Sunday, March 6, 2011

Marching (oh when the saints ... etc.)

Time to take stock again. This has been another difficult winter for me, for people with M.E. generally, here in Blighty, up against shabby untruth and those in positions of power who would, for diverse reasons, obscure the truth about M.E. So on we go, with scant resources, lucky if we have the love and understanding of family/close friends and/or the proper attention of someone in the medical profession.

But everywhere, and always, people turn their faces away. Not that one holds one's incurable Condition in front of people. Mostly we are at (literal) pains to carry on with every bit of life in a way that doesn't refer to illness and disease. As a deer pants for the water (if you'll bear with the biblical resonances), so our souls long for the good life, meaning the everyday, precious, taken-for-granted, walking-on-the earth-and-doing-of-this-and-that life. But with the best will in the world, the most determined effort not to make people feel uncomfortable, the truth of the situation will manifest, and it is bad news. It is not good P.R. to admit or reveal the extent of it, the truth of how M.E. compromises a life, it frightens, angers, repels people. And 'compromises' is a nice, civilised word to put at the entrance of M.E. reality. But on the other hand, one does learn to accommodate - must, or go mad. So we do, in a sense, become very strong.

John Falk has recently 'come out' about having M.E. There will be no rewards for doing this, as he undoubtedly knows. If he gets away without being openly maligned, cut off and discredited he will be lucky. I see that he too has done the round of useless (because they need educating) Shrinks: "I spend my money and more importantly my precious energy stores educating them on CFS while they in turn struggle to fit me into a paradigm of psychological dysfunction." I wish him well and hope that others speak out, stop being ashamed and own up to having M.E. Better for us all if the truth, the extent of it, comes out. But I also hope that not everyone with a fatigue-related condition jumps on the M.E. wagon and speaks, especially those who have been "cured" after a year or two and want to tell us Like It Is.

I say "us", as though there is a comfortable base of 'usness' where we are together in mutually supportive harmony. There are all kinds of M.E. online support groups and many PWME who now blog about it. But the debates around M.E. make for a volatile scene and there are spats and fights, inevitably. And we are all, perforce, alone with it and the particularities and degrees of incapacity.

For myself, I confess that I am ambivalent about the giving and receiving of "support". I do not even know that "support" is actually what I want. For M.E. to be recognised, believed and understood - yes; for there to be a ground of truth on which we can stand - yes; and for proper recognition and respect so that I no longer feel ashamed to say how things are - oh yes! And to this end I want to give a measure of energy. But I don't want to spend the little strength I have focussing on all the particulars of my or another's M.E. I can see that this might be good at certain times for certain people, but it is not good for me now, at this time. For now, I need to put my focus, if possible, elsewhere.

Time does not only fly. It presses. There are things I still want to do, the limitations notwithstanding. And never mind the rest of my life, there are things I want to do in the next couple of months: writings, poetry readings, workshops, choral singing, trips to London to see the lovely, musical things my kids are putting on or appearing in. We will see what is possible.


willow said...

Yes, oh yes! Lovely blog post.

Reading the Signs said...

Willow, is it you? How good to see your name here again.

willow said...

Yes, 'tis me indeed :) So much to do, so little time...kind of thing...but, it is always inspiring to pass by and read your words.