Podcast Summary: Suleika Jaouad’s Survival Mechanisms (Replay)

People I (Mostly) Admire with Steve Levitt
Episode Date: November 15, 2025
Guest: Suleika Jaouad
Theme: Reflections on illness, survival, authenticity, and community through the journey of cancer and beyond

Episode Overview

This episode features a deeply personal and wide-ranging conversation between host Steve Levitt and writer/memoirist Suleika Jaouad. Jaouad, the author of "Between Two Kingdoms" and subject of the Academy Award-nominated documentary "American Symphony", shares her journey from being diagnosed with leukemia at 22, experiencing years of treatment and isolation, and navigating both survival and the challenges of returning to life. The dialogue covers vulnerability, the inadequacies of our language around illness, the ethics and logistics of bone marrow donation, post-recovery trauma, creativity in isolation, and living authentically in the face of mortality and public scrutiny.

Key Discussion Points & Insights

1. Diagnosis and Early Struggles (03:15–07:33)

• Struggle to Be Believed: Jaouad details the difficulty of getting a cancer diagnosis as a young woman:
  “For so many people, the struggle does not begin with a diagnosis. It begins with months and months of misdiagnoses and the struggle to be believed.” — Suleika Jaouad [05:45]

• Relief at Diagnosis: Despite terror, her main emotion upon finally receiving a leukemia diagnosis was relief:
  “I felt relief to finally be taken seriously. But more than that, to actually have a diagnosis that I could utter out loud and hopefully do something about.” — Suleika Jaouad [07:33]

2. Authenticity in Illness and Relationships (08:17–14:00)

• Scarcity of Authentic Conversation: Jaouad describes the harm of platitudes and “toxic positivity”:
  “Maybe the most insidious one was ‘stay positive’, which is a byproduct of our culture of toxic positivity. ...There wasn’t space for any of that to be aired out. I wanted to be able to talk about the uglier aspects of illness.” — Suleika Jaouad [11:21]

• Advice for Supporting the Ill:
  “If you don’t know what to say, start by saying exactly that. Tell the truth of your inability to find the perfect words, because the perfect words do not exist.” — Suleika Jaouad [08:17]

  • Show up in your own way, offer presence and practical help.

• Pressure for Patients:
  “I wanted so much to be a patient who suffers well. And I felt an immense amount of pressure to inhabit that kind of role.” — Suleika Jaouad [12:35]

3. Community and Expression (14:08–18:40)

• Finding Connection: Initially avoided patient support groups but later formed deep bonds with a small group of young patients ("cancer crew").
• Journaling as Solace: Wrote privately in journals before forming outward connections. This was the germ of later creative community projects.

4. Return to "Normal" Life and Lingering Trauma (18:18–20:21)

• Myth of the ‘End’ of Cancer:
  “I knew I was lucky to be alive, but I was also grappling with everything that had happened. ...It was the world of the living that I didn’t know how to navigate.” — Suleika Jaouad [18:40]

• Post-Treatment Grief: Describes shame and alienation after treatment ended, and comfort found in hospital routine more than “real life”.

5. The Isolation Journals—Creativity During Covid (20:21–22:50)

• Isolation Expertise:
  “All of it felt familiar to me. I was like, oh, I know how to do this. I know how to hunker down and how to transform isolation into solitude.” — Suleika Jaouad [20:21]

• The Isolation Journals: Used her isolation experience to start a journaling project for others, especially during pandemic isolation.

6. Literature and Representation (23:17–26:12)

• On Illness Memoirs: Most were alienating; loved "The Fault in Our Stars" because its characters were not flattened by their diagnoses. “...They were full people with twisted senses of humor... It captured that in-betweenness of young adulthood... the ways in which illness magnifies that.” — Suleika Jaouad [23:57]

7. Navigating Silence, Friendship, and Vulnerability (28:18–34:47)

• Levitt’s Regret: Shares his own avoidance in reaching out to a sick cousin.

• Jaouad’s Compassion:
  “I just want to go on record and say that I have done the exact same thing. ...It is never too late to have those conversations.” — Suleika Jaouad [29:21]

• Grief and Curiosity:
  “I think the greatest joy when you’ve lost someone is to know that they’re remembered... to ask what they were like, to talk about them.” — Suleika Jaouad [32:35]

8. Bone Marrow Donation: Ethics, Logistics, Ideas (34:47–44:09)

• The Problem: Most donors join registries for friends but are contacted years later for strangers and often say no.

• Should We Pay Donors? Jaouad supports compensating marrow donors, especially for communities underrepresented in the registry.
  “Money is an important motivator, not in some gross, dirty way... you are doing an extraordinary thing.” — Suleika Jaouad [38:52]

• Creative Engagement:

  • Jaouad suggests adding personal connection, e.g., a video message from recipients, to increase donor participation.
    “If you were called to be a donor, and with that came a video message from the person hoping for their transplant, how would that make you feel? Would that feel like emotional manipulation?” — Suleika Jaouad [47:00]

• Recipient’s Perspective: On life-and-death dependence on strangers’ decisions:
  “It’s difficult to convey the sense of desperation and vulnerability that you feel when your life hinges on a stranger’s decision.” — Suleika Jaouad [45:45]

• Giving as a Reciprocal Gift:
  “The gift is not just to the recipient. It’s to the donor.” — Steve Levitt [48:02]

9. On Being Filmed: ‘American Symphony’ (51:54–57:29)

• Filming While Ill: Documented second cancer battle in “American Symphony”: “I had to get used to allowing myself to be vulnerable, which is something I can do when I’m the one holding the pen. But I think it’s a lot harder to do when someone else is directing.” — Suleika Jaouad [54:34]

• Catharsis and Immortalization: Watching the film was cathartic, but tough to see oneself only “in crisis”.

• Playfulness with Husband Jon Batiste: Confirmed as real, not editing; includes weekly prank phone calls for fun and connection.

10. Navigating Public and Celebrity Life (59:23–61:09)

• Survival Mechanism: Jaouad copes with new environments by adopting an “anthropologist” stance. “... I pretend I’m an anthropologist and that everything is interesting and noteworthy. ...that sense of being an outsider no longer feels like a failure or a point of discomfort.” — Suleika Jaouad [59:57]

Notable Quotes and Memorable Moments

• "Illness or upheaval is very democratic." — Suleika Jaouad [03:15]
• "The perfect words do not exist. ...Simply say: I'm here. I love you." — Suleika Jaouad [08:17]
• "I wanted so much to be a patient who suffers well." — Suleika Jaouad [12:36]
• "The goal is to be cured ...that wasn't true for me." — Suleika Jaouad [18:41]
• "I know how to hunker down and how to transform isolation into solitude." — Suleika Jaouad [20:22]
• "Money is an important motivator, not in some gross, dirty way..." — Suleika Jaouad [38:52]
• "The greatest joy when you've lost someone is to know that they're remembered." — Suleika Jaouad [32:35]
• "Crying is not a bad thing. To be vulnerable in another's presence ... can be a beautiful thing." — Suleika Jaouad [34:14]
• (On being filmed) "I had to get used to allowing myself to be vulnerable, which is something I can do when I'm the one holding the pen." — Suleika Jaouad [54:35]
• "I pretend I'm an anthropologist and that everything is interesting and noteworthy." — Suleika Jaouad [59:57]

Key Timestamps

• 03:15 — Jaouad reflects on the democratizing brutality of illness
• 07:33 — Jaouad discusses relief (not fear) upon diagnosis
• 08:17 — Advice to friends of seriously ill people: honesty and practical help
• 11:21 — Platitudes versus authentic, difficult conversations
• 14:08 — Connecting with “cancer crew” and the value of honest peer support
• 18:41 — The difficulties of post-cancer life; reconciling trauma with survival
• 20:22 — Coping with the pandemic as an “isolation expert”; the origin of The Isolation Journals
• 23:57 — Representation in cancer narratives and finding solace in fiction
• 29:21 — Both Levitt and Jaouad admit to avoiding difficult conversations with those who are sick
• 32:35 — The power of remembering the lost; being curious, not fearful
• 38:52 — Ethics and effectiveness of compensating bone marrow donors
• 47:00 — Using recipient stories/videos to motivate and humanize donor decisions
• 51:54 — Preparing to be filmed during illness: “American Symphony”
• 57:29 — Playfulness as a coping and connection tool in the midst of crisis
• 59:57 — Adopting the stance of an ‘outsider anthropologist’ to survive new environments

Conclusion

This episode offers an intimate and unsentimental exploration of illness, survival, and the human need for authenticity across suffering, friendship, and community. Both Jaouad and Levitt challenge myths about recovery and resilience, share lessons on supporting those in crisis, and brainstorm systemic change for life-saving medical donations. Jaouad’s wisdom and vulnerability resonate throughout, modeling survival mechanisms not as personal heroics, but as grounded, communal, and sometimes playful adaptations.

Recommended Follow-up:

• Suleika Jaouad’s memoir: Between Two Kingdoms
• Netflix documentary: American Symphony (about Suleika & Jon Batiste)
• The Isolation Journals project by Suleika Jaouad