Last week an online Open Book group was reading from Nick Makoha’s new poem collection, The New Carthaginians – which according to one review, has: ‘a trio of characters – the Poet, a Black Icarus, a resurrected Jean-Michel Basquiat – embarking on a hero’s odyssey… gathering the symbols of a new mythos’. 

It made me think about writing my and my sick friends’ stories of  embarking on our own hero’s / heroes’ odyssey – the heroic quest of finding our way through the harsh, inhospitable land of the sick, supporting each other, largely without any professional help.

And also made me think of how Johanna Hedva centralised someone with ‘traditionally anti-heroic qualities – namely illness…and inaction – as capable of being the symbol of a grand Theory’ in Sick Woman Theory. Subverting the normative expectation of a hero, making us the heroes instead – we who are forced to always be slow, be still, be inactive, to wait, to pull back, to be careful, to not-do. These are incredibly hard things to do, without any relief, ever, from action, movement,  doing; but I think the abled world mostly doesn’t see that. Those who’ve always lived in the land of the well think of rest as a perk, as easy, as lazy, as not valued; just as the normative world sees action, busyness, doing, as valuable, and valued.

And I like the idea of ‘gathering the symbols of a new mythos’: a new mythology of chronic illness, a non-normative life?