“I’ve learned that stopping is a creative discipline. It’s a form of self-trust. It’s a refusal to sacrifice tomorrow for today’s output.” Perfectly captured. It’s been amazing for me to see how my body recognizes the activities where I have historically exceeded my limits. Where in the past I have consistently not listened. Thankfully she is forgiving, and I’m now doing the slow work of regaining her trust. And I find it ultimately benefits my work — the product — to step away and return with refreshed perspective.
I find this too, that even though it’s hard to sever the flow connection to keep going until something is done, my work benefits greatly from stepping away and returning! Thank you Rebecca ❤️🩹🫂
This piece gave language to something I’ve been thinking about.
What struck me is that I don’t actually know the grief of losing immersion creatively, because my writing life developed after chronic illness already shaped my days.
I never learned to create without awareness of energy, time, or the body.
So my work has always been built in fragments. A note here. A story there. A moment of clarity when capacity allows.
Over time, the pieces begin speaking to each other.
I love this Mary. I feel like my work is similar these days, fragments that come together unexpectedly. I’m such a detail focused person that I often have to remind myself of how things can come together as a whole eventually.
Oh this touched me so deeply. Recently I released an EP called Miniature Works- it was very short pieces I made over the years. They were easy to make and didn’t take long and I loved them but I never thought they had value because of their brevity. But then I thought this is music made under the conditions that I can manage and that don’t kill me, and they have worth. So I released them and it feels like exactly what you have say ‘disabled creativity’. Thank you so much for your ability to name these processes you go through because every time you do I feel that a chime has resonated in me.
This means a lot to me. “Music made under the conditions I can manage and that don’t kill me” is such a powerful reframe, and I’m really glad you honored that and released them! There’s something so real and necessary about work that’s shaped by our actual limits.
I've not heard anyone else express this mourning around creativity and you captured it. I feel as if my entire way of thinking changed and I couldn't reach my creative self at all. As if I could feel the unchecked inflammation squeezing the life out of my Self. As the condition is being better managed, I feel glimmers again. I'm learning what it feels like to honor what's there. Thank you for putting this into words.
This resonates. I’m learning that much of autistic burnout/chronic illness is the invisible, daily calculation of consequences ~ trying to figure out in real time which activities are worth the fallout, and how to stop before I push myself into days of recovery.
There’s grief in realizing I pushed myself beyond my limits for so many years that I barely have access to art right now and am only just beginning to write publicly again.
Appreciate you articulating this ~ a largely invisible and ignored consequence of chronic illness/disability ~ so clearly.
I really feel where you’re at Susan. It’s so similar to the space I’m in. I too pushed myself way past my limits before I knew I was autistic, and the burnout I’m in now is pretty scary… not knowing how or when I will recover. Sending you big hugs.
"I learned how to be sick" puts this right in my wheelhouse. For a long time, I accepted not being able to keep up. I was never going to be 100% healthy and I am at peace with that existence.
I've learned to do the same, looking back at something I made happen in the last year, something as close to what I used to do, crumbs of it but in fact perhaps more nourishing, so crumbs that feed me better, crumbs that are small but mighty in terms of giving something back to myself, living with and accepting a diabolical disease I live with. With thanks for this beautiful reminder of devotion, to the self, for care and of course.....love x
This touched me deeply. After the 3rd round with my cancer, I lost the ability to design my quilts or any of my 3D art. The function was just gone. I could crochet beanies to donate to cancer center or make a few cards but not the other.
It is past the 2 years. I am far enough away from my active treatment that I am finding a small increase in my stamina. I had a friend visit last weekend. We spent part of one day making fabric flowers for a few wallhangings I want to make. I almost cried I was so happy. Like when I did a bit of mending on my machine a few months ago, I cried as it had been 2 years.
I really have to be careful as you say to stop before I ruin tomorrow.
I appreciate your facility to explain these things with heart and clarity.
I really feel this, Celia! Letting our favorite creative pursuits rest because we need rest is so painful. I hadn’t done much music creation in over a year until this spring, and it’s just like you describe, the joy overflows! I’m so happy to hear you’re able to come back to your creations now, even if it’s in small increments for now.
This piece spoke to, not just my disabled/chronically ill reality, but also my journey of trauma recovery.
At this stage in my recovery journey, I can only tolerate small crumbs of emotional and somatic presence before it all becomes too overwhelming for my nervous system and I have to move back into dissociation and numbing out again.
I know I've made progress with being more present with my emotions and trauma and in my body, but I still need to take regular breaks to let my nervous system rest.
I relate to this so much, Lulu. Last year I read something about how true emotional intelligence isn’t just about feeling things whenever you feel them but about being able to say something like — now is not the time, I’ll process this later. Especially when we know we’re not in a safe space to do the processing. Trying to process emotions in unsafe spaces can be more harmful than being able to let them rest and recover before you face it. I thought this was so brilliant. Something I had never realized before! There is wisdom in processing at the speed that our body can handle safely.
I felt this way about music, and about other things, too. I love things passionately and don't mind swimming in the depths of them and getting rolled by the undertow until it spits me back out, really. Currently it's engineering for me, creating mathematical models in my head and them making them work in electricity or in code to effectively work on my behalf. This is now the most restful and beautifully complex world I can live in. I get the feeling I'm just a brain, the pain is not even there until I remember it.
The past two days I've been encouraged to rest because I'm just avoiding being in the hospital so I don't have to be apart from my kids in Mother's Day. Reading Godel Escher Bach in the Public Garden in Boston while waiting hours for the train home, hospital heat pads shoved in my waistband and loving the experience of feeling like Narcissus by his reflecting pool staring at his beauty, the flowers in the trees and the tulips on the mounds of grass. My mind is so my savoir from this life. My eye sees all the beauty and understands the work and labor by those who love the land. Little girls from the swan boat screamed at the arborists (my friends actually! From a healthier time of my life) "Don't kill trees! Save the earth!" And I called back "don't worry they're just pruning!" Removing the end weights to allow the branch unions to hold for another half century and more. Shedding is careful preservation for a long lasting life.
You give me so much peace and reflection with your words, constantly. Before I found you here I didn't know how to connect my own isolated struggle with others. Thank you for continuing to be this creative power and for all you give that makes this world good to live in. 💗
This is so beautiful Elle! “Shedding is careful preservation” especially hit me deeply. I know exactly what you mean about the mind becoming a place to live inside of when the body becomes difficult to inhabit. I’m so grateful my words found you here. 💗
“I’ve learned that stopping is a creative discipline. It’s a form of self-trust. It’s a refusal to sacrifice tomorrow for today’s output.” Perfectly captured. It’s been amazing for me to see how my body recognizes the activities where I have historically exceeded my limits. Where in the past I have consistently not listened. Thankfully she is forgiving, and I’m now doing the slow work of regaining her trust. And I find it ultimately benefits my work — the product — to step away and return with refreshed perspective.
I find this too, that even though it’s hard to sever the flow connection to keep going until something is done, my work benefits greatly from stepping away and returning! Thank you Rebecca ❤️🩹🫂
This piece gave language to something I’ve been thinking about.
What struck me is that I don’t actually know the grief of losing immersion creatively, because my writing life developed after chronic illness already shaped my days.
I never learned to create without awareness of energy, time, or the body.
So my work has always been built in fragments. A note here. A story there. A moment of clarity when capacity allows.
Over time, the pieces begin speaking to each other.
And eventually, a larger shape emerges.
I love this Mary. I feel like my work is similar these days, fragments that come together unexpectedly. I’m such a detail focused person that I often have to remind myself of how things can come together as a whole eventually.
Oh this touched me so deeply. Recently I released an EP called Miniature Works- it was very short pieces I made over the years. They were easy to make and didn’t take long and I loved them but I never thought they had value because of their brevity. But then I thought this is music made under the conditions that I can manage and that don’t kill me, and they have worth. So I released them and it feels like exactly what you have say ‘disabled creativity’. Thank you so much for your ability to name these processes you go through because every time you do I feel that a chime has resonated in me.
This means a lot to me. “Music made under the conditions I can manage and that don’t kill me” is such a powerful reframe, and I’m really glad you honored that and released them! There’s something so real and necessary about work that’s shaped by our actual limits.
I've not heard anyone else express this mourning around creativity and you captured it. I feel as if my entire way of thinking changed and I couldn't reach my creative self at all. As if I could feel the unchecked inflammation squeezing the life out of my Self. As the condition is being better managed, I feel glimmers again. I'm learning what it feels like to honor what's there. Thank you for putting this into words.
Thank you so much Valerie. I’m honored that this piece connected with you!
This resonates. I’m learning that much of autistic burnout/chronic illness is the invisible, daily calculation of consequences ~ trying to figure out in real time which activities are worth the fallout, and how to stop before I push myself into days of recovery.
There’s grief in realizing I pushed myself beyond my limits for so many years that I barely have access to art right now and am only just beginning to write publicly again.
Appreciate you articulating this ~ a largely invisible and ignored consequence of chronic illness/disability ~ so clearly.
I really feel where you’re at Susan. It’s so similar to the space I’m in. I too pushed myself way past my limits before I knew I was autistic, and the burnout I’m in now is pretty scary… not knowing how or when I will recover. Sending you big hugs.
"I learned how to be sick" puts this right in my wheelhouse. For a long time, I accepted not being able to keep up. I was never going to be 100% healthy and I am at peace with that existence.
Peace is always the goal!
Such a beautiful reflection on how creativity feels then vs now, before vs after chronic illness.
Thank you Katie!
You speak to so many of us so beautifully, Vox.
I've learned to do the same, looking back at something I made happen in the last year, something as close to what I used to do, crumbs of it but in fact perhaps more nourishing, so crumbs that feed me better, crumbs that are small but mighty in terms of giving something back to myself, living with and accepting a diabolical disease I live with. With thanks for this beautiful reminder of devotion, to the self, for care and of course.....love x
Thank you so much Madeleine! So grateful to have connected with you here.
This touched me deeply. After the 3rd round with my cancer, I lost the ability to design my quilts or any of my 3D art. The function was just gone. I could crochet beanies to donate to cancer center or make a few cards but not the other.
It is past the 2 years. I am far enough away from my active treatment that I am finding a small increase in my stamina. I had a friend visit last weekend. We spent part of one day making fabric flowers for a few wallhangings I want to make. I almost cried I was so happy. Like when I did a bit of mending on my machine a few months ago, I cried as it had been 2 years.
I really have to be careful as you say to stop before I ruin tomorrow.
I appreciate your facility to explain these things with heart and clarity.
I really feel this, Celia! Letting our favorite creative pursuits rest because we need rest is so painful. I hadn’t done much music creation in over a year until this spring, and it’s just like you describe, the joy overflows! I’m so happy to hear you’re able to come back to your creations now, even if it’s in small increments for now.
“There’s an invisible skill I’ve had to perfect: stopping.“
This should be a monologue in itself. Understanding when you’ve poured out enough. This resonates.
Our creativity in abundant, but the person carrying it is only able to pour out but so much. 🙏🏾
Thank you, Jean!
This piece spoke to, not just my disabled/chronically ill reality, but also my journey of trauma recovery.
At this stage in my recovery journey, I can only tolerate small crumbs of emotional and somatic presence before it all becomes too overwhelming for my nervous system and I have to move back into dissociation and numbing out again.
I know I've made progress with being more present with my emotions and trauma and in my body, but I still need to take regular breaks to let my nervous system rest.
I relate to this so much, Lulu. Last year I read something about how true emotional intelligence isn’t just about feeling things whenever you feel them but about being able to say something like — now is not the time, I’ll process this later. Especially when we know we’re not in a safe space to do the processing. Trying to process emotions in unsafe spaces can be more harmful than being able to let them rest and recover before you face it. I thought this was so brilliant. Something I had never realized before! There is wisdom in processing at the speed that our body can handle safely.
So brilliant, thank you for naming this bittersweet reality.
Thank you sweet Michelle!
Powerful and beautifully written
Thank you so much!
& i just cried the whole time cuz it’s so real 🥹🥹 i feel we are kindred spirits
Sending all my love to you, sweet friend!
I felt this way about music, and about other things, too. I love things passionately and don't mind swimming in the depths of them and getting rolled by the undertow until it spits me back out, really. Currently it's engineering for me, creating mathematical models in my head and them making them work in electricity or in code to effectively work on my behalf. This is now the most restful and beautifully complex world I can live in. I get the feeling I'm just a brain, the pain is not even there until I remember it.
The past two days I've been encouraged to rest because I'm just avoiding being in the hospital so I don't have to be apart from my kids in Mother's Day. Reading Godel Escher Bach in the Public Garden in Boston while waiting hours for the train home, hospital heat pads shoved in my waistband and loving the experience of feeling like Narcissus by his reflecting pool staring at his beauty, the flowers in the trees and the tulips on the mounds of grass. My mind is so my savoir from this life. My eye sees all the beauty and understands the work and labor by those who love the land. Little girls from the swan boat screamed at the arborists (my friends actually! From a healthier time of my life) "Don't kill trees! Save the earth!" And I called back "don't worry they're just pruning!" Removing the end weights to allow the branch unions to hold for another half century and more. Shedding is careful preservation for a long lasting life.
You give me so much peace and reflection with your words, constantly. Before I found you here I didn't know how to connect my own isolated struggle with others. Thank you for continuing to be this creative power and for all you give that makes this world good to live in. 💗
This is so beautiful Elle! “Shedding is careful preservation” especially hit me deeply. I know exactly what you mean about the mind becoming a place to live inside of when the body becomes difficult to inhabit. I’m so grateful my words found you here. 💗
Raw, honest, real. Love this.
Thank you so much Kathryn!