Suleika Jaouad’s Survival Mechanisms (Replay)

Speaker 1 A rich life isn't a straight line to a destination on the horizon. Sometimes it takes an unexpected turn with detours, new possibilities,

Speaker 1 and even another passenger.

Speaker 2 Two or three.

Speaker 1 And with 100 years of navigating ups and downs, you can count on Edward Jones to help guide you through it all because life is a winding path made rich by the people you walk it with.

Speaker 1 Let's find your rich together. Edward Jones, member SIPC.

Speaker 3 Here for the Lowe's early Black Friday deals.

Speaker 4 You're right on time for some of our biggest savings. We're talking up to 50% off select major appliances, plus up to an extra 25% off when you bundle select major appliances.

Speaker 4 Holiday lights going up soon? Select ladders are up to 50% off right now.

Speaker 3 Get Black Friday prices without the Black Friday crowds. Lowe's, we help.

Speaker 4 You save. Valent through 1119.
Selection varies by location. Select locations only.
While supplies last. See Lowe's.com for

Speaker 5 Our episode today is an encore presentation of a conversation I had back in May of 2024 with Suleka Jawad.

Speaker 5 Suleka is one of those guests who I have never spoken to before they come on the podcast, but who feels like an old friend by the end of our conversation.

Speaker 5 It's only happened a handful of times, but when it does, it makes the episode incredibly special for me.

Speaker 5 And that makes it even sadder to have to say that since this episode aired, Suleka's cancer has come back for a third time. Nobody's tougher, more thoughtful, or more resilient than she is.

Speaker 5 I'm sending my thoughts and love to Suleka, and I hope you will too after listening to our conversation.

Speaker 5 My guest today, Suleka Jawad, was diagnosed with cancer at the age of 22. She spent the next five years fighting the disease before receiving a successful bone marrow transplant.

Speaker 5 Her amazing memoir, Between Two Kingdoms, tells the story of her battle with cancer, as well as the challenges of returning to everyday life after years of being in and out of the hospital.

Speaker 5 A cancer diagnosis is never welcome, but it's particularly cruel to a 22-year-old. Her memoir is one of the most powerful books I've ever read.

Speaker 2 The fear in writing in the first person or writing about a traumatic experience like an illness is that you're not read as a writer, you're read as a sick person.

Speaker 6 Welcome to People I Mostly Admire with Steve Levitt.

Speaker 5 Sulaika brings a profound perspective on death and living to this conversation. I enjoyed talking to her so much, not only for Suleika's emotional insights, but also for her practicality.

Speaker 5 Cancer has stolen so much from you. I just want to acknowledge that upfront and say I'm so sorry that you've had to endure so much.

Speaker 5 And I also want to say, though, that I have incredible admiration for the beautiful and the deeply insightful way in which you've chronicled your experiences.

Speaker 5 It is such a wonderful gift for the millions of people who've read your writing.

Speaker 2 Thank you. One of the interesting things about getting sick is realizing that you're not very special or unique.
Illness or upheaval is very democratic. And

Speaker 2 I've always chafed at the idea of being described as inspiring for merely having survived an illness I never would have chosen in the first place.

Speaker 5 You've shared your story in various forms, first in a blog, and then in a series of New York Times columns entitled Life Interrupted, and eventually in a best-selling book called Between Two Kingdoms.

Speaker 5 And also, of course, there's the Academy Award-nominated documentary, American Symphony. So my first exposure to you was Between Two Kingdoms.

Speaker 5 And when I first read your book, a couple years ago, my oldest daughters were almost exactly the same age as you were when you got diagnosed with leukemia, 22 years old.

Speaker 5 So that very much affected how I experienced the book. And I couldn't help but compare you to my daughters.

Speaker 5 Your book starts before your cancer diagnosis. You begin to feel exhausted.
You have horrible itchy rashes and terrible sores in your mouth.

Speaker 5 And somehow you just persevere through these for months or years. If my daughters had 1 20th of those symptoms, they would have been completely debilitated.

Speaker 5 Now, it served you well that you are so insanely tough after you got your diagnosis, but I wonder if you were more of a whiner. They might have found the cancer sooner.

Speaker 5 What do you think of that argument?

Speaker 2 Let me be clear that it's not that I was just so extraordinarily tough that I was brushing off all of these symptoms. I did feel that something was wrong and I was trying to seek out answers.

Speaker 2 But at every turn, I was told that perhaps I was dealing with anxiety and I was sent home with a sample of an antidepressant.

Speaker 2 I went to see a Chinese herbalist who told me I might have a parasite from studying abroad earlier that summer and sent me home with all kinds of teas. I

Speaker 2 very much was looking for clarification about what was going on. But the truth is, I didn't feel like I was being taken seriously.

Speaker 2 Even as my symptoms progressed and became more serious, they ran every test they could think of, except for a bone marrow biopsy, which they didn't feel was necessary for someone of my age.

Speaker 2 For so many people, the struggle does not begin with a diagnosis.

Speaker 2 It often begins with months and months of misdiagnoses and the struggle to be believed, I think, especially as a young woman, where symptoms are often brushed off or you're told that they're in your head is a common experience.

Speaker 2 And that's the thing.

Speaker 2 Illness is a breach of contract. with the natural order of things when you're 22.
I did feel deeply disconcerted. I I went back and reread some of my journal entries from that time.

Speaker 2 And over and over again, I'm saying things like, something is wrong with me.

Speaker 2 But the latter part of that, the something is wrong with me, I see now that I believed to be an issue, not necessarily of illness, but something more deeply embedded within me.

Speaker 5 When the doctor finally figures out you have leukemia through the test and tells you you have leukemia, absent hearing what you just said and having read what you wrote in the book, I could imagine you describing all sorts of emotions, but I never would have expected that your dominant emotion as you report it would be relief.

Speaker 2 I felt relief to finally be taken seriously, but more than that, to actually

Speaker 2 have a diagnosis that I could utter out loud and hopefully do something about. And very shortly after,

Speaker 2 I of course felt terror. I remember looking at my parents and very quickly averting my eyes because I could see the fear and devastation etched across their faces.

Speaker 5 One of the toughest conversations I could imagine having is with the 22-year-old who's fighting cancer. How do you wish you had been talked to?

Speaker 2 A phrase we often reach for in the midst of crisis is words fail. And because of that, sometimes we end up saying nothing at all.

Speaker 2 And

Speaker 2 I,

Speaker 2 in those early weeks in the hospital, was very surprised and even hurt to discover that some of the friends I'd expected to be present in this chapter of illness ghosted me.

Speaker 2 And I felt really angry about that in those early weeks. The meaning I made from that was that they didn't care, but I've come to know that it's far more nuanced than that.

Speaker 2 I often tell people now that if they don't know what to say, to start by saying exactly that.

Speaker 2 Tell the truth of your inability to find the perfect words because the perfect words do not exist.

Speaker 2 And

Speaker 2 rather than trying to reach for some grand gesture, some beautifully written sentiment, do two things. One is to simply say, I'm here.
I love you.

Speaker 2 And the second

Speaker 2 is to

Speaker 2 do the things you already love to do. If you love dogs, offer to walk someone's dog when they're in treatment.
If you love to cook, drop off a casserole.

Speaker 2 If you love to dance, then do what my friend Behira did, which was call me one day while I was in the hospital and say, look down at the street.

Speaker 2 And when I looked down, she was in the middle of the sidewalk doing

Speaker 2 this wild. shuffling dance and these pirouettes and people were stopping.
They were laughing. I was laughing.
And little sidewalk choreography lasted two minutes and that was it.

Speaker 2 We weren't able to actually visit in person because my immune system was too compromised. But that tiny moment of connection, that act of showing up in the way that only she could

Speaker 2 sustain me and gave me so much joy and made that sense of isolation immediately dissipate.

Speaker 5 I think with my friend B.J. Miller, he's also been on the podcast.
He's a doctor who specializes in end-of-life care and an amazing human being.

Speaker 5 He said that his experience is the single most important thing in these tough conversations is to just be authentic.

Speaker 5 And somehow our intuition tells us to do the opposite, to pretend everything's okay or to try to turn a negative into a positive. Did anyone ever say,

Speaker 5 boy, you look awful? Or I'm really scared you won't make it?

Speaker 2 In a way, I almost wish they had. My experience was the opposite.

Speaker 2 It was being bombarded with platitudes like, God doesn't give you more than you can handle, or keep searching for the silver lining, or you're going to be fine.

Speaker 2 Maybe the most insidious one was stay positive, which is a byproduct of our culture of toxic positivity that Barbara Ehrenreich has written so beautifully about.

Speaker 2 This idea that if you allow any bit of quote-unquote negativity in, you'll somehow make your cancer worse. And I really struggled with that because, of course, I was feeling fear.
I was feeling anger.

Speaker 2 I was feeling grief. I was feeling envy.
And 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.
I needed to.

Speaker 2 I wanted to talk about the isolation. I wanted to

Speaker 2 talk about my very real fear of death.

Speaker 2 I wanted to talk about the sense of guilt that accompanies being the recipient of so much care and watching all of your loved ones have to halt their own lives in order to care for you.

Speaker 2 And what happens when

Speaker 2 we don't allow for those authentic conversations is a kind of sundering. There's the you

Speaker 2 that you have to become. In my mind, it was always this kind of one leukemic starlet who was graceful and selfless and brave.
I wanted so much to be a patient who suffers well.

Speaker 2 And I felt an immense amount of pressure to inhabit that kind of role. And then there's the private you,

Speaker 2 the one that isn't as palatable. in conversation.
And that can put you in a dissociative state.

Speaker 2 And I learned early on that however unfair it may have felt, it was up to me to set the tone of those conversations and to address the very large elephant in the room, which was mortality.

Speaker 5 Were you able to have those authentic conversations with the other patients who were fighting cancer?

Speaker 2 In the very early weeks after my diagnosis, I was determined to not be a cancer patient. I had no interest in going to support groups.

Speaker 2 I was determined to stay the same person I'd been, which I quickly learned was a futile effort.

Speaker 2 Because of the nature of my illness, I spent a lot of those early weeks in medical isolation because the germ risk was too high. And this was in 2012.

Speaker 2 There wasn't as much in the way of online support groups. Everything required in-person participation, which just wasn't possible for me.
And so

Speaker 2 those early conversations

Speaker 2 where I could write into

Speaker 2 the aspects I felt I couldn't say out loud happened in the privacy of my journals. It was a space where I could show up as my most unedited, unvarnished self.

Speaker 2 Later, I befriended a group of young cancer patients. We called ourselves the cancer crew, and they were all people in their 20s and 30s who I felt like I would have been friends with pre-diagnosis.

Speaker 2 One was the poet Max Ritvo,

Speaker 2 the other the painter Melissa Carroll, both of whom are no longer here. But we could talk about illness.

Speaker 2 We could share our side effects. We could talk about the relational aspect of illness.
Nothing was off limits.

Speaker 2 I remember sitting around in the living room of my apartment with a group of four young women I'd met in treatment.

Speaker 2 And we started talking about the thing that you might expect a group of young women to talk about, which was dating and boys.

Speaker 2 And someone mentioned hot flashes and someone mentioned pain during sex.

Speaker 2 And we realized we were all experiencing chemo and radiation induced menopause, which was a side effect that no doctor had mentioned to us as a possibility.

Speaker 2 And that, of course, carries a stigma with it. Even if you don't have cancer, it can be hard and embarrassing and awkward to talk about at any age, but certainly in your early to mid-20s.

Speaker 2 But the reason I mention Melissa and Max is

Speaker 2 those friendships became important

Speaker 2 not only in navigating the illness, but in figuring out what to do with it creatively.

Speaker 5 I'm not generally an emotional or an empathetic person, but I cried over and over reading your book, Between Two Kingdoms. And someone might say, oh yeah, that makes sense.

Speaker 5 It's a sad book about cancer. But I didn't cry at any of the sad parts.

Speaker 5 I cried at the happy parts because I just liked you so much reading the book that I would have tears of joy when finally, and it didn't happen very often, something good would happen to you.

Speaker 5 And I would say that is a sign that you're an amazing writer.

Speaker 2 Thank you for saying that. I had a lot of insecurity around

Speaker 2 essentially starting my writing career by writing about my illness, I worried about being boxed into that identity

Speaker 2 of having my writing liked for the wrong reason. And I've since let go of that because all you need to do is read a patient history on someone's file to understand

Speaker 2 that the mere facts of a bodily drama do not make for compelling reading material. It's the shape you give to those facts.

Speaker 2 It's how you render them and seen and the structure you choose to contain them.

Speaker 5 One of the points you make in your book, which surprised me, is there's this myth that the fight against cancer ends the day that you're declared cancer-free.

Speaker 5 But the way you describe it, that's really just the beginning. That really caught you off guard, right?

Speaker 2 Yeah. The goal is to be cured.
And if you're lucky enough to be cured, then the expectation is that you're done.

Speaker 2 You go back to your life, you fold back into the world of the living and you move on, hopefully with gratitude and some wisdom. And that wasn't true for me.

Speaker 2 I knew I was lucky to be alive, but I was also grappling with everything that had happened. I had no idea who I was and I didn't know anything about post-traumatic stress disorder.

Speaker 2 I felt a deep sense of shame in the aftermath of treatment. I felt like I should be living this full, meaningful life.

Speaker 2 And I wasn't. I could barely get out of bed.
I couldn't function. Bizarrely, it was the outside world that felt scary to me.
I was comfortable in the hospital.

Speaker 2 I had figured out how to exist there and to befriend the hospital's inhabitants. It was the world of the living that I didn't know how to navigate.
And so I began to

Speaker 2 get interested in stories of aftermaths, what happens after the calamitous event. And that is where the personal reckoning begins.

Speaker 5 What was COVID like for you? You had been so isolated when you were going through your first round of treatment. Did you have flashbacks when COVID came and induced isolation again?

Speaker 2 This is going to sound odd, but I loved it. Abstracted, of course,

Speaker 2 from the immense suffering that was happening in the world, that was happening in our world. We lost family members to COVID, but all of it felt familiar to me.
I was like, oh, I know how to do this.

Speaker 2 I know how to hunker down and

Speaker 2 how

Speaker 2 to transform isolation into solitude. I know how to wear my face mask and tote around gallons of hand sanitizer.

Speaker 2 And so in those first couple of days of lockdown, I started to think about what to do with that very, very niche expertise.

Speaker 2 And I decided to share this journaling practice that I'd cultivated in those early days in the hospital when I'd felt deeply isolated. And that became the isolation journals.

Speaker 2 We started with a 100-day project, which is what I'd done that first summer in the hospital with my friends and family.

Speaker 5 And what was your creativity? in that first 100-day project?

Speaker 2 It was journaling. I wasn't well enough to do some grand, ambitious thing.
And so I decided I was going to write in my journal every day.

Speaker 2 Didn't matter how long or short the entry was. Oftentimes it was just a word.
There was no pressure to write beautifully or even grammatically. And the journal is so capacious in that way.

Speaker 2 Part of what makes keeping a daily journal challenging is that you start to circle around the same things over and over and over again.

Speaker 2 And so we invited artists and writers and community leaders to contribute essays followed by a journaling prompt as a starting off point each day.

Speaker 2 Some people interpreted the journal as a visual journal, as a painting journal. Someone kept a wine journal of the wine they drank.

Speaker 5 People who don't know your story probably don't have a sense of just how bad it was. I mean, you had three and a half years in and out of hospitals, teetering on the edge of death.

Speaker 5 Have you read The Fault in Our Stars? It's John Green's book about two

Speaker 5 young people, I think with cancer, who are dying, who fall in love. It's one of my favorite books.
I love John Green. I had him on the show.
He was amazing.

Speaker 2 In those early weeks and months of treatment, before I'd

Speaker 2 made friends with fellow patients, I tried to read every possible illness memoir that I could get my hands on. And I found, especially the cancer narratives, to be the opposite of comforting.

Speaker 2 They were alienating to me in large part because they were written from the perspective often of someone who'd survived, who was many years out of treatment.

Speaker 2 And they followed a kind of hero's journey, this idea that you return from the most brutal, challenging endurance trial of your life, braver and better and stronger and wiser.

Speaker 2 And at the time, the standard chemotherapy treatments weren't working for me. I was going into bone marrow failure.
I had enrolled in a clinical trial that had not yet been proven safe or effective.

Speaker 2 And I knew that there was a very good chance that I would not survive. And so I was really looking for stories of people who were in the trenches of that kind of heightened uncertainty.

Speaker 2 It was during that time that I got my hands on a copy of The Faults in Our Stars. And I think I read it about half a dozen times.
I loved it so much.

Speaker 2 The two young protagonists, both of whom have late stage terminal cancer diagnoses, came to feel like friends to me. I loved that book because it didn't shy away from...

Speaker 2 conversations about death and it also didn't flatten those characters into merely patients.

Speaker 2 They were full people with twisted senses of humor who were worrying about love and dating and mad at their parents.

Speaker 2 And it captured that in-betweenness of young adulthood where you're no longer a little kid, but you're not yet. a fully formed adult and the ways in which illness magnifies that.

Speaker 2 But it's still to this day one of my very favorite books.

Speaker 2 And I think it was an important book for me in ways that I would only begin to realize later when I started trying to write beyond just the journal, because it showed that there was a different way of telling that story that wasn't rinsed, where the third act didn't have to be a happy ending.

Speaker 5 We'll be right back with more of my conversation with Selected Jawad after this short break.

Speaker 5 People I Mostly Admir is sponsored by El Mayor Tequila. Here's the deal.
El Mayor is made with just three ingredients. 100% Blue Weber Agave, water, and heirloom yeast.
That's it.

Speaker 5 No gimmicks, no extras, just tequila made the right way with an award-winning difference you can taste.

Speaker 5 What's even better, you get extraordinary quality, often at half the price of other premium tequilas. You keep it stocked and shared proudly because it's clean, smooth, and always worth the poor.

Speaker 5 Think of it as your house tequila. El Mayor has been handcrafted for four generations and today is led by Grace Gonzalez, the first female master distiller in her family.

Speaker 5 Her latest release, El Mayor Cafe Reposado, takes that same clean tequila and rests it in coffee-seasoned bourbon barrels, adding subtle roasted coffee notes to the smooth agave character.

Speaker 5 It's amazing in espresso martinis and perfect for this time of year. Discover more at elmayor.com and find El Mayor tequila at a retailer near you.
Please enjoy responsibly.

Speaker 5 People in Most Liedmire is sponsored by Mint Mobile. Most holiday gifts end up in a drawer or the back of your closet or accidentally left behind.
Not this one.

Speaker 5 Mint Mobile is offering unlimited premium wireless for $15 a month. That's their best deal of the year, aka the only holiday gift you'll actually use every single day.

Speaker 5 All Mint plans come with high-speed data and unlimited talk and text on the nation's largest 5G network. Don't get them socks.
Get them premium wireless for $15 a month.

Speaker 5 Shop Mint Unlimited Plans at mintmobile.com slash admire. That's mintmobile.com slash admire.

Speaker 5 Limited time offer, upfront payment of $45 for three months, $90 for 6 months, or $180 for 12-month plan required, $15 per month equivalent. Taxes and fees extra, initial plan term only.

Speaker 5 Greater than 35 gigabytes may slow when network is busy. Capable device required, availability, speed, and coverage varies.
See Minvobool.com.

Speaker 7 If you're a smoker or dipper ready to make a change, you really only need one good reason.

Speaker 9 But with Zen nicotine pouches, you'll discover many good reasons.

Speaker 10 Zinn is America's number one nicotine pouch brand.

Speaker 12 Plus, Zen offers a robust rewards program.

Speaker 10 There are lots of options when it comes to nicotine satisfaction, but there's only one Zen.

Speaker 11 Check out Zen.com slash find to find Zinn at a store near you.

Speaker 14 Warning, this product contains nicotine. Nicotine is an addictive chemical.

Speaker 5 You're so open and honest about everything. I'm going to talk about something I've never talked about with anyone before because I'm so embarrassed about it.

Speaker 5 But your honesty is rubbing off on me, I guess. I have a cousin I was really close to growing up.
We lived a block away from each other. I'd see him every week.
And our lives went in different paths.

Speaker 5 But I still have enormous warmth towards him, even though I only see him maybe once a decade and we don't otherwise stay in touch.

Speaker 5 A few years back, he was diagnosed with a rare form of bone marrow cancer. Not exactly leukemia, but same general idea.

Speaker 5 And he was super sick. Eventually, after bone marrow transplant, he's made a full recovery.

Speaker 5 But every day in the middle of this,

Speaker 5 I thought about reaching out to him. And I was like one of those friends that you talked about at the beginning.
I just didn't know what to say. And I never worked.

Speaker 5 up the courage and I've remained really disappointed in myself ever since then.

Speaker 2 I just want to go on record and say that I have done the exact same thing. I know better because I've been on the receiving end of that kind of silence and I know how confusing and hurtful it can be.

Speaker 2 When I finally emerged from treatment four years later, I had lost my friend Melissa. I had watched several of our other close friends die out of the group of 10 young cancer comrades I befriended.

Speaker 2 only three of us were still alive at that point. And my friend Max had a recurrence.
And this time it wasn't going to get better.

Speaker 2 And I loved him so deeply that I could not bear the idea of going through that kind of loss again.

Speaker 2 I felt myself totally immobilized I wasn't reaching out to him. I was avoiding seeing him because I couldn't deal with what was was going to happen.

Speaker 2 I couldn't confront the reality that he was going to die. A few months before he died, we finally got together and I said, I'm so sorry I've been absent.
And he said, I've noticed your absence.

Speaker 2 And is it because the fact that I'm dying makes you afraid? And I said, yes. And we had one of the most powerful conversations I've ever had in my life.

Speaker 2 And I'm so happy I did get to have that conversation with him. It's not that you learn how to be a good friend in crisis and then you're forever that.

Speaker 2 There are many circumstances and reasons that at various points in our lives, beholding something

Speaker 2 difficult just doesn't feel possible.

Speaker 2 also know that it is never too late to have those conversations

Speaker 2 because now having been on both sides of it, the person met with silence, the person meeting another with silence, I've softened my understanding of why we show up and why sometimes we can't.

Speaker 2 And I think once again, the answer is just being honest and vulnerable whenever the time for that conversation comes.

Speaker 5 I wonder if this is your experience also.

Speaker 5 I've had difficult things in my life. My son, Andrew, died.
My sister Linda died. I've been divorced.
And I find it really easy to talk with people who are going through these same bad events.

Speaker 5 But experiences I haven't had, losing a parent, getting diagnosed with cancer, losing one's eyesight, I find it so much harder.

Speaker 5 And I'm surprised how little my ability to talk about hardship generalizes across situations.

Speaker 5 You have more social skills than I do, I think. So maybe it's easier for you.

Speaker 5 But do you find that having been through hard things makes you generally pretty good at talking to people who are struggling with hard things?

Speaker 2 I don't know that I'm innately good at it, but the two things that I've found to be consistently helpful, vulnerability and

Speaker 2 curiosity.

Speaker 2 I've talked to the parents of these friends who died, and they say that it's almost like parents with alive children are afraid to get too close to them, as if somehow that misfortune is contagious.

Speaker 2 And I don't know what your experience of this has been, but I think the greatest joy when you've lost someone is to know that they're remembered, is to be curious, even if you didn't know the person who's no longer longer here, to ask what they were like, to talk about them, because that's what keeps them here.

Speaker 5 That resonates with me 100%. As a father who lost a child, he was young.
He was only one.

Speaker 5 But no one has asked me questions about him in the way you just suggested. And you're absolutely right.
If they did, it would be joyous.

Speaker 5 I think a mistake that people make in general is they think that if you bring up something hard, it will remind the person who has suffered through it.

Speaker 5 But when your son dies, you don't ever forget about that. It's always hanging around in your head.
And I think that's the confusion people have that makes them afraid to ask questions.

Speaker 5 But I mean, look, I know that, and yet I forget it when I talk to other people. Somehow it is just a really hard lesson to keep front of mind.

Speaker 2 Absolutely. I think we're also afraid in asking questions of upsetting someone.
You worry you'll make them cry. Crying is not a bad thing.

Speaker 2 To be vulnerable in another's presence, even if you're feeling sad, even if the tears come, that can be a beautiful thing. It can be a thing that brings you closer to each other.

Speaker 5 Ironically, as you told this story about your friend dancing, I actually did my my version of that with him, although I never told him. I mean, the only thing I'm good at is analyzing data.

Speaker 5 Instead of reaching out to him, I reached out to the organization.

Speaker 5 It was called at the time, Be the Match, and now it's called NMDP, but they help run the matching program, whereby volunteers who are willing to donate bone marrow to people in need of a bone marrow transplant are matched together.

Speaker 5 And I offered them my services pro bono. As you will know, especially for minorities, it's currently extremely difficult to find a good bone marrow match if you don't have a match within the family.

Speaker 5 And you were so lucky that your brother was a match for you and he was willing and able to donate. So I spent the next six months with my team at the University of Chicago.

Speaker 5 We did a lot of work with them, although honestly, I just couldn't convince them to do any of the things that I think would have been. complete game changers.

Speaker 5 The ideas that felt really sensible to me were just way too radical for them.

Speaker 5 Could I bounce some of those ideas off you and get your reactions to how you think they might work and whether they sound reasonable?

Speaker 2 Please. And full disclosure, I just less than a year ago joined the board of an MDP, formerly Be the Match.

Speaker 5 Oh, I didn't know that.

Speaker 2 So I will do my best to relay them.

Speaker 5 So the way the current bone marrow system works, people sign up to be marrow donors, often in response to someone they know needing a transplant.

Speaker 5 So the chances, of course, are really low that you'll be a good match for that particular friend. But you give a blood sample, hoping you will be a match, and then you get entered into the registry.

Speaker 5 And then years later, you might just happen to be a great match for a stranger who needs a transplant. And the donor registry reaches out to you.

Speaker 5 And it's not at all surprising that the vast majority of people who are contacted these many years later, they decline. It's not a trivial sacrifice to be a bone marrow donor.

Speaker 5 Years have gone by, and the person that you had in mind when you joined the registry is not the person you're being asked to help. You're being asked to help a stranger.

Speaker 5 So there are lots of things that you could imagine doing to try to increase the likelihood that someone would say yes when approached these years later.

Speaker 5 And the simplest one, at least for an economist, is to think about paying these bone marrow donors. U.S.
law currently prohibits paying kidney donors, although that may soon change.

Speaker 5 But it doesn't prohibit paying bone marrow donors because bone marrow regenerates it. And my own sense is that for a fair price, maybe $20,000, $30,000,

Speaker 5 a lot more people would be willing to donate bone marrow. And it seems so sensible.
Why in society do we pay people for just about anything that they do except saving a life?

Speaker 5 But the registry wouldn't touch it. And I even offered to put up $100,000 of my own own money to run a little pilot.
I would pay for it. But they said no.

Speaker 2 I'm curious why they said no.

Speaker 5 I think it just seemed risky. Medical ethics has had a pernicious effect in many ways.
Obviously, medical ethics is important, but somehow there is a sense that it is dirty to pay people for things.

Speaker 5 It's wrong. It somehow taints something beautiful, which at least as an economist, I don't feel that.
I feel like you're asking someone to make a sacrifice. We pay people for sacrifices.

Speaker 5 But I think for the people who had to make the decision, it was risky. They risked the wrath of the media saying, oh, this is horrendous.
This is immoral. But what do you think?

Speaker 5 Number one, do you think it would work? And number two, do you think it would cause a firestorm or controversy? Or people say there's nothing wrong with paying people for doing things that are heroic.

Speaker 2 So in general, I love talking about money because much like death, it makes us incredibly uncomfortable. My friend Amit, who had

Speaker 2 a very successful startup in Silicon Valley, was diagnosed with leukemia and

Speaker 2 did not find a donor in the registry. He's Indian American and much like other communities of color that is not well represented in the registry, he wasn't able to find a match.

Speaker 2 And so his friends in Silicon Valley decided independently from any bone marrow registry to raise money. And if and when he found a match, that donor would get that money.

Speaker 2 And it was extraordinarily effective. Something like 15,000 people from the Indian community across the United States rushed to sign up to become a donor.
And he did, in fact, find his donor that way.

Speaker 2 And so that tells me that money is an important motivator, not in some gross, dirty way that taints the fact that in addition to compensation, you are doing an extraordinary thing.

Speaker 2 You are literally saving someone's life. And so, yeah, I do think it's a good idea.
But I think in tandem with that, there needs to be a demystification of what it means to be a donor.

Speaker 2 Because at least for me, when I first got sick and learned that I was going to need a bone marrow transplant, I imagined some medieval torturous process of like excavating all the marrow and all the bones in your body.

Speaker 2 And that is not at all what it is. In most cases, it's no longer...
going under anesthesia and having bone marrow extracted from your hip bone. It's done through stem cells.

Speaker 2 It's essentially a more intense version of giving blood. And I don't want to minimize what that takes, but it's far less intrusive than it was.

Speaker 2 But it's also a disruption to your life. It's taking a couple of days off work, although I believe Be the Match compensates people for whatever costs they incur.

Speaker 2 But I do think that just like compensating anyone

Speaker 2 for their work and their time, there should be the option at the very least of compensation.

Speaker 5 Aaron Ross Powell, when we talk about compensation, though, the important thing to me is that the amount of money you get should be high.

Speaker 5 I think when it feels bad is when you give people just a little bit of money. Say, I'll give you $1,000 to do this.

Speaker 5 That's an amount of money that only maybe would be motivating to people who don't have strong economic means.

Speaker 5 And that starts to feel icky because then it feels like we're going to take advantage of people who are in the lower rungs of the income brackets.

Speaker 5 But I think if you make the price high enough so that it feels really like a gift, I think that takes away a lot of the ethical issues.

Speaker 5 And because these operations are so expensive and because there's a life on the line, it feels right to me that the price can be high.

Speaker 5 It can fit into the economics of the situation, and it's commensurate with the size of the gift.

Speaker 2 Aaron Powell, and the gift then becomes reciprocal.

Speaker 2 Where my practical mind goes is, where does this gift money come from at a time where it's extraordinarily challenging to find funding for clinical trials?

Speaker 2 The cost of a bone marrow transplant, even if you have insurance, is astronomically high because it often requires you to receive it at a major treatment center in a city.

Speaker 2 You have to have a full-time caregiver with you in those early weeks, which means that the person caring for you has to be able to take a leave from their job. And I watched my family go through this.

Speaker 2 We uprooted our lives so that I could get the treatment I needed. The cost of that was high.
The cost of relocation,

Speaker 2 the cost of time, not just my own, but my mother's, who ended up essentially having to step away from her work for the better part of a year and a half.

Speaker 2 And then all the other costs, the co-pays and deductibles. And so where do we find that money?

Speaker 2 How do we justify giving that money when there are so many patients in our country who are having to make impossible decisions between paying rent and buying groceries and receiving life-saving care.

Speaker 5 Yeah, no, that's true.

Speaker 2 I haven't sorted out that. Sorry, I just reined on this beautiful idea, which I very much love.

Speaker 5 Let me try another idea because it's, of course, completely predictable that an economist would talk about money.

Speaker 5 I just imagine myself joining the registry because I know my cousin needs a transplant and I hoped I'd be a match, but I didn't end up being a match.

Speaker 5 Now, years later, a stranger calls me on the phone and says, Hey, would you be willing to do the match? Maybe I do it, maybe I don't.

Speaker 5 But let's just say that Be the Match contacts my cousin who has gotten from a stranger a bone marrow transplant.

Speaker 5 And they say to him, Hey, Steve signed up to be on the registry when you needed a transplant. Now he's a perfect match for someone else.

Speaker 5 How would you feel about calling him up and asking him if he'd be willing to do that?

Speaker 5 I would be so much more likely to do it if the message came from him and I felt like I was essentially paying forward the gift that he had gotten.

Speaker 2 I was recently asked by a friend who had done exactly what you're describing.

Speaker 2 signed up for the registry, hoping they would be a match for that relative or friend, forgot about it, and then was called to be a donor for a perfect stranger. And

Speaker 2 they wrote to me and told me that initially they'd wanted to do it, and then their spouse and children were having concerns about it.

Speaker 2 And they essentially were asking me to convince them to move forward with being a donor for this patient.

Speaker 2 And

Speaker 2 I felt so angry

Speaker 2 in response. I felt angry that it was even a question for them, having watched me go through what I'd gone through, not once, but twice.

Speaker 2 And the second time when I relapsed about two years ago, I was not able to find a donor in the registry. I'm fortunate that I have my brother.
and that he was willing to be my donor.

Speaker 2 It's difficult to convey the sense of desperation and vulnerability that you feel when your life hinges on a stranger's decision.

Speaker 2 And so all of this came flashing up for me when this friend of mine asked me if she could be a donor. And I had to take a few days before I responded.

Speaker 2 Because if I had responded to her right away, I would have picked up the phone and I would have said, this is not a question. You have to do this.

Speaker 2 And I didn't feel that was appropriate to kind of bulldoze her into a decision. So I say this all to say that I guess it depends

Speaker 2 on who the donor recipient is and their ability to have that conversation in a meaningful and hopefully convincing way, but one that's not charged with emotion or with PTSD, because getting a bone marrow transplant is a traumatic experience.

Speaker 2 So let me offer another idea,

Speaker 2 which is if you were called to be a donor and with that came a video message

Speaker 2 from the person hoping for their transplant, how would that make you feel? Would that feel like emotional manipulation? Would it make you feel compelled to do it?

Speaker 2 Because it's no longer just a stranger on the other end. It's a human.
It's a face. It's someone's mother or child or sibling.

Speaker 5 I love that idea. I mean, I'm sure that the people who make those decisions would say,

Speaker 5 we couldn't do that without permission. But making that video and then contacting someone and saying, hey, if you would like to see a video, we'll send it along.

Speaker 5 I think that would have an amazing impact. You also touched on something that I've long felt, but I don't hear mentioned very often, which is that the gift is not just to the recipient.

Speaker 5 It's to the donor. When my son died, he donated his liver to a little girl, and she lived.
She was days away from dying. And I've been able to watch her grow up.
She's in her 20s now.

Speaker 5 That has been an incredible gift. We didn't make the donation of his liver because we thought that it would be good for us.
We just, it felt like it was the right thing to do.

Speaker 5 And I was really surprised at how it has helped transform this awful experience in my life into something which is still incredibly awful, but has a little bit of good.

Speaker 5 There's so much talk about compulsion and about how we have to be careful that no one feels like they have to do this.

Speaker 5 But in some sense, showing people the truth, showing people how sick the person is and how grateful they would be, that doesn't feel like compulsion. That's full information.
So I love your idea.

Speaker 5 Your idea is better than either of my ideas, and I would love to help that happen if there's some way I could be part of that.

Speaker 2 Let's do it. I'm ready.

Speaker 5 You're listening to People I Mostly Admire. I'm Steve Levitt.

Speaker 5 And after this short break, Suleika Jawad and I return to talk about her experience as a subject of an Academy Award-nominated documentary.

Speaker 7 If you're a smoker or dipper ready to make a change, you really only need one good reason.

Speaker 9 But with Zen nicotine pouches, you'll discover many good reasons.

Speaker 10 Zen is America's number one nicotine pouch brand.

Speaker 12 Plus, Zen offers a robust rewards program.

Speaker 10 There are lots of options when it comes to nicotine satisfaction, but there's only one Zen.

Speaker 11 Check out zin.com slash find to find Zen at a store near you.

Speaker 14 Warning, this product contains nicotine. Nicotine is an addictive chemical.

Speaker 15 Bob Evans' creamy mac and cheese and buttery mashed potatoes are made for those holiday moments you just can't plan for. Like when the neighbors burnt their holiday meal and you invited them over.

Speaker 15 Or that time when everyone's flights home were canceled and they stayed an extra two days. So when there is no plan, say hello to Plan BOB.

Speaker 15 When you bring out the bob, you can take comfort this holiday season, knowing you'll always have something delicious on the table no matter what the holidays bring.

Speaker 15 When you need comfort, bring out the bob available now in your refrigerated section.

Speaker 3 Here for the Lowe's early Black Friday deals?

Speaker 4 You're right on time for some of our biggest savings. We're talking up to 50% off select major appliances, plus up to an extra 25% off when you bundle select major appliances.

Speaker 4 Holiday lights going up soon? Select ladders are up to 50% off right now.

Speaker 3 Get Black Friday prices without the Black Friday crowds. Lowe's, we help.

Speaker 4 You save. Valent through 1119.
Selection varies by location. Select locations only.
While supplies last. See Lowe's.com for more details.

Speaker 5 Since she wrote her memoir, Between Two Kingdoms, Suleika's had both a recurrence of cancer and another successful bone marrow transplant.

Speaker 5 This spout with illness was chronicled in the documentary film American Symphony, which also features her husband, musician Jean-Baptiste.

Speaker 5 The documentary is intimate, and I'm curious what it was like to be filmed when she didn't know whether she'd live or die.

Speaker 5 Your second battle with cancer is recounted in the documentary American Symphony, which highly lauded, nominated for an Academy Award.

Speaker 5 Was it an easy decision or a hard decision to agree to be the subject of that documentary?

Speaker 2 A really hard decision. And it wasn't one decision.
It was a decision I had to make every single day of that whole filming process about if I wanted to participate.

Speaker 2 We're fortunate that Matt Heinemann, who directed American Symphony, is a friend. And so there was already that base level of comfort.

Speaker 2 And because I was very sick and because I was going through another bone marrow transplant, it's not like there was some big film crew in the room with me. It was just him.

Speaker 2 And he's really an expert in cinema verite. He was very much a fly on the wall for that experience.
I think he captured in the end something like 1,500 hours of footage.

Speaker 5 My God.

Speaker 2 Film from sunup until we went to sleep. And we would say, good night, Matt.
And then a few minutes later, he'd still be there with the camera and we'd be like, Matt, good night.

Speaker 2 It was invasive.

Speaker 2 And all the ways you can imagine having a camera following you around like that would be invasive, especially when you are going through one of the most difficult passages of your life.

Speaker 2 But we didn't have funding for it. There were no distributors.
It was a private project between

Speaker 2 me and John and Matt. I didn't know if I was going to survive long enough to see whatever the end result of this footage would be.
And honestly, we weren't sure what we wanted it to be.

Speaker 2 John kept saying to me, if the only thing that comes of this is that we have the world's most beautifully shot home videos, then that is a success.

Speaker 5 You'd never spent much time in front of the camera before. Did you get used to it?

Speaker 2 I guess I did in a way. I remember the very first day Matt showed up at our house to film and I had just started chemo and I was wearing sweatpants and I felt awful and I looked awful.

Speaker 2 And my very first instinct was, oh, there's a camera here. Maybe I should make an effort to put on jeans and some blush.
And then I caught myself and thought that defeats the whole purpose.

Speaker 2 I had to get used to

Speaker 2 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

Speaker 2 when someone else is directing.

Speaker 5 Did you feel in the end like it basically portrayed you? I mean, most of life is pretty boring. And I assume out of 1500 hours of footage, just the highlights and the lowlights make the final cut.

Speaker 5 What was it like watching it for the first time?

Speaker 2 I had to watch it alone the first time because it's one thing to live the events of your life and it's another to see yourself on the knife's edge.

Speaker 2 And so it was shocking to me to see just how incredibly sick I was and how close I came to death. And I cried and I cried.
And I think it was the first time I'd really cried.

Speaker 2 since that bone marrow transplant. And it was a necessary

Speaker 2 kind of of catharsis. And I do think it accurately portrayed that period of time in my life.
Although the challenge for me is that I

Speaker 2 am immortalized in this film, not as my everyday self, but as the me in crisis.

Speaker 2 in the belly of the beast.

Speaker 5 One of the things I was jealous of watching the movie is how playful you and John are together. I would love to be playful, but I've forgotten how.

Speaker 5 Is that playfulness for real or somehow is it the effect of editing?

Speaker 2 Oh, no, that playfulness is for real. I actually think if there's one thing that isn't fully represented in the documentary, it's the full extent of that playfulness.

Speaker 2 What he didn't show was our habit of prank calling people. John is a master prank caller, and we have been prank calling people at least once a week, like since we started dating.

Speaker 2 The nurses and the medical staff caught onto this.

Speaker 2 So late at night when we were doing our prank calls, the nurses would come into my room and say, hey, can you prank call my boyfriend or can you prank call my sister or whatever?

Speaker 5 So give me an example.

Speaker 2 I'll give you a transplant related prank call.

Speaker 2 Shortly before my recurrence, maybe this is two years ago, we were having dinner at our friend's house with their family.

Speaker 2 And because everyone knows that John is the master prank caller, what they do is they save up phone numbers that they want to put forth as a possible contender.

Speaker 2 And so someone at dinner said, great news. I have Jonathan Fransen's cell phone number.
The writer Jonathan Franson. And at this point, it's maybe like 10.30, 11 p.m.

Speaker 2 And so we do our star 6, 7 or whatever you do to block your number from being seen on the other side.

Speaker 2 And a woman picks up the phone and John says that he is from the Alabama Football Association in a very strange voice and that he'd like to speak to Jonathan Franzen.

Speaker 2 And much to our surprise, the woman on the other end goes, oh, okay, just one moment now.

Speaker 2 And Jonathan Franzen comes on the phone and John explains that they are looking for kidney donors.

Speaker 2 And would Jonathan Fransen be willing to donate a kidney to the Alabama Football Association?

Speaker 2 And once again, to our surprise, he doesn't hang up. He engages in conversation.
He starts asking questions.

Speaker 2 10 minutes go by until finally Jonathan Franzen says that he's very sorry he won't be donating a kidney because he's partial to the Texas Football Association. And so

Speaker 2 we are all now big Jonathan Fransen fans.

Speaker 5 When Stephen Dubner and I wrote Freakonomics, I was thrust into a world I knew nothing about, the New York publishing scene. And I found it to be really different from my academic world.

Speaker 5 You've experienced that same publishing scene as well, but also through your husband John Batiste, the big-time music scene, and on top of that now, the Hollywood crowd, even attending the Academy Awards.

Speaker 5 What's it like for a normal, seemingly down-to-earth person to be thrust into that?

Speaker 2 You know, the truth is, I have felt like an outsider my entire life.

Speaker 2 I grew up with two parents, not from the United States. I grew up speaking one language at home, another at school.
Like I've always inhabited the in-between places. And

Speaker 2 my survival mechanism back then, when I showed up to kindergarten on the first day of school in upstate New York, not speaking a word of English, and the same survival mechanism I use.

Speaker 2 when entering into these surreal spaces and industries,

Speaker 2 going to things like the Oscars, is that I pretend I'm an anthropologist

Speaker 2 and that everything is interesting and noteworthy. And right away, my imposter syndrome evaporates and that sense of being an outsider no longer feels

Speaker 2 like a failure or a point of discomfort. And I get to wear my reporter's hat and take notes.

Speaker 5 You become an observer and you fit in.

Speaker 2 And I fit in.

Speaker 5 Every once in a while, I have a conversation with someone on this show that I just can't get out of my head. This is one of them.
The things Zuleka said just keep replaying over and over.

Speaker 5 If you liked the episode, I suspect you will love her book, Between Two Kingdoms, and the documentary about her and John Batiste titled American Symphony, which is available on Netflix.

Speaker 5 Zuleka has had two new books come out in this past year. The first is The Book of Alchemy, and the second, The Alchemy Journal.

Speaker 5 Next week, it's a brand new episode featuring my friend and colleague, economist Michael Greenstone.

Speaker 5 He's doing economic research that is more important and policy relevant than just about anybody else I know. As always, thanks for listening, and we'll see you back soon.

Speaker 6 People I Mostly Admire is part of the Freconomics Radio Network, which also includes Freakonomics Radio and the Economics of Everyday Things.

Speaker 6 All our shows are produced by Stitcher and Renbud Radio. This episode was produced by Morgan Levy with help from Lyric Bowditch and mixed by Jasmine Klinger.

Speaker 6 We had research assistance from Daniel Moritz Rabson. Our theme music was composed by Luis Guerra.
We can be reached at Pima at freakonomics.com.

Speaker 2 That's P-I-M-A at freakonomics.com.

Speaker 6 Thanks for listening.

Speaker 2 And I'll also

Speaker 5 go please. Please.
Please. Go ahead.
I was just going to ask you. I was just going to say.
Okay, you know, you go ahead.

Speaker 2 No, no, no, go.

Speaker 6 The Freakonomics Radio Network, the hidden side of everything.

Speaker 1 Stitcher.

Speaker 7 If you're a smoker or dipper ready to make a change, you really only need one good reason.

Speaker 9 But with Zen nicotine pouches, you'll discover many good reasons.

Speaker 10 Zen is America's number one nicotine pouch brand.

Speaker 12 Plus, Zen offers a robust rewards program.

Speaker 10 There are lots of options when it comes to nicotine satisfaction, but there's only one Zen.

Speaker 11 Check out Zen.com slash find to find Zen at a store near you.

Speaker 14 Warning, this product contains nicotine. Nicotine is an addictive chemical.

Speaker 10 When you give gifts, you like to knock them out of the park.

Speaker 16 Airwick Essential Mist Diffuser's chic design, long-lasting scents, and effortless setup makes it the kind of gift that feels complete the moment it's unwrapped.

Speaker 16 Perfect for your favorite dinner party host or that friend who loves a cozy night in.

Speaker 16 Plus, its cordless design means you can easily take this gentle fragrance with you from room to room. Airwick Essential Mist, ready to gift, ready to uplift.

Speaker 17 When cool, creamy ranch meets tangy, bold buffalo, buffalo, the whole is greater than the sum of its sauce. Say howdy, partner, to new Buffalo Ranch Sauce only at McDonald's for a limited time.

Speaker 14 At participating McDonald's.