It never ceases to amaze me how you are able to find the pearl in every pile of rubbish you deal with each and every day. Your optimism and positive outlook on life are so encouraging and contagious Suleika. Holding two diametrically opposing emotions, immense joy and incredible pain, is one of the hardest lessons I am learning in life. And you live this dialectic day in and day out and show up for life each day in the best way you can.
I’m having a very challenging weekend myself health wise and spent a night wracked with pain and chills and shakes and tears, trying to YouTube ways of inserting my own feeding tube because our medical system is so broken and even hiring a private nurse is impossible because of how short staffed the private agencies are. And day by day I am getting sicker and withering away because no matter how much I eat my body is tired and is begging for a break a feeding tube would provide.
I was up late researching where to order supplies and teaching myself four years of nursing skills in a few hours when another tummy attack hit and like your mum, mine was right by my side despite probably wanting to toss her cookies too just witnessing the horrors of refeeding on a frail body.
It is very early here and I am awake with tummy cramps again and saw this in my inbox and am so grateful for the smile and warmth you brought to me in such a dark time. I wish I could send you a space suit so you could walk the carpet with your man but knowing your mumma bear is beside you and that you share a similar bond and sense of humour to the one I share with my mum is comforting to me. I am so glad she is with you - I know without mine I would have given up long ago.
Thank you for sharing your courage, your tenacity, your raw and honest struggle and your unique victories. You have gifted me hope today, hope that things will get better and that I can model your resilience by taking baby steps instead of pushing through a recovery that is teaching me more and more each day to embrace the journey and to remain open to what the universe has planned for me.
Bless you Suleika - you are helping me become the woman/daughter/ friend I desperately want to be.
I am a professional registered nurse, retired from acute care work in hospitals, and now at work helping older adults in the community. Your story touches my nurse's heart so deeply, that if I lived near you I would volunteer my time to help you out; it is so hard to struggle with parts of life that once came to us easily - like feeding ourselves - when we are ill and in pain. The pain of this challenge brings tears of frustration and grief - I have been there myself. Remember that emotional tears are meant to cleanse our souls and bodies of stress and fatigue chemicals. Taking baby steps towards creating a daily routine is very wise and a good conversation to have with yourself when things are hard. Suleika's writings seem to wash over us like a healing balm, the magic of which provides her and us with moments of respite from our struggles. Much love from this nurse to all of you who are valuing and caring for yourselves enough to do what's good by the life you've been given. I wish you well during your search for building quality and meaning.
Thank you so much - I really needed this this morning. I am having a very rough spell these past few days and I listened to an old podcast that Suleika did with Tim Ferriss last summer and she says that when she is struggling, she makes a list of all the ways her body has survived hard moments and this helps to remind her of her resilience. So that is what I did this morning as a writing prompt - I listed all the ways and circumstances my body has survived and I will keep looking at this list and adding to it as I go about my day. And I will keep looking at kind encouraging messages like this one to remind me that I am not alone and that I am very lucky to have so many caring, supportive people in my life.
I hope these 100 days are transformative for you - sending you hugs and so much gratitude :)
Tara, this hurt my heart to hear about your physical pain. I am praying for such healing for you that one you will be amazed by it. If I could hug you I would. Much love. xxoo
One of the hardest parts of dealing with chronic illness is all the things it steals. In our family it was nothing so exciting and momentous as attending the Grammys, but lots of experiences and events and moments we had so looked forward to. For us, forming a new plan helped sometimes, but sometimes we just had to feel sad and grieve the loss of another thing the seizures took (of course all the while just trying to get through very real health scares). I have many times wished for magical teleportation myself...I wish we could all do that for you!
As for music transcending me: I recently had the opportunity to attend a concert by the New Mexico philharmonic, where the theme was the music of John Williams. A few selections from Schindler's List were performed, and one in particular was so moving. The concertmaster, violinist Krzysztof Zimowski, is the son of a Polish concentration camp survivor. His solo was so haunting and beautiful that I was left in tears by the end of it - smack in the middle of a concert full of songs from Jaws and Star Wars and Harry Potter. I couldn't remember the last time a simple piece of music had such a profound effect on me, and I hope it stays with me.
If thoughts and wishes could teleport you to Vegas, we here in your community would beam you there in an instant! Thank you so much for sharing. Holding you in our collective palm. Keep going. With love x PS CONGRATULATIONS on your marriage. So so delighted for you. Hold on to the light 💕✨
Sending love and healing thoughts to you! Congrats to Jon, he's going to need a bus tonight to get all of his awards home! Thank you both for all that you bring to the world!
Suleika, I hope you know how much you and Jon are reaching out to touch the lives of all in your community! When I first read Between Two Kingdoms, I was a veteran teacher of 40 + years, able to communicate with my students only through Zoom because of Covid. I remain amazed at the power of your words and Jon’s music to unite us over time and space. (Side note: As a traffic-phobic person, I was particularly inspired by your courage in driving cross country with your beloved Oscar!) Now, I have retired from teaching, and I so in need of the writing community I have found here. I cannot tell you how much kindness I have found already. Your beloved partner Jon brings us joy as well, through every gift of music and every word and act of love he shares through his work. So as Dawn says in her message, our hands are together in applause, gratitude, and prayer for you both.
It struck me this morning that palm is one letter away from psalm, so I looked up psalm, which is Greek in derivation: ψαλμοί (psalmoi), meaning "instrumental music" and, by extension, "the words accompanying the music." Sending energy for atoms and holograms for teleportation at the very moment you desire, but look, here, you're already there, palms and psalms.
I found you by being a nosey fan of Jon’s music--since a Terry Gross interview. I've facilitated small writing groups for 8 yrs, writing for sanity, longing to be an artist.
I am so grateful for this project and encouragement. For the deep prompts. For a community of wise, vulnerable creatives. Many blessings and prayers for healing and delight.
I too discovered this by being a fan of Jon’s and I also had the privilege to meet him when he was honored by Why Hunger( I was with the cannula and the oxygen).
Chronic illness , progressive illness has always been a dance: sometimes graceful but most often out of step. The dance no matter how clumsy is my dance through life. Illness robs you of so much, loss more easily counted But the ability to challenge myself to move through it - no matter how awkward the movements remind me that I am still here. For the record , I should have left the planet long ago according to my doctor. So while you can , no matter how awkward the dance, the picture , the poem … just be!
This prompt comes easy for me. I was at the Village Vanguard in 2018 when Jon was playing a series of seven shows. I drove down from Vermont just to see a show and I was completely transformed.( this show will always be one of the best I have attended!) Because of the nature of the small venue and my awesome seat I felt that I was actually part of the band. I saw Jon first perform about 10 years ago at the Flynn Space in Burlington Vermont with his Stay Human band, at that time I thought to myself…This man will be an icon…It is with much joy that I’ve watched you grow and become more celebrated, without losing any sense of groundedness. Instead you’ve allowed even more of your radiant self to shine on. As a performer I aspire to being in my full self and part of the giving and receiving process on stage.You are an inspiration to me in that way. It’s also very important to note that thanks to you Jon I found Suleika. From someone who hadn’t read a book in a very long time and hung onto every word of Between Two Kingdoms( often putting it down to make it last longer) my participation in The Isolation Journals has opened me deeper into my own creative self. Between the two of you and all the member of ISJ, I have felt connected during the pandemic to something greater than myself for which I am so grateful! All the best tonight and thank you both Jon and Suleika!
I love this. All true for me except for the part about having experienced Jon and Stay Human for so many years. You are so blessed to have had all that! I have a dream to see Jon Batiste someday in person, hopefully in a love riot while I still have some dance left in my bones! All that said, I am an ardent follower and it is through the light and love of Jon that I am in this community and equally as in love with Suleika. In my 71 years I have never before had a fierce, familial kind of love for anyone of “celeb status” except maybe Paul McCartney when I was twelve! I start my 72nd year today, joyfully following my Isolation Journal contract, adorning my creative space with the 2022 New Orleans jazz fest poster of Jon leading a street riot in NOLO...a birthday present! And adding a list of music, my JBL SPEAKER, and a pile of CDS To listen to in my creative space per Jon’s prompt yesterday. From my core, I pray for Suleika, for Jon and Suleikas future together so full of hope, and for all of my cloud of new beloved friends in the Isolation Journals. This is a powerful team, led by two shining stars in the Universe. WE ARE! Whohooooo!
Happy Birthday Eve! May this be the year you can see Jon in a love riot! And yes we are all so blessed to be a part of this community and feel into our own creative spiritual practices! Peace and Joy to you!
Suleika and Jon are in my thoughts and prayers this morning. Today is my birthday and the simple pleasures in store begin with todays 100 day project creation, CBS Sunday Morning News interview with Jon and Suleika, a lunch visit from my sons, daughter-in-law and new grandbaby, and will end with the Grammys and performances with JB. I wish our community had the power to safely beam Suleika up to the Red Carpet to walk with Jon, but the strength of our community will have us all there for him (and her) in spirit. Love you, thank you for your shining lights in dark times.
Well I posted my Day 1 and 2 in my stories. I only had time to take in some nature as I don’t always get to do that. I found a robin’s nest in my crepe myrtle. What a beautiful delight! I thoroughly enjoyed it. Day 3 will begin with a long nature drive to Church since we live in a farm town. Church is an hour and 20 minutes away. But the scenic peaceful drive is worth it not to mention the Church service. Not sure if I will get to see the Grammys but of course I’m rooting for Jon for sure. You’re always in my prayers Suleika, from one cancer survivor to another. xoxoxo
So wonderful that you and your Mom and Carmen are all together, living and working and sharing meals and ... time, life. Love and all good wishes to you, of course including Jon! I'll go watch the music video now (Freedom)
I am so moved by your columns, and I will hold onto this: "this is so much of life: holding the really beautiful things and the deeply cruel, profoundly hard things in the same palm." Also, thank you for Jon's prompt. I happen to be in Santa Fe and will go to the Georgia O'Keefe museum for the first time today, so I will keep his prompt in mind. Wishing you and him the best tonight and always.
Dearest Suleika.......I have been thinking of you and Jon for weeks.....mindful of all you are each experiencing during this period of time...You and Jon so stunningly embody life's deepest paradox of the need to celebrate life's joys, even amidst all the deep scariness and darkness. My husband and I will be watching tonight, always with you and Jon in our hearts. I truly cannot imagine what these moments are like for both of you.....but I truly try to imagine. Sending both you and Jon very much love, Dearest Suleika.
It never ceases to amaze me how you are able to find the pearl in every pile of rubbish you deal with each and every day. Your optimism and positive outlook on life are so encouraging and contagious Suleika. Holding two diametrically opposing emotions, immense joy and incredible pain, is one of the hardest lessons I am learning in life. And you live this dialectic day in and day out and show up for life each day in the best way you can.
I’m having a very challenging weekend myself health wise and spent a night wracked with pain and chills and shakes and tears, trying to YouTube ways of inserting my own feeding tube because our medical system is so broken and even hiring a private nurse is impossible because of how short staffed the private agencies are. And day by day I am getting sicker and withering away because no matter how much I eat my body is tired and is begging for a break a feeding tube would provide.
I was up late researching where to order supplies and teaching myself four years of nursing skills in a few hours when another tummy attack hit and like your mum, mine was right by my side despite probably wanting to toss her cookies too just witnessing the horrors of refeeding on a frail body.
It is very early here and I am awake with tummy cramps again and saw this in my inbox and am so grateful for the smile and warmth you brought to me in such a dark time. I wish I could send you a space suit so you could walk the carpet with your man but knowing your mumma bear is beside you and that you share a similar bond and sense of humour to the one I share with my mum is comforting to me. I am so glad she is with you - I know without mine I would have given up long ago.
Thank you for sharing your courage, your tenacity, your raw and honest struggle and your unique victories. You have gifted me hope today, hope that things will get better and that I can model your resilience by taking baby steps instead of pushing through a recovery that is teaching me more and more each day to embrace the journey and to remain open to what the universe has planned for me.
Bless you Suleika - you are helping me become the woman/daughter/ friend I desperately want to be.
I am a professional registered nurse, retired from acute care work in hospitals, and now at work helping older adults in the community. Your story touches my nurse's heart so deeply, that if I lived near you I would volunteer my time to help you out; it is so hard to struggle with parts of life that once came to us easily - like feeding ourselves - when we are ill and in pain. The pain of this challenge brings tears of frustration and grief - I have been there myself. Remember that emotional tears are meant to cleanse our souls and bodies of stress and fatigue chemicals. Taking baby steps towards creating a daily routine is very wise and a good conversation to have with yourself when things are hard. Suleika's writings seem to wash over us like a healing balm, the magic of which provides her and us with moments of respite from our struggles. Much love from this nurse to all of you who are valuing and caring for yourselves enough to do what's good by the life you've been given. I wish you well during your search for building quality and meaning.
Thank you so much - I really needed this this morning. I am having a very rough spell these past few days and I listened to an old podcast that Suleika did with Tim Ferriss last summer and she says that when she is struggling, she makes a list of all the ways her body has survived hard moments and this helps to remind her of her resilience. So that is what I did this morning as a writing prompt - I listed all the ways and circumstances my body has survived and I will keep looking at this list and adding to it as I go about my day. And I will keep looking at kind encouraging messages like this one to remind me that I am not alone and that I am very lucky to have so many caring, supportive people in my life.
I hope these 100 days are transformative for you - sending you hugs and so much gratitude :)
Wishing you comfort and strength. 💛
Tara, this hurt my heart to hear about your physical pain. I am praying for such healing for you that one you will be amazed by it. If I could hug you I would. Much love. xxoo
Sending you a hug right back! Thank you so much
Xo
Sending love and light to you
One of the hardest parts of dealing with chronic illness is all the things it steals. In our family it was nothing so exciting and momentous as attending the Grammys, but lots of experiences and events and moments we had so looked forward to. For us, forming a new plan helped sometimes, but sometimes we just had to feel sad and grieve the loss of another thing the seizures took (of course all the while just trying to get through very real health scares). I have many times wished for magical teleportation myself...I wish we could all do that for you!
As for music transcending me: I recently had the opportunity to attend a concert by the New Mexico philharmonic, where the theme was the music of John Williams. A few selections from Schindler's List were performed, and one in particular was so moving. The concertmaster, violinist Krzysztof Zimowski, is the son of a Polish concentration camp survivor. His solo was so haunting and beautiful that I was left in tears by the end of it - smack in the middle of a concert full of songs from Jaws and Star Wars and Harry Potter. I couldn't remember the last time a simple piece of music had such a profound effect on me, and I hope it stays with me.
Allowing space for the grief is so important. Much love to you ❤️
If thoughts and wishes could teleport you to Vegas, we here in your community would beam you there in an instant! Thank you so much for sharing. Holding you in our collective palm. Keep going. With love x PS CONGRATULATIONS on your marriage. So so delighted for you. Hold on to the light 💕✨
❤️
Sending love and healing thoughts to you! Congrats to Jon, he's going to need a bus tonight to get all of his awards home! Thank you both for all that you bring to the world!
🙌🙌🙌
I’m hate a hard week for you, friend. We’ll all be cheering Jon on and holding you in our thoughts.
What a beautiful community you have built! So many sensitive, talented, souls in one place. I’m so happy that I chose to participate.
All of these projects are amazing!
Day 3 I’ll be writing to Jon’s meditations album.❤️
I listen to that album all the time--it’s my go to for company when I’m writing ❤️
We will all bring our palms together tonight for Jon and for you darling Suleika, and Carmen and your Mom. Thank you for sharing your sacred courage.
Suleika, I hope you know how much you and Jon are reaching out to touch the lives of all in your community! When I first read Between Two Kingdoms, I was a veteran teacher of 40 + years, able to communicate with my students only through Zoom because of Covid. I remain amazed at the power of your words and Jon’s music to unite us over time and space. (Side note: As a traffic-phobic person, I was particularly inspired by your courage in driving cross country with your beloved Oscar!) Now, I have retired from teaching, and I so in need of the writing community I have found here. I cannot tell you how much kindness I have found already. Your beloved partner Jon brings us joy as well, through every gift of music and every word and act of love he shares through his work. So as Dawn says in her message, our hands are together in applause, gratitude, and prayer for you both.
It struck me this morning that palm is one letter away from psalm, so I looked up psalm, which is Greek in derivation: ψαλμοί (psalmoi), meaning "instrumental music" and, by extension, "the words accompanying the music." Sending energy for atoms and holograms for teleportation at the very moment you desire, but look, here, you're already there, palms and psalms.
Palms and psalms ❤️❤️❤️
I found you by being a nosey fan of Jon’s music--since a Terry Gross interview. I've facilitated small writing groups for 8 yrs, writing for sanity, longing to be an artist.
I am so grateful for this project and encouragement. For the deep prompts. For a community of wise, vulnerable creatives. Many blessings and prayers for healing and delight.
Such a good interview! I’m pretty sure he blew Terry away 🙃
I too discovered this by being a fan of Jon’s and I also had the privilege to meet him when he was honored by Why Hunger( I was with the cannula and the oxygen).
Chronic illness , progressive illness has always been a dance: sometimes graceful but most often out of step. The dance no matter how clumsy is my dance through life. Illness robs you of so much, loss more easily counted But the ability to challenge myself to move through it - no matter how awkward the movements remind me that I am still here. For the record , I should have left the planet long ago according to my doctor. So while you can , no matter how awkward the dance, the picture , the poem … just be!
Peace,love and dance!
Rebecca, you just gave me THE thing to listen to while I do my 100 day project today--thank you!
This prompt comes easy for me. I was at the Village Vanguard in 2018 when Jon was playing a series of seven shows. I drove down from Vermont just to see a show and I was completely transformed.( this show will always be one of the best I have attended!) Because of the nature of the small venue and my awesome seat I felt that I was actually part of the band. I saw Jon first perform about 10 years ago at the Flynn Space in Burlington Vermont with his Stay Human band, at that time I thought to myself…This man will be an icon…It is with much joy that I’ve watched you grow and become more celebrated, without losing any sense of groundedness. Instead you’ve allowed even more of your radiant self to shine on. As a performer I aspire to being in my full self and part of the giving and receiving process on stage.You are an inspiration to me in that way. It’s also very important to note that thanks to you Jon I found Suleika. From someone who hadn’t read a book in a very long time and hung onto every word of Between Two Kingdoms( often putting it down to make it last longer) my participation in The Isolation Journals has opened me deeper into my own creative self. Between the two of you and all the member of ISJ, I have felt connected during the pandemic to something greater than myself for which I am so grateful! All the best tonight and thank you both Jon and Suleika!
I love this. All true for me except for the part about having experienced Jon and Stay Human for so many years. You are so blessed to have had all that! I have a dream to see Jon Batiste someday in person, hopefully in a love riot while I still have some dance left in my bones! All that said, I am an ardent follower and it is through the light and love of Jon that I am in this community and equally as in love with Suleika. In my 71 years I have never before had a fierce, familial kind of love for anyone of “celeb status” except maybe Paul McCartney when I was twelve! I start my 72nd year today, joyfully following my Isolation Journal contract, adorning my creative space with the 2022 New Orleans jazz fest poster of Jon leading a street riot in NOLO...a birthday present! And adding a list of music, my JBL SPEAKER, and a pile of CDS To listen to in my creative space per Jon’s prompt yesterday. From my core, I pray for Suleika, for Jon and Suleikas future together so full of hope, and for all of my cloud of new beloved friends in the Isolation Journals. This is a powerful team, led by two shining stars in the Universe. WE ARE! Whohooooo!
Happy Birthday Eve! May this be the year you can see Jon in a love riot! And yes we are all so blessed to be a part of this community and feel into our own creative spiritual practices! Peace and Joy to you!
Let me know if you hear of any and I will head there!
And thank you so much for wishes for peace, joy AND a Happy BirthdayXo
💃💃💃❤️🎊
Sending love. ❤️
Suleika and Jon are in my thoughts and prayers this morning. Today is my birthday and the simple pleasures in store begin with todays 100 day project creation, CBS Sunday Morning News interview with Jon and Suleika, a lunch visit from my sons, daughter-in-law and new grandbaby, and will end with the Grammys and performances with JB. I wish our community had the power to safely beam Suleika up to the Red Carpet to walk with Jon, but the strength of our community will have us all there for him (and her) in spirit. Love you, thank you for your shining lights in dark times.
Well I posted my Day 1 and 2 in my stories. I only had time to take in some nature as I don’t always get to do that. I found a robin’s nest in my crepe myrtle. What a beautiful delight! I thoroughly enjoyed it. Day 3 will begin with a long nature drive to Church since we live in a farm town. Church is an hour and 20 minutes away. But the scenic peaceful drive is worth it not to mention the Church service. Not sure if I will get to see the Grammys but of course I’m rooting for Jon for sure. You’re always in my prayers Suleika, from one cancer survivor to another. xoxoxo
Love love love that nature is part of your creative journey. After all, nature is itself creation by the Universe/God/Creator.
So wonderful that you and your Mom and Carmen are all together, living and working and sharing meals and ... time, life. Love and all good wishes to you, of course including Jon! I'll go watch the music video now (Freedom)
A life-giving video if there ever was one ❤️
I am so moved by your columns, and I will hold onto this: "this is so much of life: holding the really beautiful things and the deeply cruel, profoundly hard things in the same palm." Also, thank you for Jon's prompt. I happen to be in Santa Fe and will go to the Georgia O'Keefe museum for the first time today, so I will keep his prompt in mind. Wishing you and him the best tonight and always.
Dearest Suleika.......I have been thinking of you and Jon for weeks.....mindful of all you are each experiencing during this period of time...You and Jon so stunningly embody life's deepest paradox of the need to celebrate life's joys, even amidst all the deep scariness and darkness. My husband and I will be watching tonight, always with you and Jon in our hearts. I truly cannot imagine what these moments are like for both of you.....but I truly try to imagine. Sending both you and Jon very much love, Dearest Suleika.