Like if there was an exhibition of art made by people with chronic fatigue syndrome, part of the message would be that it looks the same as art made by anyone else.
I love this, but it does also immediately make me think (because my mind's a damn contrarian) of the fact that Piranesi is so short and has such simple plain language compared to the previous epistolary writing of Suzanne Clark because of her CFS, and that she wrote it so radically differently, and the themes changed so much, *because* of her CFS, and she's said that repeatedly in interviews with a kind of...not melancholy, but certainly awareness that this is the only way she knows how to do it now, and that she can't go back. (Which I think just comes into the thing you say in the same paragraph in that there's no defined subculture). (And maybe she can go back, or maybe she'll keep going forwards, who knows).
There's nothing potent in that, I just found her transition from something as dense and actually impossible for me to read to Piranesi (which was easy for me to read) being due to CFS pretty remarkable.
Also yeah there's like this... particular feeling when something is accomplished among people who Get Fatigue. When I cook a meal, it's huge - it might not be for someone else with fatigue but it is for me. It is as impressive and exciting as going to a movie or concert. There are things which are like... I enjoy celebrating that with someone else who gets it - and their achievements too. Whether it's laundry, or folding, or making lunch. And then the achievements like finishing a project, just... it's not compersion but it's some kind of happy-making feeling of like 'yeahhhhh!!!' being happy for someone else.
None of this is particularly relevant to the article though, which I found super interesting.
One of the defining features of our disability is that we don't have the energy to create such a thing!
This is one of those things that seems so obvious and yet had never concretely occurred to me before and I'll be noodling on it and my own fatigue stuff (which has often made me feel separate from the Disability community because I'm too tired to participate in it much which I'm now like 'oh that's literally... oh right okay, cool') and just...yeah anyway I really like reading your posts you don't have to reply to my rambling! <333
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I love this, but it does also immediately make me think (because my mind's a damn contrarian) of the fact that Piranesi is so short and has such simple plain language compared to the previous epistolary writing of Suzanne Clark because of her CFS, and that she wrote it so radically differently, and the themes changed so much, *because* of her CFS, and she's said that repeatedly in interviews with a kind of...not melancholy, but certainly awareness that this is the only way she knows how to do it now, and that she can't go back. (Which I think just comes into the thing you say in the same paragraph in that there's no defined subculture). (And maybe she can go back, or maybe she'll keep going forwards, who knows).
There's nothing potent in that, I just found her transition from something as dense and actually impossible for me to read to Piranesi (which was easy for me to read) being due to CFS pretty remarkable.
Also yeah there's like this... particular feeling when something is accomplished among people who Get Fatigue. When I cook a meal, it's huge - it might not be for someone else with fatigue but it is for me. It is as impressive and exciting as going to a movie or concert. There are things which are like... I enjoy celebrating that with someone else who gets it - and their achievements too. Whether it's laundry, or folding, or making lunch. And then the achievements like finishing a project, just... it's not compersion but it's some kind of happy-making feeling of like 'yeahhhhh!!!' being happy for someone else.
None of this is particularly relevant to the article though, which I found super interesting.
One of the defining features of our disability is that we don't have the energy to create such a thing!
This is one of those things that seems so obvious and yet had never concretely occurred to me before and I'll be noodling on it and my own fatigue stuff (which has often made me feel separate from the Disability community because I'm too tired to participate in it much which I'm now like 'oh that's literally... oh right okay, cool') and just...yeah anyway I really like reading your posts you don't have to reply to my rambling! <333