Suleika Jaouad’s Survival Mechanisms

My guest today, Suleika Jaouad 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. 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. 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 have ever read.

JAOUAD: If you’re lucky enough to be cured, then the expectation is that you’re done. You go back to your life. You move on, hopefully with gratitude and some wisdom. And that wasn’t true for me.

Welcome to People I (Mostly) Admire, with Steve Levitt.

Suleika 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.

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LEVITT: Cancer has stolen so much from you. I just want to acknowledge that up front and say I’m so sorry that you’ve had to endure so much. 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. It is such a wonderful gift for the millions of people who’ve read your writing.

JAOUAD: 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 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. 

LEVITT: 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. And also, of course, there’s the Academy Award-nominated documentary, American Symphony. So my first exposure to you was Between Two Kingdoms. 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. So that very much affected how I experienced the book, and I couldn’t help but compare you to my daughters. Your book starts before your cancer diagnosis. You begin to feel exhausted. You have horrible itchy rashes and terrible sores in your mouth. And somehow you just persevere through these for months or years. If my daughters had one twentieth of those symptoms, they would have been completely debilitated. 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. What do you think of that argument?

JAOUAD: 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, 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. 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 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, 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. For so many people, the struggle does not begin with a diagnosis; 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. And that’s the thing. Illness is a breach of contract with the natural order of things when you’re 22. I did feel deeply disconcerted. I went back and reread some of my journal entries from that time and over and over again I’m saying things like, “Something is wrong with me.” 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.

LEVITT: 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.

JAOUAD: 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. And very shortly after, 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.

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

JAOUAD: 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. And I, 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. 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. I often tell people now that if they don’t know what to say, to start by saying exactly that; tell the truth of your inability to find the perfect words because the perfect words do not exist. And 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.” And the second is to 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. If you love to dance, then do what my friend Behida did, which was call me one day while I was in the hospital and say, “Look down at the street.” And when I looked down, she was in the middle of the sidewalk doing this wild shuffling dance and these pirouettes. And people were stopping. They were laughing. I was laughing. And her little sidewalk choreography lasted two minutes and that was it. 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, sustained me and gave me so much joy and made that sense of isolation immediately dissipate.

LEVITT: 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. He said that his experience is the single most important thing in these tough conversations is to just be authentic. 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, “Boy, you look awful,” or, “I’m really scared you won’t make it”?

JAOUAD: In a way I almost wish they had. My experience was the opposite. 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.” 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 — 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. 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. I wanted to talk about the isolation. I wanted to talk about my very real fear of death. 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. And what happens when we don’t allow for those authentic conversations is a kind of sundering. There’s the you that you have to become. In my mind, it was always this kind of wan leukemic starlet who was graceful and selfless and brave. 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. And then there’s the private you, the one that isn’t as palatable in conversation. And that can put you in a dissociative state. 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. 

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

JAOUAD: 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. I was determined to stay the same person I’d been, which I quickly learned was a futile effort. Because of the nature of my illness, I spent a lot of time those early weeks in medical isolation because the germ risk was too high. And this was in 2012. 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 those early conversations where I could write into 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. Later, I befriended a group of young cancer patients — we called ourselves the cancer crew — and they were all people in their twenties and thirties, who I felt like I would have been friends with pre-diagnosis. One was the poet Max Ritvo, the other, the painter Melissa Carroll, both of whom are no longer here. But we could talk about illness. We could share our side effects. We could talk about the relational aspect of illness. Nothing was off limits. I remember sitting around in the living room of my apartment with a group of four young women I’d met in treatment and we started talking about the thing that you might expect a group of young women to talk about, which was dating and boys. And someone mentioned hot flashes and someone mentioned pain during sex 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. 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-twenties. But the reason I mentioned Melissa and Max is because those friendships became important, not only in navigating the illness, but in figuring out what to do with it creatively.

LEVITT: 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. It’s a sad book about cancer.” But I didn’t cry at any of the sad parts. 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. And I would say that is a sign that you’re an amazing writer.

JAOUAD: Thank you for saying that. 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. I had a lot of insecurity around essentially starting my writing career by writing about my illness. I worried about being boxed into that identity 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 that the mere facts of a bodily drama do not make for compelling reading material. It’s the shape you give to those facts. It’s how you render them in scene and the structure you choose to contain them.

LEVITT: 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. But the way you describe it, that’s really just the beginning. That really caught you off guard, right?

JAOUAD: Yeah. The goal is to be cured. And if you’re lucky enough to be cured, then the expectation is that you’re done. 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. 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. I felt a deep sense of shame in the aftermath of treatment. I felt like I should be living this full, meaningful life. 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. 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 get interested in stories of aftermaths, what happens after the calamitous event. And that is where the personal reckoning begins.

LEVITT: 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?

JAOUAD: This is going to sound odd, but I loved it. Abstracted, of course, 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. I know how to hunker down and how to transform isolation into solitude. I know how to wear my face mask and tote around gallons of hand sanitizer.” And so, in those first couple of days of lockdown, I started to think about what to do with that very, very niche expertise. 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. We started with a 100-day project, which was what I’d done that first summer in the hospital with my friends and family.

LEVITT: And what was your creativity in that first 100-day project?

JAOUAD: 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. 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. 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. 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. Some people interpreted the journal as a visual journal, as a painting journal; someone kept a wine journal of the wine they drink

LEVITT: 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. Have you read The Fault In Our Stars? It’s John Green’s book about two young people — I think with cancer, but 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.

JAOUAD: In those early weeks and months of treatment, before I’d 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. 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. 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. 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. 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. It was during that time that I got my hands on a copy of The Fault in Our Stars. And I think I read it about half a dozen times. I loved it so much. 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 conversations about death. And it also didn’t flatten those characters into merely patients. They were full people with twisted senses of humor who were worrying about love and dating and mad at their parents. 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. It’s still, to this day, one of my very favorite books. 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. 

We’ll be right back with more of my conversation with Suleika Jaouad after this short break.

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LEVITT: 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, 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, 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. A few years back, he was diagnosed with a rare form of bone marrow cancer. Not exactly leukemia, but same general idea. And he was super sick. Eventually, after a bone marrow transplant, he’s made a full recovery. But every day in the middle of this, 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 up the courage. And I’ve remained really disappointed in myself ever since then.  

JAOUAD: 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. 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 ten young cancer comrades I befriended, 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. And I loved him so deeply that I could not bear the idea of going through that kind of loss again. 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 going to happen. 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. 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 it in my life. 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. There are many circumstances a nd reasons that, at various points in our lives, beholding something difficult just doesn’t feel possible. I also know that it is never too late to have those conversations 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. And I think once again, the answer is just being honest and vulnerable, whenever the time for that conversation comes.

LEVITT: I wonder if this is your experience also. 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. But experiences I haven’t had — losing a parent, getting diagnosed with cancer, losing one’s eyesight — I find it so much harder. And I’m surprised how little my ability to talk about hardship generalizes across situations. You have more social skills than I do, I think, so maybe it’s easier for you. 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?

JAOUAD: 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 curiosity. 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. 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 here, to ask what they were like, to talk about them, because that’s what keeps them here.

LEVITT: That resonates with me a hundred percent as a father who lost a child. He was young, he was only one. 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. 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. 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. 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.

JAOUAD: 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. 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.

LEVITT: Ironically, as you told the story about your friend dancing, I actually did my version of that with him, although I never told him. I mean, the only thing I’m good at is analyzing data. Instead of reaching out to him, I reached out to the organization — it was called, at the time, Be the Match, and now it’s called N.M.D.P., 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. And I offered them my services pro bono. As you well 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. 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. 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. The ideas that felt really sensible to me were just way too radical for them. 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?

JAOUAD: Please! And full disclosure, I just, less than a year ago, joined the board of N.M.D.P., formerly Be The Match. 

LEVITT: Oh, I didn’t know that!  

JAOUAD: So I will do my best to relay them.

LEVITT: 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. 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. 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. 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. 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. 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. Okay. 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. But it doesn’t prohibit paying bone marrow donors because bone marrow regenerates. And my own sense is that for a fair price, maybe $20,000, $30,000, 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? But the registry wouldn’t touch it. And I even offered to put up $100,000 of my own money to run a little pilot. I would pay for it. But they said no.

JAOUAD: I’m curious why they said no.

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

JAOUAD: So, in general I love talking about money because, much like death, it makes us incredibly uncomfortable. My friend Amit, who had a very successful startup in Silicon Valley, was diagnosed with leukemia and 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. 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. 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. 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. 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, 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 in all the bones in your body. 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. 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. 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. But I do think that just like compensating anyone for their work and their time, there should be the option at the very least of compensation.

LEVITT: When we talk about compensation, though, the important thing to me is that the amount of money you get should be high. I think where it feels bad is when you give people just a little bit of money. Say, “I’ll give you a thousand dollars to do this.” That’s an amount of money that only maybe would be motivating to people who don’t have strong economic means. And that starts to feel icky because then it feels like we’re going to take advantage of people who are in the lower end rungs of the income brackets. 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. 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. It can fit into the economics of the situation and it’s commensurate with the size of the gift.

JAOUAD: And the gift then becomes reciprocal. 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? 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. 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. We uprooted our lives so that I could get the treatment I needed. The cost of that was high: the cost of relocation; 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. And then all the other costs — the copays and deductibles. And so, where do we find that money? 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?

LEVITT: Yeah, no, that’s true. I haven’t sorted out that part.

JAOUAD: Sorry, I just rained on this beautiful idea, which I very much love.

LEVITT: Let me try another idea. ‘Cause it’s, of course, completely predictable that an economist would talk about money. But 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. Now, years later, a stranger calls me on the phone and says, “Hey, would you be willing to do the match?” Maybe I’d do it, maybe I don’t. But let’s just say that Be the Match contacts my cousin who has gotten from a stranger a bone marrow transplant, 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. How would you feel about calling him up and asking him if he’d be willing to do that?” 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.

JAOUAD: I was recently asked by a friend who had done exactly what you’re describing: 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 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. And they essentially were asking me to convince them to move forward with being a donor for this patient. And I felt so angry 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, 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. It’s difficult to convey the sense of desperation and vulnerability that you feel when your life hinges on a stranger’s decision. 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 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.” 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 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 P.T.S.D. Because getting a bone marrow transplant is a traumatic experience. So let me offer another idea, which is 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? Would it make you feel compelled to do it 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.

LEVITT: I love that idea. I mean, I’m sure that the people who make those decisions would say 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,” 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; 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, and 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. 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. 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. 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. 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.

JAOUAD: Let’s do it. I’m ready.

You’re listening to People I (Mostly) Admire with Steve Levitt and his conversation with Suleika Jaouad. After this short break, they’ll return to talk about what it’s like to be the subject of an Academy Award nominated documentary.

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Since she wrote her memoir, Between Two Kingdoms, Suleika has had both a recurrence of cancer and another successful bone marrow transplant. This bout with illness was chronicled in the documentary film American Symphony, which also features her husband, musician Jon Batiste. 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.

LEVITT: Your second battle with cancer is recounted in the documentary American Symphony, which — highly lauded, nominated for an Academy Award. Was it an easy decision or a hard decision to agree to be the subject of that documentary?

JAOUAD: 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. We’re fortunate that Matt Heineman, who directed American Symphony, is a friend, and so there was already that base level of comfort. 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. And he’s really an expert in cinema verite. So 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. He would film from sun up 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.” It was invasive in 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. But we didn’t have funding for it. There were no distributors. It was a private project between me and Jon 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. Jon 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.

LEVITT: You’d never spent much time in front of the camera before. Did you get used to it?

JAOUAD: 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. 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. 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.

LEVITT: Did you feel in the end like it faithfully portrayed you? I mean, most of life is pretty boring, and I assume out of 1,500 hours of footage, just the highlights and the lowlights make the final cut. What was it like watching it for the first time?

JAOUAD: 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. 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 since that bone marrow transplant and it was a necessary kind of catharsis. And I do think it accurately portrayed that period of time in my life. Although the challenge for me is that I am immortalized in this film not as my everyday self, but as the me in crisis, in the belly of the beast.

LEVITT: One of the things I was jealous of watching the movie is how playful you and Jon are together. I would love to be playful, but I’ve forgotten how. Is that playfulness for real, or somehow is it the effect of editing?

JAOUAD: Oh no, that playfulness is for real. I actually think if there’s one thing that isn’t fully represented in the documentary is the full extent of that playfulness. What he didn’t show was our habit of prank calling people. Jon is a master prank caller and we have been prank calling people at least once a week, like since we started dating. The nurses and the medical staff caught on to this, 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?”

LEVITT: So give me an example.

JAOUAD: I’ll give you a transplant-related prank call. Shortly before my reoccurrence, maybe this is two years ago, we were having dinner at our friend’s house with their family. And because everyone knows that Jon is the master prank caller, what they do is they save up phone numbers that they want to put forth as a possible contender. And so someone at dinner said, “Great news, I have Jonathan Franzen’s cell phone number.” The writer — Jonathan Franzen. And at this point, it’s maybe like 10:30, 11 p.m. And so we do our star-six-seven, or whatever you do to block your number from being seen on the other side. And a woman picks up the phone, and Jon says that he is from the Alabama Football Association, in a very strange voice, and that he’d like to speak to Jonathan Franzen. And much to our surprise, the woman on the other end goes, “Oh! Okay, just one moment now.” And Jonathan Franzen comes on the phone. And Jon explains that they are looking for kidney donors, and would Jonathan Franzen be willing to donate a kidney to the Alabama Football Association? And once again, to our surprise, he doesn’t hang up. He engages in conversation. He starts asking questions. And 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, we are all now big Jonathan Franzen fans.

LEVITT: When Steven 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. You’ve experienced that same publishing scene as well, but also through your husband Jon Batiste, the big-time music scene, and on top of that now, the Hollywood crowd — even attending the Academy Awards. What’s it like for a normal, seemingly down to earth person to be thrust into that?

JAOUAD: You know, the truth is I have felt like an outsider my entire life. 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 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 when entering into these surreal spaces and industries, going to things like the Oscars, is that I pretend I’m an anthropologist and that everything is interesting and noteworthy. And right away, my imposter syndrome evaporates. And that sense of being an outsider no longer feels like a failure or a point of discomfort. And I get to wear my reporter’s hat and take notes.

LEVITT: You become an observer and you fit in.

JAOUAD: And I fit in.

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 Suleika said just keep replaying over and over. If you liked the episode, I suspect you will love her book Between Two Kingdoms and the documentary about her and Jon Batiste entitled American Symphony, which is available on Netflix.

LEVITT: This is the point in the show where I invite my producer Morgan on and we take a listener question.

LEVEY: Hi, Steve. A listener named Naila sent us an email, and Naila was listening to a past episode with Sendhil Mullinathan. And in that episode, Sendhil talks about the value of play. This also comes up in your conversation with Suleika. So Naila wants to use her free time valuably. She wants to use it for play, but she’s wondering exactly what constitutes play. She’s feeling this tension where she wants to do things that are more mindless, like watching TV, but feels that instead she should be doing things that are more intellectually stimulating, like reading a book about science when she works in a different field. What do you think Sendhil was talking about when he talked about the value of play?

LEVITT: Well, I’ll start by saying, I don’t think there are too many people who would classify reading science books as play. I’m glad you asked what Sendhil thinks instead of what I think, because as we say over and over, I’m really bad at play and my best efforts to get better haven’t really led to anything. His view is that play is supposed to be fun, it’s active, it’s broadening, it’s new; it’s an exposure to a set of things which both rejuvenates you and offers different perspectives on the things you think about all the time. The last time I talked to Sendhil, he was obsessed with his virtual reality headset. He said there’s nothing he enjoyed more than playing — I forget the name of the game, but the game where you cut up the fruit?

LEVEY: It’s called Fruit Ninja.

LEVITT: Yeah, Fruit Ninja. He said there’s nothing more satisfying than slicing up these virtual fruits with his virtual sword.

LEVEY: So you have talked extensively on this show about your love of golf. And I’m wondering why golf for you does not constitute play, when for so many other people that’s exactly what it is.

LEVITT: Yeah, I just don’t play golf, I treat golf like a concert pianist treats playing the piano. Now it makes sense when you are a professional and when it’s your life and a mistake matters, but when you’re not very good like I was it makes no sense. I’m glad that I play golf, but it doesn’t classify as play because it’s not playful. It’s businesslike. 

LEVEY: Could there be something about play that has to do with an activity that you do where there’s not an end goal or some accomplishment to meet? With golf you had the goal of getting on the senior tour. You were obsessive about your handicap. Could it be that if people just go out to enjoy being outside with friends — maybe hitting a wild shot that they can talk about after, that it’s more achieving the play idea?

LEVITT: I think you’re exactly right, Morgan. One of the elements which is often there in play, which isn’t there in work, is that it doesn’t matter what happens. The sign that you’re a good player is that you love the things while you do them but you manage to keep them as games rather than elevating them to part of your identity.

LEVEY: It needs to be a realm where you are using your brain, and you’re stimulating your mind, but you don’t have to take yourself so seriously. So you maybe are learning a new skill, but it doesn’t matter if you’re bad at it. You’re just trying it for the sake of the experience.

LEVITT: My wife, in contrast to me, is really good at playing. She’s tried Indian singing. She’s tried kite surfing. She’s tried improvisational comedy. And her hallmark is, she does these things, and she’s not very good at them, And then she’s happy and she stops.

LEVEY: Well, in the conversation you just had with Suleika, she talks about how playful her husband Jon Batiste is and it sounds like, as a result, they’re really playful together. Since your wife Suzanne is so good at playing, you should get her to teach you how to be bad at things and just enjoy them.

LEVITT: My own mental makeup is such that I don’t mind being bad at things. And I don’t mind being good at things, but I’m really uncomfortable with being about average. ‘Cause as soon as I think I’m okay at this, my mind immediately goes to, “Wait, if I’m okay, maybe I could actually be good!” And then I’m done.

LEVEY: Maybe you could actually be great!

LEVITT: The one time in my life I’ve been really playful it was early on in my relationship with Suzanne, you know what happened? We had kids. We had three kids. Forget about play. It’s interesting because you would think that kids, because they are all about play, would bring out play. But my own experience is that kids are the worst play killers that ever existed.

LEVEY: Oh, wow. All right, listeners, if you have children, best of luck finding play in your life. If you have a question for us our email is PIMA@Freakonomics.com. That’s P-I-M-A@Freakonomics. com. If you have a question for Suleika, we would be happy to bring her your question and have her answer it in a future listener question segment. Again, we can be reached at PIMA@Freakonomics.com. That’s P-I-M-A@Freakonomics. com. We read every email that’s sent and we look forward to reading yours.

Talking to Suleika about the book The Fault in Our Stars put me in the mood to revisit the conversation I had a few years back with the author of that book, John Green. It’s one of my all time favorite episodes, and we’ll be airing it as a bonus episode next week. And in two weeks, we have a brand new episode featuring Harvard psychologist Ellen Langer. She is one of the earliest people to research mindfulness, and the experiments she has run have generated some of the most stunning findings I have ever seen.

LANGER: And when I get the results, I’m going to mail them to you right away so you can say, “Can’t be!”

Thanks, as always for listening and we’ll see you back soon.

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People I (Mostly) Admire is part of the Freakonomics Radio Network, which also includes Freakonomics Radio, No Stupid Questions, and The Economics of Everyday Things. All our shows are produced by Stitcher and Renbud Radio. This episode was produced by Morgan Levey with help from Lyric Bowditch, and mixed by Jasmin Klinger.  We had research assistance from Daniel Moritz-Rabson. Our theme music was composed by Luis Guerra. We can be reached at pima@freakonomics.com, that’s P-I-M-A@freakonomics.com. Thanks for listening.

LEVITT: Yeah. 

JAOUAD: And also just… 

LEVITT: I think when it comes to prices… 

JAOUAD: Oh, no. Sorry. 

LEVITT: Go, please. 

JAOUAD: Please.

LEVITT: Please. Go ahead.

JAOUAD: I was just going to ask… 

LEVITT: Um, I was just going to say… 

JAOUAD: Uh… 

LEVITT: Okay, you go ahead, sorry. 

JAOUAD: No, no… no, no, no. Go.