Speaker 1: Physical pain is not something that we always have control over.
Speaker 1: Suffering is something we do have agency over to some extent.
Speaker 2: Wow, welcome to the one you feed throughout time. Great
Speaker 2: thinkers have recognized the importance of the thoughts we have.
Speaker 2: Quotes like garbage in, garbage out, or you are what
Speaker 2: you think ring true. And yet for many of us,
Speaker 2: our thoughts don't strengthen or empower us. We tend toward negativity,
Speaker 2: self pity, jealousy, or fear. We see what we don't
Speaker 2: have instead of what we do. We think things that
Speaker 2: hold us back and dampen our spirit. But it's not
Speaker 2: just about thinking. Our actions matter. It takes conscious, consistent,
Speaker 2: and creative effort to make a life worth living. This
Speaker 2: podcast is about how other people keep themselves moving in
Speaker 2: the right direction, how they feed their good wolf. Thanks
Speaker 2: for joining us. Our guest on this episode is Suleka Juad,
Speaker 2: an American writer, advocate, and motivational speaker. She's the author
Speaker 2: of the Emmy award winning Life Interrupted column in The
Speaker 2: New York Times and has also written for Vogue, Glamour,
Speaker 2: NPRS All Things Considered in Women's Health. When Suleka was
Speaker 2: diagnosed with a rare form of acute Myalloyd leukemia. In
Speaker 2: twenty eleven, doctors said she only had a thirty five
Speaker 2: percent chance of surviving. She survived and has written and
Speaker 2: spoken extensively about her medical experiences. Her twenty twenty one
Speaker 2: 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
Speaker 3: also with me.
Speaker 1: Hello Suleka, Hi, Jimmy, Hello everybody.
Speaker 3: We are in person in New York City, and as
Speaker 3: you all know, I love doing these interviews in person.
Speaker 3: Suleka has written an exceptional book called Between Two Kingdoms,
Speaker 3: a memoir of a life interrupted, which we will talk
Speaker 3: about here in a moment, but will start like we
Speaker 3: always do with the parable. In the parable, there's a
Speaker 3: grandparent who's talking with their grandchild and they say, in life,
Speaker 3: there are two wolves inside of us that are always
Speaker 3: a battle. One is a good wolf, which represents things
Speaker 3: like kindness and bravery and love, and the others a
Speaker 3: bad wolf, which represents things like greed and hatred and fear.
Speaker 3: And the grandchild stops think about it for a second
Speaker 3: look aup at their grandparents, which one wins and the
Speaker 3: grandparent says, the one you feed. So I'd like to
Speaker 3: start off by asking you what that parable means to
Speaker 3: you in your life and in the work that you do.
Speaker 1: I love that parable so much. It feels especially resonant
Speaker 1: in the context of the last year of my life,
Speaker 1: which I'll get into a little bit more later. So
Speaker 1: as someone who has an over anxious mind, I'm constantly
Speaker 1: struggling to figure out how to swim in the ocean
Speaker 1: of uncertainty. And I've heard anxiety defined as fear of
Speaker 1: some future unknown or threat and the belief that you
Speaker 1: can't handle it if it comes to pass. And so
Speaker 1: that has been my constant work my whole life. It's
Speaker 1: been my work in a more heightened way as of late.
Speaker 1: But I would say that you know, for me, the
Speaker 1: bad wolf, so to speak, is the temptation to feel
Speaker 1: like I can troubleshoot or solve for the uncertain. And
Speaker 1: of course, you know the forever acceptance that I'm trying
Speaker 1: to practice, which is that I can't, none of us can.
Speaker 1: We instead have to figure out how to live with fear,
Speaker 1: to coexist with pain without trying to dodge it or
Speaker 1: numb it, or in my case, fix it.
Speaker 4: Yeah, that makes a lot of sense. So I think
Speaker 4: we should start by giving listeners a chance to know
Speaker 4: your story a bit. I mean, Eric and I have
Speaker 4: read your absolutely gut wrenching and gorgeous memoir of your story,
Speaker 4: So I want listeners to know a bit about what
Speaker 4: you have been through and what has brought you to
Speaker 4: where you are in terms of today. So in your book,
Speaker 4: you say it all began with an itch. Can you
Speaker 4: take it from there?
Speaker 1: Yeah, so it was a literal itch, not a metaphorical
Speaker 1: itch or you know, a quarter life crisis. When I
Speaker 1: was twenty two years old, in my final semester of college,
Speaker 1: I began having these mysterious symptoms, first the itch and
Speaker 1: then this sort of bone deep fatigue. But youth and
Speaker 1: health are supposed to go hand in hand, so I
Speaker 1: didn't really think anything of it. I felt this deeper
Speaker 1: fear that maybe I somehow wasn't cut out for the
Speaker 1: adult world. But as the months progressed and I found
Speaker 1: myself in my first job as a paralegal out of college,
Speaker 1: those symptoms began to morph and change, and ultimately I
Speaker 1: was given a diagnosis of a very aggressive form of
Speaker 1: leukemia called acute ioloid leukemia. And up until that point
Speaker 1: I had been someone who was, I think, first and
Speaker 1: foremost a big dreamer. I had my one year plan
Speaker 1: and my five year plan and my tenuere plan, and
Speaker 1: I had these aspirations of becoming a foreign correspondent or
Speaker 1: a war correspondent. And with that diagnosis it was really
Speaker 1: a cleaving moment for me. There was my life before
Speaker 1: and everything that came after. And overnight I lost my job.
Speaker 1: I moved from Paris, where i'd been working, back into
Speaker 1: my childhood bedroom in upstate New York with its embarrassing
Speaker 1: pink walls and dusty boy band posters, and I prepared
Speaker 1: to undergo what would ultimately be four years in the
Speaker 1: Kingdom of the sick. And you know, the one thing
Speaker 1: that's in the contract is that we will all at
Speaker 1: some point have to contend with our mortality. And yet
Speaker 1: somehow the threat of death always feels like a plot twist,
Speaker 1: and I think that was especially true for me. At
Speaker 1: twenty two. I had this sense of time, you know,
Speaker 1: time to figure out who I was, time to get
Speaker 1: my act together, time to find a vocation that not
Speaker 1: only paid the bills, but hopefully nourished me in other ways.
Speaker 1: And suddenly it was this very abrupt realization that I
Speaker 1: didn't have time. I had about a thirty five percent
Speaker 1: chance of long term survival. Within those first couple of
Speaker 1: months in the hospital, I learned that none of the
Speaker 1: standard chemotherapy treatments were working for me, and that my
Speaker 1: only shot at the cure was going to be experimental
Speaker 1: clinical trials and if I was very lucky, a bone
Speaker 1: marrow transplant. And so that was my life from age
Speaker 1: twenty two until about twenty seven. But I think what
Speaker 1: was surprising to me was that more frightening than the
Speaker 1: fear of death, more unsettling than the illness and the
Speaker 1: pain that came with it, was this sense that I
Speaker 1: hadn't done what I wanted to do in my life.
Speaker 1: That I had spent my entire adult life, you know, all,
Speaker 1: you know, whatever, it was four years of it at
Speaker 1: that point, preparing to be a person. I had, you know,
Speaker 1: spent all nighters so I could get a scholarship to
Speaker 1: go to college. I had worked really hard to be
Speaker 1: able to set myself up for some form of independence,
Speaker 1: and suddenly I found myself in the very opposite place
Speaker 1: then i'd planned in those you know, first one and
Speaker 1: five year plans. I found myself back in my childhood bedroom,
Speaker 1: living between there and hospital rooms, and as dependent on
Speaker 1: others as I'd ever been since infancy. And so it
Speaker 1: was this rude awakening and realization of my finitude, of
Speaker 1: our finitude. And more than that, I think it was
Speaker 1: a quest for me to figure out what this experience
Speaker 1: meant for me and how I could define some sense
Speaker 1: of selfhood within it. Yeah.
Speaker 4: Yeah, oh gosh, So much of what you say just
Speaker 4: really strikes deep chords within me as just so difficult
Speaker 4: and so true. And I think a universal point of
Speaker 4: connection there is that, Like for me, the first lesson
Speaker 4: of adulthood was like, well, life does not go as planned.
Speaker 4: You know, we can make these plans, we can have
Speaker 4: these visions, and inevitably and at some point, you know,
Speaker 4: sooner or later, there's going to be a plot twist
Speaker 4: and things are going to be very different from that
Speaker 4: dream you sort of held for yourself with that plan
Speaker 4: that you had. As I read the pages that described
Speaker 4: the months that you sat in the hospital in isolation
Speaker 4: because of the bone marrow transplant or receiving the kind
Speaker 4: of therapy you received in chemotherapy, and then the pain
Speaker 4: that was associated with that, the physical pain and the
Speaker 4: mental pain. I just remarked it, how you made it
Speaker 4: through those days, passing the time when there wasn't an
Speaker 4: end in sight. I mean that just to me sounded
Speaker 4: like those moments could be really anguish inducing. What did
Speaker 4: you find that sustained you through that?
Speaker 1: So that first summer that I spent in the hospital, I,
Speaker 1: especially when I found out that chemotherapy was not working
Speaker 1: for me, felt so angry. I remember waking up one
Speaker 1: morning and closing the blinds in my hospital room. And
Speaker 1: I was very lucky to have a hospital room that
Speaker 1: happened to face Central Park, which, as far as hospital rooms,
Speaker 1: was kind of a coveted hospital room to have that
Speaker 1: I'd found myself in. But I couldn't stand the site
Speaker 1: of seeing, you know, all these tiny little hustlers and
Speaker 1: their suits going to work, young mothers, you know, wheeling
Speaker 1: newborns around in prams, people my age who were having fun,
Speaker 1: and you know, getting ready to have a picnic in
Speaker 1: the park. Because it felt like this reminder of what
Speaker 1: my life couldn't have been and likely was never going
Speaker 1: to be. And more than that, I think it pointed
Speaker 1: to this yearning I had to participate in the world,
Speaker 1: and the deep sense of isolation and inability that I
Speaker 1: felt was my reality. And so all these plans, you know,
Speaker 1: these aspirations, say, of becoming a war correspondent felt entirely
Speaker 1: fore close to me. I wasn't doing any of the
Speaker 1: normal young people things that I saw my friends doing
Speaker 1: on Instagram. I wasn't going to parties, I wasn't traveling,
Speaker 1: I was beginning a career. I was stuck in bed.
Speaker 1: And it's around that time that a friend of mine
Speaker 1: suggested that we do something called one hundred Day Project.
Speaker 1: And the concept was really simple. We were each going
Speaker 1: to anchor our days around one creative act and it
Speaker 1: was something we were going to do together. And my mom,
Speaker 1: who's a painter, decided to paint one small ceramic tile
Speaker 1: every day that she later assembled into a shield and
Speaker 1: hung above my bed and told me had protective powers.
Speaker 1: And my dad, who up until that point had been
Speaker 1: you know, a very private man, decided to write one
Speaker 1: hundred childhood memories about growing up in rural Tunisia, and
Speaker 1: he later compiled those memories into a little booklet and
Speaker 1: gave them to me and my brother, and I really
Speaker 1: struggled to figure out what my project could be. I
Speaker 1: could barely, you know, walk around my room, let alone
Speaker 1: do some big, ambitious thing. And so I decided to
Speaker 1: return to the thing done from the time I was
Speaker 1: a child, and to journal every day. And I made
Speaker 1: a couple of rules for myself. One was that I
Speaker 1: couldn't go back and read it because I didn't want
Speaker 1: to be concerned about how good the writing was, and
Speaker 1: that it didn't matter how long or short my entry was.
Speaker 1: And often it was one sentence, and occasionally it was
Speaker 1: one word, frequently the F word.
Speaker 3: I was just about to say. I think I might
Speaker 3: know what that.
Speaker 1: Exactly. But something interesting began to happen in the process
Speaker 1: of keeping that journal, and I started to use it
Speaker 1: almost as a reporter's pad. And rather than feeling you know,
Speaker 1: mired and helpless in this situation, I began to observe
Speaker 1: the hospital world around me. I started recording these overheard
Speaker 1: snippets of conversation by the nurses station. I started writing
Speaker 1: about the new friends and fellow patients that I was encountering,
Speaker 1: and a young man, a couple was down for me,
Speaker 1: who was trying to incite a hospital food strike because
Speaker 1: our meals kept arriving self frozen from the cafeteria, and
Speaker 1: I began to realize that while this wasn't necessarily the
Speaker 1: circumstance I would have chosen for myself, there was a
Speaker 1: whole world of humanity unfolding right there that I could
Speaker 1: write about, and little by little and keeping that journal,
Speaker 1: although I had no expectations of doing anything with it,
Speaker 1: I began to find voice, and I think for me
Speaker 1: it was my first indication that while I would never
Speaker 1: have chosen this new reality for myself, and while I
Speaker 1: had to seed a lot of control to my doctors,
Speaker 1: to my caregivers, to the ever changing treatment protocols to
Speaker 1: my body, ultimately I did have some agency, and that
Speaker 1: was that I could make meaning of this experience on
Speaker 1: my own terms, in my own words.
Speaker 3: Yeah, there's certainly an idea you reference in your book
Speaker 3: Post Traumatic Growth about growings from suffering, and one of
Speaker 3: the key indicators of the ability to do that is
Speaker 3: to begin to create a narrative and a meaning out
Speaker 3: of what's happening. The other thing, I think is so
Speaker 3: instructional in what you said there, and you reference this
Speaker 3: a bunch of different times in different ways, but there
Speaker 3: is a tendency, whether it's extreme like you like, I
Speaker 3: have leukemia and the thought becomes, when I get better,
Speaker 3: then I will X, or in our own lives, as
Speaker 3: you say, there was even some of that before. When
Speaker 3: I get out of college, I will, Then when I
Speaker 3: get promoted, we all do it. Then I'll be a
Speaker 3: happy and b then I'll do what I want to do.
Speaker 3: Then I'll do what's important to me. And I think
Speaker 3: so much of what you learned, and you say so
Speaker 3: eloquently in the book, is that strateg that she doesn't work.
Speaker 3: There's a line somewhere where you say around illness, I
Speaker 3: had to learn not to move away from illness, but
Speaker 3: to move forward with it. Yeah, yeah, you know, And
Speaker 3: I think that's just a really powerful.
Speaker 1: Idea, absolutely, And I do think, you know, we often
Speaker 1: feel like we need to check certain boxes or climb
Speaker 1: certain rungs in order to give ourselves permission to do
Speaker 1: something that we actually want to do. And I think,
Speaker 1: you know, one of the things that was most interesting
Speaker 1: to me in that first year of illness was how
Speaker 1: quickly my priorities reshuffled themselves. I had very limited energy.
Speaker 1: I was on a ton of medications. I maybe had
Speaker 1: about an hour or two or three on a very
Speaker 1: good day of usable energy. And what that meant was
Speaker 1: that I had to get very specific about who I
Speaker 1: wanted to spend that time with and what I wanted
Speaker 1: to do during that time. And like I said earlier,
Speaker 1: you know, especially when you're young, but I think for
Speaker 1: most of us, we have this sense of endless time
Speaker 1: that we can get to it later and overnight, you know,
Speaker 1: my relationship to time abruptly changed, and I understood that
Speaker 1: there wasn't endless time. In fact, in my case, there
Speaker 1: was likely a very finite amount of time for me
Speaker 1: to do the things that I wanted to do. And
Speaker 1: you know, it's interesting because I'm very interested in traumatic
Speaker 1: growth now. But at the time, had you told me
Speaker 1: that you can learn something from this, I probably would
Speaker 1: have punched you in the face. So I really struggled
Speaker 1: in that first year. I would seek out illness narratives,
Speaker 1: and I'd read about someone who had gone on to
Speaker 1: run an ultra marathon, or to start some foundation, or
Speaker 1: to write, you know, a best selling book. And I
Speaker 1: hated those stories. Because they made me feel like there
Speaker 1: was a right and a wrong way to suffer. And
Speaker 1: at that time, I wasn't ready yet to figure out
Speaker 1: what I might learn from this experience, how it might
Speaker 1: enhance my life. And so what I started doing instead
Speaker 1: was researching this long lineage of bedridden artists and writers
Speaker 1: that we have who you know wrote or created from
Speaker 1: the trenches. Free to call O with someone I was
Speaker 1: very drawn to because she didn't find herself on the
Speaker 1: other side of her physical pain. She was an automobile
Speaker 1: accident when she was eighteen years old and ended up
Speaker 1: living from bed or from a wheelchair for large chunks
Speaker 1: of her life. And so what she did, you know,
Speaker 1: instead of waiting until she was better, was she began
Speaker 1: painting the self portraits from bed and the portraits of
Speaker 1: what it meant to live in a broken body and
Speaker 1: a pain body, and she engaged with her reality. And
Speaker 1: so that was, you know, very inspiring to me, and
Speaker 1: it made me realize, maybe there is a way for
Speaker 1: me to creatively engage with my circumstances without being pollyannish
Speaker 1: about it, without putting pressure on myself to find some
Speaker 1: kind of silver lining or some sort of wisdom but
Speaker 1: maybe I can just explore this. You know, the image
Speaker 1: of a kaleidoscope is what comes to mind, where you
Speaker 1: sort of twist the cylinder and you see things in
Speaker 1: a different light. And so that's what I started to
Speaker 1: do in the journals. But to your other point about
Speaker 1: waiting for permission and the lead up to my bone
Speaker 1: marrow transplant, I realized I had about two months before
Speaker 1: I entered the hospital, and I knew my chances of
Speaker 1: surviving that procedure were not very high, and I began
Speaker 1: to rethink this idea of being a journalist. And of
Speaker 1: course there was no way for me to be a
Speaker 1: work correspondent or to travel to some place. I couldn't
Speaker 1: even leave my hospital room. But I began to think
Speaker 1: about what I could report were on from the front
Speaker 1: lines of my hospital bed, and just that thought experiment
Speaker 1: alone opened up my entire world.
Speaker 4: I love that, and I love that you write about
Speaker 4: the power of story. You talk about how it helps
Speaker 4: from reducing our life to just inevitability, you know, or
Speaker 4: something to that effect. The other thing I hear when
Speaker 4: you talk about this is that you weren't looking for meaning.
Speaker 4: You were making meaning, like there's agency in you having
Speaker 4: a perspective on what was happening, and beginning to connect
Speaker 4: with that, and beginning to own that and write about it.
Speaker 4: The meaning was yours to make like you were able
Speaker 4: to show up with what was happening in a way
Speaker 4: that felt healing and engaging to you, and that that
Speaker 4: was powerful, and that was it. It wasn't like you
Speaker 4: had to go find some meaning or find some purpose,
Speaker 4: or it wasn't a passive thing.
Speaker 1: It's very active, absolutely, And you spend enough time in
Speaker 1: hospitals and you very quickly learned that you are not
Speaker 1: the only one suffering, even though it can feel that way,
Speaker 1: even though it can feel impossible to think that anything
Speaker 1: else is happening in the world when you're sick yourself
Speaker 1: or when you're sitting next to the bedside of a
Speaker 1: loved one who's ill. And you know, I think ultimately
Speaker 1: that's what drew me to writing, first as a reader
Speaker 1: and then later as a writer myself. It's that, you know,
Speaker 1: when we dare to tell the unvarnished truth, be it
Speaker 1: a memoir or in a work of fiction, we learn
Speaker 1: again and again that were more alike than we are different.
Speaker 3: There's an idea in a lot of spiritual circles where
Speaker 3: a distinction is made between pain and suffering. I'll just
Speaker 3: sort of lay it out, but I'd really love to
Speaker 3: hear your opinion on it. And the idea is essentially
Speaker 3: that there is pain in life. We're all going to
Speaker 3: have it, right, You had an enormous amount of it,
Speaker 3: you know, an amount of pain that scares me frankly, right,
Speaker 3: But that there is an additional layer that goes on
Speaker 3: top of that pain that some people would call so
Speaker 3: and it's the mental things that we layer on top
Speaker 3: of it. And so some of it would be the fear,
Speaker 3: some of it would be the jealousy of other people,
Speaker 3: some of it would be the ways we resist it.
Speaker 3: And that there is a way to while still being
Speaker 3: in pain and acknowledging that that pain is extraordinarily real
Speaker 3: also lessen the total amount of suffering that goes into
Speaker 3: that experience. And I'm just curious, does that ring true
Speaker 3: or resonate with you?
Speaker 1: Absolutely? I think that's been a core part of how
Speaker 1: I've endured these different experiences. You know, physical pain is
Speaker 1: not something that we always have control over. Suffering is
Speaker 1: something we do have agency over to some extent, you know,
Speaker 1: how we suffer. Maybe the question isn't whether we suffer
Speaker 1: or whether we don't, but how we engage with that suffering.
Speaker 1: And so for me, you know, creativity has always been
Speaker 1: and my way of suffering on my terms and in
Speaker 1: a way that instead of feeling like I'm prisoned by
Speaker 1: my suffering, unlocks not only the suffering for me, but
Speaker 1: often the world around me.
Speaker 3: We were talking yesterday with your agent, Richard Pine, and well,
Speaker 3: I'll let you take this one. Yeah, Actually I think
Speaker 3: it's better to come from you.
Speaker 4: Well, I just thought he posts such an interesting question
Speaker 4: because I mentioned to him, I was like, it's like
Speaker 4: as bravery, her courage and her bravery. And he said,
Speaker 4: you know, I wonder if she would describe herself that way.
Speaker 4: He said, like, I feel like people that have had
Speaker 4: to endure a lot of pain and inevitable suffering maybe
Speaker 4: just don't see that there was a choice to show
Speaker 4: up or not and in how you show up, or
Speaker 4: maybe there's just a desire to be normal, you know,
Speaker 4: and not be labeled as something like brave. And so
Speaker 4: it just really got me thinking about a lot of
Speaker 4: different aspects of that, and it did make me curious
Speaker 4: to know, like when I say, like, gosh, you strike
Speaker 4: me as so brave, Like how how does that land
Speaker 4: on you? And how do you consider yourself?
Speaker 1: My answer to that now is very different than it
Speaker 1: would have been ten years ago. But I think, you know,
Speaker 1: in general, we often conflate the hero's journey with the
Speaker 1: survivor's journey survivor of an illness or some other kind
Speaker 1: of heartbreak or difficulty that brings us to the floor.
Speaker 1: And so when I first got sick, I really resisted
Speaker 1: the idea of anyone calling me brave or inspiring because
Speaker 1: I felt like this is not a circumstance that I
Speaker 1: had chosen, and I didn't feel brave or strong or inspiring.
Speaker 1: I felt like I was in the belly of the
Speaker 1: beast and I was really struggling, and I couldn't really
Speaker 1: see a way forward for myself. What I do feel
Speaker 1: proud of and where I will accept that word bravery
Speaker 1: is not, you know, the mere fact of having been
Speaker 1: sick or having endured some kind of pain. It's, you know,
Speaker 1: where I see that strength is in our response to
Speaker 1: the inciting event. So I felt brave when I began
Speaker 1: writing in the hospital. I felt strong when I turned
Speaker 1: it into this column that I later went on to write,
Speaker 1: I felt not like a hero. I don't think I've
Speaker 1: ever felt like a hero, and I'd be very suspicious
Speaker 1: of anyone who does think of themselves as a hero.
Speaker 1: But I felt courageous when in the aftermath of my illness,
Speaker 1: when I was really trying to figure out who I
Speaker 1: was and what I wanted to do with my life,
Speaker 1: I made a choice to take things into my own
Speaker 1: hands and to embark on a very long, slightly and
Speaker 1: advisable broad trip that I went on because in those moments,
Speaker 1: I was choosing something I was not the passive agent,
Speaker 1: and an experience I wouldn't have opted for. I was active,
Speaker 1: I was in I was making a distessions.
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Speaker 3: of the things I'm always interested in is what is
Speaker 3: it that causes some people when faced with enormous difficulty
Speaker 3: too in some way I want to be careful with
Speaker 3: my words here, but they're able to make something generative
Speaker 3: out of it, and other people, when faced with extraordinary difficulty,
Speaker 3: are crushed by it. It's a variation on a question
Speaker 3: I've always had as a recovering addict, like why are
Speaker 3: some of us getting sober? Why are some of us not?
Speaker 3: There are some things we can certainly point to the
Speaker 3: level of support that you have, the access to the
Speaker 3: care that you have, the quality of the care. We
Speaker 3: can point those out and see those, and yet we
Speaker 3: can find examples on both sides of the coin of
Speaker 3: people who had all that and still, you know, we're
Speaker 3: sort of emotionally mentally crushed by and on the other hand,
Speaker 3: people who had none of that. I'm just curious, did
Speaker 3: you see that in the world that you were in,
Speaker 3: and was there anything in seeing that, any pattern you
Speaker 3: saw in the people that were Again, I like your
Speaker 3: distinction between surviving and a hero's journey, and maybe let's
Speaker 3: step it back from hero's journey, right, we don't need
Speaker 3: to be that ambitious with the word but more than
Speaker 3: just surviving.
Speaker 1: So I became obsessed with this very question when I
Speaker 1: found myself on paper, finally cancer free, but off paper
Speaker 1: more lost than I'd ever been. And I was really
Speaker 1: struggling with re entry, which is a word that we
Speaker 1: use in the context of veterans returning for more, but
Speaker 1: we don't use it as much in the context of
Speaker 1: surviving a traumatic experience like a long illness. And I
Speaker 1: expected to feel grateful for that, I expected to feel
Speaker 1: stronger for it, and it was very opposite of that.
Speaker 1: I had never been more lost in my life. I
Speaker 1: knew that I couldn't go back to the person I'd
Speaker 1: been pre illness, and I was no longer a patient.
Speaker 1: But I had no idea who I was. I had
Speaker 1: no idea how to live my life for what that
Speaker 1: would look like. And I began to take a great
Speaker 1: interest in people who had figured out how to move
Speaker 1: forward without staying crystallized and in that trauma, because we
Speaker 1: all know people and I was one of them for
Speaker 1: a very long time who stay in that survival mode.
Speaker 1: And for a very long time, I was more comfortable
Speaker 1: in survival mode than I was dealing with everyday life.
Speaker 1: But I knew intuitively that the key for me was
Speaker 1: going to be to figure out how to shift out
Speaker 1: of surviving and into some form of living. I just
Speaker 1: didn't know how to do that yet. And so what
Speaker 1: that looked like for me was going on this road
Speaker 1: trip and interviewing different people who had experienced all kinds
Speaker 1: of life interruptions. I interviewed a man on death row
Speaker 1: in Texas who, at the time that I met him,
Speaker 1: had spent more than half of his life in solitary confinement,
Speaker 1: facing the death penalty, and had no expectation of ever,
Speaker 1: you know, getting out. And something that struck me about
Speaker 1: him was the way that he talked about community. One
Speaker 1: of the very first questions he asked me was, how
Speaker 1: did you spend all that time in the hospital? And
Speaker 1: I said, I played a lot of scrabble, and he
Speaker 1: responded me too, and explained to me that he and
Speaker 1: his neighboring cellmates would make boards out of scraps of
Speaker 1: paper and call their plays out to each other through
Speaker 1: you know, the mail slots and their cells. And that
Speaker 1: made a lot of sense to me, because I think
Speaker 1: that community, whether it's a pre existing community or one
Speaker 1: that you have to construct for yourself in the aftermath
Speaker 1: of an experience, is crucial to figuring out how to
Speaker 1: move forward, because of course you can't really move on
Speaker 1: from a trauma, like we said, you have to learn
Speaker 1: to carry that forward with you. And so for me,
Speaker 1: you know, aside from my wonderful friends and family, find
Speaker 1: people who had been where I'd been, who were where
Speaker 1: I was, was really important, and being able to have
Speaker 1: frank conversations about what that experience was like, where I
Speaker 1: didn't feel the self imposed pressure to say I'm alive,
Speaker 1: I'm so grateful, which of course on some level I was,
Speaker 1: but was glossing over all the complexity and the day
Speaker 1: to day challenges of really figuring out what it meant
Speaker 1: to take my place among the living. The second thing
Speaker 1: I'd say is that when you've endured a trauma, the
Speaker 1: impulse can be to stay in a very small, safe place,
Speaker 1: because when you've had the ceiling cave in on you,
Speaker 1: you no longer assume structural stability, and that can make
Speaker 1: the world a scary place to be. It can make
Speaker 1: opening your heart up a very scary act, because it's
Speaker 1: only natural to want to protect yourself against new loss
Speaker 1: when you've endured a loss. And so for me, it
Speaker 1: was really a process of learning not to do what
Speaker 1: was my impulse, which was to dodge any sort of discomfort,
Speaker 1: to numb myself against it, to paper over it, but
Speaker 1: to really allow myself the time to engage with that grief,
Speaker 1: with those losses, with that trauma, and to find a
Speaker 1: sort of container where I could explore that distance between
Speaker 1: no longer and not yet, and to learn to embrace
Speaker 1: existing in that messy middle where I didn't know who
Speaker 1: I was, I didn't know where I was going, I
Speaker 1: didn't know what my life was going to be, and
Speaker 1: ultimately to come to think of discomfort not as a
Speaker 1: bad thing, but as a necessary passage when you're in transition.
Speaker 3: Did you say between no longer and not yet? Yeah,
Speaker 3: that's a beautiful phrase I sometimes talk about that, you know,
Speaker 3: cliche like when one door closes, another one opens, which
Speaker 3: I do believe generally to be true, but I often
Speaker 3: say what is missed is there's a there's often a
Speaker 3: long dark hallway between them, like the one door is closed,
Speaker 3: the other is not open yet, and it's just scary in.
Speaker 1: There, absolutely, you know. And the title of the book
Speaker 1: is between two kingdoms, because ultimately I believe most of
Speaker 1: us live large chunks of our lives in the in between,
Speaker 1: in transition, in that space between no longer and not yet,
Speaker 1: And once we can learn to get comfortable with that discomfort,
Speaker 1: with that sense of uncertainty, there's a lot of richness
Speaker 1: to be gained from looking around when you're in that
Speaker 1: liminal space and really, you know, boring into the unknown.
Speaker 1: And as someone who you know, when we open this
Speaker 1: conversation about the two wolves, copped to having a great
Speaker 1: degree of anxiety about uncertainty, my impulse is to rush
Speaker 1: through those transitions. I don't want to be in that
Speaker 1: space between no longer and not yet. I want to
Speaker 1: know exactly what I'm doing and where I'm going, and
Speaker 1: what my day is going to look like, and my
Speaker 1: work for whatever reason. For the last decade has been
Speaker 1: being forced to not rush through those transitional moments and
Speaker 1: really learning to make a life for myself and a
Speaker 1: home for myself in the messy middle.
Speaker 4: Yeah, you say, to learn to swim in the ocean
Speaker 4: of not knowing. This is my constant work. So when
Speaker 4: you find yourself running up against that edge of like
Speaker 4: wanting to rush through it, but knowing that being present
Speaker 4: with it is the way to some freedom and richness
Speaker 4: for yourself.
Speaker 1: Are there practices?
Speaker 4: Are there ideas you orient towards, Like how do you
Speaker 4: sort of remind yourself at a cellular level to be
Speaker 4: year and to open to that uncertainty.
Speaker 1: How do you do that? Well? I think the first
Speaker 1: thing is rooted in historical understanding of my maladaptive coping mechanisms,
Speaker 1: which is that when I try to resist grief, when
Speaker 1: I try to resist discomfort, I end up injuring myself more. Yeah.
Speaker 1: So that is my bedrock knowledge that I've gained by
Speaker 1: not using tools that serve me and savoring that transition.
Speaker 1: Journaling has been a huge part of how on a
Speaker 1: you know, day to day, I take a little time
Speaker 1: for myself to tap into the subconscious to write in
Speaker 1: stream of consciousness and to allow you know, whatever pressure
Speaker 1: valve needs to be released to have a little respite.
Speaker 1: And I love the journal. I know journaling gets a
Speaker 1: bad rap as the sort of infantile thing that children
Speaker 1: do with a diary and a little locket, But to me,
Speaker 1: the journal feels like a rare space in today's world
Speaker 1: where we really get to show up as our most unexamined, unedited,
Speaker 1: unvarnished selves and where we get to just write. And
Speaker 1: so I find that all the messiness for me happens
Speaker 1: in the journal. And that's the whole point of it.
Speaker 1: It's not for anybody else's eyes, it's not for public consumption.
Speaker 1: There's no end goal to it. It's just pure exploration. Yeah,
Speaker 1: And so for me it's journaling. Sometimes it's walking or
Speaker 1: being in nature. But I need to have those daily
Speaker 1: commitments to the messiness in order to stay anchored in it.
Speaker 4: What I hear you say is that like journaling is
Speaker 4: a place where you have given yourself permission to let
Speaker 4: whatever's here be here and to let it express itself.
Speaker 4: I can really relate to that. I mean, I have
Speaker 4: a daily mindfulness meditation practice where that's kind of my
Speaker 4: sacred time to just find whatever's going on inside of me.
Speaker 4: I try to connect with it in my body so
Speaker 4: it's not so abstract, but just to work with not
Speaker 4: being so hostile towards it, and work with just sort
Speaker 4: of allowing it to be there and express itself. Yeah,
Speaker 4: I mean, I just think that's so powerful because I mean, again,
Speaker 4: in mindfulness we talk about like turning towards our pain
Speaker 4: versus away from it. I mean, I'm a recovering addict
Speaker 4: as well, and I've spent a lot of my life
Speaker 4: just orienting around comfort and trying to avoid pain. Thinking
Speaker 4: 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.
Speaker 4: So now just that daily practice of turning towards whatever is,
Speaker 4: and I still find myself resisting it. So the daily
Speaker 4: practice is to try to drop that resistance into open
Speaker 4: to it. It seems like a powerful way to relate
Speaker 4: to your grief and relate to your pain.
Speaker 3: You say at one point, the idea of striving for
Speaker 3: some beautiful, perfect state of wellness mires us in eternal dissatisfaction,
Speaker 3: a goal forever out of reach. To be well now
Speaker 3: is to learn to accept whatever body and mind I
Speaker 3: currently have. And I think that speaks to what you
Speaker 3: were just saying, Ginny, and what you're saying about being
Speaker 3: with what is uncomfortable and recognizing like, this is what
Speaker 3: is here. I interviewed the author Andrew Solomon yesterday, who's
Speaker 3: written very eloquently about families and depression, and something stands
Speaker 3: out is he talks about being in depression and recognizing like,
Speaker 3: you can't wait till it feels like it's over, because
Speaker 3: time is happening. Your life is always what is right here,
Speaker 3: right now, even when it's really unpleasant, that is what
Speaker 3: we have to work with.
Speaker 1: We don't get to skip over the hard work of
Speaker 1: healing and grieving or to stow away the uncomfortable or
Speaker 1: painful parts, because, as we know, the more we do that, yeah,
Speaker 1: the more it comes back for blood. Yeah. And so
Speaker 1: you know, before we started this conversation, I was sharing
Speaker 1: with you what I do when I don't want to write,
Speaker 1: which is pretty much most days the week, if I'm
Speaker 1: being honest, in part because it's not fun necessarily to
Speaker 1: sit with that discomfort. Who wants to do that? Sure,
Speaker 1: you know it's much more enjoyable to binge watch whatever
Speaker 1: newest show is on Netflix, right, And so what I
Speaker 1: often do, and this is a practice the poet Marie
Speaker 1: how does, is when I'm in that space of really
Speaker 1: resisting whatever it is that I have to say or
Speaker 1: don't know how to say, I write in my non
Speaker 1: dominant hand and I say I don't want to write
Speaker 1: about and then I write into that. And so there
Speaker 1: are so many little tools like that that I've had
Speaker 1: to cultivate, not because I'm some peaceful mountaintop guru that
Speaker 1: has learned to, you know, lovingly coexist with pain, but
Speaker 1: because I have to work at it every day, and
Speaker 1: because my survival is tied to it.
Speaker 3: I think that's such a beautiful point, because I do
Speaker 3: think we are in a We're in a culture that
Speaker 3: it's cultural and it's human to want easy answers, to
Speaker 3: believe that pain can be banished, to believe that if
Speaker 3: you just do this practice or that practice like it
Speaker 3: will life will be great, right, And and I just
Speaker 3: I don't believe that, you know, And it's we talk
Speaker 3: about these things, and we talk about difficulties we've gone through,
Speaker 3: and yet being in difficult times it is just being
Speaker 3: in difficult times. Being in pain is just being in pain.
Speaker 3: There are more, there are more and less skillful ways
Speaker 3: to do it. But even I think it's back to
Speaker 3: what we talked about earlier, between pain and suffering. Even
Speaker 3: if you're skillfully relating the best of your ability to
Speaker 3: these challenges that we're talking about, they are still challenges
Speaker 3: and they are still deeply unpleasant.
Speaker 1: And life keeps unfolding, and time keeps unfolding, and when
Speaker 1: that comes new beginnings and new challenges and new difficulties. So,
Speaker 1: you know, we open this conversation speaking about the fear
Speaker 1: of some future threat happening and the belief that you
Speaker 1: can't handle it. And so for me, much of the
Speaker 1: last ten years was waiting for that ceiling to cave back,
Speaker 1: in fearing the possibility that one day might leukemia might return.
Speaker 1: And I had to, you know, do battle with that
Speaker 1: fear and that anxiety every day. And last year, right
Speaker 1: as I had sort of started to trust the structural stability,
Speaker 1: my most feared thing did happen. I learned that my
Speaker 1: leukemia had returned. And it's so interesting because you know,
Speaker 1: I've been the sickest I've ever been in the last year,
Speaker 1: I had a second bone marrow transplant, and while I'm
Speaker 1: doing okay right now, I also learned that this time
Speaker 1: there wasn't going to be an end date in sight.
Speaker 1: I'm going to be in treatment indefinitely for the rest
Speaker 1: of my life. And that word indefinite initially was so
Speaker 1: crushing to me. But I was saying this to my
Speaker 1: husband the other day. There's this strange freedom that I
Speaker 1: feel now that my most feared thing has come to pass,
Speaker 1: because I just have to learn to live with it now. Ah,
Speaker 1: there's no expectation that I will ever be on the
Speaker 1: other side of it. And while that was crushing in
Speaker 1: a lot of ways, I have no choice but to
Speaker 1: accept it. I have no choice but to coexist with
Speaker 1: the facts of my mortality. I won't say that my
Speaker 1: anxiety has dissipated, but it's shape shifted.
Speaker 4: Can I connect with you about that point, just about
Speaker 4: how that has shown up in my life? So for
Speaker 4: my entire life, the death of my mother was the
Speaker 4: thing I feared most. I just did not know how
Speaker 4: I would go on. I had grown to fear it
Speaker 4: as just this big looming monster that, you know, unless
Speaker 4: I died first, it was going to happen one day,
Speaker 4: and I didn't know how I would survive. I couldn't
Speaker 4: see the other side of it. And she passed away
Speaker 4: in October, and here I am, you know, it was
Speaker 4: and still ken bets full of grief and a lot
Speaker 4: of sadness the way you write about losing Melissa and
Speaker 4: like the nevers, like life goes on, but she'll never
Speaker 4: experience the things that you're experiencing, or that one should
Speaker 4: experience in life. You know, I think about that. It's
Speaker 4: the finality of her death that just I still can't
Speaker 4: wrap my mind and head around. So not to make
Speaker 4: light of it, and not to say that, oh it
Speaker 4: was nothing. It was. It was awful, and it is
Speaker 4: awful in moments, and I'm still here, like there's a
Speaker 4: sense of having had it happen that doesn't make sense,
Speaker 4: you know what I mean. And it didn't destroy you
Speaker 4: right now, like you're still around to talk about it.
Speaker 4: It's like you're looking around like, Okay, it happens. Here
Speaker 4: I am. There is a freedom and that isn't there.
Speaker 4: You live with the awful, but here you.
Speaker 1: Are, and we adapt and we adapt. Yeah, you know,
Speaker 1: the word resilience gets thrown around but for us to
Speaker 1: be here in this room having this conversation, our ancestors
Speaker 1: had to survive so many things. We have resilience and
Speaker 1: adaptability encoded in our day and so you know, thank
Speaker 1: you for sharing that. And I so deeply understand it.
Speaker 1: And you know, I at my lowest point last summer
Speaker 1: when I learned this news. I was back in treatment.
Speaker 1: I was a walker, which at thirty three is not
Speaker 1: the thing that you expect that you'll be doing. And
Speaker 1: I had this really difficult moment of realizing, you know,
Speaker 1: this quality of life is not the quality of life
Speaker 1: that I want for myself, and I don't know how
Speaker 1: to go on. And it was this really scary moment
Speaker 1: because I had never really reached the limits of what
Speaker 1: I thought I could endure up until that moment, and
Speaker 1: I couldn't do, you know, the things that I loved.
Speaker 1: For a while, I was on a medication that caused
Speaker 1: my vision to double, and so I couldn't write, I
Speaker 1: couldn't journal, and that felt like such a deep loss.
Speaker 1: And at the time I thought, I don't know if
Speaker 1: I'll ever be able to do this thing that I love.
Speaker 1: And yet we adapt. I started using a voice transcription
Speaker 1: app on my phone. I started painting in the place
Speaker 1: of writing, which is not something I ever thought I
Speaker 1: was going to do. And painting has become this hugely
Speaker 1: important part of my life and now career in a
Speaker 1: very very bizarre, unexpected way. And so that's the thing
Speaker 1: that I return to. It's that, you know, when we
Speaker 1: lose some part of ourselves that feels integral to who
Speaker 1: we are, if we can get quiet enough and observant
Speaker 1: enough to notice, what other things start to, you know,
Speaker 1: appear on the peripheries of that absence. We learned that, well,
Speaker 1: you know, you can't go back to the way your
Speaker 1: life was before. There are new ways of living, new
Speaker 1: ways of surviving, new ways of interacting with the world
Speaker 1: around you. And so that's what I've been doing this year,
Speaker 1: is learning to adapt. And on some days it feels
Speaker 1: incredibly challenging, and on other days it feels thrilling. I
Speaker 1: feel almost bullet proof because the ceiling has caved in,
Speaker 1: and I'm okay. The other day, I was walking my
Speaker 1: dog and it was a beautiful sunny day and I'm
Speaker 1: no longer using my walker, and I just had, you know,
Speaker 1: one of these great New York moments. Someone was playing
Speaker 1: something on a boombox, and I had this moment where
Speaker 1: I turned to my dog and I said, out loud,
Speaker 1: I said, I am outside and I'm living. And it
Speaker 1: was such a small, thrilling, ordinary moment, and it met everything.
Speaker 3: Do you think that coming back to a diagnosis a
Speaker 3: second time, to leukemia returning, do you think that you
Speaker 3: are more prepared to handle it than you were you
Speaker 3: had leukemia. Then you went on this journey across country
Speaker 3: of interviewing these people, then you wrote this memoir which
Speaker 3: you're mining all that for what you learned, what became
Speaker 3: of you, right, and now you're sort of like, all right,
Speaker 3: I got to do it again. And I assume that
Speaker 3: there's some ways that you feel more prepared and in
Speaker 3: some way maybe worse.
Speaker 1: Yeah, all of those things, you know, I think some
Speaker 1: of it is muscle memory. For example, as soon as
Speaker 1: I relapsed, you know, my husband and I within forty
Speaker 1: eight hours, had to pack up our things, leave our home,
Speaker 1: we home, our dogs, which was the most heartbreaking thing.
Speaker 1: And I had this feeling of you know, I've been
Speaker 1: here before, I've had this moment of my life imploding overnight,
Speaker 1: and none of that gets easier. Yeah, but also I
Speaker 1: think this time I went into it without any allusions
Speaker 1: that I could hold onto the plans that I had,
Speaker 1: that I could hold on to the person i'd been
Speaker 1: even forty eight hours before, and with that came an
Speaker 1: openness to everything, to the terror, to the beauty, to
Speaker 1: maybe even the learnings, and that made it easier. The
Speaker 1: last time I went through that, I was clinging to
Speaker 1: the person that i'd then that I was no longer,
Speaker 1: and I was constantly comparing myself to that person. And
Speaker 1: this time, you know, I just let it all happen
Speaker 1: to me, and instead of trying to control or trying
Speaker 1: to resist, I you know, tried to flow with it,
Speaker 1: and that made things a lot easier. The other thing
Speaker 1: I feel like I learned, and I alluded to this
Speaker 1: earlier from the last time, was how crucial community is.
Speaker 1: The thing I'm proudest of, my proudest accomplishment in the
Speaker 1: last decade is the community that I've built of family
Speaker 1: of friends of chosen, family of fellow artists and writers
Speaker 1: who I learned from, who inspire me every day. And
Speaker 1: the thing about community is you can't just create one
Speaker 1: overnight in a moment of need and then expect people
Speaker 1: to be there for you. Right. Ideally, your initial way
Speaker 1: of showing up and a community is one of generosity
Speaker 1: and one of extending support long without expectation of ever
Speaker 1: needing anything in return. And so this time around, well,
Speaker 1: you know, illness, even when you're surrounded by people, can
Speaker 1: feel isolating because you alone, live in your body and
Speaker 1: know what's happening. And there I never once felt lonely.
Speaker 1: I was surrounded by more love than I ever dare
Speaker 1: dream possible, and ultimately for me, you know, I feel
Speaker 1: like love is the crucial, essential ingredient to enduring.
Speaker 4: You visit on your road trip Catherine, and she speaks
Speaker 4: a bit about this going through, you know, something that
Speaker 4: she thought she could never survive, and yet here she
Speaker 4: is surviving.
Speaker 1: You know.
Speaker 4: She says, you have to shift from the gloom and
Speaker 4: doom and focus instead on what you love. She told
Speaker 4: me that's all you can do in the face of
Speaker 4: these things. Love the people around you, love the life
Speaker 4: you have. I can't think of a more powerful response
Speaker 4: to life's sorrows than loving.
Speaker 1: I love by those words, and Catherine has become a
Speaker 1: dear friend and a teacher to me. She lost her
Speaker 1: twenty seven year old son to suicide, and then shortly
Speaker 1: thereafter was diagnosed with a very advanced form of cancer.
Speaker 1: And long after the book was finished, I actually ultimately
Speaker 1: went back to California to teach a creative writing course
Speaker 1: with her for a semester to a group of sixteen
Speaker 1: year old students. And I think, to me, she's an
Speaker 1: embodiment of leading with love. She has every reason in
Speaker 1: the world to be someone who feels betrayed by the world,
Speaker 1: who feels embittered by her losses, who might not even
Speaker 1: find a reason to get out of bed, and yet
Speaker 1: she has planted these seeds of love in this students
Speaker 1: that she teaches in her children and now grandchildren, and
Speaker 1: the perfect strangers like myself who she encounters and takes
Speaker 1: under her wing. And so I try to live my
Speaker 1: life in such a way where attempt to emulate Catherine,
Speaker 1: an attempt to focus on the love and to cultivate it.
Speaker 3: I was going to say, we were listening to a
Speaker 3: song this morning by one of my favorite artists, Jason
Speaker 3: Isbel and he's got a song called I Don't know
Speaker 3: what it's called.
Speaker 4: Well, you're saying this. I literally was thinking about these
Speaker 4: lyrics I think this is what you're about to say
Speaker 4: 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
Speaker 4: when you feel like giving up a song to sing
Speaker 4: a tale, to tell something to love. It'll serve you well.
Speaker 1: I love that so much and I really live my
Speaker 1: life by that. I have a hard time with gratitude
Speaker 1: journals or gratitude lists, just because, especially as a cancer patient,
Speaker 1: you're kind of bombarded with messages of gratitude. Where I
Speaker 1: have been able to anchor myself as a practice of
Speaker 1: seeking out small joys and small loves, because you could
Speaker 1: always find something to love the smallest little thing, you know.
Speaker 1: I mentioned I like to play scrabble. When I was
Speaker 1: in the bone marrow transplant last year, for about five weeks,
Speaker 1: I befriended one of my nurses and she would come
Speaker 1: and play scrabble with me during her lunch breaks, and
Speaker 1: we would get fiercely competitive and we would cuss each
Speaker 1: other out, and it was just such a delight and
Speaker 1: such a joy and also such an act of love
Speaker 1: for her to choose to spend her precious you know,
Speaker 1: fifteen minutes or whatever it was with me when that
Speaker 1: was her job.
Speaker 3: Who wouldn't want to spend.
Speaker 4: I completely agree, but I yeah, yeah, I know what
Speaker 4: she means.
Speaker 1: But I believe that you don't have to find the
Speaker 1: silver lining. You don't have to feel grateful for some
Speaker 1: terrible thing that has happened to you. But we can
Speaker 1: all find a small thing to love.
Speaker 4: Yeah, because the beautiful and the terrible coexist. Yeah, right,
Speaker 4: But how powerful to hear you know you talk about
Speaker 4: it in that way. There's another connection I want to make.
Speaker 4: There's something else, just really beautiful and rare that I
Speaker 4: took from your book and I take from your story
Speaker 4: and connected to community, which is the community that you
Speaker 4: built in the hospital with the fellow patients that were
Speaker 4: suffering in their own cancer journeys. But you all seem
Speaker 4: to connect with one another in the real messy pain
Speaker 4: of it all in the most vulnerable and open way,
Speaker 4: and therefore found a closenessant connection with one another that
Speaker 4: seemed so sacred and so precious and so supportive to
Speaker 4: you all. I mean, you were in the hotel room
Speaker 4: in Vegas. I remember, like that scene in your book
Speaker 4: when you're talking about all of these things that are
Speaker 4: like even at that point you hadn't cheared with one another,
Speaker 4: but then at that point decided to just how much
Speaker 4: closer that even brought you to one another. I mean
Speaker 4: the way you then travel around the country, opening yourself
Speaker 4: up to connect your pain with the pain that those
Speaker 4: you visit have experienced, and then how you found your
Speaker 4: way forward how they found their way forward. You know,
Speaker 4: the community you seem to have built for yourself is
Speaker 4: built on openness and honesty about your pain. It makes
Speaker 4: me think about Brene Brown and how she talks about like,
Speaker 4: you know, fitting in is not about like fitting yourself
Speaker 4: into some mold. It's about showing up in who you
Speaker 4: 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.
Speaker 1: I'm not comfortable with vulnerability. I have to constantly overcome
Speaker 1: my own instinct to self protect in order to open
Speaker 1: myself up to you know, cultivate relationships that are born
Speaker 1: of a kind of honest, deep sharing, in part because
Speaker 1: I know those are really the only kinds of relationships
Speaker 1: I'm interested in having and that feel worth having. But
Speaker 1: you know, this crew of friends who I've befriended, there
Speaker 1: were ten of us. Only three of us are still alive.
Speaker 1: And you know, my impulse after that was to never
Speaker 1: befriend someone who was sick, because I couldn't bear the
Speaker 1: thought of losing a beloved again. And yet, you know,
Speaker 1: my favorite moments in my life have been shared with
Speaker 1: that group of people, and they really taught me what
Speaker 1: friendship meant. And I would suffer that loss and that
Speaker 1: grief and that heartache over and over and over again
Speaker 1: to just get one day with them. But I remember,
Speaker 1: you know, early on and my friendship with this group
Speaker 1: of people. They were all in their twenties and early thirties,
Speaker 1: and we'd all been in treatment for quite a long time,
Speaker 1: to the point that we were going to you know,
Speaker 1: chemotherapy by ourselves and trying to do things a little
Speaker 1: more independently, and we formed a buddy system together. We
Speaker 1: would accompany each other to radiation, we would answer phone
Speaker 1: calls in the middle of the night when the panic
Speaker 1: attack struck. We always showed up when there was bad news,
Speaker 1: and there was this shared sense of understanding that went
Speaker 1: beyond the strange twist and fate and malignant cells that
Speaker 1: had yoked us together. But that was really grounded in
Speaker 1: something deeper, which was a desire to, like we said earlier,
Speaker 1: not to survive, but to make as rich and as
Speaker 1: beautiful and as fun of a life as we could,
Speaker 1: even within the fluorescence of the hospital. And one of
Speaker 1: the young women in that group of friends, her name
Speaker 1: was Angelie, and she had no one. She was an orphan.
Speaker 1: Her only sibling she reached out to as a potential
Speaker 1: bone marrow donor, and he never returned her calls. She
Speaker 1: was an immigrant, she had had a really hard life,
Speaker 1: and she, unlike me, you know, after her first bone
Speaker 1: marrow transplant, learned that it hadn't worked, and she had
Speaker 1: a few short months to live. And I'll never forget
Speaker 1: that last week in the hospice ward at Bellevue Hospital,
Speaker 1: because she was there and all of us were with
Speaker 1: her in our varying stages of baldness, and a hospice
Speaker 1: nurse turned to me and said, I've never seen anything
Speaker 1: like this before. I've never seen a patient who is
Speaker 1: surrounded by fellow patients in their final moments. And to me,
Speaker 1: you know, that's what friendship is. It's, you know, the
Speaker 1: moment of accountability that all relationships are toward, which is
Speaker 1: how we show up in the midst of the hardest things.
Speaker 1: And they taught me that in spades over and over again,
Speaker 1: that even when our instinct is to self protect or
Speaker 1: to shy away from something that might break your heart,
Speaker 1: it's always worth it to move through that and to
Speaker 1: be the person that shows up. And it's an honor
Speaker 1: to grieve. And I'm not the first person who said this,
Speaker 1: and it might be a cliche, but I think it's
Speaker 1: a true one, which is that grief is a measure
Speaker 1: of how deeply we've loved.
Speaker 3: Yep. Yeah, And for someone who describes herself as not
Speaker 3: naturally good at connecting with people, you have done an
Speaker 3: extraordinary job. If we had more time, I would like
Speaker 3: to have a whole interview about how you have done it,
Speaker 3: because it's remarkable. With the cancer patients, with the people
Speaker 3: across the country, with fellow writers like you really do
Speaker 3: have a knack of nurturing community. So even though you
Speaker 3: may not think you're good at it from an outside perspective,
Speaker 3: you clearly are. You know, you clearly have figured that
Speaker 3: 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
Speaker 3: cancer patients. That sort of reminded me of my early
Speaker 3: days in recovery from heroin addiction. There's a similar camaraderie
Speaker 3: of people, you know, who are facing not quite as
Speaker 3: dire a prognosis, but being a homeless heroin addict's a
Speaker 3: fairly dire place.
Speaker 1: Say it's as dire.
Speaker 3: Yeah, so the sticks our life or that. And when
Speaker 3: they are like that, there is a closeness that emerges.
Speaker 3: And there are times that I miss those early days
Speaker 3: of that because there was something so elemental, you know,
Speaker 3: and just visceral about those connections.
Speaker 1: Yeah, and I think those moments, you know, you're brought
Speaker 1: down to your most savage self, you know, all the
Speaker 1: varnish has been stripped away, and vulnerability isn't really a
Speaker 1: choice when you're in that place. Yeah. Yeah, whether you
Speaker 1: 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
Speaker 4: when life feels so sort of out of control and
Speaker 4: you're in the messy middle and the uncertain and the
Speaker 4: dark hallway, that sometimes there is sort of a lifeline
Speaker 4: we can grab on to to help pull us to
Speaker 4: the other side. I don't know if that's the right
Speaker 4: way to language it or not, But you say so.
Speaker 4: These rights of passage allow us to migrate from one
Speaker 4: phase of our lif lives to another. They keep us
Speaker 4: from getting lost in transit. They show us a way
Speaker 4: to honor the space between no longer and not yet.
Speaker 4: But I have no predetermined rituals. These are mine to create.
Speaker 4: Does the role of rituals still show up in your life?
Speaker 1: And how so? Absolutely? And I have different rituals depending
Speaker 1: on the week, depending on the month. Ritual is hugely
Speaker 1: important to me. It creates a sort of sacred container
Speaker 1: when you are living in a liminal space, when you
Speaker 1: are in transition. I mean, we have all kinds of
Speaker 1: rights of passage in our culture. We have funerals, we
Speaker 1: have baby showers, we have weddings, and they mark these
Speaker 1: important transitional moments. And I think the reason that we
Speaker 1: have so many of them is because, first of all,
Speaker 1: they invoke community. Right. Often these things happen with at
Speaker 1: least one or two other humans, if not many more
Speaker 1: than that. But they all also forced us to acknowledge
Speaker 1: the transition, which is what we've been talking about, to
Speaker 1: honor what was and to honor what's, to come, even
Speaker 1: if it's unclear what that might look like. And so
Speaker 1: I have all kinds of rituals. I did another one
Speaker 1: hundred day project when I was recovering from my last
Speaker 1: Bonemero transplant, and this one, for me, was around painting.
Speaker 1: I started painting my own kind of freeda inspired, very surreal,
Speaker 1: fever dream esque self portraits when I was in the hospital,
Speaker 1: and I found a kind of language in watercolor that
Speaker 1: I couldn't express myself in any other way. And Melissa,
Speaker 1: my friend, one of my cancer comrades who's no longer
Speaker 1: with us, was an incredible watercolor artist, and she used
Speaker 1: to always say I love watercolor because it's messy and
Speaker 1: you can't control it like life. And so that has
Speaker 1: been my ritual. I make watercolors every day, no idea
Speaker 1: if there any good and I don't really care. But
Speaker 1: that's the kind of metaphor that I get to embody
Speaker 1: on a daily basis. That helps orient me, that helps
Speaker 1: me accept what I can't control, that helps me live
Speaker 1: in the mess.
Speaker 3: Well, I think that is a beautiful place to wrap up.
Speaker 3: 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
Speaker 4: this last hour or so. I've learned so much from
Speaker 4: reading your book, and it's inspired in me the intention
Speaker 4: to be brave when I feel fear or pain within
Speaker 4: my life, to be intentional about how I want to
Speaker 4: move forward, and so I just really appreciate it.
Speaker 1: Thank you both. This has been such in the honor.
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