The One You Feed - How to Embrace Uncertainty with Suleika Jaoaud

Episode Date: June 27, 2023

When Suleika Jaouad received a devastating leukemia diagnosis at the age of 22, her life took a very unexpected turn into adulthood. Viewing her long hospital stay from the lens of a journalist, Suleika began a daily diary, ultimately fashioning her own reflective world. Through her writing, she found not just a lifeline, but a sense of purpose and agency, living out the essence of post-traumatic growth. Suleika's commitment to actively seeking meaning amidst her significant health challenges is an inspiration for anyone dealing with uncertainty in life. In this episode, you'll be able to: Understand how transformation comes with hardship and unpredictability Appreciate the role of vulnerability and love in conquering life's hurdles Discover how doing something creative can be the key to unlocking suffering Know the significance of developing a network built on loving support and empathy Learn how to skillfully navigate the ‘in-between’ spaces in life’s journey To learn more, click hereSee omnystudio.com/listener for privacy information.

Physical pain is not something that we always have control over. Suffering is something we do have agency over to some extent. Welcome to The One You Feed. Throughout time, great thinkers have recognized the importance of the thoughts we have. Quotes like garbage in, garbage out, or you are what you think ring true. And yet, for many of us, our thoughts don't strengthen or empower us. We tend toward negativity, self-pity, jealousy, or fear. We see what we don't have instead of what we do. We think things that hold us back and dampen our spirit. But it's not just about thinking.

Our actions matter. It takes conscious, consistent, and creative effort to make a life worth living. This podcast is about how other people keep themselves moving in the right direction. How they feed their good wolf. I'm Jason Alexander. And I'm Peter Tilden. And together, our mission on the Really Know Really podcast is to get the true answers to life's baffling questions like why the bathroom door doesn't go all the way to the floor,

what's in the museum of failure, and does your dog truly love you? We have the answer. Go to really know really.com and register to win $500 a guest spot on our podcast or a limited edition sign Jason bobblehead. The really know really podcast. Follow us on the iHeartRadio app, Apple podcasts, or wherever you get your podcasts. Thanks for joining us. Our guest on this episode is Suleika Juwad, an American writer, advocate, and motivational speaker. She's the author of the Emmy award-winning Life Interrupted column in the New York Times and has also written for Vogue, Glamour, NPR's All Things Considered, and Women's Health. When Suleika was diagnosed with a rare form of acute myeloid leukemia in 2011, doctors said she only had a 35% chance of surviving. She survived and has written and

spoken extensively about her medical experiences. Her 2021 memoir, Between Two Kingdoms, was a New York Times bestseller. Hi, Suleika. Welcome to the show. Hi. I'm so happy to be here. Yes, I'm very happy that you are here. Ginny is also with me. Hello, Suleika. Hi to the show. Hi, I'm so happy to be here. Yes, I'm very happy that you are here. Ginny is also with me. Hello, Suleika. Hi, Ginny. Hello, everybody. We are in person in New York City.

And as you all know, I love doing these interviews in person. Suleika has written an exceptional book called Between Two Kingdoms, A Memoir of a Life Interrupted, which we will talk about here in a moment, but we'll start like we always do with the parable. In the parable, there's a grandparent who's talking with their grandchild and they say, in life, there are two wolves inside of us that are always at battle. One is a good wolf, which represents things like kindness and bravery and love. And the other is a bad wolf, which represents things like greed and hatred and fear. And the grandchild stops, thinking about it for a second, look up at their grandparents, which one wins?

And the grandparent says, the one you feed. So I'd like to start off by asking you what that parable means to you in your life and in the work that you do. I love that parable so much. It feels especially resonant in the context of the last year of my life, which I'll get into a little bit more later. So as someone who has an over-anxious mind, I'm constantly struggling to figure out how to swim in the ocean of uncertainty. And I've heard anxiety defined as fear of some future unknown or threat and the belief that you can't handle it if it comes to pass. And so that has

been my constant work my whole life. It's been my work in a more heightened way as of late. But I would say that, you know, for me, the bad wolf, so to speak, is the temptation to feel like I can troubleshoot or solve for the uncertain. And of course, you know, the forever acceptance that I'm trying to practice, which is that I can't, none of us can. We instead have to figure out how to live with fear, to coexist with pain without trying to dodge it or numb it, or in my case, fix it. Yeah, that makes a lot of sense. So I think we should start by giving listeners a chance to know your story a bit. I mean, Eric and I have read your absolutely gut-wrenching and gorgeous memoir of your story.

So I want listeners to know a bit about what you have been through and what has brought you to where you are in terms of today. So in your book, you say it all began with an itch. Can you take it from there? Yes. So it was a literal itch, not a metaphorical itch or a quarter-life crisis. When I was 22 years old in my final semester of college, I began having these mysterious symptoms. First the itch, and then this sort of bone-deep fatigue fatigue but youth and health are supposed to go hand in hand so I didn't really think anything of it I felt you know this deeper fear that maybe I

somehow wasn't cut out for the adult world but as the months progressed and I found myself in my first job as a paralegal out of college, those symptoms began to morph and change. And ultimately, I was given a diagnosis of a very aggressive form of leukemia called acute myeloid leukemia. And up until that point, I had been someone who was, I think, first and foremost, a big dreamer. I had my one-year plan and my five-year plan and my 10-year plan. And I had these aspirations of becoming a foreign correspondent or a war correspondent. And with that diagnosis, it was really a cleaving moment for me. There was my life before and everything that came after. And overnight, I lost my job. I moved from Paris, where I'd been working, back into my childhood

bedroom in upstate New York with its embarrassing pink walls and dusty boy band posters. And I prepared to undergo what would ultimately be four years in the kingdom of the sick. And the one thing that's in the contract is that we will all at some point have to contend with our mortality. And yet somehow the threat of death always feels like a plot twist. And I think that was especially true for me at 22. I had this sense of time, time to figure out who I was, time to get my act together, time to find a vocation that not only paid the bills but hopefully nourished me in other ways. And suddenly it was this very abrupt realization that I didn't have time.

I had about a 35% chance of long-term survival. And within those first couple of months in the hospital, I learned that none of the standard chemotherapy treatments were working for me. And that my only shot at the cure was going to be experimental clinical trials. And if I was very lucky, a bone marrow transplant. And so that was my life from age 22 until about 27. But I think what was surprising to me was that more frightening than the fear of death, more unsettling than the illness and the pain that came with it was the sense that I hadn't done what I wanted to do in my life, that I had spent my entire adult life,

you know, all, you know, whatever it was, four years of it at that point, preparing to be a person. I had, you know, spent all nighters so I could get a scholarship to go to college. I had worked really hard to be able to set myself up for some form of independence. And suddenly, I found myself in the very opposite place than I'd planned in those first one and five-year plans. I found myself back in my childhood bedroom, living between there and hospital rooms, and as dependent on others as I'd ever been since infancy. And so it was this rude awakening and realization of my finitude, of our finitude. And more than that, I think it was a quest for me to figure out what this experience meant for me and how I could define some sense of selfhood within it. Yeah.

Yeah. Oh, gosh, so much of what you say just really strikes deep chords within me as just so difficult and so true. And I think a universal point of connection there is that like, for me, the first lesson of adulthood was like, well, life does not go as planned. You know, we can make these plans, we can have these visions. And inevitably, and at some point, you know, sooner or later, there's going to be a plot twist and things are going to be very different from that dream you sort of held for yourself with that plan that you had. As I read the pages that described the months that you sat in the hospital in isolation because of the bone marrow transplant or receiving the kind of therapy you received in chemotherapy,

and then the pain that was associated with that, the physical pain and the mental pain, I just remarked at how you made it through those days passing the time when there wasn't an end in sight. I mean, that just to me sounded like those moments could be really anguish inducing. What did you find that sustained you through that? So that first summer that I spent in the hospital, I, especially when I found out the chemotherapy was not working for me, felt so angry. I remember waking up one morning and closing the blinds in my hospital room. And I was very lucky to have a hospital room that happened to face Central Park, which as far as hospital rooms went, was kind of a coveted hospital room to have that I'd found myself in.

But I couldn't stand the sight of seeing, you know, all these tiny little hustlers in their suits going to work. hustlers in their suits going to work, young mothers, you know, wheeling newborns around in prams, people my age who were having fun and, you know, getting ready to have a picnic in the park because it felt like this reminder of what my life couldn't have been and likely was never going to be. And more than that, I think it pointed to this yearning I had to participate in the world and the deep sense of isolation and inability that I felt was my reality. And so all these plans, these aspirations, say, of becoming a war correspondent felt entirely foreclosed to me. I wasn't doing any of the normal young people things that I saw my friends doing on Instagram. I wasn't going to me. I wasn't doing any of the normal young people things that I saw

my friends doing on Instagram. I wasn't going to parties. I wasn't traveling. I wasn't beginning a career. I was stuck in bed. And it's around that time that a friend of mine suggested that we do something called a hundred day project. And the concept was really simple. We were each going to anchor our days around one creative act. And it was something we were going to do together. And my mom, who's a painter, decided to paint one small ceramic tile every day that she later assembled into a shield and hung above my bed and told me had protective powers. And my dad, who up until that point had been a very private man, who up until that point had been, you know, a very private man, decided to write 100 childhood memories about growing up in rural Tunisia. And he later compiled those memories into a little booklet and gave them to me and my brother. And I really struggled to figure out what my project

could be. I could barely, you know, walk around my room, let alone do some big ambitious thing. And so I decided to return to the thing I'd done from the time I was a child and to journal every day. And I made a couple of rules for myself. One was that I couldn't go back and read it because I didn't want to be concerned about how good the writing was and that it didn't matter how long or short my entry was. And often it was one sentence, and occasionally it was one word, frequently the F word. I was just about to say, I think I might know what that word would be. Exactly. But something interesting began to happen in the process of keeping that journal.

And I started to use it almost as a reporter's pad. And rather than feeling mired and helpless in this situation, I began to observe the hospital world around me. I started recording these overheard snippets of conversation by the nurse's station. I started writing about the new friends and fellow patients that I was encountering and a young man a couple doors down from me who was trying to incite a hospital food strike because our meals kept arriving still frozen from the cafeteria. And I began to realize that while this wasn't necessarily the circumstance I would have chosen for myself, there was a whole world of humanity unfolding right there that I could write about.

And little by little and keeping that journal, although I had no expectations of doing anything with it, I began to find a voice. And I think for me, it was my first indication that while I would never have chosen this new reality for myself, and while I had to cede a lot of control to my doctors, to my caregivers, to the ever-changing treatment protocols to my body, ultimately, I did have some agency. And that was that I could make meaning of this experience on my own terms, in my own words. Yeah, there's certainly an idea you reference in your book, Post-Traumatic Growth, about growing from suffering. And one of the key indicators of the ability to do that is to begin to create a narrative and a meaning out of what's happening. The other thing I think

so instructional in what you said there, and you referenced this a bunch of different times in different ways, but there is a tendency, whether it's extreme like you, like I have leukemia, extreme, like you, like I have leukemia, and the thought becomes, when I get better, then I will X. Or in our own lives, as you said, there was even some of that before. When I get out of college, I will then, when I get promoted, we all do it. Then I'll be A, happy, and B, then I'll do what I want to do. Then I'll do what's important to me. And I think so much of what you learned and you say so eloquently in the book is that strategy doesn't work. There's a line somewhere where you say around illness, I had to learn not to move away from illness, but to move forward with it. And I think that's just a really powerful idea. Absolutely. And I do think, you know, we often feel like we need to check certain boxes or climb certain rungs in order to give ourselves permission to do something that we actually want to do.

And I think, you know, one of the things that was most interesting to me in that first year of illness was how quickly my priorities reshuffled themselves. I had very limited energy. I was on a ton of medications. I maybe had about an hour or two or three on a very good day of usable energy. And what that meant was that I had to get very specific about who I wanted to spend that time with and what I wanted to do during that time. And like I said earlier, especially when you're young, but I think for most of us, we have this sense of endless time that we can get to it later. And overnight, my relationship to time abruptly changed. And I understood that there was an endless time. In fact, in my case, there was likely a very finite amount of time for me to do the things that I wanted to do.

And, you know, it's interesting because I'm very interested in post-traumatic growth now, but at the time, had you told me you can learn something from this, I probably would have punched you in the face. As well, you should have. And I'm not a violent person. So I really struggled in that first year. I would seek out illness narratives and I'd read about someone who had gone on to run an ultra marathon or just start some foundation or to write a bestselling book. And I hated those stories because they made me feel like there was a right and a wrong way to suffer. And at that time, I wasn't ready yet to figure out what I might learn from this experience, how it might enhance my life. And so what I started doing instead was researching this long lineage of bedridden artists and writers that we have who, you know, wrote or created from

the trenches. Freda Kahlo was someone I was very drawn to because she didn't find herself on the other side of her physical pain. She was in an automobile accident when she was 18 years old and ended up living from bed or from a wheelchair for large chunks of her life. And so what she did, you know, instead of waiting until she was better, was she began painting the self-portraits from bed and the portraits of what it meant to live in a broken body and a pain body. And she engaged with her reality. And so that was, you know, very inspiring to me. And it made me realize, maybe there is a way for me to creatively engage with my circumstances without being Pollyannish about it, without putting pressure on myself to find some

kind of silver lining or some sort of wisdom. But maybe I can just explore this. The image of a kaleidoscope is what comes to mind where you sort of twist the cylinder and you see things in a different light. And so that's what I started to do in the journals. But to your other point about waiting for permission, in the lead up to my bone marrow transplant, I realized I had about two months before I entered the hospital and I knew my chances of surviving that procedure were not very high. And I began to rethink this idea of being a journalist. And of course, there was no way for me to be a word correspondent or to travel to some place I couldn't even leave my hospital room,

but I began to think about what I could report on from the front lines of my hospital bed. And just that thought experiment alone opened up my entire world. I love that. And I love that you write about the power of story. You talk about how it helps from reducing our life to just inevitability, you know, or something to that effect. The other thing I hear when you talk about this is that you weren't looking for meaning, you were making meaning. Like there's agency in you having a perspective on what was happening in a way that felt healing and engaging to you. And that that was powerful. And that was it. It wasn't like you had to go find some meaning or find some purpose or it wasn't a passive thing. It was very active. Absolutely. And you spend enough time in hospitals and you very quickly learn that you are not the only one suffering, even though it can feel that way, even though it can feel impossible to think that anything else is happening in the world when you're sick yourself or when you're sitting next to the bedside of a loved one who's

ill. And I think ultimately that's what drew me to writing first as a reader and then later as a writer myself. It's that when we dare to tell the unvarnished truth, be it in a memoir or in a work of fiction circles where a distinction is made between pain and suffering. I'll just sort of lay it out, but I would really love to hear your opinion on it. And the idea is essentially that there is pain in life. We're all going to have it, right? You had an enormous amount of it, you know, an amount of pain that scares me, frankly, right? But that there is an additional layer that goes on top of that pain that some people would call suffering. And it's the mental things that we layer on top of it. And so some of it would be the fear. Some of it would be the jealousy of other people. Some of it would be the ways we resist it. And that there is a way to, while still being in pain and acknowledging

that that pain is extraordinarily real, also lessen the total amount of suffering that goes into that experience. And I'm just curious, does that ring true or resonate with you? Absolutely. I think that's been a core part of how I've endured these different experiences. You know, physical pain is not something that we always have control over. Suffering is something we do have agency over to some extent, you know, how we suffer. Maybe the question isn't whether we suffer or whether we don't, but how we engage with that suffering. And so for me, you know, creativity has always been my way of suffering on my terms. And in a way that instead of feeling like I'm imprisoned by my suffering unlocks not only the suffering for me, but often the world around me.

We were talking yesterday with your agent, Richard Pine, and well, I'll let you take this one. Yeah. Actually, I think it's better to come from you. Well, I just thought he posed such an interesting question because I mentioned to him, I was like, it's like his bravery, her courage and her bravery. And he said, you know, I wonder if she would describe herself that way. He said, like, I feel like people that have had to endure a lot of pain and inevitable suffering, maybe just don't see that there was a choice to show up or not and in how you show up, or maybe there's just a desire to be normal, you know, and not be labeled as something like brave.

And so it just really got me thinking about a lot of different aspects of that. And it did make me curious to know, like, when I say like, gosh, you strike me as so brave, like, how does that land on you? And how do you consider yourself? My answer to that now is very different than it would have been 10 years ago. But I think, you know, in general, we often conflate the hero's journey with the survivor's journey, survivor of an illness or some other kind of heartbreak or difficulty that brings us to the floor. And so when I first got sick, I really resisted the idea of anyone calling me brave or inspiring because I felt like this is not a circumstance that I had chosen. And I didn't feel brave or strong or inspiring. I felt like I was in the

belly of the beast and I was really struggling and I couldn't really see a way forward for myself. What I do feel proud of and where I will accept that word bravery is not, you know, the mere fact of having been sick or having endured some kind of pain. It's, you know, where I see that strength is in our response to the inciting event. So I felt brave when I began writing in the hospital. I felt strong when I turned it into this column that I later went on to write. I felt not like a hero. I don't think I've ever felt like a hero. And I'd be very suspicious of anyone who does think of themselves as a hero. But I felt courageous when in the aftermath of my illness, when I was really trying to figure out who I was and what I wanted to do with my life, I made a choice to take things into my own hands and to embark on a very long, slightly inadvisable road trip that I went on.

Because in those moments, I was choosing something. I was not the passive agent and an experience I wouldn't have opted for. I was active. I was engaging. I was Jason Alexander. And I'm Peter Tilden. And together on the Really No Really podcast, our mission is to get the true answers to life's baffling questions like why they refuse to make the bathroom door go all the way to the floor. We got the answer.

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If you sense that meditating regularly would benefit you, but you struggle to find a sustainable place for it in your schedule, I can help. There are reasons people struggle with creating and maintaining a meditation practice, and it isn't because meditation isn't right for them. In my free guide, The Top 5 Reasons You Can't Seem to Stick with a Meditation Practice and How to Build One That Lasts, I teach you why it can be a struggle to build a meditation practice that lasts and the small fixes that can have a big impact when it comes to getting you where you want to be with meditating regularly. Go to oneufeed.net and sign up for this free guide right on our homepage. One of the things I'm always interested in is what is it that causes some people when faced with enormous difficulty to in some way, I want to be careful with my words here, but they're able to make something generative out of

it. And other people when faced with extraordinary difficulty are crushed by it. It's a variation on a question I've always had as a recovering addict, like why are some of us getting sober? Why are some of us not? There are some things we can certainly point to the level of support that you have the access to the care that you have the quality of the care, we can point those out and see those. And yet we can find examples on both sides of the coin of people who had all that and still, you know, we're sort of emotionally mentally crushed by and on the other hand, people who had none of that. emotionally, mentally crushed by. And on the other hand, people who had none of that. I'm just curious, did you see that in the world that you were in? And was there anything in seeing that any pattern you saw in the people that were again, I like your distinction between surviving

and a hero's journey. And maybe let's step it back from hero's journey, right? We don't need to be that ambitious with the word, but more than just surviving. So I became obsessed with this very question when I found myself, you know, on paper, finally cancer free, but off paper, more lost than I'd ever been. And I was really struggling with reentry, which is a word that we use in the context of veterans returning from war, but we don't use it as much in the context of surviving a traumatic experience like a long illness. And I expected to feel grateful for that. I expected to feel stronger for it. And it was the very opposite of that. I had never been more lost in my life. I knew that I couldn't go back to the person I'd been pre-illness and I was no longer a

patient, but I had no idea who I was. I had no idea how to live my life or what that would look like. And I began to take a great interest in people who had figured out how to move forward without staying crystallized and in that trauma. Because we all know people, and I was one of them for a very long time, who stay in that survival mode. And for a very long time, I was more comfortable in survival mode than I was dealing with everyday life. But I knew intuitively that the key for me was going to be to figure out how to shift out of surviving and into some form of living. I just didn't know how to do that yet.

And so what that looked like for me was going on this road trip and interviewing different people who had experienced all kinds of life interruptions. I interviewed a man on death row in Texas, who at the time that I met him had spent more than half of his life in solitary confinement and was facing the death penalty and had no expectation of ever, you know, getting out. And something that struck me about him was the way that he talked about community. One of the very first questions he asked me was, how did you spend all that time

in the hospital? And I said, I played a lot of Scrabble. And he responded, me too, and explained to me that he and his neighboring cellmates would make boards out of scraps of paper and call their plays out to each other through, you know, the mail slots in their cells. And that made a lot of sense to me because I think that community, whether it's a preexisting community or one that you have to construct for yourself in the aftermath of an experience, is crucial to figuring out how to move forward. Because of course, you can't really move on from a trauma. Like we said, you have to learn to carry that forward with you. And so for me, you know, aside from my wonderful friends and family, finding people who had been where I'd

been, who were where I was, was really important. And being able to have frank conversations about what that experience was like, where I didn't feel the self-imposed pressure to say, I'm alive, I'm so grateful, which of course on some level I was, but was glossing over all the complexity and the day-to-day challenges of really figuring out what it meant to take my place among the living. what it meant to take my place among the living. The second thing I'd say is that when you've endured a trauma, the impulse can be to stay in a very small, safe place. Because when you've had the ceiling cave in on you, you no longer assume structural stability. And that can make the world a scary place to be. It can make opening your heart up a very scary act because it's only natural to want to protect yourself against new loss when you've endured a loss. And so for me, it was really a process of learning not to do what was my impulse, which was to dodge

any sort of discomfort, to numb myself against it, to paper over it, but to really allow myself the time to engage with that grief, with those losses, with that trauma, and to find a sort of container where I could explore that distance between no longer and not yet. And to learn to embrace existing in that messy middle where I didn't know who I was. I didn't know where I was going. I didn't know what my life was going to be. And ultimately, to come to think of discomfort, not as a bad thing, but as a necessary passage when you're in transition. Did you say between no longer and not yet? Yeah, that's a beautiful phrase. I sometimes talk about that, you know, cliche, like when one door closes, another one opens, which I do believe generally

to be true. But I often say what is missed is there's often a long, dark hallway between them, like the one door is closed, the other is not open yet. And it's just scary in there. Absolutely. You know, and the title of the book is Between Two Kingdoms, because ultimately, I believe most of us live large chunks of our lives in the in-between, in transition, in that space between no longer and not yet. And once we can learn to get comfortable with that discomfort, with that sense of uncertainty, there's a lot of richness to be gained from looking around when you're in that liminal space and really boring into the unknown. And as someone who, when we opened this conversation about the two wolves copped to having a great degree of anxiety about uncertainty, my impulse is to rush through those transitions.

I don't want to be in that space between no longer and not yet. I want to know exactly what I'm doing and where I'm going and what my day is going to look like. And my work for whatever reason for the last decade has been being forced to not rush through those transitional moments and really learning to make a life for myself and a home for myself in the messy middle. Yeah, you say to learn to swim in the ocean of not knowing. This is my constant work. So when you find yourself running up against that edge of wanting to rush through it, but

knowing that being present with it is the way to some freedom and richness for yourself. Like, are there practices or their ideas you orient towards? Like, how do you sort of remind yourself at a cellular level to be here and to open to that uncertainty? How do you do that? Well, I think the first thing is rooted in historical understanding of my maladaptive coping mechanisms, which is that when I try to resist grief, when I try to resist discomfort, I end up injuring myself more. Yeah. So that is my bedrock knowledge that I've gained by not using tools that serve me and savoring that transition. Journaling has been a huge part of how on a, you know, day to day, I take a little time for myself to tap into the subconscious, to write in stream of consciousness, and to allow whatever pressure

valve needs to be released to have a little respite. And I love the journal. I know journaling gets a bad rap as this sort of infantile thing that children do with a diary and a little locket. But to me, the journal feels like a rare space in today's world where we really get to show up as our most unexamined, unedited, unvarnished selves and where we get to just write. And so I find that all the messiness for me happens in the journal. And that's the whole point of it. It's not for anybody else's eyes. It's not for public consumption. There's no, you know, end goal to it. It's just pure exploration. And so for me, it's journaling. Sometimes it's walking or being in nature, but I need to have those daily commitments to the messiness in order to stay anchored in it. What I hear you say is that like journaling is

a place where you have given yourself permission to let whatever's here be here and to let it express itself. I can really relate to that. I mean, I have a daily mindfulness meditation practice where that's kind of my sacred time to just find whatever's going on inside of me. I try to connect with it in my body so it's not so abstract. But just to work with not being so hostile towards it and work with just sort of allowing it to be there and express itself. Yeah, I mean, I just think that's so powerful. Because I mean, again, in mindfulness, we talk about like, turning towards our pain versus away from it. I mean, I'm a recovering addict as well. And I've spent a lot of my life just orienting around comfort and trying to avoid pain, thinking that's a brilliant

strategy. We just dodged the bullet, guys. Like in that clearly, it ran my life into the ground. So now just that daily practice of turning towards whatever is, and I still find myself resisting it. So the daily practice is to try to drop that resistance and to open to it. It seems like a powerful way to relate to your grief and relate to your pain. You say at one point, the idea of striving for some beautiful, perfect state of wellness mires us in eternal dissatisfaction, a goal forever out of reach. To be well now is to learn to accept whatever body and mind I currently have. And I think that speaks to what you were just saying, Jenny, and what you're saying about being with what is uncomfortable and recognizing like this is what is here.

I interviewed the author Andrew Solomon yesterday, who's written very eloquently about families and depression. And something stands out as he talks about being in depression and recognizing like you can't wait till it feels like it's over because time is happening. Your life is always what is right here, right now, even when it's really unpleasant. That is what we have to work with. We don't get to skip over the hard work of healing and grieving or to stow away the uncomfortable or painful parts. Because as we know, the more we do that, the more it comes back for blood. And so, you know, before we started this conversation, I was sharing with you what I do when I don't want to write, which is pretty

much most days of the week, if I'm being honest, in part because it's not fun necessarily to sit with that discomfort. Who wants to do that? It's much more enjoyable to binge watch whatever newest show is on Netflix, right? And so what I often do, and this is a practice that the poet Marie Howe does, is when I'm in that space of really resisting whatever it is that I have to say or don't know how to say, I write in my non-dominant hand and I say, I don't want to write about, and then I write into that. And so there are so many little tools like that that I've had to cultivate, not because I'm some peaceful mountaintop guru that has learned to lovingly coexist with pain, but because I have to work at it every day and because my survival is tied to it. I'm Jason Alexander. And I'm Peter Tilden.

And together on the Really No Really podcast, our mission is to get the true answers to life's baffling questions like why they refuse to make the bathroom door go all the way to the floor. We got the answer. Will space junk block your cell signal? The astronaut who almost drowned during a spacewalk gives us the answer. We talk with the scientist who figured out if your dog truly loves you and the one bringing back the woolly mammoth.

Plus, does Tom Cruise really do his own stunts? His stuntman reveals the answer. And you never know who's going to drop by. Mr. Brian Cranston is with us today. How are you, too? Hello, my friend. Wayne Knight about Jurassic Park. Wayne Knight, welcome to Really No Really, sir.

Bless you all. Hello, Newman. And you never know when Howie Mandel might just stop by to talk about judging. Really? That's the opening? Really No Really. Oh, yeah, really. No Really.

Go to reallynoreally.com and register to win $500, a guest spot on our podcast, or a limited edition signed Jason bobblehead. It's called Really? No, Really? And you can find it on the iHeartRadio app, on Apple Podcasts, or wherever you get your podcasts. I think that's such a beautiful point. Yeah. Because I do think we are in a, we're in a culture that, well, it's cultural and it's human to want easy answers, to believe that pain can be banished, to believe that if you just do this practice or that practice, like it will, life will be great. Right. And, and I just, I don't believe that, you know, and it's,

we talk about these things and we talk about difficulties we've gone through and yet being in difficult times is just being in difficult times. Being in pain is just being in pain. There are more, there are more and less skillful ways to do it. But even, I think it's back to what we talked about earlier between pain and suffering, even if you're skillfully relating to the best of your ability to these challenges that we're talking about, they are still challenges

and they are still deeply unpleasant. And life keeps unfolding and time keeps unfolding. And with that comes new beginnings and new challenges and new difficulties. So we opened this conversation speaking about the fear of some future threat happening and the belief that you can't handle it. And so for me, much of the last 10 years was waiting for that ceiling to cave back in, fearing the possibility that one day my leukemia might return. And I had to do battle with that fear and that anxiety every day. And last year, right as I had sort of started to trust the structural stability, my most feared thing did happen. I learned that my leukemia had returned. And it's so interesting doing okay right now, I also learned that this time there wasn't going to be an end date in sight. I'm going to be in treatment indefinitely

for the rest of my life. And that word indefinite initially was so crushing to me. But I was saying this to my husband the other day, there's a strange freedom that I feel now that my most feared thing has come to pass because I just have to learn to live with it now. There is no expectation that I will ever be on the other side of it. And while that was crushing in a lot of ways, I have no choice but to accept it. I have no choice but to coexist it. I have no choice but to coexist with the facts of my mortality. I won't say that my anxiety has dissipated, but it's shape-shifted. Can I connect with you about that point, just about how that has shown up in my life? So for my entire life, the death of my mother was the thing I feared most.

I just did not know how I would go on. I had grown to fear it as just this big looming monster that, you know, unless I died first, it was going to happen one day. And I didn't know how I would survive. I couldn't see the other side of it. And she passed away in October. And here I am. Yeah. You know, it was and still can be.

It's full of grief and a lot of sadness. The way you write about losing Melissa and, like, the nevers. Like, life goes on, but she'll never experience the things that you're experiencing or that one should experience in life, you know? I think about that. It's the finality of her death that just I still can't wrap my mind and head around. So not to make light of it and not to say that, oh, it was nothing. It was awful. And it is awful in moments. And I'm still here.

Like, there's a sense of having had it happen. That doesn't make sense, but you know what I mean. And it didn't destroy you right now. Like, you're still around to talk about it. It's like you're looking around like, okay, it happened. Here I am. There is a freedom in that, isn't there? You live with the awful, but here you are. Here I am. There is a freedom in that, isn't there? You live with

the awful, but here you are. And we adapt. And we adapt. Yeah. You know, the word resilience gets thrown around, but for us to be here in this room, having this conversation, our ancestors had to survive so many things. We have resilience and adaptability encoded in our DNA. And so, you know, thank you for sharing that. And I so deeply understand it. And, you know, I, at my lowest point last summer, when I learned this news, I was back in treatment, I was using a walker, which at 33 is not the thing that you expect that you'll be doing. And I had this really difficult moment of realizing, you know, this quality of life is not the quality of life that I want for myself. And I don't know how to go on. And it was this really scary moment because

I had never really reached the limits of what I thought I could endure up until that moment. And I couldn't do, you know, the things that I loved. For a while, I was on a medication that caused my vision to double. And so I couldn't write. I couldn't journal. And that felt like such a deep loss. And at the time, I thought, I don't know if I'll ever be able to do this thing that I love. And yet we adapt. I started using a voice

transcription app on my phone. I started painting in the place of writing, which is not something I ever thought I was going to do. And painting has become this hugely important part of my life and now career in a very, very bizarre, unexpected way. And so that's the thing that I return to. It's that when we lose some part of ourselves that feels integral to who we are, if we can get quiet enough and observant enough to notice what other things start to appear on the peripheries of that absence, we learned that while you can't go back to the way your life was before, there are new ways of living, new ways of surviving, new ways of interacting with the world around you. And so that's what I've been doing this year is learning to adapt. And on some

days it feels incredibly challenging. And on other days it feels thrilling. I feel almost bulletproof because the ceiling has caved in and I'm okay. The other day I was walking my dog and it was a beautiful sunny day and I'm no longer using my walker. And I just had, you know, one of these great New York moments. Someone was playing something on a boom box. And I had this moment where I turned to my dog and I said out loud, I said, I'm outside and I'm living. And it was such a small, thrilling, ordinary moment, and it meant everything. Do you think that coming back to a diagnosis a second time, to leukemia returning, do you think that you are more prepared to handle it than you were?

You had leukemia. Then you went on this journey across country of interviewing these people. Then you wrote this memoir, which you're mining all that for what you learned what became of you right and now you're sort of like all right I gotta do it again and I assume that there's some ways that you feel more prepared and in some ways maybe worse yeah all of those those things. I think some of it is muscle memory. For example, as soon as I relapsed, my husband and I within 48 hours had to pack up our things, leave our home, rehome our dogs, which was the most heartbreaking thing. And I had this feeling of, I've been here before. I've had this moment of my life

imploding overnight and none of that gets easier. But also I think this time I went into it without any illusions that I could hold onto the plans that I had, that I could hold on to the person I'd been even 48 hours before. And with that came an openness to everything, to the terror, to the beauty, to maybe even the learnings. And that made it easier. The last time I went through this, I was clinging to the person that I'd been that I was no longer. And I was constantly comparing myself to that person. And this time, you know, I just let it all happen to me. And instead of trying to control or trying to resist, I, you know, tried to flow with it. And that made things a lot easier. The other thing I feel like I learned, and I alluded to this earlier from the last time, was how crucial community is. The thing I'm proudest of, my proudest accomplishment in the last decade is the community that I've built of family,

of friends, of chosen family, of fellow artists and writers who I learn from, who inspire me every day. And the thing about community is you can't just create one overnight in a moment of need and then expect people to be there for you, right? Ideally, your initial way of showing up in a community is one of generosity and one of extending support long without expectation of ever needing anything in return. And so this time around, well, you know, illness, even when you're surrounded by people can feel isolating because you alone live in your body and know what's happening in there. I never once felt lonely. I was surrounded by more love than I ever dared dream possible. And ultimately for me, you know, I feel like love is the crucial, essential

ingredient to enduring. You visit on your road trip, Catherine, and she speaks a bit about this, going through something that she thought she could never survive, and yet here she is surviving. She says, you have to shift from the gloom and doom and focus instead on what you love, she told me. That's all you can do in the face of these things. Love the people around you, love the life you have. I can't think of a more powerful response to life's sorrows than loving. I live by those words. And Catherine has become a dear friend and a teacher to me. She lost her 20-something-year-old son to suicide, and then shortly thereafter was diagnosed with a very advanced form of cancer. And long after the book was finished,

I actually ultimately went back to California to teach a creative writing course with her for a semester to a group of 16-year-old students. And I think to me, she's an embodiment of leading with love. She has every reason in the world to be someone who feels betrayed by the world, who feels embittered by her losses, who might not even find a reason to get out of bed. And yet she has planted these seeds of love in the students that she teaches, in her children, that she teaches and her children and now grandchildren and the perfect strangers like myself who she encounters and takes under her wing. And so I try to live my life in such a way where I attempt to emulate Catherine and attempt to focus on the love and to cultivate it. I was going to say we were listening to a song this morning by one of my favorite artists,

Jason Isbell. And he's got a song called, I don't know what it's called. I can't believe you're saying this. I literally was thinking about these lyrics. I think this is what you're about to say about 10 minutes ago. Say it. Yeah. I mean, it's find something to love.

I hope you find something to love, something to do when you feel like giving up. A song to sing, a tale to tell, something to love, it'll serve you well. I love that so much. And I really live my life by that. gratitude, where I have been able to anchor myself is in a practice of seeking out small joys and small loves, because you can always find something to love, the smallest little thing. I mentioned I like to play Scrabble. When I was in the bone marrow transplant last year, for about five weeks, I befriended one of my nurses and she would come and play Scrabble with me during her lunch breaks. And we would get fiercely competitive and we would cuss each other out.

And it was just such a delight and such a joy and also such an act of love for her to choose to spend her precious, you know, 15 minutes or whatever it was with me when that was her job. Who wouldn't want to spend 15 minutes with you? I completely agree. But yeah, yeah, I know what you mean. But I believe that you don't have to find the silver lining. You don't have to feel grateful for some terrible thing that has happened to you, but we can all find a small thing to love. Yeah, because the beautiful and the terrible coexist. Yeah.

Right. But how powerful to hear, you know, you talk about it in that way. There's another connection I want to make. There's something else just really beautiful and rare that I took from your book and I take from your story and connected to community, which is, you know, the community that you built in the hospital with the fellow patients that were suffering in their own cancer journeys, but you all seem to connect with one another in the real messy pain of it all in the most vulnerable and open way, and therefore found a closeness and connection with one another that seemed so sacred and so precious and so supportive to you all. I mean, you were in the hotel room in Vegas. I remember like that scene in your book when you're

talking about all of these things that are like, even at that point, you hadn't shared with one another, but then at that point decided to. Just how much closer that even brought you to one another. I mean, the way you then travel around the country, opening yourself up to connect your pain with the pain that those you visit have experienced, and then how you found your way forward, how they found their way forward. You know, the community you seem to have built for yourself is built on openness and honesty about your pain. It makes me think about Brene Brown and how she talks about like, you know, fitting in is not about like fitting yourself into some mold. It's about showing up in who you are, right?

And finding the connection with whom there's a fit. You know, the irony is I'm a deeply guarded person. I'm not comfortable with vulnerability. I have to constantly overcome my own instinct to self-protect in order to open myself up to, you know, cultivate relationships that are born of a kind of honest, deep sharing in part, because I know those are really the only kinds of relationships I'm interested in having and that feel worth having. But, you know, this crew of friends who I befriended, there were 10 of us, only three of us are still alive. And, you know, my impulse after that was to never befriend someone who was sick because I couldn't bear, you know, the thought of losing

a beloved again. And yet, you know, my favorite moments in my life have been shared with that group of people. And they really taught me what friendship meant. And I would suffer that loss and that grief and that heartache over and over and over again to just get one day with them. But I remember, you know, early on in my friendship with this group of people, they were all in their 20s and early 30s. And we had all been in treatment for quite a long time to the point that we were going to chemotherapy by ourselves and trying to do things a little more independently. And we formed a buddy system together. We would accompany each other to radiation. We would answer phone calls in the middle of the night when the panic attack struck. We always

showed up when there was bad news. And there was this shared sense of understanding that went beyond the strange twist and fate and malignant cells that had yoked us together. But that was really grounded in something deeper, which was a desire to, like we said earlier, not just survive, but to make as rich and as beautiful and as fun of a life as we could, even within the fluorescence of the hospital. And one of the young women in that group of friends, her name was Anjali, and she had no one. She was an orphan, her only sibling. She reached out to as a potential bone marrow donor, and he never returned her calls. She was an immigrant. She had had a really hard life. And she, unlike me, after her first bone marrow transplant, learned that it hadn't worked. And she had a few short months to live. And I'll never forget that last week in the hospice ward at Bellevue Hospital, because she was there and all of us were with her in our varying stages of

baldness. And a hospice nurse turned to me and said, I've never seen anything like this before. I've never seen a patient who is surrounded by fellow patients in their final moments. And to me, you know, that's what friendship is. It's, you know, the moment of accountability that all relationships arc toward, which is how we show up in the midst of the hardest things. And they taught me that in spades over and over again, that even when our instinct is to self protect or to shy away from something that might break your heart. It's always worth it to move through that and to be the person that shows up. And it's an honor to grieve. And I'm not the first person who said this, and it might be a cliche,

but I think it's a true one, which is that grief is a measure of how deeply we've loved. Yeah. And for someone who describes herself as not naturally good at connecting with people, you have done an extraordinary job. If we had more time, I would like to have a whole interview about how you have done it, because it's remarkable. With the cancer patients, with the people across the country, with fellow writers, like you really do have a knack of nurturing community. So even though you may not think you're good at it, from an outside perspective, you clearly are, you know, you clearly have figured that out to some degree. It's a muscle I've had to exercise. Yeah. When you were just describing the group of the cancer patients, it sort of reminded me of my early days in recovery from heroin addiction.

There's a similar camaraderie of people, you know, who are facing not quite as dire a prognosis, but being a homeless heroin addict is a fairly dire place. I would say it's as dire as the stakes are life or death. And when they are like that, there is a closeness that emerges. The stakes are life or death. And when they are like that, there is a closeness that emerges. And there are times that I miss those early days of that because there was something so elemental, you know, and just visceral about those connections. Yeah. And I think those moments, you know, you're brought down to your most savage self. You know, all the varnish has been stripped away.

And vulnerability isn't really a choice when you're in that place. Whether you want to be or you don't, that's what's happening. Yeah. Yeah. I love how you talk about the role of ritual. When life feels so sort of out of control and you're in the messy middle and the uncertain and the dark hallway, that sometimes there is sort of a lifeline we can grab onto to help pull us to the other side. I don't know if that's the right way to language it or not, but you say, so these rites of passage allow us to migrate from one phase of our lives to another.

They keep us from getting lost in transit. They show us a way to honor the space between no longer and not yet. But I have no predetermined rituals. These are mine to create. Does the role of ritual still show up in your life and how so? Absolutely. And I have different rituals depending on the week, depending on the month. Ritual is hugely important to me. It creates a sort of sacred container when you are living in a liminal space, when you are in transition. I mean, we have all kinds of rites of passage in our culture. We have funerals. We have baby showers.

We have weddings, and they mark these important transitional moments. weddings and they mark these important transitional moments. And I think the reason that we have so many of them is because, first of all, they invoke community, right? Often these things happen with at least one or two other humans, if not many more than that. But they also force us to acknowledge the transition, which is what we've been talking about, to honor what was and to honor what's to come, even if it's unclear what that might look like. And so I have all kinds of rituals. I did another 100-day project when I was recovering from my last bone marrow transplant, and this one for me was around painting. I started painting my own kind of Frida-inspired, very surreal, fever dream-esque self-portraits when I was in the hospital. And I found a kind of language in watercolor that I couldn't express myself in any other way.

And Melissa, my friend, one of my cancer comrades who's no longer with us was an incredible watercolor artist. And she used to always say, I love watercolor because it's messy and you can't control it like life. And so that has been my ritual. I make watercolors every day.

I have no idea if they're any good and they don't really care. But that's the kind of metaphor that I get to embody on a daily basis that helps orient me, that helps me accept what I can't control, that helps me live in the mess. Well, I think that is a beautiful place to wrap up. Thank you so much. Thank you. I know it's a cliche, but you are inspiring. Well, I have just learned so much from you in this last hour or so. I've learned so much from reading your book. And it's inspired in me the intention to be brave when I feel fear or pain within my life to be intentional about how I want to move forward.

And so I just really appreciate it. Thank you both. This has been such an honor. If what you just heard was helpful to you, please consider making a monthly donation to support the One You Feed podcast. When you join our membership community with this monthly pledge, you get lots of exclusive members-only benefits. It's our way of saying thank you for your support. Now, we are so grateful for the members of our community. We wouldn't be able to do what we do without their support, and we don't take a single dollar for granted. To learn more, make a donation at any level, and become a

member of the One You Feed community, go to oneyoufeed.net slash join. The One You Feed podcast would like to sincerely thank our sponsors for supporting the show. I'm Jason Alexander. And I'm Peter Tilden. And together, our mission on the Really No Really podcast is to get the true answers to life's baffling questions like why the bathroom door doesn't go all the way to the floor, what's in the museum of failure, and does your dog truly love you? We have the answer. Go to reallynoreally.com and register to win $500, a guest spot on our podcast, or a limited edition signed Jason bobblehead.

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