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1:00

Topia from

1:02

PRX. From PRX's Radio

1:04

Topia, this is Radio Diaries. I'm Joe Richman.

1:07

Today, we're revisiting one of our favorite stories

1:09

from years ago with a new twist.

1:14

Over 20 years ago, I met a teenager

1:16

named Laura Rothenberg and gave her a tape

1:18

recorder to document her life. She

1:20

was 19 at the time, a college student

1:22

with a love of swimming and writing poetry.

1:25

She also spent most of her life knowing that she was

1:28

going to die. Laura

1:30

had cystic fibrosis, a genetic disorder

1:32

that affects the lungs. When

1:35

she was born, the life expectancy for a person with

1:37

CF was only 18 years. Laura

1:40

liked to say she went through her midlife crisis when she

1:42

was a teenager. For

1:44

two years, Laura kept an audio diary of

1:46

her attempts to live a normal life while

1:48

battling CF. Her story aired on

1:50

NPR in 2002. Laura

1:52

passed away one year later. I

1:55

still think a lot about Laura. One

1:58

of the things she wanted was to be remembered. to

2:00

leave something behind. It's why

2:03

she wrote so many poems, like this one.

2:32

But after a while the walk tires me, the

2:34

coughing starts. Deep, penetrating

2:37

sound that hurts nature's ears.

2:41

Heart racing so fast that it doesn't have time to

2:43

run errands. Alarm clock

2:45

in my head reminds me I should

2:47

stop and take life in.

2:51

My eyes close only to be

2:53

opened. The fog in

2:56

my thoughts slowly thins and

2:58

the truth shines through. As

3:01

I walk along the path I

3:03

am afraid that I will miss more. The

3:05

Barrier Reef in Australia, the

3:08

gondolas in Venice, the fried food

3:10

in New Orleans, like I almost

3:12

missed tonight's beauty. Afraid

3:15

that I will reach the end of this dirt

3:17

path too soon. That's

3:20

Laura's poem, That Night in Bennington,

3:22

read by actress Taylor Schilling. It

3:25

was one of Laura's biggest wishes to publish a

3:28

collection of her poetry, and this

3:30

year that wish came true. The

3:32

new book is called When Poetry Visits. We'll

3:35

bring you another poem and tell you how you can find the

3:37

book at the end of the show. Laura's

3:40

poems touch on her relationships and her body

3:42

and her life in and out of hospital

3:44

rooms, a lot like the audio diary she

3:46

made with us 20 years ago. So

3:49

to mark the occasion, we're replaying Laura's

3:51

diary. Here is My

3:53

So-Called Lungs. It's

4:01

about 11.02pm. I'm

4:05

here in the hospital. I've been

4:07

here for five days now. I'm

4:09

in room 1004 this time. That's

4:13

me coughing. Hello. This

4:18

is Karina. She's one of my favorite

4:21

nurses. Yeah, we can put

4:23

that. I

4:26

have a sort of status in the hospital. They

4:29

don't even say my last name. It's

4:31

like, oh, Laura's coming in. You

4:34

know, I've seen patients come and go, and

4:36

I've seen nurses come and go. I've seen

4:39

medical students become interns,

4:41

become attendings. It's

4:44

like my hotel. Okay,

4:48

Karina's going to stick me 22 and

4:50

3 quarter needle. In we

4:52

go. I don't feel a thing. Ooh,

4:56

that hurts. I

4:58

don't have to be on death's

5:00

door to go into the hospital. We

5:03

got a blood return. Now we're flushing

5:06

it. Nice blood return now flushing.

5:09

They call them tune-ups. It's

5:11

almost like you charged the battery on

5:13

your cell phone. And

5:16

now we're going to hook me up back to my

5:18

antibiotics. Yeah,

5:23

that was quick, easy, no pain.

5:25

She is. Get

5:35

back into bed here. My nice,

5:38

comfy electric bed. I

5:45

was diagnosed with cystic fibrosis when I was 3

5:47

days old. It

5:50

was 1981, and I guess at that time, my

5:55

parents really didn't know

5:57

how long I would end up living. The

6:01

average lifespan of a person with

6:03

CF was much

6:05

younger than it is now. When

6:08

I was 12 and 13, I met

6:10

a lot of kids in the hospital with CF. They

6:13

were sort of like a whole gang, you know, they were

6:16

all the CF kids. And we'd

6:18

just play cards and talk dirt about

6:20

the nurses and watch TV

6:22

shows at night, ride down

6:24

the hall on IV poles. There

6:27

was just this sort of bond, you know. Gina

6:31

died when we were 13. Damien

6:34

died that year. He was 17. Nikki

6:37

Cooley died. Tamisha died. Elizabeth

6:40

Florin died winter of 12th grade.

6:43

My friend Sophie died when I was in 11th

6:45

grade. She was one of my best friends with

6:47

CF. My

6:51

friend Marcy died this past summer. Do

7:01

you hear how quiet it is? This

7:04

is the sort of after hours. Calm.

7:08

Everyone's asleep. I

7:12

like nights in the hospital. Goodnight.

7:23

This is Laura. Back

7:25

again. Dad

7:28

and I are on the Bruckner. We're

7:30

driving up to Providence. I

7:33

agreed to let him drive. I

7:37

just spent about four or five days

7:39

in the hospital again for partial

7:41

bowel obstructions. So that was thrilling

7:45

as ever. And luckily it

7:47

was only a partial obstruction. So

7:50

they were really excited about that. Of

7:53

course, at the moment I wasn't

7:55

as excited because I had a tube in my

7:57

butt and it's a little bit hard to be

7:59

excited when you have a tube in your butt. When

8:02

you say dad, why

8:06

are you crying? Well

8:10

I mean it's

8:13

hard to talk about this you

8:15

know not knowing what's

8:18

gonna happen next and

8:23

you go ahead with your life as best

8:25

you can. So

8:38

now for a little lesson. Here's

8:42

the deal with CF. Basically

8:44

your body produces abnormally

8:47

thick sticky mucus that

8:49

resides in the lungs and

8:52

the lungs are sort of the deadly part

8:54

of the disease in that after

8:57

years of infection

8:59

the lungs sort of get

9:01

worn away and deteriorate.

9:06

Most people who see me on the street wouldn't realize

9:08

how much harder I work to breathe

9:10

or even people who know me

9:12

don't really realize it because over

9:14

the years I've got

9:16

better and better at

9:19

sort of hiding the

9:21

fact that I have

9:23

trouble breathing. It's funny

9:30

sometimes sometimes

9:33

I cough so hard that

9:35

I can see stars. So

9:43

I'm back here at Brown. Costas

9:46

started on Wednesday. Yeah

9:48

thanks good to see you. I

9:51

think that people who know me who really

9:53

know me who are my friends don't

9:56

see me as someone who is sick.

9:59

They see me as is Laura, you

10:01

know, who's a sophomore at Brown. And

10:04

it's hard for them to imagine, you

10:06

know, oh, she might not be here in a

10:10

few years. They

10:12

know I have CF. They know that it

10:14

means that you get very sick and that

10:16

you die. But they

10:19

see me, and it's hard for them to

10:21

make it real because they don't want to, because no

10:24

one wants to, because, you know,

10:26

they want me to live forever because

10:29

I'm their friend. The

10:34

truth is that even though I'm

10:37

always thinking about health-related

10:39

stuff, I don't want

10:41

to come off as someone who's purely thinking

10:43

about health-related stuff. I

10:46

think that's kind of boring. My

10:49

nephew's here. Is that it?

10:51

You hear me? Go, go, go, go, go, go, go,

10:53

go, go, go, go, go, go, go, go, go, how

10:55

do you feel? Hi.

11:07

I'm actually wearing my oxygen just because

11:10

it's easier for me to breathe.

11:12

It's on. That's

11:15

why I'm wearing the oxygen. I'm

11:19

not feeling very well the

11:21

past week. I get into

11:24

these really bad coughing, and

11:26

I just have trouble walking,

11:31

feeling kind of tired. I

11:34

don't know. It's frustrating. Even

11:38

though people say that it's supposed to get so

11:40

much worse, I

11:43

don't quite understand how. How?

11:48

I'm expected to just watch it get worse.

11:52

This is not OK. I'm in

11:55

on a Friday night. I'm

11:57

in college. I'm 19. I

12:00

should have gone to this play I was supposed to go

12:02

to. I should have gone to these

12:04

two parties I was invited to. And

12:07

inside I'm here. This

12:10

is frustrating. I

12:15

want to be like

12:17

my peers, but

12:21

I don't know how. Anyway,

12:27

I'm gonna give you a go to pass. Hi.

12:48

It's a couple days after my birthday. I'm

12:51

20. It

12:57

just sort of all hit me today. I

13:00

was lying on the couch in the living room

13:03

and the sun was setting. And

13:05

I just knew it. And

13:08

it was at that moment that I really felt

13:13

that I wouldn't be

13:15

alive at New Year's. The

13:19

last few weeks, I definitely have

13:21

felt that I was starting

13:24

the dying process. And

13:27

it's just a matter of when, how

13:30

fast, how much at a time. It

13:35

didn't make sense to push the limit. Try

13:38

to see how long I could last with these old

13:40

lungs. I

13:45

decided I'm gonna try

13:47

the lung transplant. You

13:51

know, there are risks with it. The

13:53

obvious one of course being if it

13:56

doesn't go well and I die. I

14:00

didn't want to just go downhill

14:03

without trying to stop

14:05

it first. Wait,

14:11

where is she right now? Wait,

14:14

so we're waiting until she takes the box off and then we're

14:16

saying yes? Yeah.

14:23

Okay. All

14:33

my friends came to this long

14:35

retirement party. We

14:37

are gathering here this evening

14:39

just to send a floor

14:41

up with her out as she leaves from

14:45

temporarily as a student. Well,

14:47

I've decided to leave college

14:50

and go up to Boston. That's

14:53

where the hospital is and wait

14:55

there for my transplant. I

14:57

have the poster that my friend designed

15:00

that says thank you to

15:02

the lungs of Laura for 20 years

15:04

of exemplary service. So

15:06

that's kind of neat. Well, that's

15:08

a wrap. Hello.

15:19

Julie. Hi. Yeah,

15:27

I haven't talked to you

15:29

in a long time. Oh,

15:32

it's okay. You know, I'm

15:34

sort of just sitting here

15:36

waiting for lungs. Yeah,

15:41

but they've had what they're calling a lung drought.

15:44

You know, there's nothing I can do to

15:46

make it happen. You know, sort

15:48

of going out and hitting someone with a car. Yeah,

15:53

I do. Okay,

15:56

I'll talk to you soon. Love you.

15:58

Bye. Mom?

16:02

Mom? My

16:09

dad and my mom are very worried. They

16:12

wish they could do something. But? We

16:17

don't spend a lot of time talking about it. I

16:20

remember even when

16:23

you were younger, before even the question of the

16:25

transplant came up, I

16:27

watched you go through this,

16:29

I watched you get very ill. Still,

16:32

I have never really

16:34

been able to experience what

16:37

you've been experiencing, and at times,

16:42

you know, had no idea what you were going through.

16:46

I remember that we

16:49

were always wondering about

16:52

how to talk with you about what the disease

16:54

meant, and it

16:56

never seemed to be the right moment, for any particular

16:59

reason, to throw this at you. And

17:02

then there was this particular

17:04

time when there was something on

17:06

the news about cystic fibrosis, and

17:09

you were... I was 11. You

17:12

were 11, and you

17:14

told me that, Dad, this will probably be

17:16

in the

17:18

paper tomorrow, and

17:20

why don't you cut it out for me, and

17:23

I'll read it on the school bus. So

17:25

I went to the paper, and exactly

17:27

what I feared had happened, in the last sentence,

17:30

it said cystic fibrosis is the most common genetic

17:32

disease in the average life expectancy, 18

17:34

years or 21 years or whatever it was. So

17:37

I thought, I can't have you... I

17:40

can't have my daughter read

17:42

this on the school bus, go on the school bus

17:44

and read this, that she's going to die at an

17:46

early age like this, and by now you would understand

17:48

what it meant. And

17:51

so I thought to myself, I've got 10 minutes

17:53

to tell my daughter she's going to die. And

17:56

I went in the kitchen... You

18:00

were having your Cheerios and I

18:03

said to you Laura, you

18:05

know this illness you have the cystic

18:07

fibrosis. It's a it's a serious illness

18:09

and Such was the

18:11

tone in my voice that you kind

18:13

of got it immediately and you became very

18:16

tremulous and you said you mean I'm

18:19

going to die and when

18:22

you said it in that tone of voice I completely

18:24

broke down and I was

18:27

crying and I said to you which was true that

18:31

It's my dream that you should outlive me And

18:35

at this point it was

18:37

really remarkable you were Put

18:41

our arbor out be And

18:46

began to comfort me I I Got

18:51

a phone call that afternoon that said dad That

18:54

article the point of that article is that

18:57

there's hope isn't it? Isn't that what the point is

18:59

and I said yes Laura That's the point of it

19:04

I Remember

19:07

that conversation You

19:20

reach Laura the news this 15th of

19:22

July is what Laura is today having

19:24

her lung transplant Well

19:33

It's about 10

19:35

to 8 in the morning. I am

19:38

here in the hospital the

19:41

Sun has just come up and The

19:45

animal curtains are pulled across my

19:47

window But there's just a

19:49

little bit of light showing through into my room

19:52

and it's shining on my toes You

20:02

know, the surgery is going to happen and

20:04

it's weird. When

20:07

I go in the OR, I always like

20:10

to look at all the monitors when I'm lying

20:12

on the table and all the

20:14

faces and the lights. The

20:17

lights are really bright. There's

20:19

sort of this feeling of once

20:21

the anesthetic is in, everything's

20:24

sort of hazing out, forcing

20:26

you to close your eyes. And

20:28

I always try to keep my eyes open as

20:31

long as I possibly can to remember

20:34

the last moment that I

20:36

was awake. And

20:38

it's so hard to do that. It

20:42

always wins out. You

20:57

have one message. Hi,

21:00

my name is Lauren. I am a friend

21:02

of Laura Rothenberg's. She

21:05

came out of the surgery well last

21:07

night. She has beautiful new

21:09

lungs and more updates

21:11

will come. All right, bye-bye.

21:23

That sound. Those

21:28

are my new lungs. And

21:32

this is a picture. It's

21:34

in the OR and they're taking the lungs

21:37

out of the ice and it's

21:39

a close-up and it's in like a metal basin

21:41

type thing. It's my

21:43

lungs. Up close,

21:45

it just looks like a turkey basically.

21:48

Bye, thank you. Good luck with everything.

21:50

Thanks. I'm leaving

21:52

the hospital after 19 days

21:56

and it's very exciting. Most

22:06

people ask how does it feel?

22:08

Like how does it feel different

22:10

to breathe? And it's

22:12

funny because it feels like

22:14

a completely different body.

22:18

Sort of everything about it seems new. I

22:21

don't know it like I knew my body

22:23

before. It's like a whole

22:25

new ball game. This

22:52

is Laura and I'm sitting

22:54

here with my cat goss who's asleep. I

22:59

haven't talked in a while. On

23:01

Monday it'll be a year since

23:04

my lung transplant. So I'm

23:08

happy I've made it a year. But

23:12

it was

23:14

not the year that I dreamed of. Complication

23:18

after complication after surgery after

23:22

surgery and reduction in lymphoma.

23:25

I've had to get a feeding tube put back in

23:27

because I've lost so much weight. You

23:31

know I think to

23:34

get to the transplant I really had to pretend

23:37

that the transplant would do

23:39

more than it realistically could do for

23:42

me. My

23:45

whole life I've been searching for something to

23:47

fix me. And

23:50

it hasn't. I

23:54

definitely think about after

23:56

I'm gone. I've

24:00

always been scared that people will forget about

24:02

me. But

24:07

I'm also here right

24:09

now. So

24:11

it's about trying to come to a place

24:13

where I can just accept that

24:16

things have gone the way they've gone and

24:20

accept that it's never going to be perfect. You

24:25

know, I'm well enough to go

24:27

back to school. I'll

24:29

be a junior. You

24:32

know, I want to walk from my

24:34

dorm to the main green, maybe

24:37

even play soccer, which I haven't done

24:39

for like eight years. No.

24:46

But I don't

24:48

really count on anything anymore. I

24:52

just go with the flow. I

24:56

think that's okay. That

25:11

was my so-called lungs, the audio

25:13

diary of Laura Rothenberg. Over

25:16

the following year, Laura's new lungs began

25:18

to fail, and there was no

25:20

more fixing to be done. She

25:22

died at the age of 22. In

25:25

the months before she died, Laura organized

25:27

her own memorial service. She

25:29

decided she would be cremated and her ashes would be

25:31

scattered into the ocean where she had gone as a

25:34

kid. She said goodbye to

25:36

more than 100 friends and relatives with

25:38

a detailed appointment calendar. And

25:40

she wrote this poem. My

25:43

Last Party by Laura Rothenberg.

25:47

Mom said, the party will start across

25:49

the street. The tall

25:51

building with its steeple has always

25:53

been my favorite. Those

25:55

stained glass windows with their blue light

25:57

makes me warm inside. Cars

26:00

of all sizes pull up to that

26:02

place that has hosted weddings and

26:05

christenings, and now my party

26:07

too. So many people

26:09

walking in, slowly, with their

26:11

heads down. Why

26:13

isn't anyone talking to me? The

26:16

party starts late. I hate it when

26:18

parties start late, but when I am

26:20

not running them, anything can go wrong.

26:23

It took over an hour to find seats for the world.

26:26

Some even had to stand. My

26:29

high school friends sit together, so good

26:31

to see them after so long, and

26:34

there are hospital staff, residents

26:36

and nurses present and past.

26:39

Even the psychotic security woman is here.

26:42

My family sits in front. Erin

26:44

flew from her art museum in California.

26:48

Friends from around the world have gathered for

26:50

my party. It

26:52

is finally going to start. There

26:54

is music. People have written

26:56

songs for me, and there

26:58

are prayers, and poetry. So

27:01

much poetry. They even

27:03

read some of mine. And

27:06

then my father speaks. He

27:08

looks so sad. Why

27:10

are you crying, Daddy? I am

27:12

your baby. I am right here. Don't

27:15

cry. I sit

27:17

and hold my mother's hand. So

27:20

delicate and tired, she has done

27:22

so much for me. I

27:24

wish she knew I was here with her. Her

27:27

eyes, my eyes,

27:29

swollen shut from crying. This

27:32

is meant to be a Remembrance Day, one

27:35

that honors me. But

27:37

honored I am not. I

27:39

didn't live for it to be over. The

27:42

bagpipes play as the world crosses

27:44

the street. That

27:53

was My Last Party by Laura

27:55

Rothenberg. You can find

27:57

Laura's book when poetry visits at Cottage.

28:00

He is