Sunday, May 6, 2012


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.