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Riskippingmoonrocks@sunny.garden
Nov 2, 2026, 2:50 PM
telling a friend about the sound of a wild snail eating made me go back to the webshop where i bought it ( https://libro.fm/audiobooks/9781399419017-the-sound-of-a-wild-snail-eating ) and noticing it's not even marked as a book about disability.
No wonder I hardly ever stumble upon books about/from bedbound people.
Aside from the book I just mentioned the only other example I can think of now is 'we are the winter people', a poetry collection by Jenny Rowbury.
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Replies

Riskippingmoonrocks@sunny.garden
Nov 2, 2026, 2:52 PM
so please tell me, if you know other books about bedbound people (fiction counts too), or books written by them.
It needs to be an audiobook to be accessible to me, but i'm still interested to learn about books I will not be able to read myself.
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🎃Ellen🐈‍⬛Starry1086@wandering.shop
Nov 2, 2026, 3:13 PM
@skippingmoonrocks I've heard of, but not yet read, How to Tell When We Will Die by Johanna Hedva. I believe the author is bedbound but not sure.
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Sarah dreams of beansbeandreams@sunny.garden
Nov 2, 2026, 3:56 PM
@Starry1086 @skippingmoonrocks I know Hedva from her old article Sick Woman Theory. She talks about having dynamic symptoms, sometimes being bedbound for long periods and sometimes not. I appreciate having a freaky goth artist in the mix-- really prevents anyone from thinking illness is a Hallmark Channel type topic
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Riskippingmoonrocks@sunny.garden
Nov 2, 2026, 5:13 PM
@beandreams @Starry1086 interesting. That's the 4th time in 8 days someone mentions that author to me. Before that I never heard of her! Already decided that my next libro credit is going to buy this book (just have to wait 3 weeks)
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Sarah dreams of beansbeandreams@sunny.garden
Nov 2, 2026, 3:41 PM
@skippingmoonrocks @ContraindiKate I have queued but not read Nobody's Empire, the autobiographical-ish novel by Stuart Murdoch from Belle and Sebastian. He has ME/CFS, currently in remission.
https://www.theguardian.com/books/2024/oct/19/nobodys-empire-by-stuart-murdoch-review-belle-and-sebastian-and-me
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Sarah dreams of beansbeandreams@sunny.garden
Nov 2, 2026, 3:51 PM
@skippingmoonrocks @ContraindiKate More of a nonfiction memoir, but there is also Invisible Kingdom by Meghan O'Rourke ❤️
https://en.wikipedia.org/wiki/The_Invisible_Kingdom
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Sarah dreams of beansbeandreams@sunny.garden
Nov 2, 2026, 3:53 PM
@skippingmoonrocks @ContraindiKate I wish Laura Hillenbrand would write a memoir. She is the author of Seabiscuit and other nonfiction, and I really appreciated her New Yorker article about developing ME/CFS and no one having any clue what was going on.
https://www.newyorker.com/magazine/2003/07/07/a-sudden-illness
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Riskippingmoonrocks@sunny.garden
Nov 2, 2026, 5:27 PM
@beandreams @ContraindiKate thank you! You mentioned a book that I own (on paper sadly, so can't reread it) and now that you mention it, i loved Invisible Kingdom when I read it 5 years ago. Nobody's empire has been on my wishlist for forever, the song with the same title is one of the songs i listen to on repeat when processing chronic illness feelings.
I looked at 2 books by Laura Hillenbrand, and unsure if i'm into a sports memoir right now, but I will write her name down somewhere so i remember it later.
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sussus@timeloop.cafe
Nov 2, 2026, 4:05 PM
@skippingmoonrocks i like Masaoka Shiki’s poetry. He wrote bedbound and dying of tuberculosis. I haven’t read his essays yet, but would like to https://itetsu.jp/main/wp-content/uploads/2021/04/JPHCM13_INO.pdf
Edit: pdf maybe not accessible for you, but here’s a poem of his that encapsulates some of the bedbound experience. Makes me cry every time.
the sprays of wisteria
arranged in the vase
are so short
they don’t reach
to the tatami
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David McMullinmcmullin@musicians.today
Nov 2, 2026, 5:04 PM
@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.
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Riskippingmoonrocks@sunny.garden
Nov 2, 2026, 5:11 PM
@mcmullin i'd love to read that, thanks for mentioning it
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David McMullinmcmullin@musicians.today
Nov 2, 2026, 5:16 PM
@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.
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David McMullinmcmullin@musicians.today
Nov 2, 2026, 5:29 PM
@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.
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David McMullinmcmullin@musicians.today
Nov 2, 2026, 5:39 PM
@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.
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Riskippingmoonrocks@sunny.garden
Nov 2, 2026, 5:50 PM
@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.
https://sunny.garden/@skippingmoonrocks/116205152716272611
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David McMullinmcmullin@musicians.today
Nov 2, 2026, 6:18 PM
@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.
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David McMullinmcmullin@musicians.today
Nov 2, 2026, 6:20 PM
@skippingmoonrocks
The poem says it very well.
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Mre. Dartigen [maker mode]dartigen@aus.social
Nov 3, 2026, 11:04 AM
@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.
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TamtamTamtam@mastodon.de
Nov 2, 2026, 6:50 PM
@skippingmoonrocks Astrid Lindgren, the brothers Lionheart. It's a children's book. There's a sick child, a dragon, an insurrection and two brothers eternal true love.
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Tobias 🌒🌕🌘catdad@ohai.social
Nov 2, 2026, 9:16 PM
@skippingmoonrocks The Comforts of Madness, by Paul Sayer. Not sure if it's an audiobook or not. Worth a read/listen though :blobcatblush:
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BimboBigTittyBimbo@autonomous.zone
Nov 3, 2026, 7:00 AM
@skippingmoonrocks the diving bell and the butterfly
Wiki link: https://en.wikipedia.org/wiki/The_Diving_Bell_and_the_Butterfly_(film)
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Noli timerenolitimere@toot.wales
Nov 3, 2026, 12:52 PM
@skippingmoonrocks “Through the Shadowlands” by Julie Rehmeyer
“The Invisible Kingdom” by Meghan O’Rourke
Both are memoirs about
- living with ME/CFS-type symptoms, including being bedbound at times
- struggling to get medical help/a diagnosis
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Paul LalondeFlux@wandering.shop
Nov 2, 2026, 4:08 PM
@skippingmoonrocks Jo Walton _My Real Children_. Beautiful treatment of end of life dementia.
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Riskippingmoonrocks@sunny.garden
Nov 2, 2026, 5:41 PM
@Flux i cou;dn't find this one in audioform (yet) but i'm happy to know it's out there <3
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Paul LalondeFlux@wandering.shop
Nov 2, 2026, 6:19 PM
@skippingmoonrocks Alison Larkin narrated it, and I see it at https://share.google/jo44SRJf0DsO6tk0b. I have no idea about non-Canadian markets, however.
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Riskippingmoonrocks@sunny.garden
Nov 2, 2026, 6:35 PM
@Flux well if the audiobook exists, i'm hopeful that sooner or later it will exist in a shop i have acess to. I'll write the title/author down so I will remember to look for it later. Thanks for the recommendation <3
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NilaJonesNilaJones@zeroes.ca
Nov 2, 2026, 9:45 PM
@skippingmoonrocks @Flux
Jo Walton is wonderful! If you are unfamiliar with her, you are in for a whole bunch of terrific books
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NilaJonesNilaJones@zeroes.ca
Nov 2, 2026, 9:47 PM
@skippingmoonrocks
Piranesi, by Susanna Clarke, who has mecfs, reads to me and many other people like a metaphor for being homebound, if not bedbound. The author says she did not intend it that way
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