I seem successful online. I edit arts coverage for the website of one of the most prestigious publications in the world; I also edit an international magazine, and since Roger Ebert recommended some of my film reviews people have even started reading them. But my work is all done from my sickbed, with me propped up on pillows and hopped up on painkillers.
I have Myalgic Encephalomyelitis, the existence of which some doctors deny. (The damage those doctors do – to me and hundreds of thousands of others, many as yet undiagnosed – is, incidentally, incalculable.) Many days I can’t get out of bed. Most days I can’t get out of the house. I’m 27 and I still live with my parents because I couldn’t live without them, or without the unaffordable army of nurses and physiotherapists and drivers and cooks and cleaners that’d be needed to cover the duties imposed by their unsought second careers as carers.
ME isn’t an evil illness. It doesn’t blind you (though it contributed considerably to a condition that nearly blinded me). It doesn’t make bits of you turn purple and drop off in the night. It doesn’t make you die. But it does stop you from living. Today it stopped me doing anything I’d want to write about or remember. Fourteen hours of pained and un-refreshing sleep, from which I woke feeling like Lucky Jim in Kingsley Amis’s famed description of his hangover, were followed by an eye-watering migraine and aches and exhaustion of a kind I only felt once pre-ME: when I collapsed, jelly-legged and vomiting, after winning five athletics events in an afternoon.
The evening occasioned some relief: sufficient cognitive clarity to write quickly and some food I could keep down (both rarities recently). As I rose to write this, a friend sent a text message saying that, as no one will check its veracity, I could put: ‘16th of July. Ate griffin’s eggs for breakfast, and then went to the moon with the Duke of Kent.’ But the dull truth warrants recording: I have had a diary-defying day because I live often in life-defying circumstances.
Still, it could be worse. I could have an illness that exists.
