Feb 19, 2023Liked by Suleika Jaouad, Carmen Radley
Three Sundays ago, I was going on one of my long walks preparing for the Camino in April. This time, like so many days recently on my walk, I was stopping by the hospital complex, where my daughter in laws beloved dad remains in the progressive care unit, since Thanksgiving, and in another part of the hospital my sister was in rehab after her adrenal function was shut down by immunotherapy. Bring in leukemia treatment still myself, I was feeling pretty sorry for myself when I passed an old African-American Baptist church, and two men were standing outside, leaning up against a car, dressed impeccably for church. As I tramped by with my backpack on one of them looked at me and asked, “how are you doing today?” Not just a chin up kind of “how you doin’” but he asked about today. I said “Fine, thank you” (I heard this week that “FINE” can mean Fears In Need of Expression) So then I walked about ten more steps beyond them before turning around and interrupting them to say “actually I am struggling.” I went on to say, through mounting tears, “in the past 20 months I have been in an existential crisis sandwiched between a spiritual crisis and a couple of other life crises.” These two men, Kenny and Vincent listened, then hugged me close and Vincent prayed in a way that only people who have survived decades of oppression can pray. They invited me to their church any time I need a safe place to just be.
To Sweet, Strong, Suleika...you are Beginner's Mind. My deepest admiration to you and my sparkliest hope for a week filled with wonder, awe, tears when needed, and hopefully laughter. All the rest just "is." Now for me...just yesterday, I held my daughter as she cried tears made of near constant pain, the desire to be "like other 21-year-olds who don't have to deal with all the medications, pain, and the decision to go on a living moment to moment." At that moment (which actually lasted a few hours), I realized that I am strong as hell. I could hold her pain which hurt me to the core, twisted life in my stomach and heart, pulled it out and began again, but I could still "be there" for her, and she could feel my strong presence. As my therapist would say, "That's a big, fuckin' deal!" And it is. I finish by sharing with River and Suleika that your going to the Writer's Retreat is my rainbow of the day.
I remember when your doctor st Sloan Kettering said he wants more for you than to just exist, to just survive cancer. He wants you to live, to go for walks and feel rejuvenated, to enjoy fresh air and bicycling, to look ahead to your future, and to put cancer in the rear view mirror! It’s happening, and even before the actual transplant admission, you committed to Jon. Midway through recovery you committed to River and even us, your Isolation Journal group. You can commit to yourself and what’s ahead. So many will love and benefit from your next work.
We’re all a work in progress, and we all have a ticket in our hand that we cash in at the end of life, and none of us know when the day or the hour will come.
So onward and upward, Suleika! Enjoy this inspiring adventure!
I found out I have cancer after nearly a year of digestive troubles, when finally a tumor blocked my small intestine and sent me to the ER. Surgery resulted in a huge relief of all that discomfort but brought the diagnosis and the anticipation of chemotherapy. Friends and family appeared in my hospital room to cheer me with babble and laughter. Friends continued to visit me at home, bringing fabulous soups, took me for restful rides in the countryside, called to check up on me. Family came and helped care for me. Since my diagnosis, two friends who had recovered from cancer treatment in the past found out they have relapsed. We check up on each other often. It is the care we provide for each other that keeps us going. It’s small actions of friends and family that make a difference in our lives.
Years ago when I was 8 months pregnant with my first child, the post & beam house my husband & I built ourselves burnt to the ground. Devastating & unlucky for sure, we were front page news in our mid size town & everyone was so generous & helpful; but no one really knows what to do or say to help. I hadn’t taken my husbands name when we married but all the papers said mr & mrs O’B, my actual name was not listed in any of the stories. So to escape all the sad eyes & awkward sympathy I pretended to not be mrs (because technically I’m not) and spent the week after the tragedy in public as myself, a woman who was also 8 months pregnant and yes I feel so sorry for that woman mrs o’b. To freely shop (we needed everything) & hear everyone talking about this sad story and be able to remove myself from it & talk to them as an outsider felt great & freeing. I had a little fun as I tried to figure out the next steps, and the next steps I had to take.
Thank you Suleika and Kate for this mornings prompt. So many of what I write is about animals and todays prompt brought a memory of one of my cats that has passed to the Summerland. I hope I don’t bore anyone who reads this with another animal story. Yes, there are other instances that don’t involve pets that would resonate. They just feel too dark to share today.
I had a Siamese cat named Happy. Happy was the perfect name for her. She was always purring. When I got her as a kitten she purred all the way on a ride the ride home from Massachusetts to Connecticut. She was acrobatic. She loved to snuggle in my SO’s coat. Todd called her squishy. She was always Happy until one day when she was a healthy 18 she collapsed. I think it was a stroke. She was partially paralyzed.
This was the second time this happened and she recovered once. So the vet gave her fluids and medications and she came home. This time she didn’t recover. So I made the decision to have the vet help her transition. Never an easy decision. There are always questions about is this the right choice. Is this what Happy would want. She wasn’t going to recover this time and her body was shutting down. I felt so empty. She slept on my pillow over my head ever night. I really felt that empty space.
Here’s the light in the story. The next morning a woke to the sound of a music box. I thought I was hearing things. I have some musical carousel horses up on a shelf. I hadn’t payed them in years. And this morning one started playing “It’s a Small World”. My heart suddenly felt bigger and I got chills. Not only did I feel in my soul I made the right choice for Happy and she was telling me she was ok. But I also had the feeling that things could be ok in the World again. I had been in a place of despair for a while in the atmosphere of the time. I just felt we were all going to be ok.
And wishing Suleika well on your writing retreat with River. Thank you again for the prompts and your shared wisdoms. And thank you and Jon for sharing your prompt.
I just returned from a two week writers workshop in Mexico. The location a the very tip of the Baja Penninsula added to the sinking feeling I had in the days leading up to the flight down.
Ever since covid entered our lives, I began writing the story I had been asked to write for decades.
That was the first act, which lead me further into a deep well of isolation. My wife moved back to Munich, her birthplace, where her family and daughters lived, and began having their own children.
We sold our home and I moved into a small cottage, far away from my businesses, friends and the daily life I knew. I stopped working , something I always wanted to experience, after 51 years doing the same thing over and over. Ironically it's where I've always wanted to live, far into nature, by the ocean.
I have learned that socializing with others , is a muscle which needs to be
constantly used, in order to feel comfortable. After two years of writing, mostly alone
in my dream location, I felt awkward the times I did go into town, and see the customers I've been serving for most of my life.
I didn't know how to be with others, in those first moments, meeting the instructors and attendees for the first time. I was lost.
My first week's class was poetry, a language I had very little understanding of, and the second week was memoir. Everything thing I knew about that genre, was from the few, best books on writing memoir I could find.
Isolation was an air which followed me.
Into town, into all the breakout sessions, and into the nightly smaller spontaneous gatherings
at the restaurants and bars.
Surrounded by writers, a community I had never known, every day felt shaky, and with every step
I took, I wasn't sure. All I knew was each step........by step.
And even just that I was not sure of.
Now back home, I'm still not sure.
I look down at Fred, waiting for his morning walk, I look out
through the trees at the river below, and the dunes beyond,
and I see and feel all the blessings which are.
Being sure of and knowing? That comes and goes, like any good story does.
My friend had died a violent death and I was inconsolable, stuck in a well of grief. Visiting New Orleans, I was driving my son’s car and, on the dash, he’s stuck a tree nut, painted brightly and sporting a neck and head that wiggles and shimmies with the bumps in the road, which are many in that gorgeous town. Noticing this ridiculous thing, popping and jiving to the Stones’ Street Fightin’ Man, I laughed out loud, alone in the car, for the first time in a couple of years. Now, my mini convertible has one. It wrecks the lines of my beautiful car, but when the music cracks up, the wind blows and the sports suspension kicks in, I’m in heaven.
To dearest Suleika - even before reading your comment today I was thinking about the road trip you described in your book...the sheer courage of hurling yourself into unknown territory all by yourself. Now that same courage is guiding you to a writer’s workshop and new book project - also terrifying.
I bear witness to your fear and vulnerability. I bear witness that cancer doctors can never provide certainty about the future. Yet you are moving forward and bringing us with you - modeling how to move through fear and make those first steps. As always, I applaud you and know you will savor your rich new experiences and hopefully have lots of fun!
There’s an a capella group at the company where I work. Back then I was an active member. That’s already a blessing and I guess that’s like telling you that Rosebud’s the sled, but whatever. I had taken a sick day. Several, actually, in order to have some Mohs surgery on my face. It was more extensive than I had anticipated. In putting me back together the surgeon took one of my frown lines and cut it into little quilt pieces to cover the hole near my eye where the bad parts, now vanquished, had set up shop over the years. I would forever look frownier, but be less cancer-y. My face inflated painfully over the hours that this procedure took, and I’m as sure that someone said something to me about my return appointment as I am that the roar in my ear and residual tinnitus from years of rock music drowned it out. I did hear that they could not give me Tylenol. I’d have to white knuckle it on the long ride home.
Later that day, on the sofa with an ice pack over half of my face and a laptop in my lap, I read that the founder of our company had died. It was not unexpected, and in preparation I’d put together a collection of photos for just this occasion. I phoned a colleague to let her know where she could find the CD in my office. I felt both the loss of this founder, and the distance of not being able to share the loss with my colleagues in person.
The next day an email came in from the leader of the a capella group asking if there was interest in singing at a gathering. He’d restructured a song that the founder had liked, that the group had sung for him years earlier. Over the weekend we could rehearse on our own. We rehearsed it twice as a group before the gathering, knowing that if we sounded awful we could just bail, but it sounded beautiful and heartfelt. It was good to be with my people in that moment. I had spent the previous three days on the sofa with more ice packs and my face resembled, in the eloquent words of my husband, “as if Albert Einstein had gone through the windshield of a car” (although I felt Edward G. Robinson was more apt). My face was shocking to see, but nobody in our group gawked or joked or made much mention. They could tell that my presence was an act of devotion. I stood in the back, face bandaged.
We rose to the moment. The late Autumn sun streamed into the room where the company stood when we sang. In a perfect world, the final notes would ring out and people would quietly disperse. And that’s what happened. I went back to bed feeling better than when I left.
When my partner was in the hospital awaiting the second amputation of his left leg, this time above the knee, his kids and I brought him coffee and croissants (he was French!) and we all sat together in the room, enjoying the food and being together, trying to push away our fears of the operation to come. He was wearing a multicolored scarf I had given him years ago, and a nurse came in and commented about “how stylish” it was. We all started to laugh, and it felt so good.
Thank you, Suleika, for your newsletter and adding me to your free community, which is all the info I can handle at the moment after moving this week as full-time carer of my mum with vascular dementia.
I'm so excited to find you, a writer of your calibre, writing about isolation. I'm writing a parenting memoir, now at super slow pace. I've a low-grade Non-Hodgkin's disease with chronic fatigue and fibromyalgia. These kept me living at home most of the time since about 2016 (writing, yay!) until I've had enough energy, after chemo in 2021, to begin to care for my mum and move to a healthier home.
Congrats on all the great endorsements for your memoir. I just read the sample and want to read more but it's late in Sydney.
I have one of those upside down funny/sad moments. In 2013, I’d been through seven years of trying to have a baby, the last four years of rounds of IVF, and my brother Jude called me and had told me he had news. He and his wife of 11 years had also struggled with infertility. So I was walking through the streets of NYC when he called and I was bracing myself thinking the news he had was that he and his wife Shelly were pregnant and I’d have to pretend to be happy for them while feeling like I was sailing farther away on an iceberg from the land where that elusive potential baby of mine dwelt. Then remarkably Jude said “Shelly and I are getting a divorce.” Gobsmacked. Outta the blue. Sigh of relief. Nervous laugh “Thank god,” I said “I was afraid you were calling to tell me you guys were pregnant and I was gonna have to pretend to be happy for you.”
Three Sundays ago, I was going on one of my long walks preparing for the Camino in April. This time, like so many days recently on my walk, I was stopping by the hospital complex, where my daughter in laws beloved dad remains in the progressive care unit, since Thanksgiving, and in another part of the hospital my sister was in rehab after her adrenal function was shut down by immunotherapy. Bring in leukemia treatment still myself, I was feeling pretty sorry for myself when I passed an old African-American Baptist church, and two men were standing outside, leaning up against a car, dressed impeccably for church. As I tramped by with my backpack on one of them looked at me and asked, “how are you doing today?” Not just a chin up kind of “how you doin’” but he asked about today. I said “Fine, thank you” (I heard this week that “FINE” can mean Fears In Need of Expression) So then I walked about ten more steps beyond them before turning around and interrupting them to say “actually I am struggling.” I went on to say, through mounting tears, “in the past 20 months I have been in an existential crisis sandwiched between a spiritual crisis and a couple of other life crises.” These two men, Kenny and Vincent listened, then hugged me close and Vincent prayed in a way that only people who have survived decades of oppression can pray. They invited me to their church any time I need a safe place to just be.
To Sweet, Strong, Suleika...you are Beginner's Mind. My deepest admiration to you and my sparkliest hope for a week filled with wonder, awe, tears when needed, and hopefully laughter. All the rest just "is." Now for me...just yesterday, I held my daughter as she cried tears made of near constant pain, the desire to be "like other 21-year-olds who don't have to deal with all the medications, pain, and the decision to go on a living moment to moment." At that moment (which actually lasted a few hours), I realized that I am strong as hell. I could hold her pain which hurt me to the core, twisted life in my stomach and heart, pulled it out and began again, but I could still "be there" for her, and she could feel my strong presence. As my therapist would say, "That's a big, fuckin' deal!" And it is. I finish by sharing with River and Suleika that your going to the Writer's Retreat is my rainbow of the day.
I remember when your doctor st Sloan Kettering said he wants more for you than to just exist, to just survive cancer. He wants you to live, to go for walks and feel rejuvenated, to enjoy fresh air and bicycling, to look ahead to your future, and to put cancer in the rear view mirror! It’s happening, and even before the actual transplant admission, you committed to Jon. Midway through recovery you committed to River and even us, your Isolation Journal group. You can commit to yourself and what’s ahead. So many will love and benefit from your next work.
We’re all a work in progress, and we all have a ticket in our hand that we cash in at the end of life, and none of us know when the day or the hour will come.
So onward and upward, Suleika! Enjoy this inspiring adventure!
I found out I have cancer after nearly a year of digestive troubles, when finally a tumor blocked my small intestine and sent me to the ER. Surgery resulted in a huge relief of all that discomfort but brought the diagnosis and the anticipation of chemotherapy. Friends and family appeared in my hospital room to cheer me with babble and laughter. Friends continued to visit me at home, bringing fabulous soups, took me for restful rides in the countryside, called to check up on me. Family came and helped care for me. Since my diagnosis, two friends who had recovered from cancer treatment in the past found out they have relapsed. We check up on each other often. It is the care we provide for each other that keeps us going. It’s small actions of friends and family that make a difference in our lives.
Years ago when I was 8 months pregnant with my first child, the post & beam house my husband & I built ourselves burnt to the ground. Devastating & unlucky for sure, we were front page news in our mid size town & everyone was so generous & helpful; but no one really knows what to do or say to help. I hadn’t taken my husbands name when we married but all the papers said mr & mrs O’B, my actual name was not listed in any of the stories. So to escape all the sad eyes & awkward sympathy I pretended to not be mrs (because technically I’m not) and spent the week after the tragedy in public as myself, a woman who was also 8 months pregnant and yes I feel so sorry for that woman mrs o’b. To freely shop (we needed everything) & hear everyone talking about this sad story and be able to remove myself from it & talk to them as an outsider felt great & freeing. I had a little fun as I tried to figure out the next steps, and the next steps I had to take.
Thank you Suleika and Kate for this mornings prompt. So many of what I write is about animals and todays prompt brought a memory of one of my cats that has passed to the Summerland. I hope I don’t bore anyone who reads this with another animal story. Yes, there are other instances that don’t involve pets that would resonate. They just feel too dark to share today.
I had a Siamese cat named Happy. Happy was the perfect name for her. She was always purring. When I got her as a kitten she purred all the way on a ride the ride home from Massachusetts to Connecticut. She was acrobatic. She loved to snuggle in my SO’s coat. Todd called her squishy. She was always Happy until one day when she was a healthy 18 she collapsed. I think it was a stroke. She was partially paralyzed.
This was the second time this happened and she recovered once. So the vet gave her fluids and medications and she came home. This time she didn’t recover. So I made the decision to have the vet help her transition. Never an easy decision. There are always questions about is this the right choice. Is this what Happy would want. She wasn’t going to recover this time and her body was shutting down. I felt so empty. She slept on my pillow over my head ever night. I really felt that empty space.
Here’s the light in the story. The next morning a woke to the sound of a music box. I thought I was hearing things. I have some musical carousel horses up on a shelf. I hadn’t payed them in years. And this morning one started playing “It’s a Small World”. My heart suddenly felt bigger and I got chills. Not only did I feel in my soul I made the right choice for Happy and she was telling me she was ok. But I also had the feeling that things could be ok in the World again. I had been in a place of despair for a while in the atmosphere of the time. I just felt we were all going to be ok.
And wishing Suleika well on your writing retreat with River. Thank you again for the prompts and your shared wisdoms. And thank you and Jon for sharing your prompt.
Suleika,
Never forget that you are a writer no matter when or how much you are writing. It’s at the core of your being, ontologically speaking.
That’s what I remind myself when I get those feelings of I’m not doing enough.
And this beautiful community you have knit out of raggy Covid yarns will see you through.
xo
AJ
I just returned from a two week writers workshop in Mexico. The location a the very tip of the Baja Penninsula added to the sinking feeling I had in the days leading up to the flight down.
Ever since covid entered our lives, I began writing the story I had been asked to write for decades.
That was the first act, which lead me further into a deep well of isolation. My wife moved back to Munich, her birthplace, where her family and daughters lived, and began having their own children.
We sold our home and I moved into a small cottage, far away from my businesses, friends and the daily life I knew. I stopped working , something I always wanted to experience, after 51 years doing the same thing over and over. Ironically it's where I've always wanted to live, far into nature, by the ocean.
I have learned that socializing with others , is a muscle which needs to be
constantly used, in order to feel comfortable. After two years of writing, mostly alone
in my dream location, I felt awkward the times I did go into town, and see the customers I've been serving for most of my life.
I didn't know how to be with others, in those first moments, meeting the instructors and attendees for the first time. I was lost.
My first week's class was poetry, a language I had very little understanding of, and the second week was memoir. Everything thing I knew about that genre, was from the few, best books on writing memoir I could find.
Isolation was an air which followed me.
Into town, into all the breakout sessions, and into the nightly smaller spontaneous gatherings
at the restaurants and bars.
Surrounded by writers, a community I had never known, every day felt shaky, and with every step
I took, I wasn't sure. All I knew was each step........by step.
And even just that I was not sure of.
Now back home, I'm still not sure.
I look down at Fred, waiting for his morning walk, I look out
through the trees at the river below, and the dunes beyond,
and I see and feel all the blessings which are.
Being sure of and knowing? That comes and goes, like any good story does.
Good luck. Can’t wait to see what you do next. We’re all behind you cheering you on into the unknown. ✨💕
My friend had died a violent death and I was inconsolable, stuck in a well of grief. Visiting New Orleans, I was driving my son’s car and, on the dash, he’s stuck a tree nut, painted brightly and sporting a neck and head that wiggles and shimmies with the bumps in the road, which are many in that gorgeous town. Noticing this ridiculous thing, popping and jiving to the Stones’ Street Fightin’ Man, I laughed out loud, alone in the car, for the first time in a couple of years. Now, my mini convertible has one. It wrecks the lines of my beautiful car, but when the music cracks up, the wind blows and the sports suspension kicks in, I’m in heaven.
To dearest Suleika - even before reading your comment today I was thinking about the road trip you described in your book...the sheer courage of hurling yourself into unknown territory all by yourself. Now that same courage is guiding you to a writer’s workshop and new book project - also terrifying.
I bear witness to your fear and vulnerability. I bear witness that cancer doctors can never provide certainty about the future. Yet you are moving forward and bringing us with you - modeling how to move through fear and make those first steps. As always, I applaud you and know you will savor your rich new experiences and hopefully have lots of fun!
Every time you put words to your thoughts and feelings, it feels like a balm to me. A portal to what is true. Thank you.
There’s an a capella group at the company where I work. Back then I was an active member. That’s already a blessing and I guess that’s like telling you that Rosebud’s the sled, but whatever. I had taken a sick day. Several, actually, in order to have some Mohs surgery on my face. It was more extensive than I had anticipated. In putting me back together the surgeon took one of my frown lines and cut it into little quilt pieces to cover the hole near my eye where the bad parts, now vanquished, had set up shop over the years. I would forever look frownier, but be less cancer-y. My face inflated painfully over the hours that this procedure took, and I’m as sure that someone said something to me about my return appointment as I am that the roar in my ear and residual tinnitus from years of rock music drowned it out. I did hear that they could not give me Tylenol. I’d have to white knuckle it on the long ride home.
Later that day, on the sofa with an ice pack over half of my face and a laptop in my lap, I read that the founder of our company had died. It was not unexpected, and in preparation I’d put together a collection of photos for just this occasion. I phoned a colleague to let her know where she could find the CD in my office. I felt both the loss of this founder, and the distance of not being able to share the loss with my colleagues in person.
The next day an email came in from the leader of the a capella group asking if there was interest in singing at a gathering. He’d restructured a song that the founder had liked, that the group had sung for him years earlier. Over the weekend we could rehearse on our own. We rehearsed it twice as a group before the gathering, knowing that if we sounded awful we could just bail, but it sounded beautiful and heartfelt. It was good to be with my people in that moment. I had spent the previous three days on the sofa with more ice packs and my face resembled, in the eloquent words of my husband, “as if Albert Einstein had gone through the windshield of a car” (although I felt Edward G. Robinson was more apt). My face was shocking to see, but nobody in our group gawked or joked or made much mention. They could tell that my presence was an act of devotion. I stood in the back, face bandaged.
We rose to the moment. The late Autumn sun streamed into the room where the company stood when we sang. In a perfect world, the final notes would ring out and people would quietly disperse. And that’s what happened. I went back to bed feeling better than when I left.
When my partner was in the hospital awaiting the second amputation of his left leg, this time above the knee, his kids and I brought him coffee and croissants (he was French!) and we all sat together in the room, enjoying the food and being together, trying to push away our fears of the operation to come. He was wearing a multicolored scarf I had given him years ago, and a nurse came in and commented about “how stylish” it was. We all started to laugh, and it felt so good.
Thank you, Suleika, for your newsletter and adding me to your free community, which is all the info I can handle at the moment after moving this week as full-time carer of my mum with vascular dementia.
I'm so excited to find you, a writer of your calibre, writing about isolation. I'm writing a parenting memoir, now at super slow pace. I've a low-grade Non-Hodgkin's disease with chronic fatigue and fibromyalgia. These kept me living at home most of the time since about 2016 (writing, yay!) until I've had enough energy, after chemo in 2021, to begin to care for my mum and move to a healthier home.
Congrats on all the great endorsements for your memoir. I just read the sample and want to read more but it's late in Sydney.
I have one of those upside down funny/sad moments. In 2013, I’d been through seven years of trying to have a baby, the last four years of rounds of IVF, and my brother Jude called me and had told me he had news. He and his wife of 11 years had also struggled with infertility. So I was walking through the streets of NYC when he called and I was bracing myself thinking the news he had was that he and his wife Shelly were pregnant and I’d have to pretend to be happy for them while feeling like I was sailing farther away on an iceberg from the land where that elusive potential baby of mine dwelt. Then remarkably Jude said “Shelly and I are getting a divorce.” Gobsmacked. Outta the blue. Sigh of relief. Nervous laugh “Thank god,” I said “I was afraid you were calling to tell me you guys were pregnant and I was gonna have to pretend to be happy for you.”