My dear Sophie. It's been a minute since reading your newsletter for all the reasons you can imagine living in a body that says no. In the 1990s b/f the science caught up with me, I took up the concept of illness as initiation. Now in my 70s, I'm ready to share mostly due to reading people like you who are not afraid to speak the truth. I love you and your generation. It seems spiritual materialism is as popular as it was in the 60s and 70s. Nothing really changes except the individuals who like you, choose to suffer creatively. Keep it up.
Thank Nance for being some of my soil. For helping me grow. For doing this hard - and often lonely work - well before I started writing. Gratitude and love to you.
You write so eloquently about pain, Sophie. Do you have any posts on the similarity between physical illness and the earth's ailing ecosystem? Does your book make the connection? I am writing a thesis about disabled authors and the ecological crisis and your work is the most profound artistic commentary I've come across.
That’s basically the thesis of my book coming out The Body is a Doorway! Many of my essays (in the book and on substack) are about that painful resonance
Thanks Sophie. I was diagnosed with Parkinson's in 2010. The endless dance with pain, loss, diminishing capacities and enforced stillness in a shrinking world that has ensued has been a source of both grief and joy. I wrote about my experiences quite regularly in the early days but, as time goes on and my daily life routine grows further and further away from that of my friends, family, and peers, I find it harder and harder to word my experiences to the insanely fast-moving mainstream world. So I point them to you. I so admire your ability to put into words experiences that you are normally invisibled by the fast narrative, to speak so eloquently about the transformative potential of chronic wellness that is illness. Thank you.
Thank you as always, for your insight and discernment. It seems my wife and I are about to go on this pain journey together. So this was particularly germane.
In awe, as always, of your ability to distill the human experience into such poetry. Having spent months (years) of my life on the bathroom floor in the intensely painful NOW, I am deeply appreciative of how you give voice to so many. You are in prayers and in my heart daily as you navigate this recent descent. Endless love.
Sophie, I am presently digging myself out of several weeks of what might be euphemistically called "hibernation" but was really simply an inability to function in my life the way I was used to. During this time, I barely managed my email and didn't check my Substack folder at all. Yours was one of the first newsletter voices I noticed I hadn't encountered in a while, and I worried your health had prevented you from writing until I realized that in fact, I hadn't been looking. I am so glad to return to reading your writing.
As I read your piece, I thought about my birth experience and how my labor pain was not as hard to manage as I had expected, mostly because I had such a clear time frame for when it might end. It was the weeks and months that followed when my body and mind no longer functioned as they used to that felt endless.
Thank you for this, I needed to read it: "I want to offer that we do not all need to order our trauma, our psychedelic initiation, our “medicine” or mindfulness, off a bespoke menu."
Your writing is an exquisite punch to the gut - and I mean that in only the best way. It’s been many, many years since I lived with chronic, debilitating pain, and at this point I barely remember it. Thank all goodness. But the psychological pain - PTSD, depression, suicidal ideation - is still a part of my me-ness. Better now in this last (?) third of my life, but it’s so true that in the throes of that kind of pain, all there is is that pain. You described it perfectly - endless now, no past, no future, only that. Enforced eternal now. I feel seen and understood by you sharing your story. Blessings of abundant love to you, dear one. And peace to your soul. 🙏🏼💜
Thank you ❤️ the timing on me coming across this is mythical
I'm currently filling in a questionnaire several pages long about chronic pain and it's definitely written by someone who only theorizes about chronic pain.
Who has the spoons to tabulate their coping for a clinic, when you have no choice but to cope?
When they list their referrals and you've already tried every one
When they think you are drug seeking and you've literally never tried opiates, because you'd have to use them every day,
and are avoiding marijuana because then you are in pain and can't even parent
I need to function, in the world, without my internal screaming externalizing, because my kids deserve whatever I can scrape out of my reserves, while everything is filtered through red red pain
Questionnaires and chronic pain assessments be damned
‘My greatest psychedelic trips have happened totally sober, stitched by the needle of my own ailing body into the present moment again and again without recourse to memory or fantasy.’
i resonates with this HARD.
and to think i put off reading this for fear of … what exactly ? being seen ?
I welcomed a friend into the world of chronic pain today by forwarding your post. Not a glee club but one full of support and like you write; one that contains it's own psychedelic scum and possibly medicine hidden in the muck. If it is there, our inner poets will find it and use it to rise in the stillness and make it magical. Thank you for your contribution and the way you weave your words.
My dear Sophie. It's been a minute since reading your newsletter for all the reasons you can imagine living in a body that says no. In the 1990s b/f the science caught up with me, I took up the concept of illness as initiation. Now in my 70s, I'm ready to share mostly due to reading people like you who are not afraid to speak the truth. I love you and your generation. It seems spiritual materialism is as popular as it was in the 60s and 70s. Nothing really changes except the individuals who like you, choose to suffer creatively. Keep it up.
Thank Nance for being some of my soil. For helping me grow. For doing this hard - and often lonely work - well before I started writing. Gratitude and love to you.
woof. I feel so seen. 🧡
Oh Anna. Big bearhugs to you.
You write so eloquently about pain, Sophie. Do you have any posts on the similarity between physical illness and the earth's ailing ecosystem? Does your book make the connection? I am writing a thesis about disabled authors and the ecological crisis and your work is the most profound artistic commentary I've come across.
That’s basically the thesis of my book coming out The Body is a Doorway! Many of my essays (in the book and on substack) are about that painful resonance
I'm looking forward to reading it. In the meantime, I'll look in the archive to see what else pertains to the topic. Best wishes with the launch.
Thanks Sophie. I was diagnosed with Parkinson's in 2010. The endless dance with pain, loss, diminishing capacities and enforced stillness in a shrinking world that has ensued has been a source of both grief and joy. I wrote about my experiences quite regularly in the early days but, as time goes on and my daily life routine grows further and further away from that of my friends, family, and peers, I find it harder and harder to word my experiences to the insanely fast-moving mainstream world. So I point them to you. I so admire your ability to put into words experiences that you are normally invisibled by the fast narrative, to speak so eloquently about the transformative potential of chronic wellness that is illness. Thank you.
I really relate to what you said. I haven't written for years as I've become increasingly distant from the fertile ground that was my community.
Thank you as always, for your insight and discernment. It seems my wife and I are about to go on this pain journey together. So this was particularly germane.
💚
Thank you so, so much for this. I also have #Ehlers-Danlos Syndrome and I resonated with every word of this.
💕 from one 🦓 to another
In awe, as always, of your ability to distill the human experience into such poetry. Having spent months (years) of my life on the bathroom floor in the intensely painful NOW, I am deeply appreciative of how you give voice to so many. You are in prayers and in my heart daily as you navigate this recent descent. Endless love.
Such vivid writing. Thank you
Thank you for reading, Nicole
I love you, Sophie. Meeanne
Love you too 💛
Sophie, I am presently digging myself out of several weeks of what might be euphemistically called "hibernation" but was really simply an inability to function in my life the way I was used to. During this time, I barely managed my email and didn't check my Substack folder at all. Yours was one of the first newsletter voices I noticed I hadn't encountered in a while, and I worried your health had prevented you from writing until I realized that in fact, I hadn't been looking. I am so glad to return to reading your writing.
As I read your piece, I thought about my birth experience and how my labor pain was not as hard to manage as I had expected, mostly because I had such a clear time frame for when it might end. It was the weeks and months that followed when my body and mind no longer functioned as they used to that felt endless.
Thank you for this, I needed to read it: "I want to offer that we do not all need to order our trauma, our psychedelic initiation, our “medicine” or mindfulness, off a bespoke menu."
Your writing is an exquisite punch to the gut - and I mean that in only the best way. It’s been many, many years since I lived with chronic, debilitating pain, and at this point I barely remember it. Thank all goodness. But the psychological pain - PTSD, depression, suicidal ideation - is still a part of my me-ness. Better now in this last (?) third of my life, but it’s so true that in the throes of that kind of pain, all there is is that pain. You described it perfectly - endless now, no past, no future, only that. Enforced eternal now. I feel seen and understood by you sharing your story. Blessings of abundant love to you, dear one. And peace to your soul. 🙏🏼💜
Thank you ❤️ the timing on me coming across this is mythical
I'm currently filling in a questionnaire several pages long about chronic pain and it's definitely written by someone who only theorizes about chronic pain.
Who has the spoons to tabulate their coping for a clinic, when you have no choice but to cope?
When they list their referrals and you've already tried every one
When they think you are drug seeking and you've literally never tried opiates, because you'd have to use them every day,
and are avoiding marijuana because then you are in pain and can't even parent
I need to function, in the world, without my internal screaming externalizing, because my kids deserve whatever I can scrape out of my reserves, while everything is filtered through red red pain
Questionnaires and chronic pain assessments be damned
Sophie, as always you pull the sky to the side and offer us a deeper lens for our humanness ❤️🔥
‘My greatest psychedelic trips have happened totally sober, stitched by the needle of my own ailing body into the present moment again and again without recourse to memory or fantasy.’
i resonates with this HARD.
and to think i put off reading this for fear of … what exactly ? being seen ?
thank YOU !!
oop *resonated. but also resonate 😝
Grateful you are among this world.
I welcomed a friend into the world of chronic pain today by forwarding your post. Not a glee club but one full of support and like you write; one that contains it's own psychedelic scum and possibly medicine hidden in the muck. If it is there, our inner poets will find it and use it to rise in the stillness and make it magical. Thank you for your contribution and the way you weave your words.