Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
I spent so many years, moments, awake but not living, caught in the garbage loop of anxiety and panic. This loop worked its way into my dreams as a bear, a huge bear chasing me, feeling the hot breath on my neck running, running, waking in a puddle of sweat. A few years ago, I had the courage to turn around in the dream and just scream, "What? What do you want from me?" The bear replied, " I am here to protect you, but you kept running from me." Wow, mind blown!! I have never had that dream again and finally faced my debilitating anxiety with a somatic/trauma trained therapist and my daily "Yoga to Calm Your Nerves." All because I had the courage to turn around. (Can't wait to view your shared masterpiece "American Symphony.")
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
Suleika, Carmen, our beautiful community, usually after reading these stories on Sunday mornings and then the prompt, I have no problem with writing what was illuminated within me. These last two weeks I’ve had nothing to write, and almost began judging myself, but I immediately stopped the judgement and realized I’m not a machine, I could receive great joy in reading what others have written and leave myself alone. Allowing myself to participate by reading the beautiful writings of what other people have written. Last week I wrote something and deleted it, and this week no words after reading and the prompt. At first I felt sad, that I wasn’t enough, that I had dried up, and then I just stopped my ego, and was able to feel gratefulness that I could read all of the beautiful writings, and that I would be able to see the beautiful love story Suleika and Jon have created in “American Symphony Symphony”. I am human, I am enough, and will always be a participant in this community one way or another. Sometimes I just need to be quiet and take in all the beauty, pain and sadness. Thank you community for all that I receive.
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
I didn’t know it would be excess
Spending four hours with friends on Thanksgiving.
Good friends, close friends, understanding friends.
Picked me up, drove me to their home (something I could easiiy have done on my own in a better time);
They did all the preparing and cooking.
All I had to do was sit in the comfortable car and deliver the pie I hadn’t even baked, but had bought from a local bakery on my way home from one medical appointment or another.
I didn’t know it would be excess to engage so fully
To talk and laugh and be together, just the three of us
That the next days I’d be flattened by the simple pleasures of being together
It had been many months since I’d been at their home
Recovering from whatever it was that hit me in early Spring
Talk about excess: that’s what I’d call the endless tests with unpronounceable names, and blood draws, and xrays, and mris, that left us with as many questions as answers.
It wasn’t that long ago that excess had a different meaning: walking too far with my dog on a beautiful day – spending that extra hour I knew I should not spend in the garden as the wind came up
Things I could control if I cared to, which I didn’t.
Now, in unknown territory, how can I know what is too much before it exacts its toll?
Nov 26, 2023·edited Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
Dear Suleika, fellow Substacker here and just went to see your film American Symphony in a little NYC theatre (I am visiting from London for a few days)— and wow, what a beautiful beautiful gift. Such a generous insight into you both especially after enjoying your memoir so much. I cried but it was also so funny. Afterwards I walked across Washington Square Park in the Autumn sunshine and listened to a man play the piano for a while. 🥰🥰🥰 Thank you for your work. xoxoxo
Nov 26, 2023·edited Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
I have been writing about a recently discovered penchant I have had for "running" in my life. Looking back, it seems I had always been running away from one thing or another my entire life. I can look back and make a list of the ways by decade and am finally at a place in life where I have stopped running and am learning to trust and be still. There is one decade, in my early forties, when I had just come out on the other side of many years of suffering from terrible anxiety and depression and I felt free. I then filled every moment with physical activity...wind surfing (the wind in my face!) sailing, mountain biking, and lifting weights. When I think of doing something to excess, I remember when alone, I did three of these things within the hours of one fine day. I went to the lake and spent several hours windsurfing, had to self-rescue at one point and drag myself, exhausted up onto a bank a quarter mile from where I started, then drove home, grabbed my bike, and off I went, only stopping when I got so tired that I couldn't peddle up a small hill, then, drove over to the beach, where I put on my fins and went body surfing....ending up being pulled under and dragged face first under a wave along the sandy ocean bottom and tossed out onto the dry sand like Jonah being spit out of the whale's mouth. Later, after walking into my apartment with bike, fins, and board, a neighbor said to my daughter, "Does your mother ever stop?" I thought, "I need to stop." I felt like I was trying to excise demons by all the activity and I had gotten addicted to the process. I knew I was taking my power back after so many years of being stuck and afraid, but it was too much. "I could kill myself doing this," I thought. I settled down quite a bit after that day, and it's probably why I am still here to tell the story. You better believe my husband and I are signed up to watch American Symphony as part of this community and I CANNOT WAIT!
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
I have, after six years, begun to sleep. To sleep for 4, 5 or bless me, maybe 6 hours in a row. It is a long story of a heart break that my body and mind could not absorb. Anxiety attacks, full body shakes, black outs, and then, insomnia. I am finding my way back to sleep without the help of pharmaceuticals. (Please note, I believe in science and medicine!😊) Even so, being an introvert who loves meaningful conversation and beautiful music, I must measure out these pleasures. Being an audio learner, everything sticks!
On another note, last night as I was turning out the lights, watching the beautiful snow fall, I thought, “ Oh! Tomorrow is Sunday. What glorious and thought provoking missive will Suleika bring us? What whole hearted stories will be shared?”
More than anything else, I long for a place to belong. For a place at the table. To be known. The Isolated Journals is an answer to my prayer. Thank you, Suleika. Thank you, friends.
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
I can’t wait to see it. Full transparency: I started reading your NYT columns when my husband was suffering from an ultimately fatal neuroendocrine cancer and your take on living with cancer felt so relevant to us. Soon after losing my husband, my dad, who had MDS, transitioned to AML and died two years later. My 34-year-old daughter was actually diagnosed with MDS at age 15, and is monitored but remains healthy (me and my other kids do not have it-go figure). So I feel very invested in your struggles and am so very, very thrilled that you are not only surviving, but thriving. You sharing your experiences matter so much ❤️❤️❤️
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
A little trivia: Robert Frost taught here at the University of Michigan from 1921 to 1926. He was the University’s first fellow in the creative arts, and initially received a $5,000 stipend for eight months (the equivalent of $85,000 today). He was an immediate hit, and invited back. The students liked him so much that he was honored at a Michigan football game. Frost was known for his nocturnal wanderings. He lived on Pontiac Trail, about a mile from downtown, and would walk the streets alone overnight, I guess pondering ideas. He became well known to the police, who would spot him and leave him be. The desk he used here is in the Undergraduate Library.
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
My second career as a marriage and family psychotherapist is slowly coming to an end. I think about all the people I sat with, hurting and desperate for understanding and love. I have consumed so many, many stories. I want to do more with what I have learned from these stories I was given. But I am satiated. Considering the word, surfeit, helped me to realize that I need to live a bit more away from the stories before I am able to do more with what I have learned.
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
Suleika, I was honored to see this showing at the 92ndStY and it is simply stunning. Breathtaking. Heart warming. Loving. And heartbreaking. A true love story. Thank you both for your generosity of your immense vulnerability and time. And frankly truth. Those 3 things are not shared often. So thank you. I cannot wait to watch it again. And again. And again. Because I am sure between all the words, smiles, glances and sighs I will catch something new every time xoxoxo Di
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
Adrenaline has always been my seductress. I have chased it's elusive shadow for most of my life. To ski that ultimate Black Diamond run, volunteer for the extremes of duty in the military, climb that vertical wall of a mountain in Colorado, dive out of planes or deep into the soul of the ocean, that drug of adrenaline has always intoxicated me.
Even now, into my sixties, that seductive dance of an adrenaline high never leaves my side. There is a joy in the fear-sweat of standing on the precipice, falling forward into an extreme.
Even the diagnosis of metastatic prostate cancer feeds that craving for more of the adrenaline drug. The not knowing, sitting in the abyss of dark feelings in the middle of the night, well into dawn, embracing the savage fear of not knowing.
I still chase that adrenaline rush. With the situation in Gaza unfolding, I desperately look for a way to parachute into the middle of it all (Clarissa Ward is my Patron Saint of extreme journalists!).
That need for more and more and more never goes away.
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
I spent a few years as a founding member of a kibbutz. I was assigned to work in a series of monotonous jobs. It never failed that whatever job I was doing I would dream about it later. If I had been picking oranges I would dream about picking oranges. If I had been collecting rocks and boulders from fields that had not been planted for years I would see fields of rocks in my dreams. If I was on kitchen duty I would dream of fried eggs.
In my professional life I sometimes dream of patients with problems that are so deep seated I can not do much to alleviate them or of patients that are verbally abusive and threatening.
I have learned that watching the news too much is not helpful to my mental health, but sometimes I cannot help myself and I find myself following the news too closely. Right now my dreams are occupied by the hostages and prisoners Israel and Hamas are exchanging.
I would love to have the skills to handle the issues of the day during the day so that night can reserved for dreams of frolicking in a field of wild flowers or some other pleasant pursuit.
Your words about isolation come at the most perfect time. I have been struggling with my three teenage stepsons, along with just feeling my regular old depressed (thanks, brain chemistry), which results in overwhelming sadness for me. I’m trying my best to be grateful for all the wonderful things in my life, but it’s been incredibly challenging for me. Helps so much to know I’m not alone in this. And I’m so looking forward to watching American Symphony and celebrating your and Jon’s love. Thank you from the bottom of my heart for sharing all of this with us. You are loved. ❤️
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley
Living in the world of uncertainty and sharing the most intimate moments of one’s feelings all under the leering camera’s eye, for months at a time...yes, to all that you have said, Suleika. I experienced that while we were filming my 23 year old daughter Sara’s “living with cancer” story. Our director was wise, kind and compassionate always giving us permission to turn off the cameras if Sara needed to process new information - like during the final months of shooting the doc when a scan revealed her cancer had recurred - no fairy tale ending - AND Sara decided to continue to finish the film - which has comforted and changed thousands of young adult lives. Like you and Jon, Sara felt compelled to share her story to help others feel less alone during such a life transforming experience.
It takes humongous courage and a huge heart to share personal intimate stories so the world can be a kinder place to live, love and breathe in. Not everyone has the ability to do this. Thank you, Suleika and Jon (and your director, Matthew Heineman) for sharing your love story with the world. You make it a better place to live within.
I spent so many years, moments, awake but not living, caught in the garbage loop of anxiety and panic. This loop worked its way into my dreams as a bear, a huge bear chasing me, feeling the hot breath on my neck running, running, waking in a puddle of sweat. A few years ago, I had the courage to turn around in the dream and just scream, "What? What do you want from me?" The bear replied, " I am here to protect you, but you kept running from me." Wow, mind blown!! I have never had that dream again and finally faced my debilitating anxiety with a somatic/trauma trained therapist and my daily "Yoga to Calm Your Nerves." All because I had the courage to turn around. (Can't wait to view your shared masterpiece "American Symphony.")
Suleika, Carmen, our beautiful community, usually after reading these stories on Sunday mornings and then the prompt, I have no problem with writing what was illuminated within me. These last two weeks I’ve had nothing to write, and almost began judging myself, but I immediately stopped the judgement and realized I’m not a machine, I could receive great joy in reading what others have written and leave myself alone. Allowing myself to participate by reading the beautiful writings of what other people have written. Last week I wrote something and deleted it, and this week no words after reading and the prompt. At first I felt sad, that I wasn’t enough, that I had dried up, and then I just stopped my ego, and was able to feel gratefulness that I could read all of the beautiful writings, and that I would be able to see the beautiful love story Suleika and Jon have created in “American Symphony Symphony”. I am human, I am enough, and will always be a participant in this community one way or another. Sometimes I just need to be quiet and take in all the beauty, pain and sadness. Thank you community for all that I receive.
I didn’t know it would be excess
Spending four hours with friends on Thanksgiving.
Good friends, close friends, understanding friends.
Picked me up, drove me to their home (something I could easiiy have done on my own in a better time);
They did all the preparing and cooking.
All I had to do was sit in the comfortable car and deliver the pie I hadn’t even baked, but had bought from a local bakery on my way home from one medical appointment or another.
I didn’t know it would be excess to engage so fully
To talk and laugh and be together, just the three of us
That the next days I’d be flattened by the simple pleasures of being together
It had been many months since I’d been at their home
Recovering from whatever it was that hit me in early Spring
Talk about excess: that’s what I’d call the endless tests with unpronounceable names, and blood draws, and xrays, and mris, that left us with as many questions as answers.
It wasn’t that long ago that excess had a different meaning: walking too far with my dog on a beautiful day – spending that extra hour I knew I should not spend in the garden as the wind came up
Things I could control if I cared to, which I didn’t.
Now, in unknown territory, how can I know what is too much before it exacts its toll?
Dear Suleika, fellow Substacker here and just went to see your film American Symphony in a little NYC theatre (I am visiting from London for a few days)— and wow, what a beautiful beautiful gift. Such a generous insight into you both especially after enjoying your memoir so much. I cried but it was also so funny. Afterwards I walked across Washington Square Park in the Autumn sunshine and listened to a man play the piano for a while. 🥰🥰🥰 Thank you for your work. xoxoxo
I have been writing about a recently discovered penchant I have had for "running" in my life. Looking back, it seems I had always been running away from one thing or another my entire life. I can look back and make a list of the ways by decade and am finally at a place in life where I have stopped running and am learning to trust and be still. There is one decade, in my early forties, when I had just come out on the other side of many years of suffering from terrible anxiety and depression and I felt free. I then filled every moment with physical activity...wind surfing (the wind in my face!) sailing, mountain biking, and lifting weights. When I think of doing something to excess, I remember when alone, I did three of these things within the hours of one fine day. I went to the lake and spent several hours windsurfing, had to self-rescue at one point and drag myself, exhausted up onto a bank a quarter mile from where I started, then drove home, grabbed my bike, and off I went, only stopping when I got so tired that I couldn't peddle up a small hill, then, drove over to the beach, where I put on my fins and went body surfing....ending up being pulled under and dragged face first under a wave along the sandy ocean bottom and tossed out onto the dry sand like Jonah being spit out of the whale's mouth. Later, after walking into my apartment with bike, fins, and board, a neighbor said to my daughter, "Does your mother ever stop?" I thought, "I need to stop." I felt like I was trying to excise demons by all the activity and I had gotten addicted to the process. I knew I was taking my power back after so many years of being stuck and afraid, but it was too much. "I could kill myself doing this," I thought. I settled down quite a bit after that day, and it's probably why I am still here to tell the story. You better believe my husband and I are signed up to watch American Symphony as part of this community and I CANNOT WAIT!
I have, after six years, begun to sleep. To sleep for 4, 5 or bless me, maybe 6 hours in a row. It is a long story of a heart break that my body and mind could not absorb. Anxiety attacks, full body shakes, black outs, and then, insomnia. I am finding my way back to sleep without the help of pharmaceuticals. (Please note, I believe in science and medicine!😊) Even so, being an introvert who loves meaningful conversation and beautiful music, I must measure out these pleasures. Being an audio learner, everything sticks!
On another note, last night as I was turning out the lights, watching the beautiful snow fall, I thought, “ Oh! Tomorrow is Sunday. What glorious and thought provoking missive will Suleika bring us? What whole hearted stories will be shared?”
More than anything else, I long for a place to belong. For a place at the table. To be known. The Isolated Journals is an answer to my prayer. Thank you, Suleika. Thank you, friends.
Blessings all over the place to you!
I can’t wait to see it. Full transparency: I started reading your NYT columns when my husband was suffering from an ultimately fatal neuroendocrine cancer and your take on living with cancer felt so relevant to us. Soon after losing my husband, my dad, who had MDS, transitioned to AML and died two years later. My 34-year-old daughter was actually diagnosed with MDS at age 15, and is monitored but remains healthy (me and my other kids do not have it-go figure). So I feel very invested in your struggles and am so very, very thrilled that you are not only surviving, but thriving. You sharing your experiences matter so much ❤️❤️❤️
A little trivia: Robert Frost taught here at the University of Michigan from 1921 to 1926. He was the University’s first fellow in the creative arts, and initially received a $5,000 stipend for eight months (the equivalent of $85,000 today). He was an immediate hit, and invited back. The students liked him so much that he was honored at a Michigan football game. Frost was known for his nocturnal wanderings. He lived on Pontiac Trail, about a mile from downtown, and would walk the streets alone overnight, I guess pondering ideas. He became well known to the police, who would spot him and leave him be. The desk he used here is in the Undergraduate Library.
My second career as a marriage and family psychotherapist is slowly coming to an end. I think about all the people I sat with, hurting and desperate for understanding and love. I have consumed so many, many stories. I want to do more with what I have learned from these stories I was given. But I am satiated. Considering the word, surfeit, helped me to realize that I need to live a bit more away from the stories before I am able to do more with what I have learned.
Yes Suleika & Jon & cyber friends,
So looking toward to American Symphony; leaving work early to view it!
Up in the middle of the night unable to sleep here down my dirt road in the woods of Southern Oregon...
It is dark; the almost full moon that shone so brightly is gone now.
There is total silence, but my mind is reeling...
About “the not knowing“ about balancing the recognition & acceptance of that. Always teeter-tottering...
Pondering balance on so many levels; work & its all encompassing drive... health & its demand for attention too.
Robert Frost and his too many apples resonates. Plans & projects so big they fill many barrels of joy and exhaustion simultaneously...
It is 5am here... I guess I will start my day...💜Deb
Suleika, I was honored to see this showing at the 92ndStY and it is simply stunning. Breathtaking. Heart warming. Loving. And heartbreaking. A true love story. Thank you both for your generosity of your immense vulnerability and time. And frankly truth. Those 3 things are not shared often. So thank you. I cannot wait to watch it again. And again. And again. Because I am sure between all the words, smiles, glances and sighs I will catch something new every time xoxoxo Di
Do Not Go Gentle
In a foggy freezer, hot desire unfolds,
Whispering pleasures, songs of gold.
Do not go gentle into that good Häagen-Dazs.
Spoon in hand, licking creamy delight,
If this is wrong, I don’t want to be right,
Eyes roll back, savoring Häagen-Dazs.
Chocolaty waves dance a midnight rage,
Symphonies of ecstasy, our tongues engage.
I do not go gently into my Häagen-Dazs.
Guilt & pleasure, like rabid dogs,
Howling flavors in moonlit fogs,
Oh, my heart lingers on you, Häagen-Dazs.
In hard quiet hours, dreams softly explore,
A bitter yarn spun, a sweet encore.
Go, go gentle into that good Häagen-Dazs.
Adrenaline has always been my seductress. I have chased it's elusive shadow for most of my life. To ski that ultimate Black Diamond run, volunteer for the extremes of duty in the military, climb that vertical wall of a mountain in Colorado, dive out of planes or deep into the soul of the ocean, that drug of adrenaline has always intoxicated me.
Even now, into my sixties, that seductive dance of an adrenaline high never leaves my side. There is a joy in the fear-sweat of standing on the precipice, falling forward into an extreme.
Even the diagnosis of metastatic prostate cancer feeds that craving for more of the adrenaline drug. The not knowing, sitting in the abyss of dark feelings in the middle of the night, well into dawn, embracing the savage fear of not knowing.
I still chase that adrenaline rush. With the situation in Gaza unfolding, I desperately look for a way to parachute into the middle of it all (Clarissa Ward is my Patron Saint of extreme journalists!).
That need for more and more and more never goes away.
I spent a few years as a founding member of a kibbutz. I was assigned to work in a series of monotonous jobs. It never failed that whatever job I was doing I would dream about it later. If I had been picking oranges I would dream about picking oranges. If I had been collecting rocks and boulders from fields that had not been planted for years I would see fields of rocks in my dreams. If I was on kitchen duty I would dream of fried eggs.
In my professional life I sometimes dream of patients with problems that are so deep seated I can not do much to alleviate them or of patients that are verbally abusive and threatening.
I have learned that watching the news too much is not helpful to my mental health, but sometimes I cannot help myself and I find myself following the news too closely. Right now my dreams are occupied by the hostages and prisoners Israel and Hamas are exchanging.
I would love to have the skills to handle the issues of the day during the day so that night can reserved for dreams of frolicking in a field of wild flowers or some other pleasant pursuit.
Your words about isolation come at the most perfect time. I have been struggling with my three teenage stepsons, along with just feeling my regular old depressed (thanks, brain chemistry), which results in overwhelming sadness for me. I’m trying my best to be grateful for all the wonderful things in my life, but it’s been incredibly challenging for me. Helps so much to know I’m not alone in this. And I’m so looking forward to watching American Symphony and celebrating your and Jon’s love. Thank you from the bottom of my heart for sharing all of this with us. You are loved. ❤️
Living in the world of uncertainty and sharing the most intimate moments of one’s feelings all under the leering camera’s eye, for months at a time...yes, to all that you have said, Suleika. I experienced that while we were filming my 23 year old daughter Sara’s “living with cancer” story. Our director was wise, kind and compassionate always giving us permission to turn off the cameras if Sara needed to process new information - like during the final months of shooting the doc when a scan revealed her cancer had recurred - no fairy tale ending - AND Sara decided to continue to finish the film - which has comforted and changed thousands of young adult lives. Like you and Jon, Sara felt compelled to share her story to help others feel less alone during such a life transforming experience.
It takes humongous courage and a huge heart to share personal intimate stories so the world can be a kinder place to live, love and breathe in. Not everyone has the ability to do this. Thank you, Suleika and Jon (and your director, Matthew Heineman) for sharing your love story with the world. You make it a better place to live within.