@skippingmoonrocks
Not exactly what you’re probably looking for, but The Diving Bell and the Butterfly was written by someone with locked-in syndrome, which is an extreme level of bedbound.
@mcmullin i'd love to read that, thanks for mentioning it
@skippingmoonrocks
It’s by a French journalist who survived a stroke and was left “locked in.” https://www.lisez.com/livres/le-scaphandre-et-le-papillon/9782221258521 I read it in an English translation a few years ago.
@skippingmoonrocks
Locked-in syndrome, for those who are not familiar with the term, is when you are completely or almost completely paralyzed, unable to speak, move, eat etc, but are still fully awake and cognizant. It is easily mistaken for a persistent vegetative state, but many locked-in patients are able to communicate by blinking their eyes, wiggling a finger, or some other small motion they can still control.
@skippingmoonrocks
Most healthy people, when asked if they would want to continue living like that, say no. My wife is a neurologist, who has had several locked-in patients through the years. 100% of them have said yes. I think of this often, especially in the context of advanced directives, do-not-resuscitate codes, euthanasia or general ableism.
@mcmullin people say that about my life/illness too (i'm bedbound with ME/CFS). But I think they often say that out of fear. They see all the things they would lose if they'd end up like me. I already lost all those things. And every loss came with grief. But I also experience a lot of beauty and love. I don't actually think my life is less fullfilling than when I was still healthy and running around a university, thinking things like 'career' were in my future.
Of course I don't speak for everybody who has ME/CFS when I say this, only for myself. And of course, me typing this relatively quick is enough proof that I have so much more options to express and enjoy myself compared to lock-in people. But I get it. Life is worth living.
And this conversation reminds me of this poem I wrote a view months ago. I probably said it better back then.
@skippingmoonrocks
By religious conviction, general temperament, and some would say naivety and bias, I believe life is worth living. But my point is not that that’s what everyone should think, just that you cannot know what you would think in a situation like that until you are actually in that situation. (Which goes for me too.) I admire your hope and courage.
@skippingmoonrocks
The poem says it very well.
@mcmullin @skippingmoonrocks There's also Ghost Boy, Martin Pistorius' memoir (who was 12 when he became locked-in; unsure how old he was when he began writing it) though it's a very heavy read given both his age and things that happened to him while he was hospitalised.