If my tone has been brash of late, it is because there has been no real possibility of touching base, coming down to earth, to home ground. We who live with chronic illness find different ways of managing to live with it. Mine has often been to fly above it, at some level. There are benefits to this - one connects to another winged, or at any rate less encumbered, self. But in doing this one also leaves the suffering and disabled self lonely. For if we who suffer (I use the word to mean 'put up with') chronic illness cannot be alongside ourselves, then we become bereft. It is hard enough to be so long in the world, substantially cut off from life and living, without bereaving ourselves of ourselves to boot. I picture myself at the foot of my bed looking down on the person lying there in her red and white, tinsel-threaded pyjamas (June but still cold in Blighty), saying:
look, I'm sorry but I can't come here any more - ok? I really like and respect you but it drags me down and, to be quite honest, it's boring. You only get up to do essential things like washing and preparing your increasingly dull meals - we don't do enough fun things together. I've got stuff to do. I'll send a postcard - bye.
Before you go, I say, what actually are you planning to do?
She scratches her head, distracted. She is wearing my Purple Trousers, Weird Fish hoodie and Adidas trainers.
Long walks on the South Downs - I want to get a dog, did I tell you? Staying with a friend in her caravan in Scotland. Signs Cottage needs attention, plan to sort that out. Theatre, poetry gigs, concerts - and swimming again, in the sea this time.
Sounds good. What else? Anything you missed out?
Writing, she says. Lots and lots of writing - my novel, and poems.
And then the truth strikes. She needs me for that. Wherever she flits in the astrality, if she wants to write, she has to come home to the ground of her being, which is the person lying there in the pyjamas.
I am seeing a nutritional therapist and am on a really impressive hardcore regime, almost everything you can think of cut out, morning smoothie includes linseeds, quinoa flakes, rice milk - you get the picture. The therapist is a medical doctor who was herself chronically ill for ten years. She comes recommended. Any substantial improvement, I'll be shouting about it.