I’d always intended ‘Writewipe’ to be a blog about the bit between being a carer for a medically complex child and a writer. Instead, it tends to swing wildly between the two, for which I have zero apologies. This week in my mad rush to get seen as a writer (I’ve been at @reclamation2022 aka Eastercon, all weekend) I instead got seen as a carer. Sort of. Some rather clever and lovely ethics researchers have been looking into ways to get the message across about what it’s like to be a carer for someone who has no diagnosis or is so vanishingly rare, they might as well not have one. (Note here for the newbies, my youngest has a genetic condition called CTBP1. There were 12 kids in the world with it at last count.) I kind of talk about that on the blog here.
So they decided that a writing project, using all kinds of different fun techniques, would give us the tools to tell the stories, good and bad. And it really, really did. So the final, paper, complete with all the scientific commentary is linked here. I loved it, loved the process and loved working with the team and the other writers. Maybe I’ve got enough tools to approach some of the stuff that’s just been too raw. I suppose I’d better crack on and write it and let you be the judge of that!
For my bit, you’re looking for the writing piece called ‘Section 3: Word Salad Counsellor’ and the comments after. Link here: https://doi.org/10.1136/medhum-2021-012346
