Stimulus & Response
On the universe piling on, surrender, and agency
This week was one of those where, at a certain point, I found myself thinking, “Really? This? Now?” It felt like the universe was piling on a bit too much.
Aside from my own health challenges, the news headlines—both nationally and globally—seemed exponentially more upsetting each day. Then on Thursday, Jon tested positive for covid. It was only two days before the debut of his opus American Symphony at Carnegie Hall. He spent years pouring himself into this project, working harder on it than anything I’ve ever seen, and I was so proud and excited for him. To be honest, I was excited for myself too, since I’d gotten the all-clear from my doctors to attend, and it was going to be my first time at a public gathering in six months. My dear pal Behida was going to be my date, and she’d even made us special outfits for the occasion: a tuxedo for her, for me a lovely charmeuse shirtdress. And just like that, the concert was postponed, and Jon was going into quarantine, and an anticipated joy was replaced with huge disappointment and fear and a veritable logistical nightmare. (Don’t worry—it’s been a rough couple of days, but everyone’s okay, and he’s on the mend.) Never a dull moment in the Jaouad-Batiste household!
Years ago, I might have taken the piling on personally. I might have allowed myself to become overwhelmed, subsumed by the wave of hard things. In such circumstances, it can seem like you have no agency at all, that there’s nothing you can control, that life is happening to you. In difficult moments, I often think back to the Austrian psychiatrist and Holocaust survivor Viktor E. Frankl’s book Man’s Search for Meaning. In it, he chronicles his experience in Nazi concentration camps and reflects on what makes life worth living and how humans can preserve independence and spiritual freedom even in the worst circumstances. And what it comes down to is believing in our own agency, recognizing that in every circumstance, if nothing else, we can control how we respond.
I first read Man’s Search for Meaning back in 2016, as I was struggling with the realization that I might be stuck forever in that liminal space between the kingdom of the sick and the kingdom of the well. Maybe I couldn’t airlift myself out of it in the exact way I’d hoped, but even in the in-between, there was so much I could do.
For the last several years, this has been my guiding philosophy, and it’s been especially crucial in the last few months, as I’ve reentered treatment for leukemia. From navigating covid outbreaks, to unscheduled breakdowns of the body, to biopsy results, to new physical limitations, so much is out of my control. But in how I respond, I have so much agency, so much power—whether it’s choosing to paint when writing seems beyond me, or delighting in the foods I can eat rather than feeling sad about the ones I can’t, or planning a makeshift living-room wedding the night before I was admitted to the bone marrow transplant unit.
I had the chance to go into this a little deeper in the latest installment of Dear Susu, where I wrote about the way illness and creativity are intertwined—how denizens of the kingdom of the sick must reimagine our way of being in the world and being with our loved ones. That sense of agency is vital right now; it’s what allows me to endure. Rather than feeling like life is happening to me, I am actively shaping it. While I can’t change what’s happening in my marrow, I know now that I can work so many other kinds of magic.
With all that in mind, today I’m sharing a quote widely attributed to Viktor Frankl and a prompt inspired by it.
Pulling rabbits out of hats,
P.S. Mark your calendar: Our next gathering of the Hatch, our virtual creative hour for paid subscribers, is happening Sunday, May 22, from 1-2pm ET. Hope to see you there!
P.P.S. We’re more than a third of the way through the 100-day project, and if you’re taking part, I hope it’s been both an anchor and buoy for you as it has been for me. To celebrate, here is a round-up of beautiful creations from our community.
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Prompt 194. Stimulus and Response
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.” —Viktor Frankl
Your prompt for the week:
Write about the space between stimulus and response. Write about a time you recognized it—or you didn’t—and how that impacted your life.
Featured Community Member of the Week
For her 100-day-project, the artist and Isolation Journals contributor Diana Weymar is stitching lines from Mary Oliver’s poems into textile art. Here’s her gorgeous, insightful meditation on her 100-day project, poetry, and love:
“I have always thought of myself as someone who loves Mary Oliver’s poetry. When the 100-day project opportunity came up, I decided to test that love. (A love untested, unexamined is a love unrealized.) Now I comb her poetry for words to craft into an object to share with this community. Editing poetry in this way is like holding up a Jenga block without the tower of blocks in sight. Does it have context? Can it relate to something else?
“And so every day I take this walk with Mary. Some days I find myself not liking her poetry as much as I thought I did—but when a friend recently told me that she thought poetry was almost embarrassingly self-indulgent, I fiercely defended Mary with the passion of a lover. Don’t we always return to a small collection of words for comfort? Isn’t ‘I love you’ a poem? What could be more important than finding yourself in the words of someone you will never meet.
“One of the last things my father gave me before he started to succumb to an illness that is robbing him of language was a copy of Mary Oliver’s New and Selected Poems. He also said to me, around the same time, ‘I am so sorry to be taken from you.” As I write this, a giant blue heron lands in the yard outside my window. It flies on wings longer than my arms. I think that Mary, and my father, would love the poetry of this moment. A love tested is a true love and I love the way Mary Oliver sees birds and the world. Her poetry has wings long enough to wrap around me when I most need it.” —Diana Weymar
Learn more about the 100-day project.
In the newest installment of my advice column, Dear Susu, I answered a question from a community member named “Cracked Vase,” who wonders if it’s selfish to ask for the commitment of marriage if her health poses limitations on her partner’s life. I shared my thoughts and also had my beloved, Jon Batiste, weigh in.
Dear Susu #5: Marriage Vows & the Myth of a Good Catch
My life was radically interrupted by what I now refer to as “my private pandemic,” when a complex autoimmune disease ravaged my whole nervous system. I was at the peak of my career with a new job I loved, when I began experiencing unremitting fatigue, loss of muscular strength, and a range of debilitatneung ogical symptoms. At thirty-four, the vibrant life I had planned fell away like big chunks of earth in a slow-motion avalanche.
A few months before my unraveling, I had also fallen in love, a rare and revelatory phenomenon in my life. I met A. only once in person just before leaving the country for a long-awaited writer’s retreat. I spent more time during that month crafting letters to him than on my writing project. In turn, his own writing, and the vulnerability and tenderness he disclosed there, slowly opened my tentative heart. I returned home ready to discard the old story I had lugged around for years: that I would end up all alone.
Fast forward almost four years: A. and I have navigated the complexity of the pandemic, moving to another state so I could receive more intensive medical care, including off-label use of chemotherapy, and a dizzying rollercoaster of high hopes for my health only to be plummeted back into confusion and despair when treatments have failed. Never have I felt more adrift, broken, and inadequate.
Amazingly, A. is still by my side. There have been countless times when illness has been so traumatizing that I have not wanted to live with my experience, so it surprises me daily that A. keeps choosing to be with me. At one point I considered myself an incredible catch: well-educated, intelligent, attractive, empathic, creative. But after so many years of being pummeled by illness, I feel like a once beautiful vase that is cracked and marked down on the sale shelf by fifty percent. The fate of my health is unknown, as is planning a future life. My functionality is limited and A. often has to engage in normal couple activities on his own. He is an incredibly adventurous person who imagines living in multiple countries and backpacking all over the world. Meanwhile, there are days when I can’t get off the couch.
So here’s my dilemma: I would like to ask A. to marry me, but is it fair to ask him to commit to a future that may involve more limitations in contrast to the adventures he envisions? I admit to wanting the containment and stability that marriage can provide. I also feel proud of everything we’ve traversed and wish to honor this: I think our relationship is ready to graduate to this next phase. At a pre-illness time in my life, I wouldn’t question my self-worth, but illness has made me lose confidence and ultimately, question my lovability given how vulnerable, at times dependent, I feel. Is it selfish to want this commitment?
Dearest Cracked Vase,
In the year leading up to my leukemia relapse, my beloved Jon and I had made so many plans. There were dinners with friends and birthday parties and weekends away. There was our trip to Paris, which was supposed to be a celebratory return, where we were going to explore the city together, then travel by some fancy overnight train with three other couples for a weekend trip to Venice. But time after time, I found myself in bed, utterly exhausted or sick or both. I canceled plans, canceled plans, then canceled more plans. During our trip to Paris, I spent that whole week in our hotel room, not a fancy train in sight except maybe in a fever dream.
All those months, I felt so much shame about not being able to fully participate in my life, especially with Jon. We were living in rural New Jersey, and he was working in New York, and rather than staying in the city, at the end of a really long day, he would commute the hour and a half home to have dinner and spend the evening with me. But then he’d get there, and not only would there be nothing for dinner, I’d be in bed, too tired to enjoy his company or really even talk to him. “I’m so sorry,” I’d say. “I have nothing to give right now...”