0:14

Pushkin. Hey

0:20

everyone, this is part two of

0:22

my conversation with writer Suleka Jawad.

0:25

If you haven't listened to part one, I recommend

0:28

going to the Slight Change of Plans feed and

0:30

starting there.

0:41

There's this expectation

0:44

placed on I think cancer survivors,

0:46

specifically of gratitude

0:50

for being alive.

0:53

But I realized that for me,

0:56

it wasn't enough to just be

0:58

alive. It was to live

1:01

a good life, a meaningful life,

1:04

and I needed to figure out how to do that.

1:06

When Suleka Jawad successfully completed

1:09

cancer treatment in her mid twenties, she

1:11

was surprised by how difficult it was to readjust

1:14

to life outside the hospital. She

1:16

found comfort in connecting with people who

1:18

were also navigating challenging transitions.

1:21

If I could turn back the clock. Of course,

1:23

I wish I

1:26

hadn't gotten sick, But it was

1:28

also true that I

1:30

had met some of the most

1:33

extraordinary human beings through

1:35

this unfortunate experience, that

1:38

I had learned so many things

1:40

through it, that I had grown, that

1:43

I had uncovered new parts of myself.

1:45

I hadn't even known what's error. And

1:47

I think, you know, part

1:50

of the work for me has been stepping

1:52

outside of my own story of suffering.

2:00

On today's episode, how connecting

2:02

with others can teach us how to live again.

2:06

I'm Maya Shunker, and this is a slight

2:08

change of plan, a show about who we

2:10

are and who we become in the face

2:12

of a big change.

2:25

In the first part of my conversation with Suleka,

2:27

she told me how she turned to writing when she

2:29

was diagnosed with an aggressive form of leukemia.

2:33

In her New York Times column, Life Interrupted,

2:36

she shared stories about the darker less

2:38

talked about parts of having cancer. These

2:41

stories really struck a chord with people.

2:44

Total strangers from all over the world

2:46

wrote her letters, thanking her and

2:48

sharing their own experiences. These

2:51

letters were a lifeline for Suleka,

2:54

and she returned to them years later when

2:56

she was adjusting to life in remission.

2:59

So, you know, in that first year when I finished

3:01

treatment, I was afraid. I

3:04

was afraid of everything. I was afraid

3:07

of relapsing, I was

3:10

afraid of the outside world. I was afraid

3:12

of taking risks, and

3:15

I felt like I was living

3:17

in a cage of my own making. And

3:20

so I decided to

3:24

start confronting some of those fears,

3:27

and I began to

3:29

think about rites of passage, these

3:32

rituals that we create to mark

3:35

a transition, to mark that distance

3:38

between no longer and not yet. We have

3:40

funerals and wakes, we have weddings

3:43

and baby showers, but when it

3:45

comes to something like surviving

3:48

a life threatening illness, there isn't

3:50

really a ritual or a rite of passage.

3:53

And I was going to have to create one for

3:55

myself. In the early years

3:57

when I was writing the column, I've gotten

3:59

into the habit of printing out different

4:02

letters that meant a lot to me so

4:04

that I could reread them and revisit them.

4:06

And I had this old wooden trunk filled

4:08

with life, and I began, in

4:11

reading these letters to think about

4:14

maybe reaching out and going

4:16

to visit some of them. And so what

4:18

began as this hair brained

4:20

idea turned, you

4:23

know, three months later, into me

4:26

leaving home and my friends borrowed

4:28

car, I sublet my apartment, and

4:32

embarking and what ended up being

4:34

a fifteen thousand mile, three

4:37

month cross country road trip

4:39

to meet some of the strangers who

4:42

had written me letters, and

4:45

I met all kinds of people. I

4:47

met a teenage girl

4:49

who, like me, was

4:51

emerging from years of treatment.

4:54

I met a family of survivalist

4:57

ranchers whom I stayed with in Montana.

5:00

I met a mother who was

5:03

grieving the loss

5:05

of her son, and

5:08

the experience of sitting

5:11

across a table and

5:14

telling the unvarnished truth of how

5:16

you're really doing, and hearing

5:19

from people who'd been where

5:22

I'd been, even if the circumstances

5:24

were really different, and learning

5:26

from them, and taking that time

5:29

to be alone in a car with my thoughts,

5:31

which, after having been experimented

5:34

upon for many years, felt

5:36

like my own bizarre clinical

5:39

trial and exposure therapy.

5:42

So one of the people you visited was a man named

5:44

Quentin Jones, who was convicted

5:47

of murder at age twenty one and

5:49

had been in prison for half his life. He'd

5:52

written you a letter about the extreme isolation

5:55

of being on death row and sent it to you while

5:57

you were in the hospital. What was it

5:59

like to finally meet him?

6:01

So I had never been to

6:03

a prison, he hadn't had a visit

6:06

or years and years,

6:09

and we couldn't have been more different. We grew

6:11

up in wildly different

6:14

worlds, and I

6:16

remember feeling nervous as I

6:19

walked in and walked through various

6:21

metal detectors, and sitting

6:23

in that room there was a piece of plexiglass between

6:26

us and picking up the phone,

6:29

and one of the very first questions

6:31

he asked me was what

6:34

did you do during all that time

6:36

you spent in isolation in the hospital. And

6:39

I said to him that I'd gotten

6:41

really, really good at scrabble, and to

6:43

my surprise, he said me too,

6:46

and explained that he

6:48

and his neighboring prisoners would

6:50

make board games out of paper and

6:53

call out their plays through the bars. And

6:55

it was, you know, this

6:57

moment of connection, this

7:01

moment of like reaching through

7:04

the plexiglass, and

7:06

I think, you know, for me

7:09

a reminder again of

7:11

that idea of survival being its own

7:14

kind of creative act, but also

7:16

how profoundly, you

7:19

know, resilient and tenacious

7:21

the human spirit can be,

7:23

because here was this man who

7:25

is never going to get out of prison, who

7:28

is never going to get

7:30

to go on a road trip, and

7:33

yet he was finding

7:36

his own ways of reimagining

7:40

that confinement into

7:42

something connective and

7:45

beautiful and playful.

7:48

So after one hundred days on the road, you

7:50

returned home, and in the

7:52

decade that followed you wrote a memoir

7:55

might I say my favorite memoir Suleka

7:58

called Between Two Kingdoms, And

8:01

in the book you talked about a number of the people you

8:03

met on the road, including Quentin. When

8:05

it was finally published in twenty twenty one, Quentin

8:09

shout with some news.

8:10

Yeah. So my

8:12

very first week of book tour, I

8:15

got a letter from Quentin, who

8:17

I'd stayed in touch with all those years. We'd

8:19

become pen pals, which is this very

8:21

favorite thing in the world to write letters

8:24

to people, saying that he'd

8:26

gotten a date, meaning

8:28

an execution date. And

8:32

my heart sank when I read

8:34

those words. Of course, he knew,

8:37

I knew, we all knew that it was a possibility,

8:40

but at that point he'd been on death

8:42

row for over twenty years,

8:45

and I knew immediately

8:48

in that moment that

8:51

the idea of a book tour suddenly

8:54

felt meaningless unless

8:56

it was to try to amplify his

8:58

story. And so I spent those first couple

9:01

events talking about my book,

9:03

yes, but also talking about

9:05

Quentin, because to me, he

9:08

is one

9:10

of the most powerful examples

9:12

that I've personally encountered of

9:14

our capacity for change. He had

9:16

spent those twenty

9:18

plus years on death row, reckoning

9:21

with what he'd done, seeking

9:24

forgiveness from the people

9:27

he'd hurt, And while you

9:30

know, he believed that he deserved

9:32

to spend the rest

9:34

of his life behind bars, I

9:36

felt so strongly that

9:39

he didn't serve to die because the

9:41

man he'd entered prison as

9:45

was no longer the same man that

9:47

I had gotten to know over the course of

9:49

those ten years, you know, as

9:51

someone who had fought

9:55

so hard to be alive and

9:57

ultimately knew that

10:00

my survival was left to chance.

10:03

It felt unacceptable

10:06

to me that someone

10:09

die when there

10:12

was a choice to be made about whether

10:14

or not he could live. So

10:17

a couple days later, after

10:20

talking about him and

10:22

what was happening now, I received

10:24

an email from someone who had been

10:26

at one of those virtual book tour events,

10:29

who was a partner of a

10:32

very large, very fancy law

10:34

firm, offering to

10:36

represent him pro bo now.

10:38

And for the next couple of months

10:42

we mounted a

10:45

big grassroots advocacy

10:47

effort to try to

10:50

get his death sentence converted

10:52

to a life sentence, and,

10:57

to our great heartbreak,

11:00

the day before his execution date,

11:03

we learned that he hadn't been granted

11:05

clemency, and when

11:07

you're preparing to to the

11:10

execution chamber, you get

11:13

a four hour phone call or however

11:16

many hours on the phone until

11:18

you have to go in. And Quinn

11:21

called me and we spent that entire

11:23

afternoon talking and

11:26

I was devastated.

11:28

I felt like I had let him down, and

11:32

I worse

11:34

than that, you know, felt like maybe

11:36

I had given him false hope,

11:38

which maybe is worse than

11:42

confronting death with your eyes

11:44

wide open. And his response

11:48

really stunned me. And he said that,

11:51

you know, even though it wasn't the outcome

11:54

that we'd expected, it

11:57

was the best thing that

11:59

had happened to him,

12:01

because in those months leading up to that execution

12:04

date, I had started

12:06

a letter writing campaign and inviting people

12:09

to send him letters, which were his very favorite

12:11

thing. And he said

12:13

that for the first

12:15

time in his life he felt

12:18

loved, that he had never

12:20

experienced love before, and

12:24

that to leave

12:27

knowing that he had been loved,

12:29

knowing that his story

12:33

had been known, was the greatest

12:35

gift of all. And we

12:37

talked right up until that last

12:39

minute when he was escorted into

12:42

the execution chamber, and

12:44

the very last words he

12:46

said to me were keep

12:49

doing the good work, Keep

12:52

throwing a pebble into

12:54

the lake and allowing the

12:56

pebble to ripple out.

13:02

Wow, how

13:07

did you process the after math

13:09

of Quentin's death.

13:11

I felt this deep sense

13:14

of exhaustion in the weeks

13:16

to come, and at first I attributed

13:19

it to the many sleepless

13:21

nights we'd spent on the phone

13:24

with lawmakers and activists

13:27

and lawyers, and then I attributed

13:29

it to grief. But

13:32

within a couple of months, as

13:35

I was writing about that fatigue

13:37

in my journal, I realized

13:39

I was using euerily similar

13:42

language to the language

13:44

I'd used a decade before and

13:47

the months leading up to my diagnosis,

13:50

and I had had lowering

13:53

blood counts throughout the pandemic, and

13:56

at first those low blood counts

13:58

had been attributed to

14:01

COVID, then they were attributed

14:03

to lyme disease, And

14:07

as they continued to drop

14:09

and drop and drop, I

14:11

felt this awful sense

14:14

of knowing. And I remember

14:17

saying to one of my oncology

14:20

nurses, I think my leukemia

14:22

is back, and she said that can't be true.

14:25

The statistical odds of it coming

14:27

back this far out are less

14:30

than five percent. But I

14:32

pushed for that biopsy because

14:34

then not knowing was worse than

14:37

the knowing, and I learned

14:40

that, against the odds, it

14:42

was in fact back.

14:47

We'll be back in a moment with a slight change

14:50

of plans.

15:04

What was it like.

15:06

To receive this news the second time around?

15:09

Relapse was my biggest

15:12

fear. It was this fear that

15:15

I had nursed in the early years

15:17

and that had slowly, little by little

15:19

shrunk, but it was always a specter, and

15:22

so to be confronted

15:26

with that worse fear for it to

15:29

come to pass was

15:31

devastating and weirdly

15:35

easier because now

15:37

the thing i'd heard,

15:40

most of, the thing I thought

15:42

I couldn't possibly go

15:44

through again, had happened, and

15:47

I knew I was going to do everything

15:49

in my power to get through it anyway. I

15:52

had this sense of deja vous,

15:54

and I think, even

15:56

though my prognosis

15:59

is a lot worse, I had

16:01

the privilege of having

16:04

been through this before, and

16:06

having written a book

16:09

pursing through this experience, and

16:12

having spent a lot of time reflecting

16:15

on how I'd want to do it differently,

16:18

And so that's what

16:21

I did.

16:22

And how did you approach it differently?

16:25

I went into

16:27

the hospital without expectation,

16:30

without that suitcase full

16:32

of books. I went into

16:35

it open to everything,

16:37

wanting to be open to everything,

16:40

wanting not to have

16:42

tough skin, but to have tender

16:45

skin. I wanted to feel at all. I

16:47

wanted to feel the terror

16:49

and the clarity and the

16:52

moments of heightened beauty that

16:54

come when you wrote the end might

16:56

be near, and so you

16:58

know, I entered into that hospital

17:02

certainly afraid of

17:05

what was to come, but more than that,

17:07

full of love, full

17:11

of a sense of openness.

17:15

You've been dealt such

17:18

a rough hand in life, and I

17:21

wonder how you avoid feeling consumed

17:23

by resentment, or

17:26

how it is that you try to justify all

17:28

the suffering, the needless suffering that you've

17:30

endured, And if you have anything

17:33

to share on that front. Yeah,

17:35

I just don't feel like the suffering

17:37

serves any higher purpose, and so I

17:40

often feel at a loss when I

17:42

have to witness people suffering like that.

17:45

Yeah, I also don't

17:47

think suffering in and of itself

17:51

serves a higher purpose. But

17:53

I do think that suffering

17:57

brings you down to your most primal

18:01

self. It heightens

18:04

all of the worst things and all

18:06

of the most important

18:09

things. And I think that's useful information.

18:12

And I think, you know, part

18:15

of the work for me has been stepping

18:18

outside of my own story of suffering.

18:21

And when I do that,

18:24

when I can, you

18:26

know, step beyond myself

18:28

and listen to someone else's

18:30

story, really listen to it,

18:34

I feel and learn

18:36

again and again that we're

18:38

more alike than we are different.

18:41

How did this latest round of treatment

18:44

go? What's your health like today?

18:47

So I made it through my

18:50

transplant, obviously, yeah,

18:52

I'm here talking to you, but

18:55

unlike the first time around, there's

18:58

no you know, cure insight

19:01

for me. I will be in

19:04

treatment, some form of treatment

19:06

for the rest of my life, however

19:09

long or short that may be. And

19:12

so I've you know,

19:15

had to make it

19:18

by work. It's sort of my endless

19:21

work to swim in that ocean

19:23

of uncertainty. And I'm you

19:26

know, and a more heightened in between

19:28

place than maybe ever

19:31

before. And I remember, you

19:34

know, my oncologist, when you first gave me

19:36

this news that I was going to be in treatment, and definitely

19:38

saying to me, you have to

19:40

live every day as if it's your last, which

19:43

is the kind of thing that we say in

19:45

situations like these, and we mean

19:47

well that every time you would say

19:49

I felt this sense of doom

19:52

fall over me, this anxiety that

19:54

I had to you know, race against time

19:57

and you know, seize

19:59

every day and all the other things

20:03

that come with having

20:05

mortality hang in the balance and

20:08

so dead now, I've

20:11

had to shift to

20:15

a different headspace. And the way

20:18

that I've found my seat legs

20:20

within that uncertainty is

20:23

not in the grand gestures.

20:25

It's not in you know,

20:27

ringing as much as I can out of life.

20:30

It's trying to

20:34

live every day as if it's my first

20:37

to wake up with the sense

20:39

of wonder and playfulness

20:43

and curiosity that a newborn

20:46

baby might. And so every

20:48

day I wake up afraid. But I

20:50

have to find that

20:52

tiny little thing that

20:54

makes me curious, that tiny

20:56

little joy that

20:59

makes me smile. And

21:01

when I do that, it's like exercising

21:03

a muscle. And so that's what

21:05

I'm doing, and that's more than

21:08

enough.

21:47

Hey, thanks so much for listening to

21:49

hear more from Suleka. I highly recommend

21:51

checking out her memoir Between Two Kingdoms.

21:54

I also recommend watching the Netflix documentary

21:57

American Symphony, which captures

21:59

her love story with her husband, musician

22:02

Jhon fatiste, and next

22:04

week, join me for my conversation with vulnerability

22:06

researcher Brenee Brown talk

22:09

about the identities that are most central to her,

22:11

for being a recovering perfectionist to being

22:14

a big sister, and how those identities

22:16

have evolved over time. And

22:18

as always, we'd be so grateful if

22:20

you can follow this show wherever you listen to

22:22

podcasts, whether it's leaving a review

22:25

or sharing an episode with a friend, it

22:27

helps us keep making this show for you, Thanks

22:30

so much. A

22:40

Slight Change of Plans is created, written,

22:43

and executive produced by me Maya Schunker.

22:46

The Slight Change family includes our showrunner

22:48

Tyler Green, our senior editor

22:50

Kate Parkinson Morgan, our senior

22:53

producer Trisha Bbida, and our

22:55

engineer Eric o'huang. Luis

22:57

Scara wrote our delightful theme song and

23:00

Ginger Smith helped arrange the vocals. A

23:02

Slight Change of Plans is a production of Pushkin

23:05

Industries, so a big thanks to everyone

23:07

there, and of course a very

23:09

special thanks to Jimmy Lee. You

23:12

can follow A Slight Change of Plans on Instagram

23:14

at doctor Maya Schunker. See

23:16

you next week,