How to Embrace Uncertainty with Suleika Jaoaud - podcast episode cover

How to Embrace Uncertainty with Suleika Jaoaud

Jun 27, 20231 hr 4 minEp. 616
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Episode description

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

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See omnystudio.com/listener for privacy information.

Transcript

Speaker 1

Physical pain is not something that we always have control over. Suffering is something we do have agency over to some extent.

Speaker 2

Wow, 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. Thanks for joining us. Our guest on this episode is Suleka Juad, 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,

NPRS All Things Considered in Women's Health. When Suleka was diagnosed with a rare form of acute Myalloyd leukemia. In twenty eleven, doctors said she only had a thirty five percent chance of surviving. She survived and has written and spoken extensively about her medical experiences. Her twenty twenty one memoir Between Two Kingdoms was a New York Times bestseller.

Speaker 3

Hi, Suleka, Welcome to the show.

Speaker 1

Hi, I'm so happy to be here.

Speaker 3

Yes, I'm very happy that you are here. Ginny is also with me.

Speaker 1

Hello Suleka, Hi, Jimmy, Hello everybody.

Speaker 3

We are in person in New York City, and as you all know, I love doing these interviews in person. Suleka 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 will 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

a battle. One is a good wolf, which represents things like kindness and bravery and love, and the others a bad wolf, which represents things like greed and hatred and fear. And the grandchild stops think about it for a second look aup 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.

Speaker 1

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.

Speaker 4

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?

Speaker 1

Yeah, so it was a literal itch, not a metaphorical itch or you know, a quarter life crisis. When I was twenty two 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. But youth and health are supposed to go hand in hand, so I didn't really think anything of it. I felt 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 ioloid 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 tenuere 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 you know, 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 twenty two. I had this sense of time, you know, 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 thirty five percent

chance of long term survival. 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

twenty two until about twenty seven. 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 this 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 then i'd planned in those you know, 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.

Speaker 4

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 it, 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?

Speaker 1

So that first summer that I spent in the hospital, I, especially when I found out that 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, was kind of a coveted hospital room to have that

I'd found myself in. But I couldn't stand the site of seeing, you know, all these tiny little hustlers and 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, you know, these aspirations, say, of becoming a war correspondent felt entirely fore close 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 was 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 one 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 you know, a very private man, decided to write one hundred 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 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.

Speaker 3

I was just about to say. I think I might know what that.

Speaker 1

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 you know, 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 nurses station. I started writing about the new friends and fellow patients that I was encountering, and a young man, a couple was down for me, who was trying to incite a hospital food strike because our meals kept arriving self 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 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 seed 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.

Speaker 3

Yeah, there's certainly an idea you reference in your book Post Traumatic Growth about growings 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 is so instructional in what you said there, and you reference this a bunch of different times in different ways, but there is a tendency, whether it's 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 say, 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 strateg that she 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. Yeah, yeah, you know, And I think that's just a really powerful.

Speaker 1

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, you know, 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, you know, my relationship to time abruptly changed, and I understood that

there wasn't 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 traumatic growth now. But at the time, had you told me that you can learn something from this, I probably would have punched you in the face. 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 to start some foundation, or to write, you know, a best selling 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. Free to call O with someone I was very drawn to because she didn't find herself on the other side of her physical pain. She was an automobile accident when she was eighteen 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. You know, 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 and 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 work 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 were on from the front lines of my hospital bed, and just that thought experiment alone opened up my entire world.

Speaker 4

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, and beginning to connect with that, and beginning to own that and write about it.

The meaning was yours to make like you were able to show up with 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.

Speaker 1

It's very active, absolutely, And you spend enough time in hospitals and you very quickly learned 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 you know, I think ultimately that's what drew me to writing, first as a reader

and then later as a writer myself. It's that, you know, when we dare to tell the unvarnished truth, be it a memoir or in a work of fiction, we learn again and again that were more alike than we are different.

Speaker 3

There's an idea in a lot of spiritual circles where a distinction is made between pain and suffering. I'll just sort of lay it out, but I'd 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 so 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?

Speaker 1

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 and my way of suffering on my terms and in a way that instead of feeling like I'm prisoned by my suffering, unlocks not only the suffering for me, but often the world around me.

Speaker 3

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.

Speaker 4

Well, I just thought he posts such an interesting question because I mentioned to him, I was like, it's like as 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 how does that land on you? And how do you consider yourself?

Speaker 1

My answer to that now is very different than it would have been ten 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 and advisable broad 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 in I was making a distessions.

Speaker 3

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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 too 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. 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.

Speaker 1

So I became obsessed with this very question when I found myself on paper, finally cancer free, but off paper more lost than I'd ever been. And I was really struggling with re entry, which is a word that we use in the context of veterans returning for more, 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 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 for 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, 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 and their cells. And that made a lot of sense to me, because I think that community, whether it's a pre existing 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, find 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. 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.

Speaker 3

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 a 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.

Speaker 1

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, you know, boring into the unknown.

And as someone who you know, when we open 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.

Speaker 4

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 like wanting to rush through it, but knowing that being present with it is the way to some freedom and richness for yourself.

Speaker 1

Are there practices?

Speaker 4

Are there ideas you orient towards, Like how do you sort of remind yourself at a cellular level to be year and to open to that uncertainty.

Speaker 1

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 you know, 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 the 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 end goal to it. It's just pure exploration. Yeah, 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.

Speaker 4

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.

Speaker 1

We just dodged the bullet, guys like.

Speaker 4

And 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 into open to it. It seems like a powerful way to relate to your grief and relate to your pain.

Speaker 3

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, Ginny, 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 is 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.

Speaker 1

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, yeah, the more it comes back for blood. Yeah. 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 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? Sure, you know 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 the poet Marie how 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, you know, lovingly coexist with pain, but because I have to work at it every day, and because my survival is tied to it.

Speaker 3

I think that's such a beautiful point, because I do think we are in a We're in a culture that 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 it 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 the best of your ability to these challenges that we're talking about, they are still challenges and they are still deeply unpleasant.

Speaker 1

And life keeps unfolding, and time keeps unfolding, and when that comes new beginnings and new challenges and new difficulties. So, you know, we open 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 ten years was waiting for that ceiling to cave back, in fearing the possibility that one day might leukemia might return. And I had to, you know, 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 because you know, I've been the sickest I've ever been in the last year, I had a second bone marrow transplant, and while I'm 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 this 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. Ah, there's 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 with

the facts of my mortality. I won't say that my anxiety has dissipated, but it's shape shifted.

Speaker 4

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, you know, it was and still ken bets 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. 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, 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 happens. Here I am. There is a freedom and that isn't there. You live with the awful, but here you.

Speaker 1

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 day 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 a walker, which at thirty three 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, you know, 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, you know, appear on the peripheries of that absence. We learned that, well, you know, 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 bullet proof 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 boombox, and I had this moment where I turned to my dog and I said, out loud, I said, I am outside and I'm living. And it was such a small, thrilling, ordinary moment, and it met everything.

Speaker 3

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 got to do it again. And I assume that there's some ways that you feel more prepared and in some way maybe worse.

Speaker 1

Yeah, all of those things, you know, I think some of it is muscle memory. For example, as soon as I relapsed, you know, my husband and I within forty eight hours, had to pack up our things, leave our home, we home, our dogs, which was the most heartbreaking thing. And I had this feeling of you know, I've been here before, I've had this moment of my life imploding overnight,

and none of that gets easier. Yeah, but also I think this time I went into it without any allusions that I could hold onto the plans that I had, that I could hold on to the person i'd been even forty eight 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 that, I was clinging to the person that i'd then 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 learned 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 and 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. And there I never once felt lonely. I was surrounded by more love than I ever dare dream possible, and ultimately for me, you know, I feel like love is the crucial, essential ingredient to enduring.

Speaker 4

You visit on your road trip Catherine, and she speaks a bit about this going through, you know, something that she thought she could never survive, and yet here she is surviving.

Speaker 1

You know.

Speaker 4

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.

Speaker 1

I love by those words, and Catherine has become a dear friend and a teacher to me. She lost her twenty seven 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 sixteen 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 this students that she teaches in 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 attempt to emulate Catherine, an attempt to focus on the love and to cultivate it.

Speaker 3

I was going to say, we were listening to a song this morning by one of my favorite artists, Jason Isbel and he's got a song called I Don't know what it's called.

Speaker 4

Well, you're saying this. I literally was thinking about these lyrics I think this is what you're about to say about ten minutes ago.

Speaker 1

Say it.

Speaker 3

Yeah, I mean it's find something to love.

Speaker 4

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.

Speaker 1

I love that so much and I really live my life by that. I have a hard time with gratitude journals or gratitude lists, just because, especially as a cancer patient, you're kind of bombarded with messages of gratitude. Where I have been able to anchor myself as a practice of seeking out small joys and small loves, because you could always find something to love the smallest little thing, you know.

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, fifteen minutes or whatever it was with me when that was her job.

Speaker 3

Who wouldn't want to spend.

Speaker 4

I completely agree, but I yeah, yeah, I know what she means.

Speaker 1

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.

Speaker 4

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 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 closenessant 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 cheared 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.

Speaker 1

You know. The irony is, I am 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've befriended, there

were ten 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 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 and my friendship with this group of people. They were all in their twenties and early thirties, and we'd all been in treatment for quite a long time, to the point that we were going to you know, 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 to 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 Angelie, 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, you know, 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 are 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.

Speaker 3

Yep. 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.

Speaker 1

It's a muscle I've had to exercise.

Speaker 3

Yeah, when you were just describing the group of the cancer patients. That 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's a fairly dire place.

Speaker 1

Say it's as dire.

Speaker 3

Yeah, so the sticks our life or that. 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.

Speaker 1

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. Yeah. Yeah, whether you want to be or you don't, that's what's happening.

Speaker 2

Yep.

Speaker 1

Yeah.

Speaker 4

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 on to 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 rights of passage allow us to migrate from one phase of our lif 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 rituals still show up in your life?

Speaker 1

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 rights of passage in our culture. We have funerals, we have baby showers, we have 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 all also forced 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 one hundred day project when I was recovering from my last Bonemero transplant, and this one, for me, was around painting.

I started painting my own kind of freeda 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, no idea if there any good and I 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.

Speaker 3

Well, I think that is a beautiful place to wrap up. Thank you so much.

Speaker 1

Thank you.

Speaker 3

I know it's a cliche, but you are inspiring.

Speaker 4

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.

Speaker 1

Thank you both. This has been such in the honor.

Speaker 2

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