I Capture the Sweetshop

Every so often I try to get myself organised so as to be a little more productive than I am. This doesn’t usually work out very well because Malignant Entity hears about it and sabotages, but still: I have sometimes managed to do certain things that I wouldn’t have done if there hadn’t been some kind of plan or readjustment made. The plans and readjustments are not always the active kind, often they involve cutting out something else and usually the something else is given up unwillingly.

I sometimes read the blogs of writers from the land of focussed productivity and it is like pressing my nose against the window of a richly-stocked sweet shop. I want very much to taste the sweets I see, can almost feel the buttery slide of a striped peppermint humbug or the fizz of a strawberry sherbet in my mouth. But twixt them and me is fixed an impenetrable glass wall through which I can only look, and my pockets have only small change. The looking, though, is better than nothing and I still want to know there is a world out there and in there.

I wrote those two paragraphs last night and suddenly realised I needed to sleep. Now I see I have been rambling about sweets and clearly I was having another blood sugar swing and jars of sweets are in any case not the best image to stand for the actual doing of things, but let it be. So, I have a sequence of poems I would like to complete and a number of writing-and-process sessions scheduled. I have completed bits and pieces that I plan to put inside envelopes and send somewhere. I am waving a protracted goodbye to Shrink just as we were in danger of actually getting somewhere, but the driving was killing me and the writing, so that’s that. Back to the square on the board that isn’t quite square one or Go To Jail but isn’t much further on the road to capturing the castle either – and look, I am coming up with crappy images again, I could never stand Monopoly, probably because there never were any castles there to capture, and I have never been much of an entrepreneur.

I should go. Because otherwise I might begin to list the various things that are cluttering up the fragile soul space of Signs and then this would become a confessional blog, which is not necessarily a bad thing, just as confessional poetry is not necessarily a bad thing (and if you are Anne Sexton it is a very good thing indeed – for us, I mean – it didn’t save her). But I think if one is going to do the confessional then there’s no merit in being coy, it needs to be done properly, hammer and tongs and hell for leather, so to speak, and if done in the right way it is not (as everyone always fears) self-indulgence but something big and generous, and one takes one’s hat off to the blogger who does this.

No really, I should go.

Mind the Gap

There is no doubt in my mind that some people can't help but feel that having a chronic condition such as M.E. might be a bit of a breeze. When someone asks me what I’ve been doing and I say not a lot because I have had a to spend most the time lying or sitting down there is something wistful about the responses I have occasionally had: people tired and desperate for a break in their relentlessly busy lives, can’t help but feel (and say), I wish I could just do nothing. The picture they have is that one is lying on the chaise-longue, fresh out of a long soak in a scented bath, reading a good book or watching a film, while someone brings refreshing drinks and nourishing food. Of course, all or some of these details may apply, but they don’t add up to the truth of the situation. Obviously. If we are lying down all the time we are most likely far too ill to be able read and when we are up and doing, or even lying/sitting and doing, we are probably coping with varying degrees of pain and fatigue and risking more of the same or worse on the following day. The years pass and we long for life. If we seem content with our lot it is a hard-won serenity that has had to be practised over years of illness where so many hopes have risen like new moons, only to fade again. I believe that most of us do not look for sympathy. Empathy is good, but most people can’t possibly know what this is like, it takes a particular talent to feel oneself into another’s situation, one can’t bang on about it the whole time and when an illness just goes on and on it scares people. So now the deal is this: I let it be known that I have a condition called M.E. which impinges significantly on what I am able to do, and then I want acceptance, pure and simple. If anyone wants to disrespect me (which doesn't happen much these days) they can piss off. I am prepared to deal with a certain amount of ignorance and to give information. Basta.

I have said all this before, one way or another. But now, with my new decision to take an extended “gap” period, (where I’ll be working but not “going out to” work) I know I’ll meet a number of responses that have, perhaps, less to do with my situation than with the stressful lives that so many people choose, or are obliged to lead. When I told my sister last year that I wouldn’t be working for a while, there was a silence and then she said, “I have to work.” A divorced friend of mine, run off her feet with work, children and health problems must see this life of mine as an oasis. I don’t get into arguments about it, I can imagine how it feels and have, in my way, been there too in the early days of my illness when there was little money and if I had been on my own instead of living with a supportive partner, my children may well have had to be taken into care. There were hard times, and I never had a penny of incapacity benefit as I wasn’t working at the time the illness struck. Things are easier now. I liked going out to do the work I did, but it took all my strength and what happens in the future is open. So, for now, I am having another gap year and taking the road of “never apologise, never explain” – the contradictions notwithstanding.

Auspicious Signs

On the weekend I spent a day with a friend who came up from London on the best of all possible days, the weather being warm and blue and gold with just the right amount of breeze. We sat outside on the terrace of a country hotel that used to be a convent, looking at the monkey puzzle tree and close-cut grass that sloped down to the lake with ornamental fountains, drinking white wine spritzers with cassis, eating Caesar salads with fresh prawns. There was a wedding party and we watched the guests gather on the lawn and considered the strange Queen Mother-style clothes that women wear for such occasions. There was one, though - a striking and very large dark-haired woman who wore a white trouser suit that made no apology for her size and clothed her beautifully. An added adornment was the shine of kindness on her face and in the way she accompanied a much older woman as she walked away from the party and back into the hotel. Watching her it felt, somehow, auspicious. But then, you know me.

My friend and I both used to live in Hackney, round the corner from each other, we belonged to the same women’s writing group. Our children played together and we saw each other most days. Being with a good friend means one can breathe more easily, properly inhabit one’s body and skin. She poured coffee straight from the packet into the cafetiere. We liked coffee and books and writing. The first time she heard me read my stuff she said I was possessed and I felt newly and exuberantly gifted. She too could write up a storm. I had M.E. then but I could still find pockets of strength with which to override it. It cost me, but really there was no choice, I had found the thing I wanted to do and I sat at the kitchen table in the late hours, in the early hours, and I did it. We published stories and then I moved here to the edge, we both did all kinds of other things, my illness became more entrenched, but whenever we met we talked about writing; about everything else too, but it always flows back, as a river goes to the sea, to the writing, the process, the notebooks, the others, the words, the writing.

After the Caesar salads, strong Americanos and an absence of cigarettes (we have both given up again), I spilled my misgivings about the formal, paid work I was about to undertake, how the small strength I had would be taken by it. Her judgement was swift and uncompromising. Don’t do it, she said. Life is too short and we are women of a certain age and must grasp it, life, the nettle or the thing that won’t be pushed aside, the writing. Sometimes it takes someone else to say the obvious and the road ahead suddenly rises to meet you.

The novel-racing, competition-hosting, good Mr. Moon has given me an Inspirational Blogger Award. So cloth-headed do I feel that I can’t for the moment figure out how to upload the nice badge thing so it appears where I want it to. But I’ll see to this and everything else because just now – what with the woman in white, the perfect advice of a friend, good words from a blog-pal and a very attractive black and gold award – everything looks very, very auspicious. Of course, there is always the possibility that I am losing my marbles. At present, however, I remain,
yours truly,
Reading the Signs.

another country

So I went with my nicely completed forms, had the interview and all looks set fair. I’ll be teaching what I love but not doing too much of it, and as it’s for a university I’ll have the perk of being able to use the lovely library. It won’t be till September, so my gap year stays intact. And I never mentioned the letters M.E. And no one will have guessed. It’s not relevant, wouldn’t have fitted into the ‘disabilities’ section of the form (there will be obstacles to negotiate but I am used to this) and is in any case very bad PR, I always tell myself.

On the whole, it is not something I put up as a subject for discussion. I’ll mention it as one might mention a wooden leg, as something that might have to be taken into consideration in some circumstances. There is something about long-term illness and bereavement (here, at any rate) that embarrasses people. Better to cross the road and pretend not to have seen you rather than say – whatever it is they think should be said to someone bereaved. It also frightens people. A number of people have wondered if you could catch it (forgive me, I seem to be in italic mood today). Well, this is a question but once the illness is established, no chance. One then has to field the Good Advice, the but-isn’t-there anything-you-can-do, disbelief, hostility (oh yes, sometimes) and ultimately lack of comprehension. The fact that people don’t understand is something we have to learn to live with. Of course they don’t, none of us understand about others, the best we can offer and hope for is some imaginative empathy along the way.

So why am I here talking about it and why is it up there on my profile, especially when the last thing I want is for people to say, oh Signs, she’s the one with ME? It isn’t who I am but it has informed the way I live and the way I look at things. I take my time because I have to. I look at small things because I have to. I am not looking for the silver lining – the illness is a bastard, it is against all things creative. But I am creative and the way I have worked with it and around it is creative. I no longer expect to live the life I might have had. I live this one: in an age where people expect to do more and more without thinking about it, I have to think about everything I do If all I can do on a given day is walk to the end of the road to post a letter then I had better be awake and notice things. I have had to learn. It is good for poetry. I am a single-tasker. I am not a woman who “juggles her life.” I am time-rich. Granted, much of this time is not “useful” – that is why I can’t do a great deal of anything. But because there are spaces in my life I have time to send cards, speak to friends and look out of the window at the snow melting on the poplar trees. Though I hate the illness, I have grown to love the spaces.

Chronic illness/disability is another country. I didn’t choose it, but I know my way around and behave in the way that is best suited to it, sometimes not but it’s my choice. I send postcards: here is a picture; this is how it is;