Suleika Jaouad: A Journey of Illness, Creativity, and Embracing Change

Added: Jan 15, 2024

Finding Solace in Journaling

Living in the hospital, Suleika found solace in journaling, which became a form of agency and a way to anchor herself amidst the chaos of her illness. She also embarked on a 100-day project, where she and her family engaged in daily creative acts as a way to find meaning and purpose in the midst of her illness. This experience led her to realize the importance of finding agency and meaning within limitations, and the value of embracing the present moment.

Embracing Uncertainty

Suleika's experience with illness challenged her to confront the traditional hero's journey narrative often associated with cancer survival. She rejected the pressure to be stoic and brave, and instead sought to explore the messy and uncertain aspects of her experience. She also recognized the lack of support and rituals for those navigating illness and recovery, leading her to create her own support system and rituals to help her find her way back to the world of the living.

Starting a Blog

Despite the challenges she faced, Suleika found a sense of purpose and agency through writing. She started a blog from her hospital bed, which eventually caught the attention of an editor at The New York Times. She proposed the idea of writing a weekly column from the perspective of someone in the midst of treatment, rather than from the vantage point of a survivor. This bold move led to the creation of her column "Life, Interrupted," which provided a platform for her to share her experiences and connect with others going through similar challenges.

The impact of Suleika's writing extended beyond her own experience, as she received numerous letters from people sharing their own stories of illness and life interruptions. This led her to embark on a journey to visit and connect with these individuals, creating a network of support and understanding for those navigating similar challenges.

Embracing Vulnerability and Sharing Stories

Suleika embarked on a solo 15,000-mile road trip to visit strangers and ask them about their experiences of healing and moving forward from their traumas. She shares that the act of sharing unvarnished stories of vulnerability is the secret sauce to connection and the most powerful way to unite people. She struggled with how much to share and the vulnerability equation while writing her book, "Between Two Kingdoms." She received advice from Cheryl Strayed to write what she didn't want others to know about herself, which led her to confront uncomfortable truths and write a great book.

The Recurrence of Illness

Her book eventually became a New York Times bestseller, and she gave a TED Talk that garnered 19 million views. However, shortly after the book's release, she received news of the recurrence of her leukemia. This news came at a time when her life was at a peak, with her partner, John, being nominated for 11 Grammys. The juxtaposition of extreme highs and lows led her to a new chapter of uncertainty and fear.

The Making of "American Symphony"

The documentary "American Symphony" arose from a conversation between John and the filmmaker, Matt, about capturing the process of bringing John's symphony to life. However, the focus of the documentary shifted when Suleika's illness recurred. Suleika initially felt hesitant about allowing a camera into their private lives but recognized the opportunity to show the duality of the human condition. The decision to document their experiences required ongoing reassessment and discussions about what should be off-limits.

The Relationship with John

Suleika and John's relationship began when they were young, and they reconnected later in life. They got married the night before Suleika went back into the hospital for treatment. John's response to her illness was to shut down his work and be with her, but Suleika encouraged him to continue pursuing his career. Despite being physically apart, John composed lullabies for Suleika, bringing them both solace. Suleika found empowerment in her hospital bed by alchemizing her isolation and suffering into something creative and meaningful, such as painting her fever dreams.

Close to Death

Suleika shares the closest she has ever been to death, when she had three simultaneous infections, two of them in her bloodstream, and zero white blood cells. To add insult to injury, her dog also had cancer and had to be put down. She describes feeling like she was falling apart and experiencing intense physical and psychic pain. However, she had a vision of a wooden marionette being lifted by birds, which inspired her to paint a powerful and cathartic painting. She emphasizes the power of creativity to transform brutal experiences into something beautiful and the importance of surrender in navigating uncertainty.

Spirituality and Surrender

Suleika discusses her mixed religious background and how she has never had an easily definable sense of faith or spirituality. However, she has found a sense of being a channel and submitting to something bigger than herself through writing and painting. She describes the experience of surrender as the closest she has come to feeling touched by a sense of divinity. She emphasizes the importance of acknowledging uncertainty and tapping into the mystery and magic of life.

Manifestation and Creativity

Suleika reflects on the role of illness in shaping her creative work and accomplishments. She discusses the concept of manifestation and the power of creativity to make something out of nothing. She shares her ongoing projects, including two books, and how she is navigating the uncertainty of her health by living every day as if it's her first, embracing curiosity and wonder.

The American Symphony

The conversation delves into the metaphor of the American Symphony, which represents the synthesis of influences and the beauty of living in the messy middle. Suleika and John embody this idea as individuals who don't fit into conventional categories and embrace their liminality. The film "American Symphony" captures their relationship and survival as a creative act, reflecting the American experience of navigating duality and ambiguity.

The Power of Improvisation

Suleika reflects on a powerful moment in the film when the power goes out during John's performance at Carnegie Hall, and he begins to play an improvised piano solo. She emphasizes the importance of improvisation and the power of choosing how to respond to challenging situations. She shares her own experience of responding to stimuli and finding agency within her response, leading to growth and transformation.

Embracing Change

Suleika discusses her relationship with change, both the changes she doesn't have control over and the changes she initiates. She shares a quote from Viktor Frankl about the space between stimulus and response, highlighting the freedom to choose how to respond and the power of that choice. She emphasizes the importance of taking time to figure out how to respond and the courage it takes to embrace change.