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 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.