The One You Feed - How to Live in the Space Between No Longer and Not Yet | Suleika Jaouad
Episode Date: May 29, 2026In this episode, Suleika Jaouad, author of Between Two Kingdoms, discusses her experience learning how to live in the space between no longer and not yet. Suleika shares how illness shattered her pla...ns and forced her to confront mortality, finding agency through journaling and creativity. She discusses the difference between pain and suffering, the importance of community, and learning to live in life’s uncertain “in-between” spaces. Following a recurrence of her disease, she reflects on resilience, love, and embracing discomfort as pathways to meaning and growth. Good Wolf Reminders: A little wisdom, right when you need it. Start receiving free text reminders designed to help you pause, reflect, and take meaningful action. Sign up at oneyoufeed.net/sms. Exciting News!!! How a Little Becomes a Lot: The Art of Small Changes for a More Meaningful Life is out NOW! Order today! Key Takeaways: Suleika’s personal journey with acute myeloid leukemia at age 22. The impact of illness on identity and life plans. The psychological and emotional challenges associated with serious health issues. The concept of living in the “messy middle” between past and future. The role of creativity and journaling in coping with illness. The importance of community and connection during difficult times. The distinction between physical pain and emotional suffering. The idea of bravery in responding to hardship and making active choices. The significance of rituals in navigating uncertainty and transitions. Finding meaning and beauty in life despite pain and suffering. For full show notes: click here! If you enjoyed this conversation with Suleika Jaouad, check out these other episodes: How to Find Solace in Discomfort with Lanusha Dameris Strengthening Our Resilience with Linda Graham By purchasing products and/or services from our sponsors, you are helping to support The One You Feed, and we greatly appreciate it. Thank you! This episode is sponsored by: Brodo Broth: Shop the best broth on the planet with Brodo. Head to Brodo.com/TOYF for 20% off your first subscription order and use code TOYF for an additional $10 off. Quince: Refresh your wardrobe with Quince by going to Quince.com/feed for free shipping and 365-day returns. Now available in Canada, too. Aura Frames: Named #1 by Wirecutter, you can save on the gifts moms love by visiting AuraFrames.com. For a limited time, listeners can get 25 dollars off their best-selling Carver Mat frame with code FEED. Support the show by mentioning us at checkout! Rocket Money Let Rocket Money help you reach your financial goals faster. Join at rocketmoney.com/feed. Taskrabbit: When life happens, your to-do list grows. Get ahead of it now and get fifteen dollars off your first task at Taskrabbit.com or on the Taskrabbit app using promo code FEED. Taskers book up fast, especially for same-day tasks, so book trusted home help today. Hello Fresh – Get 10 free meals + a FREE Zwilling Knife (a $144.99 value) on your third box. Offer valid while supplies last. Learn more about your ad choices. Visit megaphone.fm/adchoices
Transcript
Discussion (0)
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.
There's an old saying when one door closes another opens,
and I believe that's mostly true, but what often gets left out is,
the dark hallway between them. The part where the first door is shut and the next door hasn't opened,
and you don't know how long you'll be standing in it. Salika Jawad calls that the place between
no longer and not yet, and she has spent a lot of her life there through leukemia relapse
at a life she couldn't plan. Her memoir is called Between Two Kingdoms and It's Outstanding.
This conversation is about learning to make a home in that hallway instead of rushing through it.
I'm Eric Zimmer, and this is the one you feed.
Hi, Suleka.
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, Sue Lika.
Hi, Ginny.
Hello, everybody.
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 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.
Think about it for a second.
Look up at their grandparents.
Say, well, which one wins?
And the grandparent says, the one you feed.
So I'd like to start off by asking you, what that person is.
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, you know, 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.
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, 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 22.
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 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.
Then 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 own.
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 cords 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?
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 in 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, it 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. Young mothers, you know, wheeling newborns around
and 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 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 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 100-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 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, 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 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 and my own words.
Yeah, there's certainly an idea you referenced 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 is so instructional on 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
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.
Yeah.
Yeah.
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, 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 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.
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 ultramarathon or to start some foundation or to write, you know, 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 bed-ridden artists and writers that we have who, you know, wrote or created from the trenches.
Frida Kahlo was 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 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, hmm, maybe there is a way for me to creatively engage with my circumstances.
without being polyanish 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, 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 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.
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.
It's 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.
Yeah.
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 in a memoir or in a work of fiction,
We learn again and again that are more alike than we are different.
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 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.
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.
Yeah.
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 in an experience I wouldn't have opted for.
I was active.
I was engaging.
I was making decisions.
I've often said that depression hates a moving target, but there's a cruel irony in there
because moving is one of the hardest things to do with depression.
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to sort through the complex mess of finding one,
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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. 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 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
a 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, you know, 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 meal 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, 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.
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, you know, 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 an 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 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, 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 full.
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 like wanting to
rush through it, but knowing that being present with it is the way to some freedom and richness for
yourself? Are there practices, are there 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, you
or 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 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 spend a lot of my life just orienting around comfort and trying to avoid pain thinking that's a brilliant strategy.
We just dodge the bullet, guys.
Like, 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 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, 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 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.
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 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?
Sure.
You know, it's much more enjoyable.
to binge watch whatever newest show is on that flex, 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-dominate 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.
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I think that's such a beautiful point.
Yeah.
Because I do think we are 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 life will be great, right?
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.
Yeah.
So, you know, we open this conversation speaking about.
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 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 and say 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 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 never, 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.
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, 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 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 met everything.
Do you think that coming back to a diagnosis the 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 ways maybe worse.
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 48 hours had to pack up our things, leave our home, re-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 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 of,
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, without expectation of ever needing anything in return.
And so this time around, well, 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 dare 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, you know, something that she thought she could never survive and yet here she is surviving.
You know, 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. And the students 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 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 artist Jason Isbell.
And he's got a song called, I don't know what it's called.
I can 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.
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, 15 minutes or whatever it was with me when that was her job.
Who wouldn't want to spend 15 minutes with you?
I agree.
I completely agree.
But I, 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 seemed 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 cheered 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 Bray 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 and my friendship with this group of people, they were all in their 20s and early 30s and had all been in treatment for quite a long time to the point that.
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 attacks 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 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, 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 and 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-protact 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. 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 in 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.
Yeah.
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.
Yeah.
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 rights 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 rituals 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.
Yeah.
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 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 there 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.
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good wolf. 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.
Thank you so much for listening to the show.
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