Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Lovely. As a disabled creative, the importance of creative expression as a form of healing is so essential. Creativity is so essential. I’ve been living with a very rare, progressive muscle wasting condition that has been leading me to complete immobility for over 20 years. I’m almost there. Creativity has intersected and sustained me in so many ways through this journey. People think illness or disability stops us from living and dreaming and creating... but it is because of my disability that I’ve been able to use creativity in ways I’ve never imagined. And live in ways I didn’t imagine. As an advocate for rare disease and disability for almost 16 years, and as an artist, I’ve found the two have merged so beautifully, and the stillness of my body has created mobility in my mind I never imagined. And it is because of this experience. No matter how difficult it has been, it has helped make me a whole person. I thank you for your writing and intimate shares and for your advocacy. i’m wishing you well. Xx
Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
November 1997, rain lashes the windows and my mother lies in a 'coma' beside me in her care-home room. She has arrived at her last days, and is ostensibly unreachable - but her body is still restless.
The care-staff have left the room and, as so often, have left the radio on 'radio 2'. Mum has never cared for light music and I search the airwaves for something more to her taste.
Then I dig around in her bedside table drawer and unearth an old home-made cassette tape I made for her.
Ah, Mozart fills the room, our ears and our hearts. The sounds of rain now are soothing, the colours of the day soft. Mum relaxes in her sleep, and I kiss her gently goodbye...
Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Dear Suleika. Thank you for sharing so much of yourself and your pain - and transmuting it into light. The creativity is alchemical. And it brings so much joy and important healing. All light & love to you & Jon. Here’s a lullaby I wrote during the time of your April project this year. That made me brave enough to share. https://open.substack.com/pub/ninatree/p/lullaby?r=7vmjf&utm_medium=ios&utm_campaign=post
Dec 3, 2023·edited Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
It’s early Sunday morning and I am laying in my hospital bed, wiping away tears after reading what you wrote. I am thankful that I am not dealing with leukemia, but an infection that was found in my urinalysis. I have been here a week. I’m isolated from visitors, except my husband, as the infection is contagious. He wears a mask, gloves and gown. I always enjoy reading what you write here every Sunday, but usually from the comfort of my living room chair.
Music has always been a part of my life. When I am happy, I love fast fun songs. When I’m sad I want songs I can relate to. My sister and I still talk about when we would call each other up and say “I’m having a Linda Ronstadt day!” We each knew what it meant. We were each married with young children but husbands, who were never there for us emotionally. They were not keepers and eventually we didn’t keep them. Our favorite song of Linda’s was When Will I Be Loved and Blue Bayou. We play our records loud and dance. I still love that music and both my sister and I have husbands who are keepers!!
Dec 3, 2023·edited Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
I am a patient at MSKCC who has been in remission for ovarian cancer, and lives with the BRCA 1 mutation for 5 years. I was a dancer, but more importantly would not have survived my journey without the healing power of dance. Luckily, my 17 year old impressive dancing daughter’s journey has been a marker and the golden ticket for my walk “between two kingdoms”. My dear dancer choreographed a piece for my oncologist as a thank you gift. There is so much more I would love to share with you about the power of this art form as a driver and marker for my survival. Best to you, Wendi
Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
My brother received an autologous stem cell transplant as a bone marrow transplant match was not found. This was long ago, things were vastly different- I did not match. He lived in Vancouver and the transplant was done at Dana Farber (name then) in Boston. I went up to be with hime, along with his wife. The whiteness of the floor- I saw a beautiful woman come in with what seemed like her family. She was dressed like a princess. Two little children sat on the floor outside the door where their Mom was in isolation- they kept saying Mommy, Mommy.
My brother was a Classical Music disc jockey and owned a classical music shop called Magic Flute. One of his friends made some beautiful tapes--and in the sterility the music rang---so much love and hopes despite---
Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Good morning, Suleika! Jon too! Carmen and Holly.
The way you and Jon alchemize obstacles and create art and joy is the stuff of miracles to me. Jon says we are 😇 angels here for one another. Feels so real after watching American Symphony and following your lives these past days. Thank you for your courageous and beautiful hearts and art!
I don’t recall a time in my life without music. Even as a baby I sang myself to sleep. I told my Mom it was my sleep song.
In my 20s, I discovered creativity and music, especially, was so healing and helped me express the raw emotions of chronic illness and trauma. I remember riding in the car to get blood drawn. I took a med that was experimental at the time and had weekly trips to the lab to check for leukemia. It was a risk of taking the med. I remember on an especially challenging day that intuitively I needed art, specifically music so I began to sing often. It became a practice to play piano, sing, paint, draw, dance....creativity was alchemy during the slim shady days of overcoming trauma and hard to treat depression. I remember playing Moonlight Sonata like a dream and felt transported from the pain, ache, fear, and unknowing. It was as if something beyond me, some Divine force, God/Universe sent me art to heal the pain. Music is life! So thank you for these wild, wise, and love bursts of art and community. Many blessings and all good things to you all. ♥️
Hello you 4 butterflies ❤️: Suleika, Jon, Holly and Carmen! After 9/11 everyone was moving out of downtown NYC. I’m an alternative healer and at times intuitive and I received “calling “ to move into that neighborhood. At the same time I was and am an interfaith minister and working and volunteering in at the time what is now called Brookdake Retirement Community. We would give services for the community every other Sunday at 10am and at 9am I would volunteer with the Alzheimer’s and Dementia patients on the second floor. I had never done this before, but I learned so much prior by being part of a music circle for this segment of the community at The Jewish Hospital at west 106th st in NYC run by this incredible music therapist. What I learned in those 3 hours I brought back to the retirement community. I was flying by the seat of my pants. We at Tribeca Spiritual Center bought these residents simple instruments like recorders, maracas, et al and I picked music from their generation and we had sing a longs together. They came alive and in that hour there was so much joy in the room. So many had given up on these sometimes motionless or silent humans, but music brought them alive. I learned so much from them and in those moments the group all became beautiful butterflies transformed by music and singing. It was a humbling experience. Viewing “American Symphony “ was a tapestry of many gorgeous emotions and experiences. May we all be blessed by such goodness in the world. 🌹
Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Reading your words every week warms my heart, lifts me up, and makes me smile. I had the honor of watching American Symphony this week, and I loved all of it. However, my very favorite part was you and Jon playing Simon Says in the hallway at the hospital. Watching your playfulness and ease with one another made me happy. Thank you for sharing your love and your life with us.
Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
This past week I shared your documentary with my husband and a visiting friend, one of my oldest friends. The cliche of music being universal. Beyond language. Above difference. That cliche was transcended by the music presented in that story. The singular yet representative voices. Sublime. The transcendental movement of your entwined story. Moving. When I was a teen in foster care I would sing when alone. The song was usually What’s it All About Alfie. Belting out those lyrics may have saved me.
Dec 3, 2023Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Wanting to run, but stuck in circumstances where I needed to stay still, stay focused, stay calm and stay present. Wanting to hide, but held in a bond of fear...and then, there was Stevie. The indescribable presence, talent and timelessness of Stevie Wonder's "Knocks Me Off My Feet" started me down a road of writing a Rom Com. A Rom Com was the absolute farthest thing from my reality and yet writing it with Stevie's magic, I escaped into a world of make believe, living out what I wanted, and did not and could not have. 65,000 words later, I have a manuscript. Music to the rescue, my rescue.
Thank you Suleika. As always, a beautiful and timely prompt this morning. I am going to send a copy of today's post to friends who might "Join the Symphony" campaign, -especially those with more unique ethnicities.
I always wonder about the profile of fellow followers on "The Isolation Journals." As a mother of a cancer survivor, I know the surface reason of why I follow you. Perhaps I would have followed you anyway, because your writing is stunning and poignant and resonates on such a very human level of connectivity.
When our 2 month-old daughter, Maeve, was diagnosed with neuroblastoma, another mom, also with an infant baby girl, with the same disease, gave us a mylar balloon with vibrant colors and a happy face stamped on its surface. The balloon seemed to hold some kind of magical force. Maeve was mesmerized by it, and would take the string in her hand and pass it from one hand to the other. (Babies are not suppose to have this type of fine motor skill at 2-3 months, but the balloon, and baby Maeve had a special synergy going!) My husband and I made up a little lullaby called "Maeve's Balloon" and would sing it to our baby girl quite often. I think the song, and the balloon helped us as much as it helped Maeve.
When we needed a break from the hospital vibe, the three of us would sneak off to the hospital chapel late at night. With no one there, my husband would go up to the organ, and start playing with fortissimo, - "Take Me Out to the Ballgame!" Fenway Park was just a mile away, and it was so good to think about a lovely spring day watching the Red Sox at our beloved ballpark.
Music...such a glorious and huge part of our lives. There is a song that has comforted me through eras of life...through neglect...trauma...mental illness...loss and grief...serious injury...two brain surgeries...and disability...as well joyful times due to birth of children...artistic endeavors...and even while performing mundane tasks such as mopping the kitchen floor...the song "It's A Wonderful World..." first by Louis Armstrong, and now by Jon Batiste. The music and words immediately bring comfort, gratitude, and renewed wonder and joy.
In March of 2015, our son, Henry, died suddenly. My husband, Sims, and I were on the road with our band. We had just had a light and lovely conversation with Henry on the phone the day before his departure. We were joking around about the surprises we had planned for his birthday. Our tour was coming to a close. We would be home soon. The days that followed unfolded like an improvised chord progression. The root of the chord helped us get up off of our hands and knees. With the help of our friends and family, we planned a "good bye for now" ceremony. We dug his grave. Our friend built his beautiful casket with a flying V guitar engraved on it. And like an unresolved arpeggio, we gradually joined the outside world again. The world around us felt too big, too much of a crescendo to grasp from our small and diminutive selves. Within 20 days we felt a pull to get back to our work to perform and share our music once again. Drawn into the muse, we agreed to return to our schedule. I was scared to do it. Although playing music has always been a direct connection to the Universe for me, I was no longer the "me", that I knew, and the Universe felt out of reach. We expose a piece of our soul when we perform,but my feet still walked through mud. We share our heart, and mine was shattered. Inevitably, the first night came. I was a shell of myself. Yet I felt brave. " I've got this." We took the stage. The audience gave us a standing ovation. This was strange and unusual. Sims and I looked at each other and without a spoken word, we exchanged the thought, "They know." We began to play. We dug deep. My shell exploded away from me with the power of each reverberated note. Each syllable I sang, each brush stroke I played, lifted me up and up and up. I felt Henry's energy around me. I saw Henry as beautiful white energy light. My beautiful son, the ultimate musician,raised vibrations with us through music. Our music. I will never stop singing. After the show, as we met with the crowd, our minds were further opened to the power of music as it became clear that the audience did not "know". They were inspired to greet us with a standing ovation by some magical force from the Universe. And that's the power of music.
Lovely. As a disabled creative, the importance of creative expression as a form of healing is so essential. Creativity is so essential. I’ve been living with a very rare, progressive muscle wasting condition that has been leading me to complete immobility for over 20 years. I’m almost there. Creativity has intersected and sustained me in so many ways through this journey. People think illness or disability stops us from living and dreaming and creating... but it is because of my disability that I’ve been able to use creativity in ways I’ve never imagined. And live in ways I didn’t imagine. As an advocate for rare disease and disability for almost 16 years, and as an artist, I’ve found the two have merged so beautifully, and the stillness of my body has created mobility in my mind I never imagined. And it is because of this experience. No matter how difficult it has been, it has helped make me a whole person. I thank you for your writing and intimate shares and for your advocacy. i’m wishing you well. Xx
November 1997, rain lashes the windows and my mother lies in a 'coma' beside me in her care-home room. She has arrived at her last days, and is ostensibly unreachable - but her body is still restless.
The care-staff have left the room and, as so often, have left the radio on 'radio 2'. Mum has never cared for light music and I search the airwaves for something more to her taste.
Then I dig around in her bedside table drawer and unearth an old home-made cassette tape I made for her.
Ah, Mozart fills the room, our ears and our hearts. The sounds of rain now are soothing, the colours of the day soft. Mum relaxes in her sleep, and I kiss her gently goodbye...
Dear Suleika. Thank you for sharing so much of yourself and your pain - and transmuting it into light. The creativity is alchemical. And it brings so much joy and important healing. All light & love to you & Jon. Here’s a lullaby I wrote during the time of your April project this year. That made me brave enough to share. https://open.substack.com/pub/ninatree/p/lullaby?r=7vmjf&utm_medium=ios&utm_campaign=post
It’s early Sunday morning and I am laying in my hospital bed, wiping away tears after reading what you wrote. I am thankful that I am not dealing with leukemia, but an infection that was found in my urinalysis. I have been here a week. I’m isolated from visitors, except my husband, as the infection is contagious. He wears a mask, gloves and gown. I always enjoy reading what you write here every Sunday, but usually from the comfort of my living room chair.
Music has always been a part of my life. When I am happy, I love fast fun songs. When I’m sad I want songs I can relate to. My sister and I still talk about when we would call each other up and say “I’m having a Linda Ronstadt day!” We each knew what it meant. We were each married with young children but husbands, who were never there for us emotionally. They were not keepers and eventually we didn’t keep them. Our favorite song of Linda’s was When Will I Be Loved and Blue Bayou. We play our records loud and dance. I still love that music and both my sister and I have husbands who are keepers!!
I am a patient at MSKCC who has been in remission for ovarian cancer, and lives with the BRCA 1 mutation for 5 years. I was a dancer, but more importantly would not have survived my journey without the healing power of dance. Luckily, my 17 year old impressive dancing daughter’s journey has been a marker and the golden ticket for my walk “between two kingdoms”. My dear dancer choreographed a piece for my oncologist as a thank you gift. There is so much more I would love to share with you about the power of this art form as a driver and marker for my survival. Best to you, Wendi
My brother received an autologous stem cell transplant as a bone marrow transplant match was not found. This was long ago, things were vastly different- I did not match. He lived in Vancouver and the transplant was done at Dana Farber (name then) in Boston. I went up to be with hime, along with his wife. The whiteness of the floor- I saw a beautiful woman come in with what seemed like her family. She was dressed like a princess. Two little children sat on the floor outside the door where their Mom was in isolation- they kept saying Mommy, Mommy.
My brother was a Classical Music disc jockey and owned a classical music shop called Magic Flute. One of his friends made some beautiful tapes--and in the sterility the music rang---so much love and hopes despite---
Good morning, Suleika! Jon too! Carmen and Holly.
The way you and Jon alchemize obstacles and create art and joy is the stuff of miracles to me. Jon says we are 😇 angels here for one another. Feels so real after watching American Symphony and following your lives these past days. Thank you for your courageous and beautiful hearts and art!
I don’t recall a time in my life without music. Even as a baby I sang myself to sleep. I told my Mom it was my sleep song.
In my 20s, I discovered creativity and music, especially, was so healing and helped me express the raw emotions of chronic illness and trauma. I remember riding in the car to get blood drawn. I took a med that was experimental at the time and had weekly trips to the lab to check for leukemia. It was a risk of taking the med. I remember on an especially challenging day that intuitively I needed art, specifically music so I began to sing often. It became a practice to play piano, sing, paint, draw, dance....creativity was alchemy during the slim shady days of overcoming trauma and hard to treat depression. I remember playing Moonlight Sonata like a dream and felt transported from the pain, ache, fear, and unknowing. It was as if something beyond me, some Divine force, God/Universe sent me art to heal the pain. Music is life! So thank you for these wild, wise, and love bursts of art and community. Many blessings and all good things to you all. ♥️
Having been an oncology nurse for 43 years your sharing your journey is such a light.
Hello you 4 butterflies ❤️: Suleika, Jon, Holly and Carmen! After 9/11 everyone was moving out of downtown NYC. I’m an alternative healer and at times intuitive and I received “calling “ to move into that neighborhood. At the same time I was and am an interfaith minister and working and volunteering in at the time what is now called Brookdake Retirement Community. We would give services for the community every other Sunday at 10am and at 9am I would volunteer with the Alzheimer’s and Dementia patients on the second floor. I had never done this before, but I learned so much prior by being part of a music circle for this segment of the community at The Jewish Hospital at west 106th st in NYC run by this incredible music therapist. What I learned in those 3 hours I brought back to the retirement community. I was flying by the seat of my pants. We at Tribeca Spiritual Center bought these residents simple instruments like recorders, maracas, et al and I picked music from their generation and we had sing a longs together. They came alive and in that hour there was so much joy in the room. So many had given up on these sometimes motionless or silent humans, but music brought them alive. I learned so much from them and in those moments the group all became beautiful butterflies transformed by music and singing. It was a humbling experience. Viewing “American Symphony “ was a tapestry of many gorgeous emotions and experiences. May we all be blessed by such goodness in the world. 🌹
Reading your words every week warms my heart, lifts me up, and makes me smile. I had the honor of watching American Symphony this week, and I loved all of it. However, my very favorite part was you and Jon playing Simon Says in the hallway at the hospital. Watching your playfulness and ease with one another made me happy. Thank you for sharing your love and your life with us.
This past week I shared your documentary with my husband and a visiting friend, one of my oldest friends. The cliche of music being universal. Beyond language. Above difference. That cliche was transcended by the music presented in that story. The singular yet representative voices. Sublime. The transcendental movement of your entwined story. Moving. When I was a teen in foster care I would sing when alone. The song was usually What’s it All About Alfie. Belting out those lyrics may have saved me.
Wanting to run, but stuck in circumstances where I needed to stay still, stay focused, stay calm and stay present. Wanting to hide, but held in a bond of fear...and then, there was Stevie. The indescribable presence, talent and timelessness of Stevie Wonder's "Knocks Me Off My Feet" started me down a road of writing a Rom Com. A Rom Com was the absolute farthest thing from my reality and yet writing it with Stevie's magic, I escaped into a world of make believe, living out what I wanted, and did not and could not have. 65,000 words later, I have a manuscript. Music to the rescue, my rescue.
Thank you Suleika. As always, a beautiful and timely prompt this morning. I am going to send a copy of today's post to friends who might "Join the Symphony" campaign, -especially those with more unique ethnicities.
I always wonder about the profile of fellow followers on "The Isolation Journals." As a mother of a cancer survivor, I know the surface reason of why I follow you. Perhaps I would have followed you anyway, because your writing is stunning and poignant and resonates on such a very human level of connectivity.
When our 2 month-old daughter, Maeve, was diagnosed with neuroblastoma, another mom, also with an infant baby girl, with the same disease, gave us a mylar balloon with vibrant colors and a happy face stamped on its surface. The balloon seemed to hold some kind of magical force. Maeve was mesmerized by it, and would take the string in her hand and pass it from one hand to the other. (Babies are not suppose to have this type of fine motor skill at 2-3 months, but the balloon, and baby Maeve had a special synergy going!) My husband and I made up a little lullaby called "Maeve's Balloon" and would sing it to our baby girl quite often. I think the song, and the balloon helped us as much as it helped Maeve.
When we needed a break from the hospital vibe, the three of us would sneak off to the hospital chapel late at night. With no one there, my husband would go up to the organ, and start playing with fortissimo, - "Take Me Out to the Ballgame!" Fenway Park was just a mile away, and it was so good to think about a lovely spring day watching the Red Sox at our beloved ballpark.
Music...such a glorious and huge part of our lives. There is a song that has comforted me through eras of life...through neglect...trauma...mental illness...loss and grief...serious injury...two brain surgeries...and disability...as well joyful times due to birth of children...artistic endeavors...and even while performing mundane tasks such as mopping the kitchen floor...the song "It's A Wonderful World..." first by Louis Armstrong, and now by Jon Batiste. The music and words immediately bring comfort, gratitude, and renewed wonder and joy.
Wow. You two beautiful, beautiful souls leave me in awe time and time again. Bless you both, Suleika and Jon!
In March of 2015, our son, Henry, died suddenly. My husband, Sims, and I were on the road with our band. We had just had a light and lovely conversation with Henry on the phone the day before his departure. We were joking around about the surprises we had planned for his birthday. Our tour was coming to a close. We would be home soon. The days that followed unfolded like an improvised chord progression. The root of the chord helped us get up off of our hands and knees. With the help of our friends and family, we planned a "good bye for now" ceremony. We dug his grave. Our friend built his beautiful casket with a flying V guitar engraved on it. And like an unresolved arpeggio, we gradually joined the outside world again. The world around us felt too big, too much of a crescendo to grasp from our small and diminutive selves. Within 20 days we felt a pull to get back to our work to perform and share our music once again. Drawn into the muse, we agreed to return to our schedule. I was scared to do it. Although playing music has always been a direct connection to the Universe for me, I was no longer the "me", that I knew, and the Universe felt out of reach. We expose a piece of our soul when we perform,but my feet still walked through mud. We share our heart, and mine was shattered. Inevitably, the first night came. I was a shell of myself. Yet I felt brave. " I've got this." We took the stage. The audience gave us a standing ovation. This was strange and unusual. Sims and I looked at each other and without a spoken word, we exchanged the thought, "They know." We began to play. We dug deep. My shell exploded away from me with the power of each reverberated note. Each syllable I sang, each brush stroke I played, lifted me up and up and up. I felt Henry's energy around me. I saw Henry as beautiful white energy light. My beautiful son, the ultimate musician,raised vibrations with us through music. Our music. I will never stop singing. After the show, as we met with the crowd, our minds were further opened to the power of music as it became clear that the audience did not "know". They were inspired to greet us with a standing ovation by some magical force from the Universe. And that's the power of music.