be here now

I was playing observant gardener, i.e. wrapped in a warm blanket, resting on the sofa and observing my gardener outside, when the cranes flew in their noisy v-shaped formations across the sky yesterday.

I remember watching them two years ago while I was high as a kite on cortison and my liver and heart were kicked around by the first immunosuppressing drug that almost buried me. 

There was a time when I would run away from memories like that. Still have the urge but where to? No place left to run. Not after two years of this. 

And yet, every time I come up from another blow to the system, another yuk inflammation here or there, a couple of days under that heavy blanket of fatigue, whatever - there seems to be an endless supply of things that can go wrong -, every time my silly childish mind cheers up and tells me that now, finally, things are getting better. The feeling that a good rest and a couple of early nights will see me right.

Bless your innocence, I want to hiss back, watch me come undone.

Some nights before sleep I run through all my fraying edges, down to counting all of the open sores in my gums, like a pilot getting ready for flight.

Other nights I just lie back, thankful that this blasted fatigue will drown out any thoughts. 

Compared to two years ago, I am coping. Occasionally, I am coping splendidly, efficiently, even with a sense of humour. You'd look at me and you'd think, why, she is fine, and I am sure many people think that (and suspect me to be a bit of a hypochondriac). But still, sometimes I can see this woman peeping out from behind the dark blinds, this middle-aged, healthy, energetic, active woman... she is fading fast. Sometimes I pick a book from the shelves and I remember that I read it in that gloomy period between getting ill and being diagnosed and I remember how I joked to my GP that I was rereading my way through our book shelves, starting from the bottom right hand corner, and that by the time I reached the top left end, surely I'd be well again.

Two years ago I had just come home from four weeks in the specialist clinic where twice a day a friendly woman would guide a small group of us seriously/weirdly ill patients through a half hour of relaxation, with gentle music, breathing and muscle movements. I used to love that music but now when I hear something that sounds even the faintest bit like it, I want to run. 

There is no agenda, no sense of direction or purpose, instead I simply make it through another day, another week without getting anywhere. And then again, why would I want to get anywhere at all. Be here now, I used to tell my impatient daughter when she was small and spinning towards a tantrum. And I was feeling ever so grand and superior and wise.

Ah well. She tells me it worked for her.