I am a caretaker, primary or secondary, for two people of different ages who live with extreme disability. One fell ill ten years ago. The other is a young child. Both will outlive me by decades.
To many on the outside, both look like tragedies. They are not.
I have come over the years to define 'okay' for all of us, or better than okay, almost entirely in terms of how cheerful or positive they are.
Miraculously, they usually both are, and I feel blessed for it.
If and when one or the other goes through a spell of very much not being positive and cheerful, and a spell can be, I must admit, years long, I have to hold onto a different idea of okay that looks more like 'safe and working on the rest.'
We humans are made to play the cards we have been dealt. It is vital, I find, to have an eye for what is golden and wonderful even while facing realistically what is very much not and doing our part to make things better.
Courtney, this is so beautiful. Thank you once again for articulating what I too am experiencing. This week, the rollercoaster I am on is going through the long, dark tunnel. I can barely see glimmers of light up ahead, although I know they are out there in the distance. I hold on tight, breathe deeply and know that soon this darkness will be behind me. For now, it is depleting. I cry tears for myself, my parents, for other caregivers like yourself, for the sick, the dying and for this country. I know I cannot control any of it but my attitude. So I paste on my smile for another day and hope I can trick myself into finding peace, calmness and a new well of patience. Love and thanks to you always! ❤️
I love this Courtney. And I completely agree that what you and your family are experiencing is a microcosm of what so many of us in the US are experiencing right now. I'm struggling daily (hourly, minutely) to find my footing amidst the backdrop of such horrible, cruel, and destabilizing developments and the ups and downs of work, family, life, perimenopause and the like. My own substack is my attempt to find that balance between being a good human, defending democracy while doing the things to feed our bodies and souls so we can keep showing up. A work in progress for sure. Sending you a hug!
Thank you for this essay, Courtney. For fourteen months (the first 14 of my medically-complex daughter's life), I was "rolling up my sleeves" and "riding a rollercoaster every day." I wrote in our CaringBridge one day: "We are floating above the ground, feet touching briefly when something seems to work, then flying into the air again hours later. We are deeply untethered in a journey that never promised much tethering to begin with (aka parenthood). How do we sit with that tension? How do we float above the ground and simply say 'wow, the view is different from up here, but it is also quite beautiful'? How do we let go of what we hoped for and dive in to what is? Daily I am attempting this acceptance, and daily I am angry and sad and fearful."
It's shocking to wake up one day (maybe some people know this all their lives?) and realize that okayness comes and goes and this will be true for the rest of our lives and the lives of everyone around us. It's so not ok that this is the way it is! And.... apparently it is.
Also, thanks SO much for your interview with Alec from Nearness. My husband and I just joined the 8-week-course for parents all because of your interview! Your reflections and insights are invaluable.
Carina! This is gorgeous. I feel such a solidarity with you across the time, space, and difference of our particular vulnerabilities. And so glad to hear Nearness is proving to be a good experience for you.
Having just lost still another lifelong friend to this terrible disease that got my younger brother, I’m definitely NOT okay. Sorry.
. But what helps me cope at age 87 are these amazing conversations prompted by Courtney, so please keep making me blubber and bawl over your narratives. I can’t live without them! DD
Thank you. That's exactly what I needed today. I rarely take the time to read all of my "non-essential" emails. So happy I paused and took the time today. You are a beautiful writer and a gift to so many.
I saw a clip from Heather Cox Richardson this morning reminding us that we must continue to find joy and connection-- so, I'm working on that. My rage is barely contained these days, and it's damaging my relationships. Also working on reducing anxiety (with exercise, avoiding caffeine and alcohol, and possibly turning to some anti-anxiety meds for a while). I need to find a time to be in nature each week too.
So beautiful, your generous heart! Despite almost unbearable demands, you acknowledge the at times harrowing challenges but make space for the humorous, sweet, fleeting, and tender moments. I’m of your parents’ generation. It all belongs. The world is in chaos but love continues to show up and inspire. A warm hug.
A friend sent me your Substack and it was just what I needed to hear. Thank you for sharing your story. This line hit me in the core as I struggle to find FOCUS each day (will I get to work today? will I be interrupted?): "But then something happens and he’s not okay, and even if I try to pretend otherwise, I’m not okay." The pretending is a daily grind. Thank you for normalizing this!
I feel like I’ve grown up reading your work, as you’ve moved through different life stages and so have I. And whatever stage I’ve been in, your work has always offered so much. Just, thank you for your reflective, honest, vulnerable writing. It really is a gift.
You probably know about the book, The 36 hour Day? It’s about caregiving. The physicality of caregiving is daunting. Constant attention, decision-making, and navigating another psyche! Many many of us have endured it. Like you say, knowing it’s “temporary.” But, the toll is real. I don’t see a partner in your writing. If that’s the case it’s even harder. Bowing to all of us humans on our incredible journeys of love. Slowing myself down to the speed of compassion for myself and others. As for nation? An assault of dramas that hog attention and ask for ultra levels of caring? Woah!
Your writing is so remarkably touching that I can only read your work periodically. I am trying to spend as much time in nature as possible right now. I call my elected representatives in DC regularly, but the US and the changing global environment feels dystopian. I am trying to spend as much time as I can with others face-to-face and focus on creative work.
This is so damn good Courtney. I’m in the middle of reading When You Care by Elissa Strauss and so many threads echo with this essay. Namely that we must reframe caring as an action. It’s beautiful and messy and hard and to be celebrated and at times feared and all the things. Thank you for writing this. I feel seen.
I am a caretaker, primary or secondary, for two people of different ages who live with extreme disability. One fell ill ten years ago. The other is a young child. Both will outlive me by decades.
To many on the outside, both look like tragedies. They are not.
I have come over the years to define 'okay' for all of us, or better than okay, almost entirely in terms of how cheerful or positive they are.
Miraculously, they usually both are, and I feel blessed for it.
If and when one or the other goes through a spell of very much not being positive and cheerful, and a spell can be, I must admit, years long, I have to hold onto a different idea of okay that looks more like 'safe and working on the rest.'
We humans are made to play the cards we have been dealt. It is vital, I find, to have an eye for what is golden and wonderful even while facing realistically what is very much not and doing our part to make things better.
I really needed: “a spell can be, I must admit, years long.” 🙏🏼
Courtney, this is so beautiful. Thank you once again for articulating what I too am experiencing. This week, the rollercoaster I am on is going through the long, dark tunnel. I can barely see glimmers of light up ahead, although I know they are out there in the distance. I hold on tight, breathe deeply and know that soon this darkness will be behind me. For now, it is depleting. I cry tears for myself, my parents, for other caregivers like yourself, for the sick, the dying and for this country. I know I cannot control any of it but my attitude. So I paste on my smile for another day and hope I can trick myself into finding peace, calmness and a new well of patience. Love and thanks to you always! ❤️
Sending love dear Deane.
I love this Courtney. And I completely agree that what you and your family are experiencing is a microcosm of what so many of us in the US are experiencing right now. I'm struggling daily (hourly, minutely) to find my footing amidst the backdrop of such horrible, cruel, and destabilizing developments and the ups and downs of work, family, life, perimenopause and the like. My own substack is my attempt to find that balance between being a good human, defending democracy while doing the things to feed our bodies and souls so we can keep showing up. A work in progress for sure. Sending you a hug!
Thank you for this essay, Courtney. For fourteen months (the first 14 of my medically-complex daughter's life), I was "rolling up my sleeves" and "riding a rollercoaster every day." I wrote in our CaringBridge one day: "We are floating above the ground, feet touching briefly when something seems to work, then flying into the air again hours later. We are deeply untethered in a journey that never promised much tethering to begin with (aka parenthood). How do we sit with that tension? How do we float above the ground and simply say 'wow, the view is different from up here, but it is also quite beautiful'? How do we let go of what we hoped for and dive in to what is? Daily I am attempting this acceptance, and daily I am angry and sad and fearful."
It's shocking to wake up one day (maybe some people know this all their lives?) and realize that okayness comes and goes and this will be true for the rest of our lives and the lives of everyone around us. It's so not ok that this is the way it is! And.... apparently it is.
Also, thanks SO much for your interview with Alec from Nearness. My husband and I just joined the 8-week-course for parents all because of your interview! Your reflections and insights are invaluable.
Carina! This is gorgeous. I feel such a solidarity with you across the time, space, and difference of our particular vulnerabilities. And so glad to hear Nearness is proving to be a good experience for you.
Having just lost still another lifelong friend to this terrible disease that got my younger brother, I’m definitely NOT okay. Sorry.
. But what helps me cope at age 87 are these amazing conversations prompted by Courtney, so please keep making me blubber and bawl over your narratives. I can’t live without them! DD
Love you DD. So sorry for your loss.
Thank you. That's exactly what I needed today. I rarely take the time to read all of my "non-essential" emails. So happy I paused and took the time today. You are a beautiful writer and a gift to so many.
I saw a clip from Heather Cox Richardson this morning reminding us that we must continue to find joy and connection-- so, I'm working on that. My rage is barely contained these days, and it's damaging my relationships. Also working on reducing anxiety (with exercise, avoiding caffeine and alcohol, and possibly turning to some anti-anxiety meds for a while). I need to find a time to be in nature each week too.
Take care of yourself, SK! The revolution needs you. 💗
So beautiful, your generous heart! Despite almost unbearable demands, you acknowledge the at times harrowing challenges but make space for the humorous, sweet, fleeting, and tender moments. I’m of your parents’ generation. It all belongs. The world is in chaos but love continues to show up and inspire. A warm hug.
“It all belongs” is such a gorgeous phrase. I may have to use that as a writing prompt Sheila. Thank you!
A friend sent me your Substack and it was just what I needed to hear. Thank you for sharing your story. This line hit me in the core as I struggle to find FOCUS each day (will I get to work today? will I be interrupted?): "But then something happens and he’s not okay, and even if I try to pretend otherwise, I’m not okay." The pretending is a daily grind. Thank you for normalizing this!
YES, I relate so hard to this. I feel so much better when I stop pretending and/or deluding myself that it can all be managed.
I feel like I’ve grown up reading your work, as you’ve moved through different life stages and so have I. And whatever stage I’ve been in, your work has always offered so much. Just, thank you for your reflective, honest, vulnerable writing. It really is a gift.
That's so touching. Thanks for sharing that, Rachel. We're getting old, right? And hopefully wise?!
Exactly — may we stay open and let the wisdom we need at that moment find us!
You probably know about the book, The 36 hour Day? It’s about caregiving. The physicality of caregiving is daunting. Constant attention, decision-making, and navigating another psyche! Many many of us have endured it. Like you say, knowing it’s “temporary.” But, the toll is real. I don’t see a partner in your writing. If that’s the case it’s even harder. Bowing to all of us humans on our incredible journeys of love. Slowing myself down to the speed of compassion for myself and others. As for nation? An assault of dramas that hog attention and ask for ultra levels of caring? Woah!
I know the book, yes, Cynthia. Thanks for the rec.
the mantra was right on time 🙏🏾sending love for the roller coaster
Thank you friend.
You're a marvel, Courtney. You're living with such valor.
And this: "But I also know that being on the ride is temporary and sacred, the only way to become the exact kind of warrior I am becoming."
The warrior blossoming and coming to fruition inside you will fill us with awe. I can't wait to see what she becomes.
May you be well.
🙏🏼
Your writing is so remarkably touching that I can only read your work periodically. I am trying to spend as much time in nature as possible right now. I call my elected representatives in DC regularly, but the US and the changing global environment feels dystopian. I am trying to spend as much time as I can with others face-to-face and focus on creative work.
Sounds right all around.
Love your writing and sharing.
Highly recommend How we learn to be brave by Mariann Edgar Budde
Ha! That's amazing - my friend Wendy just bought it for me but keeps forgetting to give it to me.
This is so damn good Courtney. I’m in the middle of reading When You Care by Elissa Strauss and so many threads echo with this essay. Namely that we must reframe caring as an action. It’s beautiful and messy and hard and to be celebrated and at times feared and all the things. Thank you for writing this. I feel seen.
Such a marvelous book, right? I really loved it.