Prompt 189. All in One Palm
A big day & a prompt from Jon Batiste on music, joy, pain
Hi friend,
It’s a big day in our household. The Grammy Awards are tonight, and my beloved, Jon Batiste, is a featured performer and up for eleven awards—more than any artist in history other than Michael Jackson (no big deal). Having known him as an awkward teenager with a mouthful of braces, it’s hard to believe. But he’s truly the hardest working, most creatively brilliant person I know, so it also feels so right.
The day Jon and I learned the Grammy news, we were sitting in a hospital room, watching my first dose of chemotherapy drip into my veins. My immediate reaction was, “I’m gonna be there in the audience, cheering and beaming as you take the stage.” I was hellbent, working with my medical team on a plan so that I could make it, only to have the Grammys delayed and moved to Vegas because of the Omicron wave. Even so, I kept at it from the bone marrow transplant unit. Bald with no eyelashes and disappearing eyebrows, I quipped that I’d take the red carpet by storm—I started calling my look “alien chic.” Jon was in on it, researching ways to keep me safe, including an astronaut helmet-type contraption that was supposed to filter the air and protect me from germs. But in the end, despite our most valiant efforts and scraping-the-bottom-of-the-barrel solutions, my transplant doctor’s verdict was, in essence: Abso-effing-lutely not.
Instead I’ll watch the show from home with a couple of close friends and my mom, bundled in a sweater and knit hat under multiple blankets with my trusty heating pad, which I’m concerned is beginning to meld to my flesh. It’s been a hard week—I’m being treated for complications from my transplant, and I’ve been feeling discouraged. But it hasn’t been all sad and bad. My dad and brother are in Tunisia visiting family for Ramadan, so my mom, Carmen, and I have become a little coven and worked out a nice cadence for our days. I spend the mornings at the hospital, with the two of them trading off accompanying me. Then in the afternoon, I lie on the couch and tackle work projects with Carmen, who sits at a little makeshift desk across the room. My mom stands at the far window, taking in and painting the views, chiming in with an opinion or two (or ten). We eat dinner together each night and then watch something—from very serious arthouse films to incredibly trashy reality shows that leave us shouting expletives at the TV and laughing until tears are spilled. (Still recovering from our latest run: The Power of the Dog, Love Is Blind: Season 2, and The Tinder Swindler. Yikes.)
To me, this is so much of life: holding the really beautiful things and the deeply cruel, profoundly hard things in the same palm. Holding the toll of my illness alongside my happiness for and with Jon. Holding this week’s medical complications beside the beauty of diving into the 100-day project with our community.
In honor of Jon’s big day, we are resharing a favorite prompt from him. No surprise, it’s about music—about its magic, its wisdom, its transcendent power.
Seeking advice on germ-free teleportation to Vegas,
Suleika
P.S. It’s Day 3 of the 100-day project! We posted a discussion thread about the eternal question for a long creative challenge: How do we make it stick? You can find it here!
P.P.S. If you’re new to the Isolation Journals or only just hearing about the 100-day project, here’s everything you need to know. It’s not too late to join us!
The Isolation Journals is my newsletter for people seeking to transform life's interruptions into creative grist. Both free and paid subscriptions are available. The best way to support my work is with a paid subscription, where you get added benefits like access to my advice column Dear Susu, an archive of interviews with amazing artists, behind-the-scenes tidbits from me, our virtual writing hour the Hatch, and other opportunities for creative community.
Prompt 189. Anthems by Jon Batiste
There was a time before music was commodified—before people sold tickets to “see” it, streamed it over the information superhighway, or pasted logos of it on compact discs and t-shirts. Our ancestors used music as a way to communicate deep truths, hidden messages, collective wisdom, and unspoken joy and pain.
Yet even in the modern realm, at its best, music remains a divine source. We still get glimpses of that power from time to time from our great artists, and these moments frame our lives.
Your prompt for the week:
When was the last time you experienced art that transcended enjoyment and overwhelmed you with its power? How would you translate that magic into words? If this hasn’t been an experience you’ve had—make it up.
Bonus prompt:
If you’re doing a 100-day project, make yourself a playlist of music to accompany your creative practice.
For more paid subscriber benefits, see—
Jon Batiste on The Art of Failure: An Interview & his Ma’s Red Beans & Rice recipe
Our community discussion on accountability and sustaining a creative practice
Dear Susu #4, Love in a Time of Cancer (Part 2), on how we make it through
Featured Community Member of the Week
A glimpse of Nancy Booke’s Day 1 of her 100-day project. She’ll be planting a garden. Also I spy our Isolation Journals No. 1 notebook, so I suspect writing’s part of it too.
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.
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.