How to pronounce "alarms"

Susan Zimmerman: Welcome, Suleika.

Suleika Jaouad: Hi, Susan.

SZ: I'm going to dive right in with "American Symphony."

I would love to first say thank you

for sharing your story with us in this gorgeous documentary.

Can you share a little bit more how this project came to be?

SJ: So the director of “American Symphony,”

Matt Heineman, who is an extraordinarily brilliant filmmaker

and a dear friend of ours,

says that if you end up with a project that you started with,

you're not doing your job right

because you weren't listening along the way.

And that proved to be true in ways that we couldn't possibly imagine.

I knew Matt through my own work.

Jon had worked with him on his last film, "The First Wave,"

that took place during the pandemic,

and he and Jon started talking about the idea

of a short process film

that was going to follow Jon as he composed what he called

“American Symphony,”

which was his reimagination of what a symphony would look like

if it were created in the 21st century.

And Jon was committed to really upturning what we think of as a symphony.

He wanted to travel all across the country to recruit jazz musicians

and blues musicians and classical musicians

and Indigenous musicians

and musicians who don't know how to read music

and to figure out how to bring them all together.

So initially, that was the film,

and about a week after we decided to move forward with that project,

on the very same day I began chemo

and the same week I learned that after a decade-long remission,

my leukemia was back,

Jon was also nominated

for a record historical number of Grammys.

And so right from the beginning of the filming process,

the initial conceit changed.

And it was the kind of project

and really a testament to Matt's style,

where we weren't too worried about figuring out what the story was.

Matt specializes in cinema verité,

and so he followed us from sun up until we went to sleep every single day

for about seven months.

And at the end of that process,

we had 1,500 hours of footage,

which, as you can imagine, is a lot of footage.

But we knew that we wanted to document all of it,

to document what it means to be living a life of contrasts,

what is required of us when we're in the belly of the beast

and how creativity and our individual

and joint, sort of, creative language inform that project.

SZ: For two people,

who are very much the directors of their own creative projects and worlds,

how did you negotiate creative control in your work with Matt Heineman,

especially in such vulnerable and personal circumstances?

SJ: You know, it wasn't easy for either of us

because we are used to,

you know, captaining our own creative ships.

But I think, you know, surrendering to the process was really important.

We didn't want to get in the way of the filming.

But we were also very much creative partners with Matt.

And I'm not sure that a film like this would have been possible

without deep trust with the filmmaker

and ongoing conversations about what we were comfortable with

and what we weren't,

and we had those conversations daily.

We had them weekly and monthly.

And the truth is

that when I decided

to participate in this film,

I had no idea if I was going to survive long enough

to actually see the finished product.

And what Jon would always say is:

if nothing else comes out of this,

we'll have the world's most beautifully shot home videos

to share with our families and loved ones.

So it was really, you know,

a process that required trust.

It required a leap of faith,

and it required surrendering the kind of creative control that we're used to.

SZ: You also shared, in a recent “Isolation Journal”:

"When the ceiling caves in, it's terrifying and disorienting.

Yet those moments have also been the most fertile stretches of personal

and creative growth for me.

A couple of months after my second bone marrow transplant,

I was rehospitalized due to complications,

and I told one of my nurses that I get my best work done there,

and I joked that it had become my favorite artist’s residency.”

Can you share more about these creative periods

during extremely challenging circumstances?

SJ: Yeah, so I want to go on record and say that, you know,

these moments when the ceiling caves in on you,

when you can no longer assume structural stability ...

don’t suddenly fill me with creative inspiration.

It's the very opposite.

I had so many plans,

both professional and personal,

before I learned of my relapse.

I was getting ready to write a reported book

that would require me to be on the road for long stretches of time.

Jon and I were talking about getting married and starting a family,

and I moved through my own version of the five stages of grief.

And the first is shock,

often mixed with fear.

And then I get to a place of defeat.

But something interesting happens

when the possibility of productivity is taken away from you.

And when I’m able to move past that grief and that fear,

and to start to get curious about the isolation

and the sense of solitude that comes with, you know,

having been brought to your knees on the floor

by some kind of life event.

Even though it doesn't feel like I'm doing something,

I'm in the chrysalis.

I'm as larval and goopy and unformed as I ever feel.

And what these periods of being extremely sick

have done for me

is that I've had to get good with my own company.

I've had to get good with quiet, with having no plans.

And of course, that's not a luxury

that we're all able to carve out for ourselves.

But when I'm able to surrender to that not knowing,

interesting things emerge.

And I had, you know, the misfortune and privilege

of having been through this once before.

And I knew that to go into this treatment,

to enter the hospital for many weeks and months

with expectations of what I was going to do from my bed

or trying to hold on to whatever plans I'd made before,

was going to be a recipe for frustration and defeat.

And sure enough,

pretty shortly after I entered the bone marrow transplant unit,

I was on two medications that caused my vision to blur and double.

And so the thing that I had always reached for in times of duress,

which for me is writing, wasn't as easily accessible to me.

It was frustrating, it was hard, it was halting.

And instead of trying to keep doing that,

I decided to be open to whatever felt good.

And for the first time since I was a little kid,

I picked up some watercolors and some brushes.

I transformed the bedside table in my hospital room

into my little palette of paints,

and I began painting the nightmares I was having,

the fever dreams I was having,

and transcribing them onto the canvas

without any expectation of doing anything with these paintings

other than that they simply felt good.

What I love about watercolor is that you don't have much control.

Watercolor is all about the beautiful,

happy accidents.

And so that felt like an apt medium,

given the fact that my circumstances

were very much mirroring that lack of control.

I've come to believe that survival is its own kind of creative act.

When you can't speak

because the chemo sores in your mouth make it too painful to speak,

you have to find new ways to communicate.

When you're confined to a bed for many weeks and months,

you have to find new ways of traveling in your imagination.

And really, it requires complete surrender

and an openness to whatever may emerge,

and also a curiosity about the changes that are happening

and trust that something will come out of it,

even if it's just in terms of my own personal growth

and the reshuffling of the priorities.

Though often, well, it doesn't feel that way in the moment,

it's ended up being my most fertile creative stretches

where I’m pushed to experiment and to create in new ways.

Not in spite of my limitations, but because of them.

And it becomes a process of finding purpose in that pain

and trying to alchemize it into something interesting and thought-provoking,

and maybe even useful and beautiful.

SZ: This leads me to think about 22-year-old you,

you know, with your first leukemia diagnosis

and your “Life, Interrupted” column in The New York Times.

How did that column come to be,

because I feel like your journey now, you were pulling from these resources,

but how then did you come to the conclusion of,

"I need to write a column about this, and I need to share this with the world?"

SJ: So I first got diagnosed with leukemia when I was 22,

and overnight, I lost my job,

I lost my apartment,

I was working as a paralegal in Paris at the time,

but hoping to become a foreign correspondent.

And maybe worst of all, I lost my independence.

And 22 is such a funny age

where, you know, you're no longer a kid,

yet, you're not a fully formed adult either.

And so that sense of in-betweenness accompanied me

from my very first day in the hospital.

And I spent a really difficult first year of treatment,

I spent about eight months, cumulatively,

of that first year in isolation in the hospital

where I wasn't able to leave my room.

And when I went into this,

not knowing anything about what it means to be sick,

I remember packing a suitcase full of books like "War and Peace"

and cheerfully announcing to my parents

that I was going to use that first summer in the hospital

to read through the rest of the Western canon.

And let me tell you, naivete has a short shelf life.

And that was true for me.

I didn't read a single one of those books.

And I felt really angry.

My treatments were not working,

my leukemia was becoming more aggressive.

I was enrolled in a phase 2 clinical trial

that hadn't yet been proven to be safe or effective.

And I was really struggling with a sense

that my life had been interrupted.

My life had been put on pause

at a time when I was watching my friends begin their lives,

you know, travel the world, start careers, get married

and all the other big and small milestones of early adulthood.

After I learned that the treatments weren't working for me,

that a friend of mine came up with the idea of a 100-day project,

and the premise was really simple.

We decided we were each going to do one creative act a day for 100 days.

And for my project, I decided to keep the bar very low,

knowing how unpredictable my energy was,

and I decided to recommit to the thing that had been my companion

from the time I could hold a pen, which was, keeping a journal.

And it didn't matter how much I wrote.

Sometimes it was many pages, sometimes it was a sentence.

Occasionally it was the F-word,

which felt apt for that particular moment.

But in the course of keeping that journal,

something interesting began to happen.

Prior to this project,

I, you know, of course, was not in a place

where I could become a foreign correspondent

in the way that I dreamed of.

But I realized, in keeping my journal,

that I was using it as a kind of reporter's notebook.

I was writing about all the things that felt impossible to talk about

with my loved ones.

I was writing about the sense of guilt

and being a burden,

that can come with being sick.

I was writing about navigating our health care system.

I was writing about the patients I was befriending in the cancer unit.

I was writing about the nurses and the various characters

in my medical team.

I was writing about sexual health,

I was writing about shame,

I was writing about what it feels like to fall in love while you're falling sick.

And by the end of that project, I realized that, you know,

while I couldn't travel the world

and report on the stories of others,

I did have a story to tell,

and that I was reporting from a different kind of conflict zone.

I was reporting from the front lines of my hospital bed.

And so, like the good millennial that I am, I decided to start a blog.

It was in the weeks leading up to a bone marrow transplant,

and I knew that the odds were stacked against me.

My doctors told me point blank

I had a 35-percent chance of long-term survival,

and I think it lit a kind of fire under me.

Staring your mortality straight in the eye can be a great motivator.

There's no longer this illusion of endless time.

Time to eventually get to the things that you want to do,

time to figure out what you want to contribute in whatever, you know,

small or big way, to the world.

And so I kept this blog for a couple of weeks and I took it really seriously.

I would write every day,

and through an old journalism professor of mine,

it got sent to Tara Parker-Pope,

my wonderful editor at The New York Times,

and we had a couple of email exchanges,

and she called me and invited me to contribute an essay.

And I took a deep breath and I said,

"Thank you, but I'm not interested in writing an essay.

What I'm interested in writing is a weekly column,

because so often illness stories are told from the vantage point

of someone who survived.

But I want to write from the trenches of that uncertainty."

And I went on and on and on.

And to my surprise, she said,

"OK, we'll try it for a couple of installments and see how it goes."

And I had never been published before,

I'd never had a byline,

and this pitch that I had just performed

would have seemed wildly presumptuous to pre-diagnosis 22-year-old me.

I would have been grateful for a fact-checking position.

But that's the thing about confronting your mortality,

is that ...

it can make you brazen.

And I knew that I didn't have time for internships

and fact-checking positions.

And so for the first time in my life,

I said exactly what it was that I wanted to do

without any expectation,

but I knew I needed to try for it.

SZ: The response to that column, "Life, Interrupted,"

led to your subsequent road trip across the US

to meet some of the people that wrote to you

while you were in the hospital.

You spoke about this journey in your 2019 TED Talk,

and you wrote about it in your memoir, "Between Two Kingdoms,"

your New York Times best selling book.

Can you share first, a little bit more about the title of the book,

and then how did the process of making this trip and writing it

impact you and your readers?

SJ: So I ended up spending four years in cancer treatment.

And throughout those four years,

the goal was always to eventually be cured.

And I hadn’t given much thought to what would happen after that,

in part because it felt like such a tenuous, flimsy hope.

And to my great surprise,

when I did get the all-clear from my doctors,

when the port was removed from my chest

and I was sort of released from the medical bubble,

instead of feeling great excitement,

and instead of quickly and organically

folding back into the world of the living,

I found myself deeply stuck.

And to my great surprise,

the hardest part of my cancer experience,

on a personal level,

began once the cancer was gone.

I very quickly realized,

you know, of course, that I was no longer a patient,

but that I couldn't go back to the person I'd been pre-diagnosis.

And I had no idea who I was

and how to find my footing among the living.

And I was struggling to figure out

how to carry the imprints of this experience.

Out of my group of 10 cancer comrades,

as we called each other --

young people who I’d befriended during those years in treatment --

only two of us were still alive.

So I knew how lucky I was to be alive,

I knew that ...

I didn't just want to be someone who was surviving

but living, because after all,

you know, what was the point of having endured all that I'd endured

if not to live a good life, a meaningful life,

a beautiful one?

But I didn't have the tools to do that.

And without, you know, a cavalry of doctors and nurses

and friends checking up on me,

I realized, you know, there was no road map for the way forward

and that I was going to have to create one for myself.

And so I spent this lost year trying and failing

and trying and failing to move on,

only to realize, you know,

that we don't get to move on from the painful parts of our past.

As much as we want to,

you know, we can't compartmentalize them

and stow them away

because they always bob back up to the surface and often with a vengeance,

and that instead I was going to have to figure out how to move forward

with the imprints of my illness,

both on my body and on my mind.

And so one of the very first things I did,

because I was still in a place of feeling afraid,

feeling, you know, ironically,

afraid of the outside world.

I was comfortable in the hospital ecosystem

to really, first of all,

give myself the time to properly heal from that experience,

but also to figure out what was on the other side of that fear.

And so I learned how to drive,

and I ended up returning to some of the letters

I'd received from readers of "Life, Interrupted,"

who had shared with me their own experiences of aftermath,

of figuring out how to do the hard work of recovery

and figuring out how to do that hard work of moving forward,

with whatever had happened.

And so I decided to sublet my apartment.

I borrowed a friend's car.

I got a bunch of camping gear,

and I embarked on a different kind of 100-day project.

A 100-day, 15,000-mile solo road trip with my dog Oscar as my co-pilot,

and to visit some of these strangers who had been lifelines

when I was at my sickest,

and to talk to them

about that experience of in-betweenness.

So to wrap this up,

the title of the book, "Between Two Kingdoms,"

is a reference to Susan Sontag's essay "Illness as Metaphor,"

where she describes how we all have dual citizenship

in the kingdom of the sick

and in the kingdom of the well,

and that it's only a matter of time until we use that other passport.

But what she didn't talk about was that liminal space between the two,

where maybe you're not either sick or well.

And that became the premise of that book.

It's figuring out how to exist in the messy middle.

SZ: That book launched during COVID.

Something else that was beginning at that time was the "Isolation Journals"

in April of 2020.

Can you share what was the inspiration for this project,

especially at such a unique moment in time?

SJ: In the early days of lockdown,

as the world was shutting down,

as we were all having to pivot and to put our plans on hold

and to figure out how to live our lives

within very, you know, major constraints.

So much of that experience felt bizarrely familiar to me.

Everything from wearing a face mask and, you know,

walking around with gallons of hand sanitizer

to being isolated at home.

And, you know,

isolation is its own epidemic,

one that predated the pandemic

and one that continues now.

And I decided, on April 1, 2020,

to share what has always helped me

transform that sense of isolation into creative solitude and connection

and even community.

And I launched a newsletter

called "The Isolation Journals."

It's a free newsletter,

and we invited our larger community to do their own 100-day project.

And so every single day, for 100 days,

we had a different guest contributor write an essay in a journaling prompt.

We had artists and writers and musicians and community leaders.

One of my very favorite essays and prompts came from Lou Sullivan,

a seven-year-old, two-time brain cancer survivor

who shared this game that he played in the hospital

called “Inside Seeing,”

which was essentially his take on meditation.

And within 48 hours, we had over 40,000 people who'd signed up.

And it was extraordinary to see what can happen

when we dare to share our most vulnerable,

unvarnished stories.

And the reverberation that that creates.

And so that newsletter continues on to this day.

We have over 150,000 community members.

And every Sunday we send out a newsletter

with thoughts from me

and then a new essay and journaling prompt.

But what's surprised me so much

is that people interpret journaling in all kinds of ways.

Some people use the prompts as conversation prompts,

others use them as thought prompts.

Some people reinterpret the idea of journaling,

not as old fashioned, you know, pen and paper,

but they'll paint to the prompts, they'll do modern dances.

And so it's really been such a nourishing,

tender, life-giving space.

And I'm so proud of this thing we built.

I know what it's like to feel alone,

to feel like you're the only person suffering in a particular way.

But we have so many extraordinary artists throughout time,

from Frida Kahlo to Virginia Woolf

to Audre Lorde,

who have taken that space of confinement,

who have reimagined their limitations as creative grist.

SZ: We have a question from Celia.

“Our world tries to avoid having feelings, but in ‘American Symphony,’

you said that you didn't want to develop a thick skin.

You wanted to feel it all.

Can you say more about how that approach impacts your spirit

and how you experience life feeling it all

and how others can do the same?"

SJ: You know, as a culture, we resist discomfort.

We resist

confronting the fact

that all of us are here on this Earth for a very short period of time.

I'm not special, I live a little closer to the veil,

because of the nature of my illness.

And as tempting as it can be, you know, to compartmentalize that discomfort,

to plaster over it, to numb it,

I think there's also so much

to be gained when you unguard your heart.

And it's the hardest thing in the world to do.

I knew going into this that it wasn't going to be easy.

I had no illusions,

not only about the toll it would take on me

and on my loved ones,

but I also knew that there was a lot to be gained

if I could resist that urge ...

to look away from the things that scared me most.

And rather to engage in them directly.

I wanted to be open to all of it.

I wanted to be open

to the beautiful things and to the painful things,

and to really learn how to hold both of them in the same palm.

Because in varying ways and for varying reasons,

that's the work that we all have to do.

There is no binary.

Life isn't either good or bad.

We're not either happy or sad or healthy or unhealthy.

Most of us, you know, exist somewhere in the middle,

and depending on the hour or depending on the day,

we might shift from one to the other.

Trying to do the opposite of having tough skin,

trying to have tender skin,

is not something that comes easily to me.

It's something I have to work at every single day.

But I know that for me,

it's the only way I can shift out of that survival mode

and in to fully living and feeling alive.

SZ: We have a question here from Lauren.

"In your book, you shared how cancer impacted your relationship

with your previous boyfriend.

Have you carried these lessons and experienced

with this return of your leukemia?

Were you able to strike a better balance as a caregiver/patient?

And how did art making and his music making

affect your relationship this time around?"

SJ: The most surprising toll isn't what happens to the body,

it's what often happens to your relationships.

And so at 22, I was pretty isolated.

The friends that I had played beer pong with in college

were not necessarily the ones who showed up

to sit at my hospital bedside

as my hair was falling out in clumps.

But more important

than realizing who my real friends were and weren't,

I was so astounded by the people who came out of the woodwork

and who showed up with such generosity

and support

and really made me understand the value

of cultivating community and prioritizing that

and investing your time and energy in that.

And so luckily, by the time that I did have my recurrence,

I had spent that decade building a community,

because as much of a cliche as it sounds like,

we all need a village

and we especially need a village when the ceiling caves in.

And so, when I learned of my recurrence,

Jon was in the midst

of perhaps his busiest professional season of life.

And I’ve known Jon from the time I was 13 years old.

I have watched him work so hard

to get to a place where he was getting the kind of recognition

and invitations that he had,

and it felt really important to me that he not put his life on pause.

And so we had to get creative about how to stay connected to each other

at this time where it felt like we were living on polar opposite planets.

And so Jon came up with a beautiful idea of composing lullabies.

He would compose a lullaby for me every single day,

and send it off to me as a kind of counterpoint

to the hospital's many noises, the beeping of monitors,

the wheezing of respirators,

the alarms that go off.

And it was his way of enveloping me with his presence,

even when he couldn't physically be there.

And I, in turn, would text him photos of the little paintings that I would make.

And so what that meant was that when we spoke on the phone,

the conversation wasn't just centered around the latest biopsy results

and blood tests and whatever else was happening.

It was centered in our love language, which is a shared creative language,

and gave us a way of expressing what we couldn't express.

SZ: Joey writes,

"What do you recommend to someone

who is trying to get started with journaling

but feeling a little overwhelmed by the blank page?

Do you have any rituals or any starting places you can recommend?"

SJ: Yes, in spite of the fact that I've been a lifelong journaler,

I go through many moments where I feel daunted by the blank page,

and that was kind of the original premise of starting the "Isolation Journals."

Sometimes we need to read something.

Sometimes we need to prompt ourselves to get out of, you know,

to twist our mind out of its usual rut.

Come join us at "The Isolation Journals."

We have an archive of hundreds of essays and prompts and journaling challenges.

Or don't.

But I'll offer you what helps me

when I'm feeling daunted by the blank page.

And it's actually something I borrowed from my friend,

the poet Marie Howe,

and she told me that when she's feeling stuck,

she writes with her non-dominant hand and a big scrawl across the page.

"I don't want to write about ..."

And then she writes into that.

Another one of my favorite journaling prompts

from "The Isolation Journals" is by the photographer Ash Parsons.

During a period of time where she was in the NICU

with a recently adopted baby who was having major health issues,

she began what she calls “just 10 images,”

which is listing just 10 snapshots from the last 24 hours,

stream of consciousness, whatever comes to mind.

And I love that prompt

because it's in list form and it's so simple.

But more than just recounting what happens in the last 24 hours,

it's a prompt that's trained me to look and to look again

and to notice my day differently.

But the beautiful thing about journaling,

and the thing that makes it so generative and inspiring for me

is how low the barrier to entry is.

You know, journaling is not beautiful writing.

It doesn't have to be grammatically correct.

It doesn’t have to be in full sentences.

It can be whatever it is that you want.

It's such an expansive form that you can interpret

and reinterpret however it best serves you.

SZ: I have one last question from York.

York says, "Thank you for sharing your experience and insights.

One of the parts that resonated with me was your experience of using creativity

while you were struggling with finding purpose.

Were you always able to focus on creativity and if not,

what helped you make that shift?"

SJ: Liz Gilbert speaks so beautifully

about the pressure of finding

your “capital P” Purpose.

And so, what she's always said

is you have to be one percent more curious than afraid.

Any time I come up with some big, ambitious creative project,

I immediately get frozen in my fear and daunted by whatever it is.

And so I think curiosity is such a gentler way in and such ...

And it's a more honest way into the creative process,

where you don't hold to an expectation

of how something should look

or how something will come together.

But you really give yourself the time and space

to explore the threads of that curiosity.

The work I'm most proud of,

the work that has surprised me

and changed me as an artist, as a writer,

are the projects I started without that sense of output

or expectation, be it, you know,

that 100-day project and keeping that journal

or even the paintings that I started doing in the hospital.

They were pure play

and tapping into that sort of child space,

of creating simply for the joy of creating

without any regard for if it's good or bad,

but simply to explore.

And so I try to trick myself back into that space all the time.

SZ: Thank you for sharing so openly and vulnerably with us,

as you frequently do.

Bye for now.

SJ: Thank you everyone, thank you Susan.

[Want to support TED?]

[Become a TED Member!]

[Learn more at ted.com/membership]