Friday, May 30, 2008

Fröhliche Glückwünsche

On this day I want you to know that I think everything will be ok. I don’t know what I mean by that or why I say it. I say it so you won’t have to worry. I say it so you can go now if you want, not leave me entirely but turn your attention elsewhere, so that you know I won’t keep pulling at you to come back. There are two brown bullocks beyond the garden of the house where I am sitting. They are munching at the grass by the side of the river and lifting their heads every so often to ruminate and take in the air around them. They are swishing their tails and the birds are singing. How good they are, even if they do nothing but this. How good you were.

On this day I would have cooked for you a roast chicken because you said you still thought of that as a treat and we talked about how it used only to be cooked on Sundays or special occasions in the days before supermarkets and battery farms. I would have made a cake out of almonds and hazelnuts because that was your favourite, and there would be a chocolate topping with eight candles on one end and seven at the other, and when the candles were all lit we would be there – all your children singing happy birthday to you. After that you would get up and pretend to make a speech, one of those interminable ones that go on for ever, where people say things like, “I remember the day in 1947 – it was a Tuesday, no, I tell a lie, it was a Wednesday afternoon and the sun was shining, though if my memory serves me correctly it may also have been a little cloudy….”, and you would go on like this in a faux BBC just post-war voice and we would laugh and you would cut the cake and pretend that you wanted to keep most of it for yourself.

On this day, when you were sixty-four, you sat at the piano and sang, “will you still need me and, more importantly, will you still feed me, when I’m sixty-four.” Even when you were in sad times you looked for where the laugh was and it always appeared, like the time in the Indian restaurant when the old man sitting alone eating his Vindaloo looked up and said, “I love to hear the chink of coins, it is music to my ears,” and it sounded just like you, if you had been pretending to be an Indian man with a small pile of coppers on the table.

On this day, if it was a weekend, the weather was fine - the sun always shone on your birthday. We sat at the long wooden table underneath the green canopy where the small bud roses bloomed, and you made fruit salad with raisins, almonds and Amaretti.

The bullocks have moved away now. They came for this, I think, to bring some essence of you on this day of your birth, eighty seven years ago.

Wednesday, May 28, 2008

Substance of Kindness

I don’t know. It’s almost too grey to be up and about today and the fact that I am, dear reader, is simply another manifestation of my quiet heroism which is second in virtue only to my incandescent modesty. Look, don’t expect much today. I won’t, and that way we’ll all manage to get through this post ok and we do, let’s face it, in any case have the choice to simply go and look at youtube or something. But you are still here and so am I, so we may as well get on with it. This post, I mean. Life.

On account of not being able swallow for knives and pebbles in the throat I went to my good doctor today. I like my doctor. He misses the mark sometimes (as when he failed to diagnose abscesses on my son’s tonsils) but he is attentive and kind and apologises for putting the ice lolly stick in your throat in order to have a look at what’s happening there; and his hands feeling the lymph nodes in your neck are – what is the word? – courteous. Obviously there isn’t much to be done about a viral throat situation other than wait for it to go of its own accord. But kindness is a powerful thing; unkindness also. The one sustains and the other diminishes. I was reminded of the latter when reading a recent post by Greenwords. I think it may be that people with chronic illnesses are particularly vulnerable to the manner in which they are treated by health professionals. Particularly appreciative also. We notice. The medievalists understood a thing or two about courtesy, that it was more than just good manners but a whole way of being that conferred substance on both the giver and the receiver. So I feel better, even if not physically, for having been to see the doctor.

I feel better also for the good words that sometimes come through this magic box, those with the unmistakeable essence of good will; and the text from a certain person about chocolate cake; and the voice of my daughter on the phone; and for having seen Springwatch on TV last night and learning that my cat (I knew it) has a bit of wild cat in her. This afternoon I sat by the window next to her and tried to look out with her eyes, see what she sees and everything was, for some moments, illuminated.

Sunday, May 25, 2008

Berliner Signs

We stayed in Kreuzberg. Someone said this is the Stoke Newington equivalent of Berlin, but it's greener, cheaper and altogether more chilled.

There are people. You can't see them here, or the (mostly Turkish) cafes where they sit for hours at a stretch. Remember that this is the centre of Berlin, and this photo is just of one pavement. The road is on the left. There is space.

In the local park by the river, people come and give impromptu concerts and have barbeques.This is outside the Berliner Ensemble theatre which used to be in the East.
I visited the place where I lived for nearly three years. The road from my house goes down to the waters of the Havel. Going back was not an altogether comfortable experience. The old sweetshop was there, but empty. A ghost sweetshop. And me a ghost also.

Here is a path through the Holocaust Memorial. You could get lost here.

This is the view out back from where we stayed - the courtyard. People don't really have gardens. It's very flat in Berlin and everyone rides a bike. Someone has drawn a heart on the wall opposite, and written "Ich liebe dich".

And here is our bed. There is a book of short stories by Miranda July (I recommend) and another of German expressionist poetry which I found on the shelves there.

"Da plötzlich erblüht
mitten ins herz hinein
brennend sitzt du in mir Baum."

I have come back with another throat infection. Not too bad, but you know. So this is all for now.

Wednesday, May 14, 2008

Going on a Bear Hunt (Beim Lesen der Zeichen)

Mr. Signs and I are going to Berlin for a week. Though I have been to other parts of Germany and Austria, I haven’t been back to Berlin since I was about six going on seven, when I came back to England. My father had been an actor with the Berliner Ensemble and we lived for some years in a village nearby, close to what was soon to be the border between east and west. On my return to England, I spoke with a German accent.

Going back to somewhere that was home a long time ago is always strange. I remember the place where I lived exactly as it was and although I will be going back as a foreigner, I carry it as inner landscape, along with the songs and stories I learned there (Rotkäppchen and Aschenputtel come to mind, the full unexpurgated versions).

I am looking forward to eating Gummibärchen. I know that Haribo make them now, but they are not the same as the ones I used to buy in small white paper cones for zehn pfennig. If Proust can recreate an entire personal histoire from the taste of a Madeleine dipped in tea, I mean to say, then so can I by chewing a quantity of Gummibärchen.

Auf Wiedersehen – literal translation: until we meet again or, as Number Six would say, “be seeing you.”

Sunday, May 11, 2008

Coming of Age

I have had M.E. for twenty one years. So it is perhaps particularly appropriate for me to write something to mark M.E./CFS International Awareness Day. You could say that we have now come of age, M.E. and I together. I do not feel like celebrating. But still, it is something perhaps worth honouring – the fact that I and so many others like me carry on and live our lives, that we are, in spite of everything that the illness brings with it, alive. What does this mean to be alive when so much of life has been compromised or brought to a standstill? I am, it should be said, one of the lucky ones. I can walk a bit, write and read a bit, travel a bit and am not wholly confined to bed or wheelchair. I would like on this day to honour those, especially any who might be reading this now, for whom life has become a very small space in which to live and have one’s being.

Recently we have read or heard on the news the terrible things that happened to a woman living in Austria, locked up in a cellar by her father for many years, forced to bear his children, some of whom never saw daylight. We heard last year of the imprisonment of Natascha Kampusch, now free after ten years confined to a small space. I am not intending to compare my situation with theirs. The reason I mention them in this context is that I am always freshly astonished at the capacity that people have to survive, not just in body but in soul – particularly that. When one interviewer suggested to Ms Kampusch that she couldn’t have had any life at all, she had to explain to him that she did of course, but not in the way that others did. Where we have many rooms, she divided her small space up into areas and created for herself an environment, waiting for the time she would be free.

I do not think it likely that I will be free of M.E. I spent years, money, strength, looking for a cure, thinking that one day I would have my life back, hearing about people with Post Viral Fatigue Syndrome who recovered. In early days I did not distinguish between that and M.E. I was unable to read the signs of an increasingly malfunctioning immune system, didn’t know that recovery, as I pictured it, would be unlikely. Perhaps that was just as well because I don’t know how I would have stood it. I have a memory of cycling along a country road in Germany with my baby daughter in a basket at the front, she holding her hand out to feel the wind rush past; another of us in the sea in Hove, me with my small son in my arms, waist-deep, jumping the waves. I already had M.E. at that point but was able on occasions to override it, something which would (I learned over and again) lead to worsening symptoms. Neither children will remember those occasions because they were too young, but those moments are written into me – precious because they were the last moments of their kind. I had to move, as it were, to another country, the land of a particular kind of chronic illness – to learn its ways and find my way around.

There is the temptation to be glib about a life as constrained as ours must be. As everyone (who knows anything at all about M.E.) is aware, one of the strategies we are advised to employ is that of “pacing” ourselves. Perhaps what is imagined is a well-ordered day where life is punctuated by well-timed rests in between bouts of productive activity. The problem is that for many the illness is characterised by lack of rhythm and unpredictability. Even for those who have had M.E. a long time, it is easy to look at others who have it and imagine that they a) somehow manage things much better or b) they don’t have the illness as badly, if at all. It is easily, especially in the blogging world, to misinterpret. To complicate matters, there is wide misunderstanding about what M.E. actually is. People who are going through a temporary bout of post-viral fatigue, or those who are tired and debilitated, announce that they have it and probably actually believe that they do. Then, when they get better, we hear about so-and-so who recovered after a year and there is the implied suggestion that we could too if only we did the right thing or changed our attitude. But the truth that isn’t easily spoken is that M.E., unlike some other fatigue-related illnesses, is not likely to go away. And though there may be improvement, it remains unpredictable and volatile and the falling back after a period of relative wellness is terrible.

And yet the impulse to seize the day is – can be – quite overpowering. For me, at any rate it is so. A day when I am suddenly, inexplicably, without symptoms is as terrifying as it is ecstatic, for I am caught up in a euphoria that won’t be resisted, as though all the life that has been waiting to be lived rushes in to that day, that moment, and clamours for release. No matter that I know how terrible is the comedown one or (at most) two days later, I fall for it. This is the time when one is most likely to do things that bring on bad relapse and commit to impossible projects. This is the time when people look at you and think: surely she can’t really be ill. But I am, and have been, and probably will be.

In this acceptance lies my strength. In this small space I must create a way of living that keeps soul alive and thriving, and I do and will, because life is precious, no less because I am disabled, not on the main road or the fast lane. We all learn this, I think. You could say that it’s a path of initiation. We didn’t choose it but since we are obliged to walk it we learn how to.

Coming of age now, having had this for twenty-one years, I know that there are still no answers. We are moving slowly towards a better understanding; it is possible, or I like to imagine, that by listening to what gives us strength we learn more about what is essential for everyone: that we require food with the life force still in it, that spending long hours under strip lighting or around formaldehyde-treated furnishings makes us ill; that music, art, poetry, kindness, laughter (you can add to this list) are not optional extras but essential; that the heart is not just an organ for pumping blood around our bodies; that even in dark places there is a light in everyone that won’t be extinguished; that this may be something we can believe in.

Tuesday, May 6, 2008

Seasonal Greens, and One Bird Flying

Well I’ve taken stock. I can report that there’s not a lot out back, we’re pretty much down to zero and, as you can see, the tired metaphors go on. But what was I thinking of, anyway? I have never stockpiled – never had the wherewithal, just grabbed the essentials in a hand-to-mouth kind of way, much as I am doing now. Think of this as a kind of performance piece – character in action running on (not quite but almost) empty, grabbing a few essentials en route; the essentials in this case being words – any words that, cobbled together, stand for some kind of truth. My truth, that is.

It must be spring. Yes, there is a particular quality to the sun’s warmth, there is a heady scent of blossom in the air and behold, a new wooden patio set from Argos and one’s beloved Mr. Signs has filled the tubs with geranium, mint, something white and bell-shaped and something greenish/red and spiky, and if I do not know the names of things now then I never will. But good though these things are, it is not for these that I say it is spring. I, like countless other PWME, register the change of seasons as does the wretched little potato in the vegetable rack. You know the one – it has a greenish tinge and the life force seems to have gone from it, at any rate you wouldn’t put it in your pot and cook it but spring comes and hey, it puts out sprouts and shoots, kicked into motion at the season’s pleasure. Of course the centre cannot hold and is depleted utterly. And thus sit I with an unremarkable but unspeakably draining throat infection, weak-limbed, cloth-headed and, at this very moment dear reader, drugged to the eyeballs on co-prox because sorry, but I need a break from the muscle thing. PWME looking in? You know the muscle thing.

What else? I’ve sent poems off to a competition and am not holding my breath. The point of the exercise really is to bring a bit of focus in on the work that I have sitting there – like the potato in the rack, I suppose. Poems shouldn’t be left lying around for too long. Looking at everything again I realise that most things need work – much work, and meanwhile I’ve temporarily lost sight of what my next task should be. When I decide what it is I’ll bash on. Writing is work and takes strength, but if you are a writing person, not doing it is infinitely harder work and not doing it hurts.

But apparently I am looking very well. On balance, odd as it is that one does not necessarily manifest the inner condition on the outside, I would rather look well than not. And Daughter of Signs came to stay for a couple of nights. The house was filled with the sound of her singing, her lovely voice, as she accompanied herself on the piano.


And then a lovely thing came. Do you see it? Sitting elegantly on my sidebar to the right - from The Periodic Englishman. Press the button and listen - watch for the bird flying past the window.

There are words too, and applause - and, as they say in Textville - :) :) :)

Saturday, May 3, 2008

Signs of Glory

Usually I try to be modest, but sometimes one just has to let it shine. Click on it to embiggen and see who made this for me. Confused? All will be revealed when you find the post that has more than 100 comments.

Reading The Signs MOCDOC