Suleika Jaouad

Kate Bowler: I’m Kate Bowler and this is Everything Happens. This summer we’re re-airing episodes from our show that make me so happy, that bring me joy, or in this case, so much comfort. There’s always the part of the conversation where you start apologizing, have you noticed that? You’re like, oh, thanks so much for listening for so long, or I’m sorry, I know this is a lot, or, I shouldn’t be telling you all this, it’s so depressing. But you needed someone to listen. Someone to sit close as the story unspools. Someone where you can just say, I didn’t want my life to be this way, or I don’t know how I’m going to move forward, I’m so scared. But now it seems embarrassing. Isolating. Costly. I was sitting on the couch with one of my best friends a couple of years ago, who was really sick after a sudden cancer diagnosis. She was struggling through treatment that leaves her too thin, to sallow, and struggling to get out of bed. She lost all of her thick mermaid hair and her small head was covered in fuzzy patches. And she’s powering through with all of her tiny might. But this disease does not care how hard she works. She tries to change the subject, not for her, but for me. Cancer is a living death, and she wants to spare me. And I can see it in her giant Disney eyes. And she is starting to believe that it’s too much, that she is too much, that she is the bad thing. Back in 2020, I spoke to writer Suleika Jaouad about that feeling. One we both know really well. At 22 years old, Suleika was diagnosed with leukemia. She endured year after year after year of intense chemotherapy and a brutal and isolating bone marrow transplant. Out of that experience, she wrote a gorgeous memoir about her experience living between the world of the sick and the world of the well. And it was an instant bestseller. It’s called Between Two Kingdoms, and if you haven’t read it, you must—Suleika is our people. When we had that conversation, she was kind of in “the good place.” But since, Suleika has had to go back into the world of the sick, she has endured another round of treatment for leukemia. She has known isolation. She has struggled against fear, but she has also known so much happiness. She married the insanely talented John Batiste, and together they produced a documentary called American Symphony about his musical career, her illness, and the ways they move together in creativity and in love. It is on Netflix and you really have to watch it. It’s so gorgeous. So that’s our conversation today. We’re going to talk about the toll that illness takes on those around us. And then the boomerang effect that that has on our own suffering. That kind of weird tension where we want so badly for the people we love to support us, but we also want to shield them from the pain at the same time. This is a beautiful, terrible kind of love. So without further ado, the wonderful, the thoughtful, Suleika.

Kate: You write with such gorgeous candor about the ugly feelings around feeling robbed, feeling like you want to be someone who’s easy to love, easy to care for, and then feeling tremendous resentment and fear and frustration, especially inside of a relationship in which a boyfriend then becomes a caregiver. I don’t hear a lot of wonderfully… like the unromantic parts of that. And so I’m, I’m just so glad that you’re honest about that, because we have a lot of beautiful caregivers in this, who listen to this podcast, and I think there’s so much pressure for for both parties to feel like there is, there is a hallmark version of that dynamic, and you’re really clear that, like, there is there is always a lot going on in that dyad.

Suleika Jaouad: Yeah, I don’t think there is ever a hallmark version of any of life. And, you know, we all feel that pressure and this kind of Instagram world where we’re made to feel like we have to kind of put forth our most beautiful, shiny, curated moments. And I think the same is true when you’re writing a memoir, it’s hard to go to those places, even if that’s what you set out to do. Which is exactly what I did. And the reason that felt important to me is that, you know, there’s so many things about illness that feel profoundly isolating and lonely. But for me, the things that made me feel especially lonely were those aspects of illness that aren’t palatable, that aren’t what you thought they would be, that feel unsavory or ugly or shameful. And to me, shame is like the most isolating state any of us can exist in. And I wanted to give ink to those things. To show, you know, those beautiful moments that can arise when you’re in the midst of a reckoning, but also to show the way that it can fracture relationships, the incredible burdens and stressors that it can place on our psyches, on our bodies, on our friendships, on our loved ones, and to kind of really show all of it. And I had this post-it note above my desk when I was writing the book and it said, “Do you want to write a good book? Write what you don’t want others to know about you.” And then it said, “If you want to write a great book, write what you don’t want to know about yourself.”.

Kate: Oof. This is so good. Ugh. Yeah.

Suleika: And I don’t know about you, but my first drafts are always full of lies.

Kate: Oh, totally. Yeah. I’m like, very, I’m very knowing, you know. I’m just very wise.

Suleika: Yeah, you’re a sage on the mountain top.

Kate: It’s so weird, but people just come to ask me for advice, and that’s what that book is for, is just to show them the way. I found it the hardest to write about the incredible resentment that I felt after it wasn’t a crisis anymore and that I the, the, the ugliness of just trying to survive and feeling like everybody else was living on another planet or yeah, didn’t understand the isolation and the frustration and feeling trapped inside of the gratitude script that you describe. I mean, I locked myself into that pretty comprehensively because I am, I am very good at lying about being happy—that is my song about that. But I was really mad, and I was really hurt about people’s wanting to move on when I, when I couldn’t.

Suleika: I so get that, you know, there’s this way in which we can survive anything as long as we can see the horizon. And I’ve done a lot of reporting and in correctional settings and prison settings, and when you literally can’t see the horizon from your cell or from your window, that’s when things become unbearable. And I think the same is true of chronic illness or incurable cancers, or for me, you know, this experience of having the goalposts continuously moving, another year of chemo, another year of chemo, another year. And it’s one thing when we know, all right, we all have to buckle down and get through these next three months. But when there’s that sense of ongoing-ness, it’s difficult to know how to wade through all of that alone and especially with other people. I started to kind of observe the different stages of patient-hood. And like the first week after a patient was diagnosed, and this was true for me, too, you know, everyone is there, everyone’s texting, hod did your doctor’s appointments, go, you know, there are flowers, your whole family goes with you to your appointment. And then over the months, you know, that’s no longer sustainable. And when you’re someone who’s been sick for years, right, you don’t have the cavalry surrounding you in the same way. But the irony is that at least for me, you know, those years, you know, being two years out or three years out, those were my hardest moments. And when I needed that support most, there was also the sense of, the emergency of illness being normalized. And so it’s difficult for me always to know what was a true emergency versus just a regular, every week emergency in my world?

Kate: Totally. I remember having problems like when I called the hospital with what the symptoms were and they said, well, you either have severe diarrhea or your colon has been perforated and you’ll die in your sleep. And I remember being like, I’m tired. I think I’ll go to sleep. I’ve already been to the hospital today.

Suleika: Oh my God.

Kate: Like it does, like I, yeah, have the feeling of a what a what is an emergency becomes a little bit more of a philosophical question.

Suleika: It does. And I don’t know about you, but, and I still feel this. And I think my friends and family would be sad to hear me say this, but I sometimes feel like I’ve used up so many hours with my emergencies that I don’t always know or feel like I can call upon them unless it’s really life or death, unless I am in the ICU, you know? And I’m kind of exaggerating.

Kate: But yeah, the feeling like you’re spending out. I totally understand that. Yeah, yeah. And then you need, want, in the economy of care, then you’d want more time to build up the currency before you spend out again.

Suleika: That’s right.

Kate: But that’s never how life works. And then you’re just, you feel like you’re in bankruptcy.

Kate: We’re going to take a quick break. We’ll be right back.

Kate: I know it’s like a really weird thing to do, to be like, hey Suleika, can I read you something funny I wrote about?

Suleika: Please!

Kate: I was just writing about this feeling and, where people have already, like, assimilated the information of you being sick and they do really care about you, but that’s not the same thing as them experiencing it as, like, urgent in the same way. So I wrote, “It’s a strange fact that sometimes the people who love you most will be among the first to stop worrying about you. An inflexible optimism stands as a barrier between you. You will be fine. Anything to the contrary seems too difficult to communicate. Pain is simultaneously intimate and distant, intense and boring. And according to my rough calculations, any news, no matter how terrible, seems like old hat after about three months. Your legs spontaneously exploded? The polar bears are unionizing now. Oh, I heard that already.”

Suleika: And I felt every every word of that in my marrow.

Kate: Yeah. We live in these economies of love, and we want so much to be the kind of person who can give back and who can be that reciprocal friend, and, you know, all those things, but. Especially when life is costing you so much, It’s hard when you don’t get to take a break. You know you’re trapped in that body, in that bed, and, and you don’t want it to cost them anything. But simultaneously, you can’t live without them being there. You describe that so beautifully. I cried my way through those chapters. It was so real.

Suleika: Well, and I think, you know, that sense of bankruptcy, it’s such a confusing state to live in. There is a sense then and still now that I have that, like whenever I’m well enough, whenever I have the energy, I have to be of service because I have been the recipient of so much care, so much time, so much attention, which I think is like, you know, an attempt to to right the balances. But it’s also been taken to an extreme, an unhealthy kind of state to exist. And it certainly makes it difficult to set boundaries, or to say, now, yeah, that’s really something I’ve, I’ve struggled to figure out, especially, you know, as I’ve regained some of my health and I wonder how you navigate that or if you feel that.

Kate: Oh, I totally do that giant pendulum swing between guilt to overcompensation. And for a while, it was mostly that I felt like I needed to maintain the relationship by being a professional updater. You know, like, because I was so grateful for their care, I felt like I sort of compensation-owed them a lot of information. And that just became a weird way of knowing somebody.

Suleika: Yeah. Yeah.

Kate: Because, and then it’s eclipsing, right? And then you know, what is your hopefully a smaller and smaller part of your life becomes an identity. I don’t know how you feel, like part of managing the intensity of life became having a smaller inner circle, where there was more intense mutuality, I guess. And then, and then more people you could enjoy. But then kind of like a distant outer circle, if that makes sense?

Suleika: Yeah. I mean, I experienced that certainly in my friend group, but kind of in every area of my life, not narrowing of my interests, but I guess a clarifying of them. You know, I remember like long stretches of time where I had the energy to maybe do three things a day. Like, answer an email. Eat. You know, watch an episode of whatever it was. And there was a weird kind of centering and clarifying power that came with that when I knew I could only do three things, and I had to get very specific about what I wanted to do or who I wanted to spend time with. And I think about that now. Now that I have more than three things, sometimes I kind of use it as like almost a thought exercise in the morning where I think to myself if there were three things that I could do today, what would feel most meaningful, most important to me, most satiating and nourishing.

Kate: Don’t go anywhere. We’ll be right back.

Suleika: How have you been like wading through that resentment or making sense of that, if at all?

Kate: No, totally. Because I think when you said that the that the years 2 or 3 after the illness were harder than that first year, that really resonated with me. I was very surprised to to almost feel the aftershock of that be to feel as strong as the, as the initial diagnosis. So I think I was a little, I was thrown off course by how like, why am I why am I more upset about this now, than… Why is this changing my relationships more now than I did before? And, part of it has been trying to accept that some people just can’t or won’t get it. Because fundamentally, because they can’t accept their own contingency, is my trying not to be judgmental, but very honest appraisal is there are just people, they live in a different world and I love them. And I wish that we lived on the same planet, but we don’t anymore. And I feel like I can participate in their lives, in their every in the everyday ness of their life. But there’s like a big ontological divide. I don’t know, and I’ve been kind of grieving that. I guess there are people who really know their before and afters. There are people who are reallyc careful with their hope. And then there are people who are wildly sloppy and I am happy for them sometimes. Most of the time, not all the time.

Suleika: Yeah, yeah. I mean, I think. These experiences have a way of dividing our world view into two camps: those who get it and those who don’t. And when you’re in the camp of those who get it, like you have this shared understanding that when the ceiling caves in on you, you no longer have the privilege of assuming structural stability here forever. From that point forward, going to be living along those lines. But I think, you know, one thing for me that I’ve kind of softened to is how people respond, how they show up or don’t show up. I used to also think that humans fall into two camps, like those who showed up in moments of crisis and those who didn’t, and the ones who didn’t, I didn’t want in my life. And I had this really humbling experience, with my friend Max Revelle, an incredible poet who I met in treatment. And we were part of a whole little friend group of, you know, people in their 20s and 30s. We’re all being treated at the same hospital, and we had a buddy system, and we would hang out all the time. And it was just like such a beautiful crew. And by the time I finished treatment, nearly four years later, only three of us of ten of us were still alive. And a couple months after I finished treatment, while I was on this road trip that I took when I was recovering from all that, I got an email from my friend Max saying that his cancer was back, that there were no treatment possibilities, and essentially that he was going to die. And I knew in that moment what the right thing to do was. I knew I should write to him. I knew, you know, at that point, I had sent musical telegrams and care packages and helped plan memorials and really prided myself on being the person who shows up and who has a good friend in difficult moments, and I couldn’t do it. I had experienced so much loss, and I couldn’t bear the thought of losing him, too. And I couldn’t bring myself to write him an email. And a day passed. And then a couple of days, and then a week and two weeks. And it was horrifying. Because I’d been on the receiving end of that silence before. I know what a cruelty it is to be met with silence by someone who you expect to be the first to say, I love you, I’m here. Let me walk your dog. I’m dropping off food, whatever it is. And I think what that taught me is that, you know, there are certain people who don’t show up because they’re just a shitty friend, and you don’t need them in your life. But then there are times when someone can’t show up, but not because they don’t want to. With like, every fiber in their being, but because they’re dealing with something that makes it difficult for them to be there for you in the way that they want to be. And it was such a sobering experience for me to be that person. And, you know, we did end up reconnecting, and he didn’t let me off the hook very easily, it was not his style. And I, you know, did get to be there for him in the end. But yeah, I think it that has kind of shown me. That there’s a kind of murkier middle ground.

Kate: Yeah. The perfect word for imagining what that needs is just, is grace. I guess grace for them, that there is, like, some kind of space there. There’s some kind of conflicting thing that just obstructs love, but that there’s still enough love.

Suleika: Yeah. The other word that keeps coming up for me is mercy. I mean, I actually don’t know what the definition of mercy is, but it feels like a cousin of forgiveness. Yeah.

Kate: I think I struggle with that sometimes because I. Every time I want it to say that that wasn’t enough and that it hurt, and that it—I would always hear, everyone’s trying their best. And then I always felt a kind of a blanket argument for a whole lot of variables that that person can’t possibly know. Maybe, maybe Lindsay isn’t doing her best. Maybe we don’t know that about Lindsay right now, because, you know, it’s just something we say about strangers. But simultaneously, I do, I do always want there to be like a bigger economy of love, always happening where maybe we can’t always be there for each other, but that there is, that there is like a pull in us to want to be the kind of person that pours into others and have others pour into us, and it just be this sort of endless giving up and needing. But man, I’m very uncharitable about myself for not being able to be like, hyper protective or hyper grateful in times of tragedy and I. And I struggle with how much I’m allowed to feel hurt, you know, when others don’t do that for me. So I will, I’ll think more about this mercy. That’s… The story with Max and how he let you come back, and said, you know, I noticed about your distance. I thought that was so, like, what a perfect way of letting you feel the weight of it, but not letting it, like, stand between you. I thought that was a perfect, a perfect friend move.

Suleika: What was beautiful about Max and that whole group, was we would rant about, you know, how frustrated we were, how hurt we were that someone hadn’t and showed up and like that was the right forum for for all of that to come out. And sometimes, you know, it was worth expressing to someone how hurtful something had been or, you know, how their actions had affected me and it was only worth it with the friendships that I actually really wanted to work on and keep. But I had to become discerning about that in a way that I hadn’t, you know, prior to getting sick. Anyway, I hope you know I’m always your girl if you want to call me and tell me how frustrating and maddening something has been.

Kate: Thank you! Aw, I love that, though, because I think you’re right. Like there’s the… I think when when you lose so much, it is so beautifully cathartic just to be able to like, pour out the rage and the anger and the venting. And then you’re right, there is such a careful discernment to in, in knowing that there are some friendships, there are, some relationships worth, worth building it back. And like yeah, to have to have grace and mercy for. Thanks. You are really, unflinching. And you’re very tender in the way that you describe the things that you lose, and the things that, and then the beauty and the hunger to live. I felt, I felt so understood. Reading your book, you give people permission to embrace the, humanity of their loss, and also just to want to keep going. To want to have that life worth having and to want to believe that the future, though changed, is still somehow deeply good. So thank you so much, Suleika, this was the best thing to happen to me in a long time. Thanks.

Suleika: Thank you, kate. And I mean it. I’m going to give you my cell phone number. Not while we’re still recording.

Kate: Yeah yeah, no, I love that.

Suleika: Because I’m trying to learn boundaries, as much as I like to give myself a number to everyone who is listening.

Kate: Seeing pain up close can give you an experience of awe. It’s like seeing a garment turned inside out and all the rough seams are showing. You see someone’s absolute humanity shine through all the pain, and that vulnerability makes them more, not less, beloved. We feel it when we see a baby being born or holding someone’s hand as they pass from this life. The great mystery of the world is peeking through and we get a glimpse. The German philosopher and theologian Rudolf Otto called it the numinous. We understand holiness and mystery and fear and humility in the same moment, and it is beautiful. I wish I’d known that when I was in pain, when I truly believed that I was the bad thing. But people’s pain is not only a burden. It’s an opportunity to scoot up close to the deepest parts of who we are and what comprises our humanity. Our positive-thinking-world might miss it, but our faith allows us to see that pain is not simply a sad story. There’s nothing inherently embarrassing or shameful about it. We are not the bad thing. We are simply living our beautiful, terrible days.

Kate: So here’s a blessing for you who might feel like the bad thing. You are everyone’s reminder of frailty, of life’s cruelty. Your chronic pain or depression or regular scans remind those around you that life isn’t as fair or easy as they hoped. Blessed are you who try to hide your humanity. Who temper your complaints. Who avoid mentioning your next appointment. Who pretend you’re doing better than you are to make reality a little more palatable for others. You try and try and try to make yourself easier to love, easier to be around, easier to manage. But dear one, blessed are you because you are not the bad thing. Your illness or grief or despair or addiction is not too much. It’s just your humanity showing. And blessed are we who get to see it up close, who, despite our own fears and reminders of our finitude, get to hold your hand as you face each day with courage, as you face things you didn’t choose. It is this kind of courageous living, the kind that shows us all the shabby edges that we are so thankful to see up close. You, blessed one, remind us that life is so beautiful and life is so hard. And we feel lucky for the privilege to do life with you, no matter how difficult, no matter how messy. You are not the bad thing. You are a gift and we love every bit of you.

Kate: Don’t miss an episode. Subscribe to Everything Happens wherever you listen to podcasts. Today’s episode was made possible by our partners, Lilly Endowment, the Duke Endowment, and Duke Divinity School, who support our faith and media project. We are so grateful for their generosity and investment in what we do. And of course, my perfect team. Jessica Richie, our executive producer, Harriet Putman, our associate producer, Keith Weston, our sound designer, and the rest of the Everything Happens crew who make this project so much fun. Dan Wells, AJ Walton, Mary Jo Clancy, JJ Dickinson, Lonna Steward, Kelly Dunlap, Aaron Lane, Jeb and Sammy. Thank you. This is Everything Happens with me, Kate Bowler.