This is an amazing article and , although I don’t consider myself chronically ill (I like to say I’m chronically altered) I resonated with this so much. I’m always fighting between accepting and desiring. I can never find that happy medium…it always feels like it’s just out of reach and it’s exhausting.
I agree! What a pleasure to read this piece. I especially enjoyed your weaving in of the Rapunzel fairy tale in relation to your life, and all things Audre Lorde:).
We do a lot of identity-building around our desires, even our most simple and easily categorizable desires. "I'm a foodie." "I'm a smoker." "I'm an alcoholic." "I'm a lover, not fighter." It makes intuitive sense. You are what you do, you do what you want.
But then, when the desires get more complicated and hard to pin down, so does that sense of self. You like eating? Go out and eat! You like the ineffable feeling of mystic communion with a de-semiotized reality? Um.... go out and eat?
I'd even take the agent out of that idea: a lot of identity building HAPPENS around our desires. Because we don't really get to choose what we want, or who and what we become, although of course we can cultivate the types of thoughts, behaviors, interactions and experiences that might give rise to more wholesome desires (eg, not smoking). And we can choose how we want to talk about ourselves, which is a part of identity building. And also, we're conflicted, ambivalent beings who second-guess ourselves and decide we didn't want the thing after all once we get it. But either way--we do have to eat.
I am chronically ill (ME/CFS and Long Covid with a side of back injury). I've been able to go outside and do something here or there for the last 2 weeks, but mostly I've been inside, in bed, in a sort of crash then a mini-crash. (The first week was pure bedrest. This second it was clear I'm not 100% so a few light errands but not many. I've canceled the more physically demanding thing I was going to do this weekend. Too close to a bad crash.)
It's all true. I'm also at an age (60s) where people's reactions to still being a sexual being are pretty negative. I grew up hearing desire went away with menopause and I was afraid of that. Ha! No worries, we still have it.
It's a very weird flip that happens to women/femmes. Not a fan.
Oof, I hope you get some relief soon. Having an injury or illness on top of ME always seems like too much of an insult. I would love to see more writing about femme sexuality and desire and aging and illness. Maybe I'll *do* more writing about these things. If you do, please let me know, I'd be interested to hear your thoughts!
I love this piece and how you weaved the mythology into it. Second time today the story of Persephone came up. I’m going to have to see if it comes up a third time and then have a little freak out. Beautiful writing, Rachel. And I hope your symptoms pass soon. Xx
Synchronicities! I believe pomegranates are in season; I've been enjoying them and feeling decadent. It's high summer and Persephone is among us. Thanks for reading <3
Love and appreciate this piece so much. Trying to find the balance of desire and acceptance is proving excruciatingly difficult for me still, even after several years of reckoning with my deepening disability. It’s so painful sometimes to desire that “normalcy” that non-disabled people have while simultaneously feeling like you have to “prove” just how sick you are and “justify” your inability to thrive in their world. The back and forth is so frustrating.
Thank you for writing and sharing this. Sending love from a fellow disabled hermit 🫶🏻
Oof, that hits. And in a world that blames people for our challenges, that process of “justification” can also feel so corrosive to our self-respect. It’s so important for us to connect with each other and have these conversations, to assert our anguish and our passion, the validity of our experience and the vitality of our genius to this world, our absolute right to have our needs met. Thanks for reading and commenting. Love and solidarity from my lonely tower to yours.
Thank you. These tensions and archetypes can thread through vastly different life experiences, for sure. (Thanks too for the work you put into the world. It's had a huge impact on my practice.)
This is fantastic Rachel! So good. I relate to being locked in a tower of my parents cult religion and you helped me think more deeply about the fairy tale. All based in desire. Seems bad! And in the religion it was!
An excellent piece of writing. I feel for you. I have been in a bad ME/Fibro crash for a year, having been stable ish at an okish level with occasional blips for years. I desire more socialising and more ability to leave the house and more connections with people
Thank you for the kind words and the solidarity. The unpredictability and variability of these diseases is so hard to deal with. Thank you for reading and being here <3
The concept of shifting baselines is so fascinating in this context. While I am nowhere near as sick as you are, I observe in myself the shift from "I would be thrilled to be able to walk down the block with my family" to, now that many blocks are available to me, "why can't I take my child to the zoo? Why can't we just go and do things?"
And I think it is both true that we can and should find joy in the little things AND that that is toxic positivity horseshit. We are allowed to need more than our circumstances allow.
Absolutely. And the both-and of it all is sometimes hard to hold—I wonder why that is? I think the culture we live in cultivates feelings of deprivation and lack in a general way, because we’re always being marketed to and that’s how marketing works. At the same time, for disabled folks, or people who are oppressed, or living in poverty, there’s a strong tendency to victim-blame and insist that lack indicates unworthiness (and conversely that privilege or wealth confers worth). So we’re getting all these weird messages about what it means to want more than we have.
I desire to read more of your prose. You are gifted.
Thank you, dear friend!
This is an amazing article and , although I don’t consider myself chronically ill (I like to say I’m chronically altered) I resonated with this so much. I’m always fighting between accepting and desiring. I can never find that happy medium…it always feels like it’s just out of reach and it’s exhausting.
Thank you! Yes, that tension between acceptance and desire is such a basic part of the human condition. And it is exhausting! When do we get to rest?
The way this moved through ideas and threaded them with such skill - I had to subscribe!
That is lovely feedback to receive, this essay does cover a lot of ground and I worried that it maybe tried to do too much. Thank you!
I agree! What a pleasure to read this piece. I especially enjoyed your weaving in of the Rapunzel fairy tale in relation to your life, and all things Audre Lorde:).
Thank you Jennifer! Yes, always grateful for Audre Lorde, and that essay in particular!
Yes! Audre Lorde is always stunning.
AMAZING WORK AS ALWAYS!
Thank you so much!!
We do a lot of identity-building around our desires, even our most simple and easily categorizable desires. "I'm a foodie." "I'm a smoker." "I'm an alcoholic." "I'm a lover, not fighter." It makes intuitive sense. You are what you do, you do what you want.
But then, when the desires get more complicated and hard to pin down, so does that sense of self. You like eating? Go out and eat! You like the ineffable feeling of mystic communion with a de-semiotized reality? Um.... go out and eat?
I'd even take the agent out of that idea: a lot of identity building HAPPENS around our desires. Because we don't really get to choose what we want, or who and what we become, although of course we can cultivate the types of thoughts, behaviors, interactions and experiences that might give rise to more wholesome desires (eg, not smoking). And we can choose how we want to talk about ourselves, which is a part of identity building. And also, we're conflicted, ambivalent beings who second-guess ourselves and decide we didn't want the thing after all once we get it. But either way--we do have to eat.
I am chronically ill (ME/CFS and Long Covid with a side of back injury). I've been able to go outside and do something here or there for the last 2 weeks, but mostly I've been inside, in bed, in a sort of crash then a mini-crash. (The first week was pure bedrest. This second it was clear I'm not 100% so a few light errands but not many. I've canceled the more physically demanding thing I was going to do this weekend. Too close to a bad crash.)
It's all true. I'm also at an age (60s) where people's reactions to still being a sexual being are pretty negative. I grew up hearing desire went away with menopause and I was afraid of that. Ha! No worries, we still have it.
It's a very weird flip that happens to women/femmes. Not a fan.
Oof, I hope you get some relief soon. Having an injury or illness on top of ME always seems like too much of an insult. I would love to see more writing about femme sexuality and desire and aging and illness. Maybe I'll *do* more writing about these things. If you do, please let me know, I'd be interested to hear your thoughts!
I love this piece and how you weaved the mythology into it. Second time today the story of Persephone came up. I’m going to have to see if it comes up a third time and then have a little freak out. Beautiful writing, Rachel. And I hope your symptoms pass soon. Xx
Synchronicities! I believe pomegranates are in season; I've been enjoying them and feeling decadent. It's high summer and Persephone is among us. Thanks for reading <3
Love and appreciate this piece so much. Trying to find the balance of desire and acceptance is proving excruciatingly difficult for me still, even after several years of reckoning with my deepening disability. It’s so painful sometimes to desire that “normalcy” that non-disabled people have while simultaneously feeling like you have to “prove” just how sick you are and “justify” your inability to thrive in their world. The back and forth is so frustrating.
Thank you for writing and sharing this. Sending love from a fellow disabled hermit 🫶🏻
Oof, that hits. And in a world that blames people for our challenges, that process of “justification” can also feel so corrosive to our self-respect. It’s so important for us to connect with each other and have these conversations, to assert our anguish and our passion, the validity of our experience and the vitality of our genius to this world, our absolute right to have our needs met. Thanks for reading and commenting. Love and solidarity from my lonely tower to yours.
This is a fantastic piece and one that has a weird, echoey resonance with my experience, even though our situations are vastly different. Thank you.
Thank you. These tensions and archetypes can thread through vastly different life experiences, for sure. (Thanks too for the work you put into the world. It's had a huge impact on my practice.)
Thanks for the kind words, I always hope it's useful, but you never really know!
This is fantastic Rachel! So good. I relate to being locked in a tower of my parents cult religion and you helped me think more deeply about the fairy tale. All based in desire. Seems bad! And in the religion it was!
Thank you, Kelly! There are so many ways that we can be trapped in this world. I am so glad this resonated with you <3
An excellent piece of writing. I feel for you. I have been in a bad ME/Fibro crash for a year, having been stable ish at an okish level with occasional blips for years. I desire more socialising and more ability to leave the house and more connections with people
Thank you for the kind words and the solidarity. The unpredictability and variability of these diseases is so hard to deal with. Thank you for reading and being here <3
Thank you!
The concept of shifting baselines is so fascinating in this context. While I am nowhere near as sick as you are, I observe in myself the shift from "I would be thrilled to be able to walk down the block with my family" to, now that many blocks are available to me, "why can't I take my child to the zoo? Why can't we just go and do things?"
And I think it is both true that we can and should find joy in the little things AND that that is toxic positivity horseshit. We are allowed to need more than our circumstances allow.
Absolutely. And the both-and of it all is sometimes hard to hold—I wonder why that is? I think the culture we live in cultivates feelings of deprivation and lack in a general way, because we’re always being marketed to and that’s how marketing works. At the same time, for disabled folks, or people who are oppressed, or living in poverty, there’s a strong tendency to victim-blame and insist that lack indicates unworthiness (and conversely that privilege or wealth confers worth). So we’re getting all these weird messages about what it means to want more than we have.