintelligible perhaps, but. Then I remembered that this is how my brain works now; and that nothing matters but the quality of light at any given moment, the bird, the rose, cry me a river (no really, it’s fine). I think this may be as close as I can come to religious ecstasy.

Meanwhile, I have pressing decisions to make about my future and am perilously close to the state of blinding euphoria that impels me to sign up and commit to things (a postgraduate university course - stop me, someone) that inevitably come crashing down on my head.

It is a good thing that I am wearing my purple trousers. They remind me of just about everything.

Friday, February 13, 2009

V Day

Mr. Signs is so romantic.

"It’s Valentine’s tomorrow – lets have a carb fest."

Now, this kind of remark may or may not do it for you, but you have to bear in mind that I have been making poignantly yearning references to the bread and butter pudding that we made at the end of last year. Man of the Moment that he is, next minute he forgot all about the carb fest and said we should go on a spree at the “aphrodisiac food section” (?) of Sainsbury’s.

Somewhere in a box in the loft are a couple of menus from a restaurant in Camden Lock on Valentine’s day in 1985. There were asparagus, of that I am certain, and I think the ice cream was garnished with passion fruit sauce and a spring onion, but I can’t remember what else we had. I do remember, though, that on this night, probably over the ice cream and spring onion course, he proposed to me. On this night also, Daughter of Signs was conceived.

It's not all about the food, obviously. I am not forgetting about the carb fest idea though. Tomorrow I am going to be making these for breakfast

We will be having them with jam and cream, and then we will be walking on the forest, me remembering lines from the e.e. cummings poetry we read to each other at the wedding, eight years after the Valentine proposal, (our children came dressed in elephant suits).

"Girlboys may nothing more than boygirls need"

Happy V day.

(I know this is the second time in a week that I have banged on about scones - they seem to have become something of a motif.)

Thursday, February 12, 2009

Saved by the Bard

I can’t say anything without first mentioning the judicial review of the NICE guidelines for people with CFS/ME that is taking place at the High Court in London at the moment. I was first made aware of this by reading about it over at NMJ’s, and I had wanted to go along, give my presence there, as so many other PWME are doing. As it is, all I feel able to do is bring my awareness to the proceedings.

I am on Shrink duty again today. If nothing else, I have probably managed to bring a degree of enlightenment to him as to the nature of this particular illness, but it has been and is frustrating. I sense that he still thinks of it as a kind of smokescreen for other issues, rather than as a Big Issue in itself that does not live in isolation from everything else but carries its own unpredictable agenda and does not distinguish between good and bad stressors.

Thinking about the medical profession, Shrinks etc. takes me back to the time when my first baby, my daughter was born. It was an intensely joyful as well as an intensely difficult time. She was born by caesarean section after I had been in labour for a long time, in the Mile End hospital which was in such a sorry state that they actually ran out of nappies and formula milk (which every caesarean mother is likely to need at the outset because things take longer to get going). The nursing staff treated us as though we were criminals. Those of us who were unable to get up and fetch a cup of tea from the trolley were told to either “get it yourself or go without” – apply that kind of attitude to other situations and you get the picture. As I wasn’t healing properly the doctor said I needed to have complete uninterrupted rest, and the nurses’ response was to take my baby and shut her in an empty office unattended. Desperate as things were, on hearing her cries I staggered out of bed and hobbled along the corridor to where she lay in her Perspex box next to a room where the staff were boozing and having a smoke. I wheeled her back to my bedside and the next day we checked out, five days before time but I actually thought we might not survive a longer stay.

Various health visitors came to call. My baby had colic and woke through the night so I often took my sleep when she did, during the day. A young (childless) doctor, on hearing me express sadness that my child was suffering the pain of colic, coupled with the way I looked (sleep deprived) decided that I might be about to do myself in and sent a team of health and psychiatric people to investigate. Fortunately they came on a day when I was bright and cheerful, in the company of a friend, my baby dressed in her pink going-out suit, ready to take a walk. The health visitor told me I was not permitted to leave the house until I had talked to the Community Psychiatric Officer and I suddenly realised that baby and I were in imminent danger of being hauled off to a psychiatric unit for investigation and possible incarceration. My friend, who picked up the gist of the situation kept the health visitor occupied while I talked to the CPO who, I discovered, was interested in literature and had a particular fondness for the plays of Shakespeare, particular the later tragedies and a couple of the major comedies which I had just been studying at university where I had been as a mature student. Reader, Shakespeare saved me, or perhaps it was the Prince of Denmark who did, along with various clowns from the Forest of Arden. I was prepared to bend the ear of the CPO with literary insights for as long as it took to convince him that I was absolutely straight-up normal ticketyboo (I had worked as an auxiliary in a psychie unit and knew what might lie in store), and it worked. At the end of an hour or so, he shook my hand and thanked me for my time, giving me a clean bill of mental health, to the chagrin of the health visitor who had been looking forward to something a little more interesting and was miffed that I got off so lightly. Several months later the young doctor responsible for the shenanigans sent a message to apologise. She was pregnant, having complications, and realised how unhelpful her intervention might have been. Which was nice of her. But still, I sometimes come out in a sweat thinking about what might have happened.

The CPO went on to do an Eng Lit degree. So it goes.

Monday, February 9, 2009

the substance

This is life, the very substance of it. I have to keep reminding myself on days when every bit of action or inaction is accompanied by muscle pain: it all still counts – the fifteen-minute walk along a tarmac road to where the forest suddenly becomes thick and the path slopes down, and back again before it becomes too hard; the squeezed orange juice I drink first thing to help my body wake up after a long and difficult sleep with too many strange dreams (last night I lost my passport, my luggage, a folder containing everything I had ever written); and in particular, the people – the voices of my children, always sweet to my ear, the look on Mr. Signs’ face as he steps across the threshhold, life being busy and good for him these days, but always from wherever, he is pleased to come home.

Yesterday my neighbour-over-the-road who is also a friend came on the short walk with me. Afterwards I sat in her kitchen where she quickly made scones which we had with clotted cream and the home-made jam her daughter made for Christmas. A low carb regime is not realistic now, friendship and carbohydrates go together so well in the winter months.

I am revising old poems. This also, I remind myself, is of the essence. It is easy to feel that it doesn’t really count if one isn’t bashing out something new. It does, though – I have resurrected two or three poems that were just abandoned like lost causes because I thought I could never lick them into the right kind of shape. Instead of doing that, I am just pruning and adding a little here and there and remembering that an imperfect poem can do the job as well as (sometimes better than) the perfect one. Sometimes it is the imperfect poem that gets my attention, and I think: this is life, the very substance of it. I have to remind myself.

Thursday, February 5, 2009

celestial crabs

Hoping to get to Oxford tomorrow to see Son of Signs perform with band, but this depends on how much snow there is, especially as we have to get there and back in one night. He sent me a link to something yesterday, the words of which now play continuously in my head. You need to watch as well as listen (thank you, Gawd).

Wednesday, February 4, 2009

Magical Thinking

Apart from wanting to have a magical piece of wood that could be used as my double, like the one given to a girl in my German story book, I never wished for any particular magical power. This wasn’t because I didn’t believe in magic, but because magic was something I lived by and within most of the time. It must have been an elevated kind of magic, the sort you don’t necessarily use for crude personal gain or to make life easier, more congenial – because life was not easy or congenial. When we came back to England from Germany, I was a strange creature moving from one place to another, changing schools with each move, each new place putting me at one more remove and making me stranger. I lost my father en route because my parents separated: first he was on tour, running around on all fours being a pantomime cat, then when he came to back to London he lived in a bedsit. My mother was distracted, career-building, unpredictable, there were girls from Scandinavia, Germany and Spain to look after me and my sister and they were bored, resentful, unpredictable. My school-teachers were sometimes well-meaning, sometimes not, and it was easy to do something that would get you into trouble. There was nothing surer than magic.

I carried it inside me. Story books helped, and Robert Louis Stevenson’s A Child’s Garden of Verses, though only a few of them carried the DNA of magic. Magical Thinking is a reductionist or pejorative term sometimes used by psychoanalytic therapists to describe the strategies used by insecure individuals to ward of anxiety etc. Magical thinking was sure ground beneath my feet and represented the hidden light that lay just beneath the surface of things and sometimes broke out, like a shining behind cloud, or like song that you feel in your breast. It came from the heart rather than the head and radiated down to my fingertips, keeping my hands warm. You could say it was a faculty I developed in extremis, but none the less real for that.

When I was nine I would go into the room I shared with my sister and look out of the window in the direction of London Zoo from where one could hear the wolves howling. A new breed had been brought in from Russia. They looked out of the bars of their cages and found nothing they recognised but the wide black sky and the moon.
I looked out at The Dog, and the Plough, and the Hunter, and all,
And the star of the sailor, and Mars
and pictured the pail that was half full of water and stars, and all was in place, packed tight, the magic, nothing missing. It was the coldest winter for over twenty years and in the new year, in February, a poet who lived nearby put her head in a gas oven and died. She was Sylvia Plath, but I didn’t know about her yet. She and I had the same doctor and she probably went to the same playground, with her two small children, that I went to.

If you lived without any magic at all, life was just boiled cabbage and gristle for lunch, a cold home-coming, a beige carpet with ugly stains in the shape of cockroaches. I made a post box out of an old biscuit tin – cut a slit into its lid, damaged a knife in the process, threw the knife away to lose the evidence (my mother kept wondering but never knew where it had got to, her best kitchen knife). I posted notes through the slit – messages (to whom?) saying, when the moon is blue your wish will come true (meaning that the moon would without a shadow of a doubt sometimes be blue, for it was written, yes in my own hand, and I had seen it in my mind’s eye); and messages that were simply the titles of books I had read: The Lion, The Witch and the Wardrobe, What Katy Did, Five Children and It, The Borrowers, The Wind on the Moon, Das Doppelte Lottchen, Peterchen’s Mondfahrt – and lines from A Child’s Garden of Verses.

Dark brown is the river, golden is the sand

Monday, February 2, 2009


It is both Candlemas and Groundhog day, and you can take it from me that the signs are very auspicious – at any rate, if you live in the south-east of England they are, and if you don’t then I have it on good authority that all you need to do is change the name of the place where you are living and it will all come right. For there is thick snow on the ground and the slow, white stuff has been falling all day. Everything has ground to a halt, as it does in sweet Albion whenever there is anything that one might call weather happening. So people don’t go to work or school or anywhere, unless there is a dire emergency like running out of milk for one’s essential caffe latte or to get a copy of the Guardian newspaper (the latter is Mr. Signs’ emergency, for the sport and crossword pages wait for no man). According to a commentator on radio 4, people are out having fun in parks with sledges, throwing snowballs or just chilling warmly at home and we need more days like this (says the commentator) because we are completely losing the plot in terms of work/life balance and becoming a nation of dull and stressed-out Jacks and Jills. Be that as it may, my life dances to a different drum beat so a bit of weather doesn’t particularly affect me personally, other than worrying about children of Signs having enough winter thermals and son’s bicycle slipping on the ice.

I had planned, though, to get a few things done today and stuff printed off, put in an envelope and posted. But today was migrainey – not quite the same as full-blown migraine but a kind of weaker, younger sister of the real thing. So a nothing-very-much day, other than looking from my bed at the snow that kept falling on the rooftops and swirling around the trees; and thinking about how auspicious it all was because:

If candlemas day be fair and bright,
winter will take another flight;
if candlemas day be cloud and rain,
winter is gone and will not come again

(If I had changed “rain” to “snow” it would not have rhymed).

I have been given a particularly dense and fragrant beeswax candle by the ancient woman who is the nearest I have to a godmother and looks like Mother Holle herself. I will be lighting it.