as someone who is chronically ill struggling daily with debilitating symptoms while raising 3 kids mostly without support, and living with complex trauma from decades of domestic, sexual, and religious abuse when i offer up the aforementioned words, generic as they might sound they are not a mask to abate my own discomfort --they are 5 candles inside words, more akin to a spell that pleas for temporary reprieve. a miracle you might say. sometimes i don’t have the brain capacity to come up with a unique prescription that can meet the unknown in the unknowable. we never truly know what is like to live in the scare of another human’s failing body but still desire to extend the ambiguity of hope and whatever form that takes from my heart to another. just my personal perspective on overused euphemisms. i certainly understand the frustration with generics used as a defense mechanism to block attachment to human suffering, but that’s not always true. some of us truly express from deepest love-- while in the middle of personal crises.
i will sit more with this, and rethink how i extend care. always open to changing my habits.
Thank you thank you thank you for this! I wish for you in-person friends who will sit with you, support you, notice and pick up slack without having to be asked, all without making any demands of you at all. From afar as I am, I send what I think of as Quaker quiet, a silence patient enough to hold whatever needs to be held for as long as it needs to be held. ❤
Sophie, your wise, fierce, truth telling "I Hope You're Feeling Better" moved me deeply.
Yes, it is distressing to fully acknowledge a friend's pain, and to be with that person honestly
with compassion, and still a "lightness of being" that does not diminish the ill person. I profoundly want you to enter a remission where your glorious intellect and creative energies continue to enighten and delight us. I was a neighbor of yours long ago, on LewisHollow. Love, Ruth
When you wrote about our "culture not being able to to truly witness and understand suffering and illness and death", this made me think about the time when my father was sick with cancer.
He had been in various treatments and got at some point really down. He was then transferred to a place to get some "soins palliatifs" (I guess palliative care in english).
All that made us think my sister and I that he would "just get extra care", get better and move back. But the reality is that he was dying, and that we were in complete denial. I don't mean to say that our denial was due entirely to the health team, but the fact that the whole system "hides reality" in blurry formulations and pretty words does not help at all.
With Death, it gets so touchy that we come to call it sometimes "end of life". Isn't this getting ridiculous? It is so taboo that we might even start to call it the D-word to not have to pronounce it..
Thanks Sophie for this piece, we need people like you to shake this culture of ours (even if this made me have to go back to all my conversations where I may have said the “I hope you’re feeling better” sentence - and feel some shame :D).
Deep thanks for sharing you and your dad’s journey. I so believe that inviting death to the table makes our relationships more precious and meaningful, our lives richer.
I grew up with a mother who had many different chronic and debilitating conditions, and often heard her say "people are bored with my illnesses, and don't want to hear how sick I am anymore." Thank you for sharing this, and for gently guiding us to sit with the discomfort that people around us are unwell — and that our society, that our planet, are also unwell. Showing up, acknowledging, witnessing... they're all such essential phases to our role in collective regeneration.
For many years I’ve been in conversations with other sick and disabled people about how unhelpful sentiments like “Hope you feel better!” are. But, those conversations rarely make the connection to the ways that being unable to face the reality of illness extend to an inability to face our ecological reality.
“If we can develop a greater capacity to witness and accompany pain and illness in each other, we will be more sober and compassionate in our assessments of our own environmental entanglements. Can we stay with the trouble?”
Yes.
I am so grateful for learning the language and the practice of “staying with the trouble” from Donna Haraway, Bayo Akomalafe, adrienne maree brown, Octavia Butler, and from you. I’m grateful to Black feminists who have always known.
I’ve been sitting with the idea of being “sober” in how we see and understand the worlds we are a part of since you brought it to our class last weekend. It’s hard to hold that clear, sober outlook when the world around you tries to insist that everything is fine and is marching endlessly toward progress and healing. And, as challenging as that can be, it is such a relief to focus on “making care” (thank you to Bayo for this phrasing) from within the trouble rather than trying to deny or fight our way out of the trouble.
May we dance in the cracks. May we make care from within the trouble. May we become incomprehensible to the systems that seek to capture and clean and fix and contain our aliveness. May we become good compost.
Thank you for for bringing sobriety into it. I’ve been thinking about this more and more (especially in conversations with friend Holly Whitaker) about how we need to get sober of this culture. We need to look at death with clear eyes 👁️ 🌱💔🕯️
There is so much truth in these words. Superficial culture, permeated with toxic positivity, creates a boundary through which we are not supposed to reach. Depthless colloquialisms are dismissive when they don't allow for connection, empathy and deeper understanding of a beings lived experience. Thank you for this frank offering of perspective.
This utterly resonates! We sO need to stay with the trouble and simply witness and honor our beloved’s and the world’s suffering and death. Eternal thanks for your ongoing gifts despite what they surely must cost you 🙏🏼🦋🐜✨🌎🍄
Ah, Sophie - thank you yet again for your wisdom. I know I have said this too many times to too many people. And I know better - sometimes those old ingrained habits sneak through. Not as an excuse but as a reminder to myself, as an empath I forget sometimes that another’s pain and discomfort is not my own, and my desire for another to feel better is selfishly so that I don’t feel what they’re experiencing. My discomfort is mine to deal with. I simply get to be present, hold space, witness, and love another.
And now ... I witness and am present for you here and now, exactly as you are. I hold space for however you experience and move through your illness and your life. And I send love and gratitude for all that you are and all that you offer to the world. 🙏🏼♥️✨💚
Thank you Sophie, I understand what you’re saying about other people projecting their own discomfort with incurable illness. My partner passed from a terminal illness and we experienced many secondary losses due to aspects you mention. Thank you for reminding us and giving voice to others. 💝🙏✍🏻
Sending love Simone. I always say to reference Sontag, we all eventually experience of the kingdom of illness and we are better prepared when we practice empathy before it happens ✨🙏🏻❤️🔥
I really don't think anyone can hold the space for another, they can only inhabit it with them. So now my mind goes to two people in a room, one whose body is in pain and another whose body feels good.....both fully inhabiting their own body (which is ideal, but rare)... something emerges.....
as someone who is chronically ill struggling daily with debilitating symptoms while raising 3 kids mostly without support, and living with complex trauma from decades of domestic, sexual, and religious abuse when i offer up the aforementioned words, generic as they might sound they are not a mask to abate my own discomfort --they are 5 candles inside words, more akin to a spell that pleas for temporary reprieve. a miracle you might say. sometimes i don’t have the brain capacity to come up with a unique prescription that can meet the unknown in the unknowable. we never truly know what is like to live in the scare of another human’s failing body but still desire to extend the ambiguity of hope and whatever form that takes from my heart to another. just my personal perspective on overused euphemisms. i certainly understand the frustration with generics used as a defense mechanism to block attachment to human suffering, but that’s not always true. some of us truly express from deepest love-- while in the middle of personal crises.
i will sit more with this, and rethink how i extend care. always open to changing my habits.
Thank you for offering this expanded perspective Jolene. I know they are alive with love and complexity when they come from you.
i’m so glad 🕯-- you have me rethinking how i can say it because it can feel dismissive. (i know i’ve felt this same way when i hear it.)
Thank you thank you thank you for this! I wish for you in-person friends who will sit with you, support you, notice and pick up slack without having to be asked, all without making any demands of you at all. From afar as I am, I send what I think of as Quaker quiet, a silence patient enough to hold whatever needs to be held for as long as it needs to be held. ❤
Sophie, your wise, fierce, truth telling "I Hope You're Feeling Better" moved me deeply.
Yes, it is distressing to fully acknowledge a friend's pain, and to be with that person honestly
with compassion, and still a "lightness of being" that does not diminish the ill person. I profoundly want you to enter a remission where your glorious intellect and creative energies continue to enighten and delight us. I was a neighbor of yours long ago, on LewisHollow. Love, Ruth
Deep gratitude for your care, Ruth 🌻🌺🍄💛
When you wrote about our "culture not being able to to truly witness and understand suffering and illness and death", this made me think about the time when my father was sick with cancer.
He had been in various treatments and got at some point really down. He was then transferred to a place to get some "soins palliatifs" (I guess palliative care in english).
All that made us think my sister and I that he would "just get extra care", get better and move back. But the reality is that he was dying, and that we were in complete denial. I don't mean to say that our denial was due entirely to the health team, but the fact that the whole system "hides reality" in blurry formulations and pretty words does not help at all.
With Death, it gets so touchy that we come to call it sometimes "end of life". Isn't this getting ridiculous? It is so taboo that we might even start to call it the D-word to not have to pronounce it..
Thanks Sophie for this piece, we need people like you to shake this culture of ours (even if this made me have to go back to all my conversations where I may have said the “I hope you’re feeling better” sentence - and feel some shame :D).
Deep thanks for sharing you and your dad’s journey. I so believe that inviting death to the table makes our relationships more precious and meaningful, our lives richer.
I grew up with a mother who had many different chronic and debilitating conditions, and often heard her say "people are bored with my illnesses, and don't want to hear how sick I am anymore." Thank you for sharing this, and for gently guiding us to sit with the discomfort that people around us are unwell — and that our society, that our planet, are also unwell. Showing up, acknowledging, witnessing... they're all such essential phases to our role in collective regeneration.
For many years I’ve been in conversations with other sick and disabled people about how unhelpful sentiments like “Hope you feel better!” are. But, those conversations rarely make the connection to the ways that being unable to face the reality of illness extend to an inability to face our ecological reality.
“If we can develop a greater capacity to witness and accompany pain and illness in each other, we will be more sober and compassionate in our assessments of our own environmental entanglements. Can we stay with the trouble?”
Yes.
I am so grateful for learning the language and the practice of “staying with the trouble” from Donna Haraway, Bayo Akomalafe, adrienne maree brown, Octavia Butler, and from you. I’m grateful to Black feminists who have always known.
I’ve been sitting with the idea of being “sober” in how we see and understand the worlds we are a part of since you brought it to our class last weekend. It’s hard to hold that clear, sober outlook when the world around you tries to insist that everything is fine and is marching endlessly toward progress and healing. And, as challenging as that can be, it is such a relief to focus on “making care” (thank you to Bayo for this phrasing) from within the trouble rather than trying to deny or fight our way out of the trouble.
May we dance in the cracks. May we make care from within the trouble. May we become incomprehensible to the systems that seek to capture and clean and fix and contain our aliveness. May we become good compost.
Thank you for for bringing sobriety into it. I’ve been thinking about this more and more (especially in conversations with friend Holly Whitaker) about how we need to get sober of this culture. We need to look at death with clear eyes 👁️ 🌱💔🕯️
There is so much truth in these words. Superficial culture, permeated with toxic positivity, creates a boundary through which we are not supposed to reach. Depthless colloquialisms are dismissive when they don't allow for connection, empathy and deeper understanding of a beings lived experience. Thank you for this frank offering of perspective.
I wish you a lightness of your burden.
Thank you deeply Youssef.
This utterly resonates! We sO need to stay with the trouble and simply witness and honor our beloved’s and the world’s suffering and death. Eternal thanks for your ongoing gifts despite what they surely must cost you 🙏🏼🦋🐜✨🌎🍄
Ah, Sophie - thank you yet again for your wisdom. I know I have said this too many times to too many people. And I know better - sometimes those old ingrained habits sneak through. Not as an excuse but as a reminder to myself, as an empath I forget sometimes that another’s pain and discomfort is not my own, and my desire for another to feel better is selfishly so that I don’t feel what they’re experiencing. My discomfort is mine to deal with. I simply get to be present, hold space, witness, and love another.
And now ... I witness and am present for you here and now, exactly as you are. I hold space for however you experience and move through your illness and your life. And I send love and gratitude for all that you are and all that you offer to the world. 🙏🏼♥️✨💚
Your witness and care are planted in my soil. Thank you so so much, my friend
I am grateful to read of a fellow traveler. Thanks for speaking to me 💛🍄🙏
Deep thanks William
Ohh thank you thank you thank you for this Sophie. 🙏🏾
🌻🕯
Thank you for this arrow of truth. Love you, Sophie.
🙏🏻 🌺
Thank you Sophie, I understand what you’re saying about other people projecting their own discomfort with incurable illness. My partner passed from a terminal illness and we experienced many secondary losses due to aspects you mention. Thank you for reminding us and giving voice to others. 💝🙏✍🏻
Sending love Simone. I always say to reference Sontag, we all eventually experience of the kingdom of illness and we are better prepared when we practice empathy before it happens ✨🙏🏻❤️🔥
Love and gratitude straight back to you; your wisdom and your evocative writing. 💜🙏🏼🧚♀️
I really don't think anyone can hold the space for another, they can only inhabit it with them. So now my mind goes to two people in a room, one whose body is in pain and another whose body feels good.....both fully inhabiting their own body (which is ideal, but rare)... something emerges.....
We are all living in landscapes deranged by pollution and ecocide. So perhaps the die of a shared territory is apt.
Or perhaps not, but thank you for using your interior landscape to help explore our own.
Amazing column. Totally spot on from someone (me) who has been living with someone (my husband) who has been in chronic pain for nearly 15 years.