Stormy Weather

We are probably in deep trouble.  Things have been happening.  I have noticed this before and kept quiet, but now everyone can see: many parts of Albion are under water, we are storm-wrecked and even respectable politicians are speaking about climate change and how when the dice are loaded it is time to acknowledge that “something is going on.”  It has been suggested to me (by someone I happen to hold in high regard) that if I were to begin blogging again it might in some way help to forestall the worst-case end-of scenario.  So that’s why I’m back here, doing my bit to save the world.  I can’t make any promises, but we’ll see how things shape up.

 

Blogging is like sex.  I can say this with some authority, having been away from it (the blog, I mean) for some months.  The more you do, the more you want to, and if you stop doing it you begin to lose the urge to the point where blog-celibacy becomes the new normal and if there isn’t a pressing reason to do it then why bother?  When I began this lark there was no Facebook or Twitter on which to fritter one’s time and attention.  There was just this talking into mysterious cyberspace where people may or may not be looking and listening and there was the sense that one was doing something a bit weird because one’s friends and familiars didn’t do it and the general thinking seemed to be that only perverts and very important people did it.  Then suddenly everyone did and now if you send a poem somewhere they automatically assume you have a website.  We are all promiscuous now. 

 

I never did come thinking I had anything particular to say – that was for people who wanted to write essays or the big Novel. But I was happy to go with the John Cage method of having nothing to say and saying it.  These days I do have things to say, but I am not saying them because a) there are people who might keel me if I did and b) I have discovered that it is possible to leave things unexpressed and still exist with a kind of equanimity.  Someone very dear to me, a writer whose name I can’t mention even though he is dead now because I might be keeled if I did, came to the end of everything he had to say and stopped writing.  It was the beginning of a long, dark, annihilating end for him, and when I’m on my way out that’s not how I want it to be.  I’m still doing poems and working on the novel, albeit so slowly that no-one would know, but I’m hanging on by the skin. 

 

I still have M.E. and until they find a cure or a way of addressing the symptoms, dealing with this is a large part of my life’s work and there are many days when all I can reasonably expect of myself is cloud-and-sky-watching from the bed or the adjustable chair in the living room.  It sounds quite nice when set down like this in black and white, but really it isn’t – not when one wants to be doing and writing, and also it isn’t necessarily sky-watching as the Normals might think of it, because one feels very ill.  FYI that is what we call those of you who live without chronic illness: Normals.  Makes us sound a bit special, perhaps, like those in the Harry Potter books who are possessed of magical abilities, as opposed to the Muggles who are just ordinary.  And I suppose we do develop certain faculties.  But we’d trade them in a breath to be a Muggle sans M.E. 

 

Am I back?  For this moment, it looks that way.  And the storms have died down. 

**

Before Winter

Time flies – is that the date?  But look, I have been hellishly busy with matters arising.  Ok, I have had an autumn relapse and barely left the house, but living with M.E. is a full-time occupation – some Sylvia Plath lines come to mind: I do it exceptionally well, I do it so it feels like hell.  It feels closer to the truth (though less poetic) to say that I do it so it feels just about ok. I no longer care if what people have is a vision of the genteel invalid lifestyle.  If you want the the nitty gritty about living with M.E. you can easily find it but I have done my time at that particular coalface, I think.  Just picture me a bit (but not unattractively) off-colour in soft yoga pants  looking out over treetops with my notebook, a china cup of Darjeeling on a tray, some thin arrowroot biscuits on a plate and a flaming chrysanthemum in a slender vase.  The yoga pants are true, the rest not so much, especially the arrowroot.

 On the weekend we moved our bed to the back room with the best view.  Son, whose room it was, came to help.  So I really do look out at treetops and sky and I am happier about this, and the new, uncluttered space, than I can begin to express.  New spaces always promise new possibilities. Soon, very soon, life gets (relatively speaking) busy.  The writing and the workshopping are wanting one’s focus and vitality.  It is the lovely Daughter’s birthday this week and we will be heading to the Smoke for a small family gathering and sleepover.  Next week we will be going away for a while to the Jurassic coast and after that we will be in deep, dark winter. 

 It may be for these reasons, and others which I don’t here identify, that I go blog-silent for a space.  And if that happens you will know that I am not dead, but sleeping, like Snow-White after biting on the poisoned apple.  I am as pretty as she, and as stupid.

woz ere

After Space Odyssey.  But instead of a sheer monolith there are two identical concrete posts sticking out of the ground.  Each has a vertical protuberance which might (if looked at in the wrong way) represent fertility or spirit of regeneration.  There are no apes breaking skulls and throwing bones into the air - just me having a walk and remembering how I used to sit under the oak tree here when these posts were part of a bench.  It was a good enough bench but one part of the seat fell away and was not replaced so sitting on it was not as comfortable - though this was not a reason, as far as I could see, to remove the rest of the wood, especially if you are not going to replace it with something.  The empty posts have been there for some time now so clearly there are no plans for a new bench.  But no plans to remove the posts either and they look kind of - emasculated.  Either that or disembodied, like a couple of ghosts who have lost their way to the hereafter and hang around to spook us.  Conjoined twins who have lost their conjoinedness.  This is not some inner city blasted heath, it's the Ashdown Forest (this bit on the edge of a golf course) with proper conservators and the kind of people who would report this type of thing.  Perhaps someone thought that they would do nicely as an art installation.

It isn't as though I have great memories of sitting on the bench, beautiful as the surroundings are.  I wouldn't have wanted a bronze plaque on it saying "in memory of Signs who had so many happy moments here".  I was usually trying to find some strategy for dealing with M.E. and all its attendant symptoms plus crushing fatigue.  It isn't far from Signs Cottage so going there would often count as my walk and activity-of-the-day.  I think it was probably here that I first began talking to myself.  It came from looking up and saying things to the oak tree who was not often in the conversational vein, so I made up the responses, which was not unrewarding.  But it was not fun either, even if it might have helped with the poetry.  I do not associate this ex-bench place with fun.  I spilled a few things that were never brought to utterance anywhere else.  The twin ghosts are not saying anything.  But they (and the oak tree) are guilty of harbouring my secrets.

Consider the Lilies

 

I have been following someone on Twitter who is living, with his partner, a shoe-string existence, house and pet-sitting, couchsurfing or camping out in a tent.  By hook or by crook they earn a bit of money here and there, but mostly they live (quite cheerfully, it seems) well below the poverty line.  It’s partly choice – they don’t want to make the compromises necessary to secure a regular income, and partly necessity – they weren’t earning enough to pay the rent on their flat.  I keep following because I want to see how long they can keep this up and whether they end up making their fortunes, as I think they hope to do, from various projects they have on the go.  It seems to me that they are exercising a kind of biblical faith in the idea that their needs will somehow be met.  My interest isn’t just the vicarious thrill of living through other people's adventures: I feel a parallel situation in my own life. 

 

If money is a form of energy then perhaps one can look at physical energy/vitality as a kind of money.  If so, then I am also living on a shoe-string.  Sometimes there are long stretches of almost nothing – a few pennies here and there; or there is money in the pot but I spend it all on one activity.  I had a week or so recently when I thought I was flush, but I misjudged.  I went for dips in the sea, did some workshopping, saw people, took walks.  It can be like going into a restaurant thinking that £20 will cover everything and being landed with a bill for three times the amount.  And emotional stress is like the leak in the roof that might cost hundreds of pounds and puts you into debt.  Actually, I am nearly always in debt.  I don’t put hours of rest into the black hole of the energy deficit, I spend what I have when I have it - blow the lot.  I am deep in the red and ignoring it.  Well, not quite.

 

Last night Mr. Signs and I went to a friend’s book launch in London.  What is it about coming back from the Smoke that always makes the journey feel twice as long?  At Victoria station I bought a special offer large packet of Revels and another of Minstrels, knowing I would need the sugar surge to keep me upright.  We ate the Revels last night and I am making my way though the Minstrels today.  Sugar, chocolate etc. is like borrowing from a loan shark to deal with a pressing debt or to buy drugs (coffee is also a loan shark, but more of a gentleman – there is room for negotiation).  On the train I sat opposite a woman who had a stonking great hardback of scientology guru L. Ron Hubbard’s ‘Dianetics’.  I flashed my slightly smaller hardback of my friend’s new book and saw her look wistfully at it before falling into an open-mouthed sleep.  I noticed that her carefully belipsticked mouth was neat and pretty, and why this should have struck me as poignant in the circumstances I am not sure, but sugar probably had something to do with it.  I was alive to nuance.  A very drunk woman staggered along the aisle wanting to know if the train was going to Balham, which it wasn’t (opposite direction) then pointed ferociously and with intent at the alarm button, but because she was so drunk she kept missing it.  This kind of thing is no more or less than one expects on the late train home. 

 

Why am I here when I might be working at the novel (it is growing at roughly 1000 words or so a week), washing the pile of dirty dishes (also growing) or lying in bed paying into the deficit?  In part because I recently contributed to Scintilla Poets in Conversation, which put a link to this blog, so it seemed fitting to put up a post.  But also, dear Reader, it’s good to talk.  Why else would I have carried on doing this for six and a half years?  Hang the expense.

 

On we go – me and the two hippies who are slow-travelling on a journey to god knows where, as we consider the lilies of the field.  I will be doing a reading with the Green Room Poets at the Poetry Café in London on Friday – admission is free, and there will be a ragtime pianist, plus the Daughter who will be singing the jazz and the blues.  So be there – in spirit, if not in body.  And wish me luck and potent chocolate for the journey home. 


(Photograph courtesy of the Daughter, taken at the Petrie Museum where the book launch was held).

Loungewear Monday

I spent the morning re-fashioning a poem for tomorrow's workshop.  Result: something better than the original but I can't be sure, I am still too close to it.  I would have liked to carry on with other writing but really, a morning's work is the most I could do and in order to do it I had to not get properly dressed but go straight to it after my morning coffee before the small egg-timer of energy substance ran out.

I am still in my brown yoga suit, which serves for sleepwear on cold nights and also as loungewear in the daytime when one is not going out or expecting to receive guests.  Loungewear is a delicious word, all the better for being a euphemism and, in the context of my life at any rate, completely ridiculous, especially as I do not have a lounge but a sitting room.  Leisurewear was also a contender but perhaps taking it a step too far and when I am doing Leisure I get properly dressed.  I find that I am missing my purple 'crushed-silk-effect' shellsuit trousers and can't remember why I eventually decided they had to go.  I could wear them anywhere - in bed, outdoors, with a sweatshirt or with cashmere jumper and pearls.  I have looked for something similar on eBay, without success.

There is a thin layer of snow on everyone's garden shed.  Winter is not loosening its grip yet.

the other life

When going through the notebook, one often comes up against the self that wrote things one has no memory of writing.  It happens because I tend to use one notebook for everything, including journal-writing, the ongoing prose thing (I will not say the N word) and poems.  It works best for me that way.  When one notebook fills up I buy another of a different colour. 

Much of what I write in the notebook is not shared with anyone and there are good reasons for this.  But I have recently felt the impulse to communicate something more about the reality of life with M.E., not so much on my own behalf (I already do this) but because I know people who have it in a more severe form.  They live, you might say, in "another country."Very occasionally I touch its borders.  The fact that I set this down is testament to the fact that I am, at time of writing, in a stronger state:

The slats again.  I see the sky through those, and only if I have been awake enough to ask M to open them.  In the daytime I don't like to be shut away in the dark.  Sometimes I ring his mobile from the house phone, or I ring the house phone from my mobile, on days when he is working from home, downstairs or in the garden studio.  I say, please can you open the slats for me?  And if I know he is coming up I ask for a drink of mint tea.  If I get up too quickly I feel faint, dizzy and sick.  That is why M walks up two flights of stairs to open the slats so I can see the sky through them.  Often there is just white, and raindrops on the window pane.  My eyes are still hungry for the light.

If it is a bad day and I know I will be lying there for a long time, I ask him to lift the blinds completely.  Then I can see the branches of a tree across the road, and I can see the tops of tall evergreens further away.  The more I raise myself the more I see.  But if I carry on lying down there is mostly just sky.  That square of window has been witness to what no person has ever heard. 

What is the sound that comes in the silence from someone who has looked out of the same window at the changing sky for many years?  What is the sound of one hand clapping?  It is nothing.  It is nothing.  It is the sound of time that moves past in clouds, in blue sky, in moon-bright or moonless, it moves through seconds and minutes and days and weeks and years.   One time you looked at the sky with a child's warm head near you.  Then the child was gone.  Or you looked at the sky while hearing your daughter's voice as she talked on the telephone and you smelled the tobacco smoke from the cigarette she was smoking at the bottom of the house.  Then the voice was gone.

I cannot begin to express how the outline of bare branches against the sky consoles and grounds me - joins me to the earth where I live so precariously.  If someone were to come and cut down the tree it would leave me emptied into sky.  All of us, those people who are like me, fear death.  We fear it because it stalks our living, our lives.  And the truth that has no strength to speak its name is that twent-five per cent of two hundred and fifty thousand of us lie each day in almost complete darkness, and no-one knows what to do for them.  They are too sick to live, but still they live, and though some might choose to die - to have death pure and simple rather than life that is deathly - still many do choose to live the life they have, even so.  They greatly desire life, and they love it and grasp the nettle of it.

Sometimes when we lie there looking at sky, or at the slats or curtains that keep the light from hurting (if we are not strong enough for sky) we feel connected to the earth, we feel her bones, her ravaged body, we put our mouths to the breast of the earth.  Her milk is poisoned, her body violated, she is holding us to the best of her ability.  Look how the black branch puts out shoots.

My road is an unadopted road, it is rough and uneven so not many cars pass by.  People walk their dogs or parents come with children.  These are the voices I might hear.  I miss the cockerel.  When I first came to this house, this room, a cockerel sounded each morning many times over:  cock-a-de-doo!  He annoyed the neighbours but never me.  I loved him from a distance for his voice which came into my consciousness like the sound of someone beloved, I could sleep through it or when I was awake it put life into the morning.  He has been gone for a long time.

spoon-management

Funny thing about Christmas cards.  If you live at a distance from me you are more likely to get one during advent than if you live over the road or next door to me.  This is because when the weather is inclement, which it mostly has been this year - if not raining then perishing cold - it is often a step too far to deliver the cards by hand through the letterbox.  If you live in another country it is also touch and go whether the card will arrive in time because that means going into a post office and queueing.  For the rest, I can do everything from here: write, put in envelope, affix stamp - and then Mr. Signs posts them for me.  It isn't as though I never get out.  But when I do I have a kind of tunnel vision.  First I have to actually get to the car, which may be parked a short distance away because how things are in this road - it's everyone for themselves and you park wherever there is a space, which might not be near your house.  If the windows are iced up there is that to see to - back to the house for a bucket of hot water to chuck over the car or time spent scraping the ice off.  Then there is the car to heat up so as to make it bearable to sit in - if the car actually starts up, which is not always the case when it is cold.  If I go into the nearest town I have to find somewhere to park that won't leave me too far from shops or having to negotiate a steep incline.  The village is easy as long as you just aim to get to one place rather than attempt both chemist and health shop in one trip.  Bearing in mind that adventures of this kind have to be thought about when you are a few spoons* short of a cutlery set, you can imagine why I have finally succumbed and begun to do a bit of serious online grocery shopping.  It actually works quite well, though they didn't have the particular kind of celery and organic broccoli I ordered so substituted those for bog-standard kind which is fine but I was still charged for the more expensive items I asked for.  A quibble, perhaps, but something else to sort out.  Pleased to have got a fridge and vegetable rack stocked up without setting foot outside the house.  Not pleased that I forgot to cancel my Abel and Cole order so was completely vegetabled out yesterday until I managed to offload some potatoes, carrots, tomatoes, onions, turnips and green stuff onto my neighbour.

*spoonie = someone with a chronic, debilitating illness

the day today

I don't know about you, but I can't wait to hear results of Rituximab trials for people with PBC and M.E.  If you don't know what I'm talking about that's probably a good thing.  There will be a time when people look back to this as a very dark age, before lovely Research blazed a trail that found methods of treating symptoms of those with delinquent immune systems.

Meanwhile, I am back in retreat-mode with post-exertional neuroimmune exhaustion.  The view from the window is good but my camera is out of battery and Mr. Signs and his iPhone are not here.  Beside me are several packets of Christmas cards and the latest issue of Mslexia magazine.  Downstairs are rooms full of mess and muddle and a chicken that is hoping to be roasted tonight, but right now standing up does not feel like a good idea.  I am not sure if anything other than lying flat is a good idea.
Actually, yes - eating chocolate-covered marzipan is a very good idea, even if only in the short-term.
Poetry workshop tomorrow is out.  Choir practice is a don't-know.  Family party for my niece's birthday on Saturday.  If I am to make that I will have to pay beforehand with sufficient non-activity.

No vegetables to go with the chicken but no way to get to the shops today.  Damnation.  But perhaps there is a stick of celery, one sweet potato and a few beetroot.

Advent now.  I do want to send those cards.

Being Mrs. Pepperpot

I am in Brighton getting the flat prepared for people coming to stay.  After driving here I knew I could go to the nearest Co-op and back because the walk would be flat, but no more.  They had no lettuce or any vegetable other than Savoy cabbage and the bread was Warburtons thick sliced - perfect for bacon.  So, a supper of bacon sandwiches with decaf tea, two cherry tomatoes.  This morning, fruit and coffee plus more of the same, or I may get a takeaway from the Moroccan salad bar. Then back to the forest for my book group.

I have been thinking about Mrs. Pepperpot who is Pepperpot by name and also shrinks to the size of one, conveniently or inconveniently depending on one's perspective, when her husband is out at work.  By hook or by crook she has to negotiate the tasks of the day, e.g. housework and the making of pancakes against seemingly insurmountable obstacles.  Fortunately she has this gift, that she is able to converse with animals and seems generally in harmonious relationship with the natural world, and even inanimate objects respond to her energetic commands.  Her predicament may have some resonance for someone with moderate M.E. who might appear to the world as a normally-functioning person and might well choose Mrs. Pepperpot's affliction over her own, for Mrs. P is in robust good health, whatever her size.  She also brings a cheerful acceptance to her predicament and this helps her to be creative and inventive.  Well one does what one can, and I enjoyed the bacon sandwiches.  But it is half past nine in the morning and I can already feel myself about to shrink.

M.E./Parmigiana

Two things on my mind today: M.E.-related stuff and Aubergine Parmigiana.

M.E. politics is so big and so deep and so messy that it's difficult to even begin talking about it.  M.E. is a neuroimmune disease - not a mental illness, not psychosomatic, not the same as generalised chronic fatigue.  This is known, recognised, understood, despite the clear necessity for continuing research.  There are those who find it very important to distort or suppress the truth.  Meanwhile thousands continue to suffer without medical or social support - some in almost unimagineable conditions.  Worth remembering the next time you read about M.E. Militants. Yes, they have sent journalists death threats.  Not good.  How is it that they have become so enraged?  And why?

Ok, food.  Family (including one vegetarian) coming for lunch on Sunday and I'd like to find a way of making the above, but without all the faff of frying each piece of aubergine because this is a long process and I can't stand for long periods (orthostatic intolerance, as any PWME fule kno).  I am thinking of cheating and baking the aubergine first but am open to advice - and suspect there may be one or two looking in here who can give it. 

Thanking you in advance (I'm lookin' atcha, Madonna!).

This Li'l Light

We find ourselves in birthday territory again.  I say 'we' because sometimes I find I think of myself as a plural, almost as though there is the 'I' that carries on with the business of daily life and another 'I' that observes it.  A morning of writing with two writerly friends with whom I have met for many years.  We meet, if we can, once a week and write without workshopping.  We do this for about an hour and fifteen minutes and then share what we have written.  We honour each others' birthdays - so the lit candle in the scone is for me.  There is my hand holding the knife, my hard-backed turquoise notebook in which I will soon (after eating the scone) write three pages of words, mostly inspired by thoughts about the moon because of the birthday cards (here is one).

The writing did not come easy, the inner flame, compromised by my unwelcome but faithful companion Fatigue, was low and it is easy to lose the plot.  Poetry is sometimes forgiving about this because the plot of a poem is always just whatever is happening in the poem and one doesn't even need to know what that is.  Sometimes, even with the meanest measure of vitality, it is possible to find oneself carried along with the flow of words.  And then there is this magic, that where there was nothing, now there is something.

It is that small candle, though, that has stayed with me.  A flame is a flame.  I have been thinking about the many extraordinary people I have come to know - those who live with the more severe kind of M.E. Whether they have been made extraordinary by the fact of having endured conditions that most people would find unthinkable, with little support, scant respect and an uncertain future, or whether they were already extraordinary I don't feel the need to speculate.  I just feel lucky to know them - see how they shine.

Hearing Voices

They used to come the minute I set pen to paper, flowing into me, running down the length of my arm. Or sometimes they came in medias res, when I was putting the baby in the buggy or standing outside Mrs. Patel's shop on the corner of Chatsworth Road, while my daughter had a turn on the giant duck that moved and said quack for three minutes or so after you put a coin in its slot. The voices whispered, literally, above my head.

They were not mad voices, like the ones that tell you bad things about yourself or instruct you to hire a helicopter and kidnap the queen. They were an effusion of words that wanted to arrange themselves into lines on a page. They wanted to be earthed, to be made incarnate, and they hovered and whispered about and above me, like chattering children gathered by a door before it opens to a birthday party. I had no time to let them in and I was very ill with a condition I had just been told was Myalgic Encephalomyelitis. When people saw me pushing the buggy or standing by the quacking duck they would not have guessed that for much of the day I was lying as though nailed to my bed, with a fatigue I had no vocabulary to describe and symptoms in my body and head that frightened and appalled me. A kind childminder looked after my children for some hours each day. I told myself this would pass. My throat burned. People began to wonder if I might be malingering or reacting to the stress of child-care and its demands, trying to find a way out. I wanted to be with my children. My daughter said, I want to be with you - why should you be here all alone? I hated handing them over, my two babies.

Perhaps, said a doctor - not the one who diagnosed M.E. but an earlier one who was baffled by the intensity of my apparent malaise - perhaps you feel ambivalent about this pregnancy, this second child. 

No, I said, we planned it, we want it.

Perhaps, said the health centre nurse, you are more tired this time round because you have a small child to look after.

No, I said, this isn't tiredness. And so it continued.

The voices took no notice of this or any other state of affairs. They whispered and wanted to come in. They were seeking entrance. I began to write in a notebook, one of those narrow, flip-over ones with a ring-binder at the top. When you came to the end you just turned it around and began again so as not to waste paper. The words I wrote surprised and interested me, but they did not come from the ones that sounded above my head. They came from somewhere lower down. I kept the notebook by my bed for a while, wrote down whatever I could as soon as I woke up, if I could do it before the baby had begun to cry, or after one of my afternoon deeper-than-death sleeps. I dreamed that I swam in a turquoise sea, holding my daughter beside me with one arm. We looked down and saw that the sea bed was flat and sheer, like the floor of a swimming pool. As I swam I realised I was leaving the shore far behind and the sea ahead appeared to have no end. I wrote about my early childhood, remembered people I had almost forgotten. I saw into the past like a crystal-scryer, illuminated moments, like the time I dug into the earth by a beech tree expecting to find gold and found three coins, enough to buy sweets with and still some left over. I understood that I had set foot on the terrain that lies close to dream-time but is not quite in it, nor in the mundane world of the completely awake. Sometimes I wrote stories and poems that connected to this terrain. But they were not connected to the voices that carried on, sporadically, whispering. They wanted more of my time and they wanted my complete attention. Sometimes they came so close to me, so near to my head, that I found myself muttering, echoing their phrases, promising to write them down (which is what they wanted me to do) later, or as soon as I could.

What are you talking about? asked my daughter. What are you saying?

Words, my darling. I pressed on, pushing my son's buggy through the rain.

Hurry up, I said to my daughter who was trying to keep up with me.

I am only three years old, she said. We took shelter in the awning of a fish and chip shop. I bought a bag of chips, shook salt and vinegar on them and we shared them, walking back in the downpour as though it was a stroll through the park.

Chip, said the little one, putting his hand out from under the polythene canopy. Chip!

The words above my head mumbled away. After a while they came less frequently, and then they went somewhere else - found someone, perhaps, who could offer the accommodation they needed. I carried on writing words in the notebook, typing them out on my portable Olivetti. We got our first computer. It was a monster that took up most of the space in our basement room. When I tapped the keys a ghoulish green light shone from the screen and swallowed my sentences whole. That was a long time ago. My children grew up. I am much older and have a laptop now and a printer, and I live by a forest, not in the east end of London.

The voices, though, have recently come back. Now they choose the moments between waking and falling asleep to press together and begin their whispering - just above my head, as before. I make promises it will be difficult for me to keep. I tell them I will give them attention and a room of their own, but not there, not then when I am at the point of falling asleep.

I still have Myalgic Encephalomyelitis.

Vicarious

I am reading Laura Hillenbrand's book, Unbroken. It is her second book, the first being Sea Biscuit, which was about a racehorse. Unbroken is about Louis Zamperini, who became famous for being a runner and winning races, and then for surviving terrible years as a POW in Japan. Laura Hillenbrand, who is now 43, has had M.E. since she was 19. She lives in her room and goes out so rarely that when she does, she is confused by changes in the world: things are automated that never used to be - that sort of thing. She says that she writes about people who push themselves to the limit against overwhelming odds because it gives her a vicarious life. People have urged her to write an autobiography (she wrote a splendid piece, published in the New Yorker, about the very beginning of having M.E.). But writing about her own life is the last thing she wants to do. Writing stories is a way of not having to live so completely inside her own diseased body. It has been her escape. I find it hard to imagine how she does it. She says that everything is set up for her. She has a refrigerator in her room. Her husband is a successful university professor and was presumably able to provide for her, before she became financially successful. Even so, there are cognitive challenges she must have had to negotiate.

What she said made me think - that we all, to some extent, live our lives vicariously. We do this when entering into the life of another or just observing a creature or something from the natural world. When we pay attention to the 'otherness' of the other, then we become that: borrow the airborneness of a bird in flight, the astonishment of a baby who sees everything as new; and I remember the look in my daughter's eyes in the morning when she was two months old - I felt proud, almost, to have brought her into the world so that she could discover the remarkable fact (not the word but I can't find the right one) of a pattern made on the wall by sun coming through pink curtains. The first time my cat went outside, looked up and saw birds flying in the sky, something moved in her soul, quickened her senses. Of course, in time, she would want to catch and kill them, but still, it was a moment of wonder, when sudddenly this bit of life was revealed to her, and I felt proud of the world and what lived in it, as though I myself had had something to do with its creation - and at the same time I felt I was her, on the receiving end of all these new manifestations.  Animals have this virtue, that they keep their innocence. Even when they kill and maim, they do not lose it, as people do.

Everything after birth is a falling away from innocence. To keep the soul intact, to retain a sense of wonder - this is great blessing. Sometimes it is lost or damaged, but we can get it back, as Louis Zamperini, after his terrible experiences, managed to do, this being (in my opinion) his greatest achievement.

It is June, but the wind is autumn-like, tearing through the branches of the ash tree outside my window. A child's red teepee has been blown onto my lawn. Nothing is quite as it should be. I am filled with a sense of possibilities.   

Practice

I am recovering from another spring virus, it is late and this is no time to be putting up a blog post. But I'm going to do it anyway because I'm going away in a couple of days and on 12th May it is M.E. Awareness Day, and I am mindful of it.

Either the number of PWME casualties has increased or I am just more attuned. Barely a week goes by that I don't hear about a death or about some outrage perpetrated by the medical profession. A woman with severe M.E. is about to be forcibly removed from her home on the advice of a psychiatrist who has never met her. Someone I have come to know through a Facebook group is denied the essential care she needs in order to live. Another has been told she must submit to an exercise regime that is not only unrealistic but dangerous, or risk losing essential benefits.

Being able to get about a bit, I remain one of the more fortunate ones, though twenty-five years along the road does not do me any favours and I am still sometimes asked if I am "better now."  I reply by giving a short lecture about the nature of M.E., not so much for my sake (if people have some understanding it's nice, but unless they or someone close has it then they probably won't and one must be realistic) but in order to spread the word a little - help raise awareness.

The spirit is still strong (I have yet to meet a PWME for whom this is not true - practice makes perfect) but the disease takes its toll. It is time to take stock again, find new ways of doing things, especially those things I love, that give my life meaning. I carry on doing The Writing, but am having to embrace the idea I may never have the strength for a big project, and that - crucially - this will be ok. Good enough. I have rehabilitated the reading, for which hurrah, because I am as much a reader as a writer and I feared I might be losing the ability to properly focus - M.E. brain can lend one a kind of dyslexia whereby one takes nothing in. I have to be careful not to risk overloading the brain because this can easily cause relapse, and have come to recognise that I can take in much more if brain does not feel it is having to absorb Information.  Kindle has helped to some extent.  I don't know why it should be easier on the eye than a book, but it sometimes is, and you can adjust the font. I continue to meet with writing people, when I can, either to workshop poems or to sit in a kitchen (mine or theirs) with a notebook, to write and then share what we have made. When this kind of activity works, when people are focussed on the work and the process, there is a sense of community and it feels as though one has a hearth. Whether my words find their way into the wider world or not, I am still this writing person, as green as when I first began to do it, when I knew (a late developer) that this is what I was for. I need to put my ear to the ground and listen for what is coming, for what I really want to be speaking about, because unless I am true to that I won't have the strength to do it. Unless I can bring this kindness to bear on my practice, then I won't have the heart for it.

Today I went into the village for bread, yoghurt and a newspaper. I nearly didn't because it was cold and wet and I haven't been outside for a few days. There was a boot sale going on in the community centre car park and all the usual spaces in the village centre were full. I parked my car at a distance from the minimarket where I got my paper. Coming out of the shop, I saw a Big Issue man under an umbrella. As I shook my head at him, he held out his hand and said, "Please." He was ruddy, thick-set with dark wavy hair, and from somewhere else - foreign. I ignored him.  Perhaps it was just the easy habit of common and garden mean-spiritedness - I give now and then, but not often, not much - and also, I didn't want to stand in the wet, rummaging for my purse. But back inside my car, the look of him lit up like after-image and I felt him in me, familiar, there was something in his gesture I knew or recognised, as though he might once have been someone who mattered to me. He wasn't, I had never seen him before. I drove past the shop, left the car hazard lights on and dropped some coins into his hand. He nodded, as though he had been waiting for me. He looked tired.

There is something I need to put together again, something I would like to re-member. This too is work-in-progress.

**

Work in Progress

I was buzzing last night. It often happens before sleep, or the not-sleep time in the small hours. There are moments of near-blinding lucidity when I am able to name something, nail it to a great canvas of words that wait only for my attention, to be arranged into something meaningful. Next day, I think, next day I will do it, catch whatever it is. You can do this quite well if you make a habit of writing things down immediately on waking, straight from sleep. You can't do it quite so well or even at all when you are M.E.-compromised, as I mostly am and have been. This is why I was buzzing last night. It is the wretched creative creature, banging on the window frame wanting to be let in, like Cathy's ghost in Wuthering Heights. We are bewitched, bothered and bewildered, Heathcliff and I. But at least he is able to rampage across the moors in all weathers.

Sometimes I repeat words to myself last thing, hoping that by doing so I will catch the idea in the morning. I woke up today mouthing, "a work in progress." Last night these words had been pregnant with meaning. Today I have drawn a blank. What is this Work in Progress? There are several, but this time I have a feeling that the creative hooligan was not referring to one of my unfinished writing projects. I think it was referring to my life with M.E. It is a work in progress. Clearly there were things I thought I had to say about this. But what? I know I have to live with this damn thing, I continue to try and find ways of getting myself better, usually fall flat on my face but, you know, "Hope is the thing with feathers/that perches in the soul" etc. I have no choice but to be heroic. We all are. Just because we are many does not make our individual journies any less heroic. I have said this kind of thing before, surely.

Perhaps there is something else I have to realise about this particular work in progress. It is, after all, the only work that is always, at all times, available to me. I think we are coming perilously close to the business of noticing dust motes in the fingers of light that point through wooden (IKEA) slats and I have done this (and do this) almost to perfection. They spin like ballerinas dancing on points, is what I wrote in my last Dust Mote poem, which was really not half bad.

I am half sick of dust motes, said the Lady of Shalott.

**

How Things Are in January

I have decided to be kinder to myself. If a family member, friend or (come to think of it) anyone were to commit to doing something and then couldn't, I would not berate them. I would not treat them as I have treated myself, pushing them to keep going as though kicking a poor, worn-out donkey. Shame on me for having done that. I am as deserving of consideration as the donkey. A digression: in our family the donkey has a special place. My daughter and I both had donkeys as our special stuffed animal transitional comfort creature. More than transitional, they accompanied us through childhood. We love the donkey and support the Donkey Sanctuary. Son used to send them his pocket money. End of digression.

I have not been strong or well enough to consider working on my novel project right now. It will have to wait until things change for the better. I am carrying on with poetry work though this too is circumscribed, for at the moment my bed and dear little Macbook Air is the centre of operations. I do get up from time to time - for essentials plus writerly engagements - but the earth's rotation and gravity have to be negotiated.

Signs Cottage is not necessarily the best place for me, it has stairs and other inconvenient things. But Mr. Signs works from home several days a week, and cat is here. Life, still. Sweet.

Tomorrow is the mater's 89th birthday bash (meal in a local posh hotel). She does Pilates and aqua aerobics and is in rude health and sprightly as a pixie.

Back soon with posts from the front. They will be short, pithy - and unspeakably heroic.

(The title of this post refers, quite shamelessly, to the title of Ros Barber's poetry collection: How Things Are on Thursday)

never mind the title

Sticking my head in the door to say hello here. Hello to who? You, obviously, but to me too. People say that Tweeting is something akin to talking to oneself, and I have often thought this about blogging too. But in talking to oneself is there not the sense of some listening presence - an intimate other - or what some creative writing practitioners would call your 'ideal reader'?

Here at House of Signs we are quite happy with the less-than-ideal, or if not happy then realistic. At least I did not make any stupid resolutions that would now have been broken. But strength is once again at a low ebb. I am looking out of the window as I write this, at my neighbour with her young sons, digging in the garden, she in a green puffer jacket, the oldest boy in red and the toddler in blue. Grandma is there too in a mustard puffer. All are digging. I want to be digging too, not literally perhaps, but working my own patch of land, making grow the things I want to cultivate. A number of things come against this. Even sticking my head around the door like this is not without its difficulties. For one thing, I have to be sitting upright. No, seriously.

It has been one of those mornings when everything that is waiting to be written, sung or planted, the etheric spirits of them all, gathered around my bed singing their various possibilities. We are ready, they said, to incarnate. These voices. They have never listened to reason. They know nothing about Postural Orthostatic Tachycardia Syndrome. By this afternoon there won't be a trace of them. They stay only for the possibilities.

But this piece, all about someone doing something against all the odds, has made me feel very happy.

**

Beyond the Dry White Whine

I was just about to share with you a fulsome complaint about the state of the Signs barnet (I am having a bad hair month) when I was struck by a profound thought. Bear with me, as they teach them to say at call centres, especially when it looks as though there may be trouble ahead and no possibility of resolution (our fridge light is not working, it has been kaput for several months, we have a British Gas kitchen appliance service agreement that should deal with this, they are apparently working 'night and day' to resolve etc etc). There is much that I could be complaining about. The state of my fake Ugg boots, fact of the heel being conspicuously worn when I hardly, I mean to say, really walk any length to brag about; I have put on weight and it isn't even Christmas yet; it is cold in the Signs bedroom because the loft has never been properly lagged and we just can't - etc; and so on, including the hair and the fridge light, as outlined above.

The profound thought that barged into my consciousness is this: complaining is really a luxury activity. Don't get me wrong - I am all for complaining often and loudly, especially about poorly-administered service agreements. My 'musn't grumble' stance is ironic, not from the heart or from any conviction that there is merit in keeping stumm about the variety of aggravation that life throws at you. But complaining, if you are going to do it properly, takes energy, life forces, sure ground beneath your feet of the sort that stems from a feeling that all is fundamentally well, were it not for the malfunctioning fridge light (the sound on my computer has gone mute btw, and there is a crack in our recently-acquired toilet seat, just so you know).

Consider this: when you are in your mid-thirties you complain about the fact of getting older. You crack on about how you are now, technically, middle-aged, you don't stay up all night drinking as you did in your teens and twenties and you can't so easily ignore the bronchial cough from all the cigarettes you smoke. In your mid-forties you are much less loud about all this. You paint over the grey bits and generally stop drawing attention to age-related matters especially as some of them might have become embarassing. In your mid-fifties you either kind of shut up about it or you say something properly interesting, or write poety. You understand in your soul that we are mortal and memento mori becomes a mantra worth considering. It is all too close to the bone for mere complaint.

When life becomes properly hard, with fear, pain, illness or hunger as constant presences, things go quiet, or something quite different happens.

The silver swan, who living had no note,
when death approached unlocked her silent throat.

I do not think you will easily find someone with M.E. complaining about what the disease has done, is doing, to their lives. You disagree, perhaps - think that there is an endless stream of complaint from the M.E/CFS community, enough to make you want to switch off, but what you see does not touch on the heart of the matter.

I have said this before and will say it again: there are people living the severe version of the condition you have heard referred to as Myalgic Encephalomyelitis and what they endure is unspeakable and heroic. Some, with difficulty and extraordinary tenacity, manage to write about it, speak the truth. When they do, the words are song-like. They give utterance to something mysterious: how we can be in seemingly impossible conditions, maligned and forsaken, and yet bear witness. Lament is the purest form of song I know.

Greetings to y'all this newly starlit Advent - and to you, the singers: I listen, I hear, I lend my voice.

**

Beat, Broken and sometimes Mickey Mouse

This is a pyjama day - my red, white and tinsel ones that go on surviving, a bit like my Purples, or like me. I have been winging it for a couple of months, meaning that I have not been spending most of every day lying down and that I have been seen out and about (shops and stuff, a poetry reading), and with my new short hair people say, oh you look well, you look better, you look - well, whatever, clearly I look brighter. And if someone asks me how I am, I say good, even though there are substantial grammatical issues around this ('good' is actually more correct than 'well' but we won't go into this now) - because while I have ME/CFIDS it is not truthful to say that I am well, but there are days that are, for whatever reason, good. And therefore I am. In my 'winging it' times I can move through the day as long as I keep, in some way, moving. The moment I rest or sit down I feel something more akin to the true state of things. Gravity homes in, sucks at my limbs; electricity, and all the strange manifestations of the malfunctioning body that goes by the name of me, begin to buzz, twitter and growl.

When I write, I can also (sometimes) feel as though I am winging it, as long as I keep going, like Mickey Mouse walking off the edge of the cliff - as long as I don't look down. I have used this image before, probably several times. But it does so perfectly represent how things are when one is like this. It isn't as though the ground (abyss) is not there, just that while in the air it is better not to look down and see it. If I believe I can keep going, the chances are I will get to the other side.

My Dad once wrote a play with a character who had the ability to walk on the ceiling and did so, going against logic and the law of gravity, until someone insisted that what he did was impossible. It only took a split second - the realisation that this was, in fact, impossible - for him to fall to the ground. He lived his life ever after according to the laws of gravity, with only footprints on the ceiling bearing witness to what he had been able to do. Perhaps I should stop before I stray into the murky territory of the positive-thinking self-help manual - when all I really wanted to say is that sometimes I am Mickey Mouse. Ok?

I have been enjoying the Twitter thing, unexpectedly, considering initial misgivings before I understood how it worked and thought it would feel like being trapped in a room with hundreds of people all talking at the same time. It is somehow easier than Facebook, not so much in your face, and one can dip in and out more smoothly. I came across the Railroad Poetry Project there - as far as I can gather, they are a couple of Kerouac-loving, Beat poetry true-hearts who have started an online magazine for people and poets who are "beat, broken and beautiful" and they asked for submissions. Well how could I resist? So a couple of my poems will be there at the end of the month, and I'm listed now as one of the contributors. It's pretty obvious which one is me - and I seem to be the only one who wrote the bio in first person.

**

Substance

Fabulous day here on edge, pristine blue/gold autumn with a touch of sting in the air. What to do with it? Or, more specifically, how to use the time available before energy meter times out? (Esp as this is in part borrowed from cup of coffee). I could: go for a walk on the beautiful forest; do last night's washing up; write another three A4 sides of novel, which has clocked up a surprising number of words considering I have not been able to give it much of me; write a poem; pre-prepare the evening meal; or I could sit here and do a blog post. You catch me, so to speak, in medius res, doing just that - PWME in action. Of a kind.

There is no right way with this. You make your choice and feel bad about the other things you have opted not to do. Or you make your choice and decide not to feel bad about anything because you are doing your best. I no longer understand how everyone else (without M.E.) lives. This is strange, because when I was in Monaco looking at all the super-rich peeps on their yachts I could quite easily begin to imagine how it might be if one had unimagineable amounts of money so that you could, for example, spend a quarter of a million just on getting the right kind of fridge/freezer for your floating monstrosity. Monstrous perhaps, but I could imagine it. Money is just another kind of energy. So why can't I get my head around the idea of an ordinary day in the life of someone who does not have to negotiate with the bastard disease? How do you work, shop, clean, go to the gym, see a film/play, get on a train, do admin, cook a meal, talk on the phone - all in one day? How do you even do two of those things and feel ok? Energy aside, I do not know how anyone can process everything without becoming overwhelmed. I belong to the one-a-day club, whose members can really only do one thing a day. Even so, I break club-membership rules. I push myself, do more, pay for it - can't do the pacing thing, stupid me, but on the other hand, the moments, each splinter and fragment - I want them so much.

Cat of Signs is now taking a daily pill (cunningly hid in sliver of tuna fish) for her hyperthyroid condition. We discovered also that her increasingly wretched state was due to fleas, picked up from the cattery in August. Dealt with. But she won't leave the kitchen and basically lives in an empty Abel and Cole vegetable box. The vet says that this is because she associates the rest of the house with fleas. Also, that we need to vacuum the house every day paying particular attention to corners and edges (yeah, right) so as to avoid a nasty infestation situation once central heating is switched on. And that we should be spraying something (toxic) around the skirting boards - just to make sure. Strategies.

If I say fuck off enough times, will the fleas get the message?

If I bring C of S's daily saucer of cat milk up to the living room will she leave her Cinderella abode and come back to us?

Because otherwise, I don't know what.

**