0:14

Pushkin.

0:30

That was really the moment

0:33

that I realized whatever

0:36

future I'd imagine for myself

0:39

not only wasn't going to happen

0:41

in the way that I'd planned, but that

0:43

I might not get to exist in the future

0:46

at all.

0:48

Suleka Jawad was diagnosed with

0:50

an aggressive form of leukemia when she was

0:52

twenty two years old. As

0:54

she faced her mortality, she felt clarity

0:57

about how exactly she wanted to spend her

0:59

time.

1:00

I felt a real sense of liberation

1:03

to do the things I wanted to do

1:06

simply because they nourished me, because

1:08

they felt life giving, and not because

1:10

they were the things I thought I should be doing.

1:13

And so for the first time in my life,

1:16

I began creating entirely

1:18

for myself.

1:24

On today's episode, why Survival

1:26

is its own kind of creative act, I'm

1:30

Maya Shunker and this is a slight change

1:33

of plans, a show about who we are

1:35

and who we become in the face of a big

1:37

change.

1:47

Okay, so full confession. I'm

1:49

obsessed with Suleka Jawad. Her

1:52

mind and heart speak to me in a way

1:54

few people do. I followed

1:57

her writing from Afar over the years, and

1:59

I found her honesty so startling

2:02

at times, it's taken my breath away. Suleka

2:06

is unafraid to tackle some of the hardest

2:08

questions we fine as humans. When

2:11

she first started working on her memoir, a

2:13

friend told her about a saying they'd heard. If

2:16

you want to write a good memoir, share what you

2:18

don't want other people to know about you. If

2:21

you want to write a great memoir, share

2:23

what you don't want to know about yourself.

2:26

Suleka wrote a great memoir.

2:29

The title of her book, Between Two Kingdoms,

2:32

a Memoir of a Life Interrupted, is

2:35

a nod to the writer Susan Sontagg.

2:38

Sontag wrote that everyone who is born

2:40

holds dual citizenship in

2:42

the Kingdom of the well and in the Kingdom

2:44

of the sick. Suleka

2:47

writes about her experience in both these kingdoms

2:49

and the difficulty of navigating the space

2:52

that lies between them. Her

2:54

story begins in twenty ten. She

2:57

just graduated from Princeton University

2:59

and had big dreams for the road ahead.

3:02

So much of my sense

3:05

of self worth, like most

3:08

Type A strivers, was

3:10

wrapped up in my plans

3:12

for the future, and I had all kinds

3:15

of one year

3:17

and five year and ten year

3:19

plans, and I had a dream

3:22

of becoming a war correspondent.

3:25

I wanted to report

3:28

from North Africa, where

3:30

I'm originally from, where my entire

3:33

family currently lives. But also,

3:35

like a lot of twenty two year olds, I had

3:37

no idea what the future actually had

3:40

in store for me. I had lots of daydreams

3:42

and plans that I didn't really know

3:45

who I buys met. And so

3:47

what I decided to do was to take a

3:50

job as a parent legal and a

3:53

law firm in Paris, and

3:55

to take the time I needed to find my way.

3:58

And you know, there was

4:00

this sense of endless time, as

4:02

there often is when you're

4:04

young. Time to figure out what you want,

4:07

time to figure out who

4:09

who you want to become, and how

4:11

to plot the distance between

4:13

you and that person. And

4:16

so I was brimming

4:18

with joy, bringing with a little

4:20

bit of anxiety about finding

4:23

my way forward, but it

4:26

was really this sense of being

4:29

on the edge of something exciting.

4:32

Yeah.

4:33

So you had had worrying health symptoms

4:36

for some time, and when you were

4:38

in Paris things got worse. Can you

4:40

tell me about how your health was starting

4:42

to fail?

4:43

It began with an itch, this

4:46

relentless, maddening itch

4:48

on my skin that popped up during my senior

4:51

year of college, and followed

4:54

by that was fatigue and

4:57

frequent infections and viruses.

4:59

But every single time I went to a doctor,

5:02

they would look at whatever specific ailment

5:04

I was coming in, treat that,

5:07

and then send me home. And so

5:09

it took about a year and a half

5:11

until I was about six months into

5:14

my time in Paris, and I had grown

5:16

so pale that my skin

5:18

looked almost translucent, and I

5:21

was so exhausted that

5:23

I was drinking, you know, up to eight

5:25

espressos every day to get through

5:28

my job at the law firm, and

5:30

spending my lunch hour napping in

5:32

the office closet. That it

5:34

began to occur to me that

5:37

something was deeply wrong.

5:39

But as is often the case,

5:42

especially for young people, especially

5:45

for women, the challenge

5:47

of getting

5:50

an actual diagnosis proved

5:52

to be so much harder than I possibly

5:54

could have imagined. You know,

5:56

we have so many examples

5:59

throughout history where

6:02

a woman's physical affliction

6:05

is attributed to their mind,

6:07

to a sense of hysteria,

6:10

and that's very much how I

6:12

felt. I kept saying,

6:15

I think something is wrong. I've never been

6:17

sick in my life. I've never even broken

6:19

a bone, and I can barely function. I

6:22

so often would find myself on

6:24

an exam table, feeling

6:27

like I wasn't being taken

6:29

seriously, feeling like I wasn't being

6:31

believed. A doctor I

6:33

saw prescribed anti anxiety medications

6:36

to me. Another that hospitalized

6:39

me for a week and ran every test

6:41

they could think of release me with a discharge

6:44

of burnout syndrome. And

6:47

I felt this sense of intimidation that

6:49

I think many of us have felt

6:51

when we're in a doctor's office, the

6:54

sense that they had the medical

6:56

degrees, not me. Who was I

6:59

to question their judgment? And

7:01

so at the end

7:04

of this confusing year

7:06

and a half, ultimately I found

7:08

my self in an emergency room in

7:11

Paris with blood counts so low

7:13

that I had to immediately get on a plane

7:16

back home to Upstate New York because if they

7:18

dropped any lower, I wasn't going

7:20

to be able to fly at all. And

7:23

it was shortly thereafter that

7:26

I learned I had been diagnosed

7:29

with an aggressive form of leukemia.

7:32

And it was one of those

7:35

bifurcating moments

7:38

in a life where even

7:40

though at twenty two I couldn't really

7:43

wrap my head around what

7:45

this illness meant for me. I didn't

7:48

have friends who had suffered from

7:50

cancer, and I didn't really have

7:52

anything to sort

7:55

of give me an indication of what it was going to be like.

7:57

But I knew immediately that

8:01

whatever sense of

8:03

innocence I've had had

8:07

been buried and everything

8:09

was going to be different from

8:11

there on out.

8:14

What were you told about your prognosis

8:16

at the time, and what

8:18

was it like to leave behind all

8:21

of those dreams and hopes that you had been

8:23

carrying, just you know, weeks

8:25

prior about what your future was going to look

8:27

like.

8:29

So initially I

8:32

did all the googling

8:34

that they tell you not to do, and I

8:36

knew from the very start that my prognosis

8:40

was not good, that the cards were

8:42

stacked against me. They

8:45

told me I had about a thirty five percent

8:47

chance of long term survival.

8:51

But when I entered the hospital, I

8:53

still had a

8:55

kind of naivete about

8:57

what this whole experience is going to be like.

9:00

I packed a suitcase full

9:03

of books like War and Peace,

9:05

and I cheerfully announced my parents

9:07

that I was going to use this summer

9:10

in the hospital to read through the rest

9:12

of the Western canon. I thought I

9:14

was going to write a book. I thought it was going to do all

9:16

these things, and of course I didn't

9:18

end up doing any of those things. And

9:20

it was a slow crushing

9:24

realization that

9:27

to hold on to the person I'd been, and

9:30

all of the dreams and plans

9:32

that that person had, was

9:35

only going to be a recipe for

9:38

defeat and discouragement. And

9:41

by the end of that summer, I had lost

9:43

about forty pounds. I had lost on my

9:45

hair and my eyelashes, my eyebrows.

9:48

But worse than that, I had learned

9:50

that the standard chemotherapy

9:53

I'd been doing all summer not only hadn't

9:55

worked, but that my leukemia was even

9:57

more aggressive, and

9:59

that my only option was

10:02

going to be a clinical trial.

10:04

You went from assuming that you were going to have this relatively

10:07

short stay, I mean not just so

10:09

like in your case, but like highly productive

10:12

reading war and peace stay, which

10:14

by the way, will never

10:16

ever be in the cards for me ever, no

10:19

matter what illnesses I face. I'm

10:22

more in the mindy Kaling, you know, memoirs

10:25

face. And

10:27

then and then you find out this devastating

10:30

news, which is okay, you're going

10:32

to have to enter this clinical trial. What

10:35

was it like to have the

10:37

goalpost change like that.

10:40

I was devastated. I remember it

10:42

so clearly. It was the morning of

10:45

my twenty third birthday,

10:48

and I

10:51

had packed up everything in

10:53

my room because I wanted

10:55

so badly to be discharged. I had taken

10:58

down the posters and the getball

11:00

cards. And the

11:03

hope from the very beginning

11:05

was that I would get into remission.

11:08

But theallenge was that I

11:10

not only couldn't get into remission,

11:13

but my leukemia was running

11:15

rampant throughout my entire body. I

11:18

felt when I received

11:20

that news, the

11:22

scaffolding inside of me

11:25

crumble. It felt

11:27

like a breach of contract

11:30

with the natural order of things, because

11:32

youth and health are supposed to go hand

11:34

in hand. And that

11:38

began a very different

11:41

chapter where I really retreated

11:43

into myself. I had this window

11:47

overlooking Central Park from my hospital

11:49

room, which was a great privilege to

11:52

have landed in this room by chance.

11:55

And I remember closing the blinds

11:58

because what had once brought me comfort

12:01

to be able, you know, to see

12:03

the world continuing to move, suddenly

12:06

felt like a reminder that

12:11

whatever future

12:13

I'd imagine for myself, not only

12:15

wasn't going to happen in the way that I'd

12:18

planned, but that I might not get

12:20

to exist in the future at all.

12:24

And so for the next couple of

12:26

months, I sank

12:29

into a

12:32

pretty deep well of depression.

12:34

I no longer wanted to have

12:37

visits from friends, I

12:40

stopped reading, stopped making

12:42

plans. I instead

12:45

filled my days by trying to set the world

12:47

record for the number of Gray's

12:50

Anatomy episodes watched consecutively.

12:53

And I was angry. I

12:55

remember, you know, being told

12:57

stories of cancer

13:00

survivors who had gone on to do extraordinary

13:03

things, and feeling

13:07

such rage at

13:09

the idea that anything

13:12

about what I was living could

13:14

be useful, could be turned

13:17

into anything other than what it was,

13:19

which was a deep sense

13:21

of isolation and a deep sense

13:24

of fear about what was

13:27

to come.

13:28

Yeah, when I told you

13:30

you'd have to enroll in this clinical trial, what

13:32

was the chance of a successful outcome?

13:35

I had no idea, And that's

13:37

what made it especially challenging. The

13:40

clinical trial that I enrolled

13:42

in was a phase two clinical trial, meaning

13:46

they not only didn't know if

13:48

it was safe, but they had no idea

13:50

if it was going to be effective. Okay,

13:53

and It really

13:55

required what I can only describe

13:58

as a leap of faith to submit

14:00

my body, to submit my

14:03

family to what ended up being

14:07

a harrowing and grueling

14:09

experience.

14:10

Yeah, I do wonder

14:12

whether it was ever a

14:14

question of whether you were going to go through with the treatment.

14:17

I could easily imagine myself saying, like, please,

14:19

everyone I love, spare me this

14:22

pain and suffering, Like I'd rather just

14:24

go.

14:26

We had so many difficult conversations

14:28

as a family, especially because the

14:31

side effects of the clinical trial were

14:33

so brutal that they

14:36

became nearly lethal on a

14:38

number of vacations, and I ended up spending

14:41

about four out of the next eight

14:43

months and isolation in the

14:45

hospital, warding off

14:48

everything from septic shock to

14:50

life threatening infections and

14:53

fevers. And that

14:55

was the impossible Sophie's

14:57

choice. Is this going

14:59

to kill me? Is this going to save me? But

15:02

I would say things to my parents sometimes

15:04

when I felt I was really in

15:06

a low down place, that you know,

15:08

maybe I was better off stopping

15:11

the clinical trial, doing

15:14

some kind of make a wish

15:16

bucketless trip to some tropical

15:19

island and smoking pot and

15:21

doing whatever else it was that I

15:24

wanted to do, And more than

15:26

anything to really savor whatever

15:28

time I had left with them, with

15:31

my friends, with my loved ones,

15:33

rather than torturing

15:35

myself with these treatments. But

15:38

I had this amazing oncologist,

15:41

the late doctor James Holland,

15:44

who, when I was at my

15:46

most defeated place, began

15:49

during his lunch hour coming to my hospital

15:52

room with his paper bag

15:55

of sandwiches and sitting by

15:57

my bed and talking to me, not

16:00

about my latest biopsy results

16:02

or blood counts, but he would ask me what

16:04

I majored in in college, what

16:07

my most daring dreams were,

16:10

what I wanted to do after

16:12

all of this was over. And

16:16

it always confused me because I felt

16:18

like, he's this busy man, you

16:20

know, why is he doing this? And

16:23

I realized now that he was

16:25

reminding me of who

16:28

I was outside of these hospital

16:31

rooms and trying

16:34

to keep that sense of hope

16:36

alive for me.

16:38

Yeah, it sounds like you were forced

16:41

to stare death in the face, and

16:43

I'm wondering whether it

16:46

shifted your perspective on anything or

16:49

taught you something about yourself.

16:51

Yeah, you know, I think the experience

16:54

of confronting

16:57

death strangely can

16:59

have a clarifying effect, all

17:02

the artifice got stripped away,

17:04

and for me, I've felt my

17:08

self rerouting

17:11

my priorities. What had felt

17:14

important even just a few months before

17:17

no longer mattered. It didn't matter

17:20

that I'd strived and strived and

17:22

strived. It didn't matter

17:25

that I had all of these

17:27

ambitions, or that I had been a hard

17:30

worker. What mattered

17:32

to me was simple. I

17:36

wanted to

17:38

spend as much time with my loved ones

17:40

as I could, and I

17:43

think what it did for me was that

17:45

it released me from any sense

17:49

of self imposed or external expectation.

17:52

For the first time in my life, I was

17:54

free of expectation for

17:56

the first time in my life. My parents

17:59

were overjoyed and would pat

18:01

me on the back if I managed to walk

18:04

half a block to come home. That's how

18:06

low the bar was set for me.

18:09

And what surprised me is that

18:11

I felt a real sense of liberation

18:15

to do the things I wanted to do

18:18

simply because they nourished me, because

18:20

they felt life giving, and not because

18:22

they were the things I thought I should be

18:24

doing. And so, for

18:26

the first time in my life, I

18:28

began creating entirely

18:31

for myself. I began keeping

18:33

a journal that I used as a sort

18:35

of reporter's notebook, where

18:38

I would you write about the

18:40

different patients I was befriending,

18:44

you know, the guy down the hall who was trying

18:46

to encourage everyone to mount a hunger

18:49

strike because our meal

18:51

trace kept arriving with the food

18:53

still frozen. I wrote about

18:56

the nurses and the gossip

18:59

that i'd overhear by their station.

19:02

The real life Anatomy flat life,

19:04

exactly exactly.

19:06

I once asked a young resident if

19:08

her life resembled the cast of Grace Anatomy

19:11

in any way, and she told me that everyone

19:13

slept around just as much, but

19:16

that everyone was also far less

19:18

attractive, which was fun for me

19:20

because I got to sort of project all sorts

19:22

of steamy plot twists to

19:25

everyone coming into my room. But

19:28

I was doing things for the first time

19:30

in my life without

19:34

any sense of it

19:37

leading to something, without worrying

19:40

about productivity or output.

19:44

Wow.

19:44

That is so powerful, and

19:46

it just strikes me as

19:50

I look at my own life. I don't think

19:52

I've ever experienced a period of my life in

19:54

which I did not feel almost

19:56

an obsessive need to be productive

19:59

and meet expectations.

20:01

I think most of us feel that way. That

20:03

was something I also hadn't experienced,

20:05

probably from the time that I was like four

20:08

or five years old, when I

20:10

can make a big, glorious mess

20:12

with finger paints and revel

20:15

in the mass and not worry about if

20:17

it was any good. And I think,

20:20

you know, shedding that pressure

20:23

to do something well allowed me

20:25

to play and to experiment

20:29

with different forms in a way that

20:31

I wouldn't have allowed myself. I wouldn't have allowed

20:33

myself the time to just try

20:35

things for the health trying them. Yeah,

20:38

to read things because they

20:40

piqued my interests and I didn't know why. And

20:43

I had never had that

20:45

luxury of time, which is an

20:47

irony, because of course, you

20:49

know, time felt more precious

20:52

and fleeting than ever before. And

20:56

in writing in that way, I

20:59

wasn't concerned with writing

21:02

well or beautifully or even

21:04

gramatically. I was really

21:07

interested in pushing

21:10

myself to dig

21:12

for the truth beneath the truth, beneath

21:15

the truth. I wasn't trying to impress

21:17

anyone. I wasn't trying to

21:19

sound smarter than I was to

21:22

imitate anyone. I

21:24

was just following

21:26

the threat of curiosity wherever it

21:28

led me. And so because I was so

21:31

mired an uncertainty. I had no

21:33

idea what the next couple of hours

21:35

were going to bring, let alone the next day

21:38

or the next week. And because

21:41

initially that writing was

21:43

just for myself, for the first

21:46

time in my life, I felt

21:48

like I had finally found my voice.

21:53

We'll be back in a moment. With a slight change

21:56

of plans

22:09

against the odds, and after months of

22:11

grueling chemotherapy and extreme isolation,

22:15

Suleka's clinical trial was deemed

22:17

a success. The next

22:19

step in her treatment would be a bone marrow

22:21

transplant, a high risk, complex

22:23

procedure and her only chance at

22:25

survival. As

22:28

her transplant approached, she began reflecting

22:30

on what exactly she wanted to say about

22:32

her experience with cancer.

22:35

I began to read every illness

22:37

narrative that I could get my hands on, but

22:41

so many of them, the beautifully

22:43

written and wrenching and

22:46

profound, didn't speak

22:48

to me, because more often than not, they

22:50

were written from the perspective of

22:53

someone who had survived. And I started

22:55

to notice that there was this kind of hero's

22:57

journey arc to illness

23:00

narratives, where you return

23:02

from the thing that nearly killed you better

23:05

and braver and stronger

23:07

for what you've been through, and that

23:10

couldn't have applied less to

23:12

me. I was terrified, I was

23:15

struggling, I was isolated, and

23:17

I wanted to put all of that into ink. And

23:20

so what I began to do was to

23:22

write about the very things that felt

23:24

impossible to talk about. I

23:27

wrote about the infertility

23:30

caused by my cancer treatments.

23:33

I wrote about the experience of

23:36

falling in love while falling sick.

23:39

I wrote about the in betweenness

23:41

of young adulthood. I wrote about navigating

23:44

our healthcare system and all of its

23:47

complexities. I wrote about the sense of

23:49

guilt and the feeling of

23:51

being a burden that so often

23:54

comes when you're acutely

23:57

sick. I wrote about all of it. Tony

24:00

Morrison said, if you

24:02

want to read a book and it doesn't

24:04

exist, then you must write it.

24:07

And so I think, in my own small way,

24:09

that was my version of doing that. And

24:12

so I decided,

24:15

because I was pretty limited

24:18

within my options, to start a

24:20

blog, a really simple blog, and

24:22

it felt so good to

24:25

have a job that I could do other

24:28

than merely being a patient.

24:31

And to my great surprise,

24:34

the blog was passed around

24:36

and the journalism professor of mine

24:39

sent it along to an editor at the New York

24:41

Times, and she called me up and asked

24:43

if I might want to publish an essay.

24:46

And because I was facing

24:49

the possibility of imminent

24:51

death, I shot my shot

24:53

and I said, I don't want

24:55

to write an essay. What I'd like

24:57

to write is a weekly column

25:00

written from the trenches of that uncertainty

25:03

where you don't know how the story is going

25:05

to end. And I went on and

25:07

on and on, and at

25:10

the end of it, to my

25:13

great surprise and then terror

25:15

her, she said, okay, we

25:18

will try it for a couple of installments

25:20

and see how it goes. And I had never

25:22

been published before, I never had a byline,

25:25

and certainly not in a place

25:27

like the New York Times. And what began

25:30

as elation immediately turned

25:33

to a sense of, Oh shit, how

25:36

am I.

25:36

Going to pull this off?

25:39

What did it feel like to

25:41

put these essays this call them out into

25:43

the world while you were so unbelievably

25:46

sick and going through the bone

25:48

marrow transplant.

25:50

It was extraordinarily challenging,

25:53

in large part because I had new limitations.

25:56

I was exhausted, I was physically

25:59

ill in ways that were unpredictable,

26:02

and so I would work

26:04

in these short ten minute

26:06

installments throughout the day

26:09

and take naps in between. And

26:11

it was slow and plotting

26:14

and frustrating, and of course through

26:17

many moments where I felt,

26:19

you know, this deep sense

26:22

of anger at how

26:25

different my body was, and I felt

26:27

the sense of my ambition,

26:30

you know, bumping up against my limitations.

26:33

But it was also an exercise

26:36

for me, a first lesson really

26:38

in not only

26:40

accepting those limitations, but trying

26:43

to find creative workarounds.

26:45

And it occurred to me as

26:47

I started to look to examples

26:50

throughout history of artists

26:52

and writers who found themselves in similar

26:55

situations, that

26:58

the limitations could actually

27:00

be creatively generative

27:03

themselves. So I

27:05

was obsessed with Free to Callo,

27:07

who had a similar age, had,

27:09

of course, found herself in bed

27:11

and began making these

27:14

beautiful, heartbreaking self portraits

27:18

that led to her becoming one of the most well

27:20

known artists throughout

27:22

time. I read Sarah Manguso,

27:24

I read Lucy Grayley, and I began

27:27

to get curious

27:29

about how my limitations

27:32

will challenging were actually

27:35

twisting my mind out of its usual

27:37

rut. And I began to realize that,

27:39

really, you know, survival is its

27:41

own kind of creative act. When

27:44

you have chemo sores

27:47

in your mouth and throat that make it impossible

27:49

to speak, you have to find new ways to communicate.

27:52

When you're confined to a bed,

27:55

you have to use your imagination

27:58

to travel when

28:01

you can't move, you have to find

28:04

new ways of entertaining

28:07

yourself. And so I began to

28:09

get curious about that and open

28:13

to whatever it was that emerged.

28:16

And what was the response like to the

28:18

column.

28:18

The column, which was called Life Interrupted,

28:21

launched during that first week in the Bone

28:23

Mirror transplant unit, and

28:25

it was such a bizarre moment of

28:27

contrast because I was sicker

28:30

than I'd ever been. And the

28:33

morning after the

28:36

column went live, I

28:39

opened my inbox and found

28:41

hundreds and hundreds of

28:44

letters and notes from people

28:46

all across the world. And

28:49

after being so profoundly isolated

28:52

for a year, it was like this portal

28:54

had opened onto

28:56

the rest of the world, and I felt a sense

28:58

of connection that I hadn't felt

29:00

before. I heard from

29:03

a young man down the hallway

29:05

from me in the transplant unit who

29:07

was going through the same thing I was going through,

29:09

And I never met anybody my age

29:12

with my same illness. And I'll never

29:14

forget one day when I was being

29:17

wheeled down the hall to get a

29:19

CT scan, I paused

29:21

at this door and we couldn't meet

29:23

because the germ risk was too high. But

29:25

I knocked on the window and he

29:28

waved and I waved, and just

29:30

that tiny little moment, that

29:33

sense of being seen

29:37

and known and that you're not alone,

29:40

and that particular kind of suffering,

29:42

gave me a

29:45

sense of hope that fueled

29:48

me in those coming weeks.

29:51

What surprised me most though, was

29:53

I wasn't just hearing from young

29:55

people with cancer. I was hearing from

29:58

all kinds of people dealing with all

30:00

kinds of life interruptions. And

30:03

one of the very first letters

30:06

I received was from a man

30:08

by the name of Quinn Jones who was

30:10

on death row in Texas, and

30:12

he had read a column where I'd written

30:14

about that sense of being in

30:17

solitary confinement as I was,

30:19

that sense of waiting

30:22

for a verdict that is going

30:24

to determine your future. For me, of

30:26

course, you know that verdict meant

30:28

biopsy results and all kinds

30:31

of other tests. And he

30:33

wrote me this beautiful letter in

30:36

long hand cursive, and

30:38

he explained that he had been on

30:40

death row for more than half his life,

30:42

from the age of eighteen, and

30:44

that even though, of course our

30:46

circumstances were different, he

30:49

understood how

30:51

it felt to be

30:54

confronting your mortality and

30:57

waiting to find out where

31:01

the gavel landed. And

31:03

it was just one of the most humbling,

31:07

dizzying experiences I've got had.

31:09

But more than that, you know, I think

31:12

there's a way in which, when you're in

31:14

pain, that pain

31:17

can turn you selfish, and in a

31:19

way it's necessary. You have to

31:21

be preoccupied with what's happening

31:23

with your body and accounting how

31:25

you're feeling, and you know, making

31:28

sure that you're keeping yourself alive.

31:31

But in the act of writing,

31:34

in the act of daring

31:36

to be vulnerable, which had

31:38

felt frightening and uncomfortable, I

31:41

realized that deep,

31:43

unvarnished vulnerability creates

31:45

a reverberation where vulnerability

31:48

begets vulnerability begets vulnerability.

31:51

And so in writing

31:53

my story, I was getting

31:56

the privilege of hearing so

31:58

many stories from so many

32:00

different people, from so many different walks

32:03

of life, and

32:05

it was I think a much needed

32:08

reminder for me that we

32:10

all have these life

32:13

interrupted moments, these

32:15

things that happen that

32:17

bring you to the floor. And

32:20

there was a kind of equalizing

32:24

sense to that, a sense that

32:26

I wasn't alone, and that I

32:28

wasn't special, and that

32:31

I was part of, you

32:34

know, the human experience.

32:37

Yeah, I'm getting emotional in this moment because

32:40

one of those messages was for me.

32:42

I remember I.

32:45

Read I think I reached out to you on Facebook,

32:47

but I was I think we're around the same age

32:49

I was in my early twenties. I remember when your first

32:51

column came out. I remember experiencing

32:55

I mean again nothing, Well, we're not supposed

32:57

to compare suffering, so I'm not going to do that for your sake,

32:59

for your Olympics. I know, no suffering lipings,

33:01

but I had been experiencing just

33:03

one of the most acute, crippling

33:06

bouts of anxiety that I had ever experienced,

33:08

and You're your column

33:11

was so transformative

33:13

for me. So like, thank you, I guess in

33:16

hindsight for

33:18

the way that you made me feel in that moment and

33:21

for what you did for young like twenty

33:23

something my I mean, I can't imagine the

33:25

number of lives that you

33:28

be touched through the column, but just a personal

33:31

thank you from me for that.

33:34

Now I'm crying. Luckily

33:37

this is a podcast on

33:41

the Drippy Masskcara.

33:43

Yeah. But I think what's

33:45

interesting looking back is when I sent

33:47

you that note, like, I wasn't ready

33:49

to be vulnerable about the anxiety that I was

33:51

facing, but it was enough for me as a reader

33:53

to see that you were like,

33:56

that's part of the equation for progress

33:58

is you just see it reflected in someone else,

34:00

and you'll take your own time with whatever

34:03

your own things are, but eventually you'll feel

34:05

comfortable talking about them.

34:08

I feel the same way, and I think you know more

34:10

than a writer. I'm a reader first,

34:13

and part of why I've

34:16

always been a

34:18

wrath and this reader, you know, from the time

34:21

I was very little, was that

34:24

moment that I'm sure

34:26

you've had that maybe someone

34:28

listening has had, where you're reading a

34:30

novel or a memoir or a poem

34:34

and you glimpse

34:38

a sense of recognition, a

34:40

sense of being known, or

34:43

of thinking, oh, I didn't know. I was allowed

34:45

to admit that I didn't know. I was

34:47

allowed to feel that or to say that.

34:50

And that is the

34:52

moment that I'm always looking

34:56

for when I'm reading, and it's the moment

34:58

I'm always striving for when I'm

35:00

creating and writing.

35:03

Well, mission accomplished. So

35:15

just to bring listeners up to speed on your situation.

35:18

So, the bone marrow transplant ended up being

35:21

a success, but even though

35:23

you were now in remission, your treatment

35:25

did not end there right. You

35:27

would need to take maintenance chemotherapy for

35:29

several years to help prevent the leukemia

35:32

from coming back. I'm

35:34

so curious to know what was that period of

35:36

time like for you.

35:38

It was a strange time in my

35:40

life because you know, I felt

35:43

this pressure to get back to it,

35:46

to get back to the land

35:48

of the living. But the reality was

35:51

that my transplant and

35:54

the treatment I had done had left these

35:58

permanent imprints on my life,

36:00

everything from really reckoning,

36:04

say with the

36:06

loss of my fertility and the idea of

36:08

motherhood as I'd known it, to

36:11

a deep sense of anxiety.

36:14

I think that comes when the ceiling

36:16

has caved in on you and you no longer

36:19

assume structural stability. I didn't feel

36:21

safe in my body. Every cough

36:24

sparked a fear of relapse. Every

36:27

voicemail from the doctor's office

36:29

would send my pulse racing,

36:33

and I think, you know, more

36:35

than anything. When I was finally

36:38

done, what that meaning schemo. When

36:41

the port in my chest was

36:43

removed, I expected

36:46

to feel a

36:50

deep sense of gratitude

36:54

and relief, and more than that, I

36:57

expected to quickly and organically

37:00

fold back into the world of the

37:03

living. But that didn't happen, at

37:06

least not in the way that I'd hoped.

37:08

I was really struggling. I

37:12

had spent at that point four

37:14

years in the kingdom of the sick that had

37:16

been my whole world, and I

37:18

had figured out, you know, how to build a home

37:20

for myself there. I'd even curved out

37:22

a career within its conscience.

37:25

And to my surprise, it

37:28

was the outside world that suddenly

37:31

felt scary and overwhelming

37:33

to me. I was no longer a

37:35

patient and I couldn't

37:37

go back to twenty two

37:39

year old me. But I had no idea

37:42

who I was and how to find

37:44

my way forward, and I felt a

37:46

deep sense of shame. Because

37:48

I was alive. I was lucky to be alive.

37:50

I knew that so well. Out of

37:52

the ten young cancer comrades

37:55

as we called each other that I

37:57

befriended during my time and treatment, only

38:00

three of us were still there, and

38:04

I felt that I

38:06

should move on with my life. And

38:09

as it turned out, moving on

38:12

begin to feel more like a mirage or

38:14

a myth, because we don't get

38:17

to compartmentalize

38:20

the most painful parts of our past.

38:22

We can't, you know, skip over

38:24

the hard work of healing and

38:27

graving, and so instead

38:29

I began the long journey

38:32

not of moving on, but of trying

38:34

to find my way forward,

38:36

to move forward with all that had happened.

38:39

Yeah, and listening to you, I'm hearing what

38:42

a unique kind of loneliness post

38:44

remission life presents to a person because

38:47

and it's so rarely spoken about, which is there's

38:50

this idea, you know, you're one of the lucky

38:52

ones, Uleka, just like, go

38:54

take your success story and move

38:56

on. And it's

38:59

such a disservice to the

39:02

transition and how hard.

39:04

That kind of re entry is.

39:06

Yeah, you know.

39:07

It's when you're in the throes

39:09

of cancer and you tell people I

39:12

have aggressive leukemia. There's an instant

39:14

kind of compassion or simply that they can

39:16

lend you. When you tell people I'm

39:19

a recent cancer survivor, you

39:22

don't what they say is congratulations, congratulations,

39:25

right, I mean, that's that's the problem,

39:27

congratulations, whereas the reaction

39:31

maybe, I mean it should be maybe congratulations,

39:33

but like maybe not and if it is congratulations

39:36

and is congratulations, and let's

39:38

have a discussion, you know.

39:40

Yeah, so just tell me more more about that.

39:42

Yeah. So, you know, while on treatment,

39:45

I'd had this cavalry of

39:47

doctors and friends and family surrounding

39:50

me, and pretty

39:52

instantly when I

39:54

got that all clear done

39:57

with chemo, I had

39:59

this sense that everyone

40:01

around me thought it was over, maybe

40:04

because they wanted so badly to think it

40:06

was over, but it wasn't over,

40:09

you know, really grappling

40:13

with what I later understood to

40:15

be PTSD post traumatic

40:17

stress disorder. Because I had been so

40:19

focused on surviving for

40:22

four years, it hadn't even occurred

40:24

to me that there's a wide

40:26

gap between surviving and living,

40:29

and that while I was an expert

40:31

at surviving, I didn't know how to live. And

40:35

in a strange sense, it was the hardest,

40:38

most isolating transition because

40:41

I didn't have treatment protocols,

40:43

I didn't have doctors telling

40:45

me what to do. I was entirely

40:49

on my own to figure out

40:51

how to make this transition and

40:53

so at first,

40:56

I, almost like an anthropologist

40:58

might, was like looking around

41:01

at my friends and thinking to myself,

41:03

what is a normal, healthy twenty

41:05

six year old women do

41:08

and trying to emulate that, which,

41:10

of course, you know, wasn't working.

41:13

I was still healing

41:15

physically from this experience, but more

41:17

than that, emotionally and spiritually,

41:20

And it took me a while to

41:24

understand and acknowledge

41:27

to myself that the

41:29

hardest part of

41:33

this experience was going

41:35

to be its aftermath, because

41:38

that's where my own work was going

41:40

to begin. And as

41:43

much as we

41:45

think of recovery as some

41:47

sort of gentle self

41:50

care spree involving you know, massage,

41:53

therapy and you know whatever else,

41:56

for me, at least it was truly this

41:59

kind of terrifying, brute

42:02

act of discovery.

42:09

Hey, thanks so much for listening. There's

42:12

so much more of Suleka's story I want

42:14

to share with you, So we've released

42:16

a part two of our conversation that

42:18

you can listen to. Now, we talk

42:21

about the creative and adventurous way

42:23

Suleka navigated her transition back

42:25

to the Kingdom of the Well. We

42:27

also talk about her recent experience

42:30

re entering the Kingdom of the sick.

42:32

Relapse was my biggest

42:35

fear. It was this fear that

42:37

I had nursed in the early years

42:39

and that had slowly, little by little

42:42

shrunk, but it was always a specter, and

42:45

so to be confronted

42:48

with that worst sphere for it to

42:50

come to pass was devastating.

42:54

The second part of the story is available now

42:57

in the feed for A Slight Change of Plans. If

43:01

you enjoyed our conversation, we on the

43:03

Slight Change team would really appreciate

43:05

if you could share this episode with someone you know

43:07

who's going through their own life interrupted

43:10

moment and need some help navigating

43:12

that uncertainty. We'd also

43:14

be grateful if you took a moment to follow the show

43:17

on your podcast app of choice and

43:19

to write a review. It helps

43:21

more people discover the show and helps

43:23

us keep making more episodes for you.

43:25

Thanks so much. A

43:37

Slight Change of Plans.

43:38

Is created, written, and executive produced

43:40

by me Maya Schunker. The Slight

43:42

Change family includes our showrunner Tyler

43:45

Green, our senior editor Kate

43:47

Parkinson Morgan, our senior producer

43:49

Trishia Bobida, and our engineer

43:52

Eric oh Wang. Louis Scara

43:54

wrote our delightful theme song and Ginger

43:56

Smith helped arrange the vocals. A

43:59

Slight Change of Plans is a production of Pushkin

44:01

Industries, so a big thanks to everyone

44:03

there, and of course a very

44:05

special thanks to Jimmy Lee.

44:08

You can follow a Slight Change of Plans on Instagram

44:10

at doctor Maya Schunker.

44:12

See you next week.