There are moments - and I write this without any sense of melodramatics or self pity - when I am certain that I am balancing very close to the edge, when I feel the frailness of my existence in my breath, when I run my fingers along the bones and muscles of my arms and wonder what it is that keeps me alive and for how much longer.
I have no reasons to despair, I am not terminally ill, I am hovering in between, mostly waiting, for good days, full of energy days, everything light and easy days.
And when it happens - and oh, it happens! - I am waiting, as much as I try not to, for it to end, inevitably, for the familiar roar of illness to catch up with me again.
On really bad days, R says to me, just wait a bit, love, you'll get better. While on really good days, my inner voice says, wait, this cannot last.

A young woman writes to me, her partner - equally young and formerly a successful business man - has been diagnosed with my shitty disease and started to self medicate with pain killers and drink because he has lost all confidence in medicine anyway. She is hoping I can help. A pep talk on attitude, self-respecting resignation, wisdom even.

It takes me a few days before I realise how angry her request makes me. How angry I am with my helplessness. I feel such a fake. There is no cure, I reply. You can change doctors but the treatment protocol is the same. Find an expert you both like, maybe it helps. I write, try distraction, meditation, relaxation, stay informed, all that useless rubbish, complete with links.

 

I once lived a wild life, in a big house full of people, mad ideas and loud wonderful music, we baked bread and the bathroom had a large hole in the floor boards. We celebrated very big parties, wild parties, spending most of the day moving furniture to create space, stacking albums in large towering piles, covering the floor in the attic with mattresses and blankets for the kids, cooked vast pots of kidney bean chili with brown rice and of course, the drink, the drugs.

I lived in Africa, I have been to India, I have climbed mountains and swam in vast oceans. I slept on beaches and trains, I milked goats, made cheese, mixed cement and built walls. With my hands. I danced all night.

Today, I cycled for almost 15 kilometers through the forest, R tells me, he checked the distance. We stopped for coffee and cake. My hands were shaking, my knees like jelly.
I know I am waiting.
So what.