NEW YORK, NY.- In the months following her second bone marrow transplant, Suleika Jaouad’s TikTok algorithm started serving her videos of bearded dragons shedding their skin. For a writer whose work deals in ambiguities, that metaphor was tidier than she’d have preferred.
Jaouad quotes Joan Didion and Emily Dickinson in casual conversation. She is the author of “Between Two Kingdoms: A Memoir of Life Interrupted,” a bestseller that documents her first bone marrow transplant and its aftermath. Diagnosed with acute myeloid leukemia in 2011, Jaouad recorded the experience in real time for a column in The New York Times.
“Why am I drawn to these?” Jaouad, now 35, wondered of the reptilian videos. She posed the question while settling into the crook of her couch at her home in Brooklyn, with a lunch spread laid out over a low table in front of her. Her dog River ogled some baba ganoush from his perch near her feet.
More than time-tested sonnets and snippets of Buddhist wisdom, it was molting bearded dragons that seemed to tell the truth about what Jaouad called, “the experience of forced renewal.” She too had molted — twice now. And like the lizards, she had no choice but to be vulnerable. “I was so stripped bare, I felt larval,” said Jaouad.
This month, Jaouad will revisit the raw period of her cancer recurrence and second transplant when the feature documentary “American Symphony” premieres on Netflix in collaboration with Barack and Michelle Obama’s production company, Higher Ground. The work follows Jaouad and her husband, musician Jon Batiste, as the couple faces what Jaouad has called their “life of contrasts.” Both Jaouad and Batiste serve as executive producers.
Just how stark are the contrasts? In November 2021, Jaouad learned her cancer had returned. That same week, Batiste earned 11 Grammy nominations — the most of any artist. The night before Jaouad checked into the hospital for her transplant, the two — who met as middle schoolers at band camp and later reconnected — married at home and swapped twist-tie rings.
Meanwhile, Batiste continued both to serve as bandleader on “The Late Show with Stephen Colbert” and to compose a one-time performance at Carnegie Hall in New York (also called “American Symphony”) that would distill the whole of American history into sound. In her sterile room, Jaouad started to paint and papered her walls in vibrant, sometimes gruesome watercolor.
None of This Was Supposed to Happen
As in the lead-up to her initial diagnosis, Jaouad had been negotiating persistent fatigue for months when she went to see her doctors for tests.
It had been over a decade since Jaouad’s first bone marrow transplant. Her own medical team was so convinced of her durable health that the biopsy she insisted on was deemed a kind of indulgence. Minutes before the procedure, a nurse told her she didn’t have to do it. “I felt embarrassed,” Jaouad said. “I felt like I was being a hysterical, melodramatic hypochondriac.” She almost backed out, but writer Elizabeth Gilbert — a friend and mentor — had driven her to the appointment. She didn’t want Gilbert to feel she had wasted her time.
Doctors ground into Jaouad’s spine to extract a sample of her marrow. Gilbert stood watch, calling the ordeal “grisly as hell.” The relapse “simply wasn’t supposed to happen,” she wrote in an email. “There was no template for it, which was why nobody was looking for it.”
“I was right to push for the biopsy,” said Jaouad. “I wish I hadn’t been.”
Filmmaker Matthew Heineman had already started production on what would become “American Symphony” when Jaouad’s results came in. Heineman, who directed “Cartel Land” and “A Private War,” had been interested in shadowing Batiste as he devised the Carnegie Hall piece. Jaouad’s recurrence necessitated — as Heineman put it — a “pivot.”
Jaouad was not sure she wanted to function as a plot twist.
“I never want to be flattened into ‘the sick girl,’” Jaouad said of her deliberations. “I said to Matt outright, ‘I don’t want to be the dramatic counterpoint to Jon’s meteoric success.’” Heineman insisted he too was uninterested in the tropes of the illness plot. In “American Symphony” no one feels an errant lump. Jaouad doesn’t have a dramatic phone call with her oncologist. Viewers discover she has cancer in the middle of a fierce snowball fight in which Jaouad — struck and faux-outraged — protests: No hitting the girl with leukemia.
Jaouad came around on the project as she did on “Between Two Kingdoms.” Then too, she had been hesitant. Jaouad recalled an encounter with writer Cheryl Strayed not long after her first transplant. She told Strayed she wanted to write a book, but not one about illness. Strayed told her she had once been determined to avoid writing about the death of her mother. Then she turned in the manuscript for “Wild: Lost and Found on the Pacific Crest Trail.”
“It’s about the hike, but it’s all about her dead mother,” Jaouad said with a smile.
Jaouad’s book, and to some extent, “The Isolation Journals,” a popular newsletter she launched at the outset of the pandemic, explores how to reenter the world after devastation. “American Symphony” follows up: How to keep going when there’s no straightforward “after.”
So when it came time to watch an initial cut of the film (drawn from 1,500 hours of footage), Jaouad queued it up alone. “I feel a bit desensitized to it now,” she said. “That specific time is not representative of how I live or who I am.” But she has “no qualms” about her depiction or the decision to let Heineman film the crucial appointment three months post-transplant in which she would learn if her transplant worked. Heineman thus found out at the same time she and Batiste did that the procedure had been a success — and that Jaouad would have to be in treatment to outwit her cancer for the rest of her life.
“To describe it as a roller coaster would be an insult to roller coasters,” Jaouad said of her emotional whiplash. “The idea of indefinite treatment thrust me into a whole different kind of in-between place, and it’s one that I’m still learning to swim in.”
“She’s able to transform darkness, alchemize darkness, and transmutate darkness into light,” Batiste said in a phone interview. (He called hours after still more Grammy nominations. This year, he earned six, including one for “Butterfly” — the song that plays in the “American Symphony” trailer and which he wrote for Jaouad.) “She’s able to look into what she’s facing and see not only how she can find God and find healing through it, but also provide that insight to hundreds of thousands and millions of other people out there whom she’s never met.”
Necessary Optimism
After the film premiered at the Telluride Film Festival, Jaouad recalled that someone in the crowd approached her and said how relieved she was: “You’re still here.”
“When it comes to illness stories, we tell them from the vantage point of having survived,” Jaouad said. In that sense, “American Symphony,” which stops short of a white-text-black-screen epilogue and offers no update on Jaouad’s health, is a corrective. “It wasn’t clear that I was going to survive the shooting period of this,” she said. The credits roll, but there is no neat ending for Jaouad and Batiste.
“None of us know if we’re going to exist in the future, but I have a heightened fear of not existing in the future,” Jaouad said.
In “Between Two Kingdoms” Jaouad writes about her exchanges with a man named Quintin Jones. Jones, who introduces himself to her as “Lil GQ,” read her columns while on death row. He’d written from a place of recognition — one trapped person to another. After her transplant, she visited him in prison. But the week her book was released, he was given an execution date. Jaouad was devastated. She threw herself into the movement to get his death sentence converted into a life sentence. It didn’t work.
On the morning of his execution, Jones was granted four hours of phone calls. He spent them with Batiste and Jaouad. “It was unbelievable because we were talking in the future tense, knowing that the future wasn’t going to come to pass,” Jaouad said. “He talked about coming to visit us, hanging out in our garden. We were all just choosing to live in that space.” She tried to explain the suspension. Their conscious decision to be outside of time.
Lately, Jaouad is forcing herself to make plans. She sees it as an act of, “necessary optimism,” that she has committed to write two more books. One will be a work of painting and prose that Jaouad has titled “Drowning Practice.” The second will be a book about journaling, incorporating writing prompts. She will show her work at the art center ArtYard next summer.
A few weeks ago, Jaouad traveled to Seattle and was walking outside, suddenly under a torrential rain. Someone rushed to offer her an umbrella. “I was like, ‘No, I’m good,’” Jaouad remembered. She wanted to feel the rain on her face. Back in New York, she let herself fantasize. Not about prizes or red carpets, but about some unspecial rainstorm a decade from now. How incredible it would be not to feel new, she said. “If I’m around, I’ll want the umbrella.”
This article originally appeared in
The New York Times.
