UNIDENTIFIED ANNOUNCER: Listener-supported WNYC Studios.

JAD ABUMRAD: Before we start, just want to let you know, there's a moment or two of strong language in this story.

Wait. Wait. You're listening (laughter)...

JULIA LONGORIA: OK?

JAD ABUMRAD: All right.

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JULIA LONGORIA: ...To RADIOLAB

UNIDENTIFIED PERSON: RADIOLAB.

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JAD ABUMRAD: WNYC.

JULIA LONGORIA: See?

JAD ABUMRAD: Yeah.

(SOUNDBITE OF MUSIC)

JAD ABUMRAD: Hey. I'm Jad Abumrad.

LATIF NASSER: And I'm Latif Nasser. This is RADIOLAB. And today we have the story of a journey, you could call it.

JAD ABUMRAD: Yes - sort of the journey, really.

LATIF NASSER: 'Cause it's - the journey 'cause it's all of our journey. It's a journey we're all on at some point.

JAD ABUMRAD: Yes. And the person who is going to take us on that journey today - you're on your own after this - but today is our very own producer, Rachael Cusick.

RACHAEL CUSICK: So back in the early 2000s, when I was five years old, my favorite thing on TV was this infomercial...

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UNIDENTIFIED NARRATOR: Are you ready for the wildest paint set you've ever seen? It's the amazing Rainbow Art Set. Painting has never been this...

RACHAEL CUSICK: ...For the Rainbow Art Set.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED NARRATOR: Create amazing drawings and works of art instantly.

RACHAEL CUSICK: Whenever that commercial came on, I lost my shit.

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UNIDENTIFIED NARRATOR: Now, that's magic. As easy as one, two, three - simply dip, dab and draw.

RACHAEL CUSICK: It was this little foam brush that you could swipe across these six wheels of colors - stacked like Oreos. And then you could paint rainbow dragonflies and rainbow bicycles and rainbow palm trees. And amazingly...

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UNIDENTIFIED NARRATOR: With Rainbow Art, look - no splatter, no drips. And the colors dry instantly - amazing.

RACHAEL CUSICK: ...The colors never bled into each other. I begged for that art kit for months. And eventually for my birthday I got one. I remember painting with that thing for hours, twirling the foam brush across the blank page into circles and butterflies and butterflies made of circles, each swipe this perfect, tidy little rainbow of colors.

And those pictures - they were cards, really - I would tape them to the bed frame where my mom slept - while she recovered from chemo, while she was put in hospice and when she eventually died - when I was six. After she died, I don't remember seeing her body. I don't remember crying. I don't remember any of the eulogies. And I don't remember what we had for dinner that first night that her seat at the table was officially empty.

But I do know that we weren't supposed to talk about the sadness of that empty chair. And during those years, I really remember sitting at our dinner table looking around at my older siblings and the grown-ups in our lives, and they just looked so normal. And I know it didn't feel normal to them and it wasn't this simple. But to me as this, like, little sister looking up to everybody, it looked like they had figured out how to handle this thing that had happened to us. And I tried to act normal, too. But this mess inside me would snowball.

Like, I would sneak cookies in my pockets and binge eat them until it hurt. And I would slam doors and burst into tears so easily. It just felt like I spent my childhood fighting off these feelings and failing and fighting and failing and thinking there must be something wrong with me. But then one day when I was older, in my late teens, I think, I finally found what I thought was a way out.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Grief often comes in five stages.

RACHAEL CUSICK: I'm not sure when or how exactly I came across it, but...

(SOUNDBITE OF TV SHOW, "SCRUBS")

DAVE FOLEY: (As Lester Hedrick) You're going to go through what we call the five stages of grief.

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UNIDENTIFIED PERSON: Five stages of grief.

RACHAEL CUSICK: It was this five-part checklist.

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UNIDENTIFIED PERSON: There are five stages of grief.

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UNIDENTIFIED PERSON: What are you talking about?

RACHAEL CUSICK: You might have heard of these stages. The idea is pretty simple. It's basically that in the wake of losing a loved one, you'll go through a series of feelings.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: First...

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UNIDENTIFIED PERSON: Stage one.

(SOUNDBITE OF TV SHOW, "SCRUBS")

DAVE FOLEY: (As Lester Hedrick) Denial.

RACHAEL CUSICK: Denial.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Denial.

RACHAEL CUSICK: Then stage two.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Step two, that's anger.

(SOUNDBITE OF TV SHOW, "SCRUBS")

DAVE FOLEY: (As Lester Hedrick) Anger.

RACHAEL CUSICK: Then bargaining.

(SOUNDBITE OF TV SHOW, "SCRUBS")

DAVE FOLEY: (As Lester Hedrick) Bargaining.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: OK.

RACHAEL CUSICK: After that is...

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UNIDENTIFIED PERSON: Depression.

RACHAEL CUSICK: ...Depression and...

(SOUNDBITE OF TV SHOW, "SCRUBS")

DAVE FOLEY: (As Lester Hedrick) Finally, acceptance.

RACHAEL CUSICK: ...Last but not least, acceptance.

I think when I first came across the stages, they were really like the first time I had heard this word grief kind of underlined as, like, this thing to go through. Like, oh, maybe that door slamming the other week, maybe that was the anger stage. And finally, those things were OK to feel. Like, they were these designated stops on a bus to acceptance.

And so I just let myself be angry. And then I'd be depressed. But anger always came back. And the feelings, they just kept coming at the wrong times and repeating. And I felt like I should have been over this. Like, it was exhausting. And, like, it felt like when it came to grief, I just couldn't do anything right. The stages, they became these, like, supermodel-tight-jean versions of, quote-unquote, "normal grieving" that I just couldn't fit into. And I was finally just like, fuck this.

JAD ABUMRAD: Yeah.

LATIF NASSER: Yeah.

RACHAEL CUSICK: Like, who the hell sold me this crock of shit? Like...

(LAUGHTER)

RACHAEL CUSICK: And I remember, like, the night.

LATIF NASSER: Right.

RACHAEL CUSICK: I felt like I was, like, interrogating Google. I was like, who gave me the stages?

LATIF NASSER: Like, I want to strangle them.

RACHAEL CUSICK: Yeah. And so then I went over - one thing I do a lot when I, like, find something or someone that, like, I don't like is I go to Google Images.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: In my head, I'm picturing, like, this slicked-back, sleazy car salesman with, like, a grinning smile and, like, self-helpy (ph) Dracula caped monster.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: But when I Google the stages of grief, the first image I see is this woman who's like - has this old, gray, wispy hair and is wearing, like, this purple button-down shirt that's like the color of Barney The Dinosaur. And she's crouched in a pile of daisies. And I'm like, this? Like, this is the lady?

JAD ABUMRAD: (Laughter) You were like, wait. Like...

RACHAEL CUSICK: I was like, I kind of want to borrow that shirt. Like, I was feeling so complicated.

JAD ABUMRAD: (Laughter).

RACHAEL CUSICK: I remember staring at it for a few minutes just thinking, who is she? So the daisy lady, her name was Elisabeth Kubler-Ross.

LATIF NASSER: Oh, I've heard that name before maybe.

RACHAEL CUSICK: I hadn't, but at a certain point in time, she was pretty famous. And actually, the thing that made her famous is not studying how people grieve. It was studying how people die.

LATIF NASSER: Huh.

RACHAEL CUSICK: And I was like, OK, I'm curious. And so I started digging around. Problem is, there's endless crap about the stages, but not really any one place where you can go to learn about Elisabeth and her story. So I ended up on this very odd journey that's taken over my life for the past year. I spent my days and nights digging through archives, reading and listening to whatever interviews or talks of her I could find and calling up anyone I thought might have anything to tell me about her. And what I was eventually able to piece together was a story of this incredibly complicated woman who single-handedly changed the way that we all face dying and the way that we all deal with being left behind.

(SOUNDBITE OF MUSIC)

JAD ABUMRAD: Well, all right.

RACHAEL CUSICK: OK.

LATIF NASSER: Yes.

RACHAEL CUSICK: OK (laughter).

LATIF NASSER: Take us on the journey.

JAD ABUMRAD: Yeah, let's go. Let's do it.

RACHAEL CUSICK: OK, so Elisabeth died back in 2004, but I called the photographer of that daisy photo.

KEN ROSS: Hi, my name's Ken Ross. I'm the son of Elisabeth Kubler-Ross, and I'm also the president of the Elisabeth Kubler-Ross Foundation.

RACHAEL CUSICK: Growing up, like, did everybody know her? And then you're like, gosh, my mom is famous for dying and I just want to blend in like a normal teenager.

KEN ROSS: Oh, yeah, totally. It was just hugely embarrassing when she's on the cover of People magazine or especially when she was on the cover of Playboy. You know things...

RACHAEL CUSICK: She was on the cover of Playboy.

KEN ROSS: Yeah. I mean, not...

RACHAEL CUSICK: Wow.

KEN ROSS: ...Obviously, you know, her picture, but...

RACHAEL CUSICK: Yeah, not a centerfold (laughter).

So let me back up just a little bit and tell you how Elisabeth Kubler-Ross became the face of dying.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: She was born in Switzerland...

KEN ROSS: In Zurich.

RACHAEL CUSICK: ...In 1926, and she was the first of triplets.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: And so I grew up being very famous.

RACHAEL CUSICK: That's Elisabeth by the way.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: We had big billboards.

RACHAEL CUSICK: I guess it must have been exciting back then to see a triplet. But this was so much of who she was because her parents and, like, everyone in their world couldn't tell them apart.

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ELISABETH KUBLER-ROSS: I cannot remember anybody who knew that I was me. We were the famous triplets.

KEN ROSS: And so, you know, it really set this thing off in my mother that she had to find her own voice.

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RACHAEL CUSICK: And so as she grew up, she kind of became the rebel of the family.

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ELISABETH KUBLER-ROSS: My father was a very authoritarian Swiss. You know, he told you what to order in a restaurant, what to eat, when to come home. Everything was his control. And I said, no, thank you. And so I left home.

KEN ROSS: She joined a peace group the day the war ended.

RACHAEL CUSICK: World War II.

KEN ROSS: She would have been - what - 19 years old.

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ELISABETH KUBLER-ROSS: Went all the way to Russia and back.

RACHAEL CUSICK: In all these war-torn villages and, like, goes to a concentration camp - and after a few years, she comes home, signs up for medical school, and she's in medical school standing over a cadaver when she meets her husband.

(SOUNDBITE OF MUSIC)

KEN ROSS: My soon-to-be dad.

RACHAEL CUSICK: His name is Manny.

KEN ROSS: He was from Brooklyn.

RACHAEL CUSICK: They fell in love.

KEN ROSS: My parents got married. She had graduated a year ahead of my dad, and she was put in charge of seven villages out in the country.

RACHAEL CUSICK: And she's like the only town doctor.

KEN ROSS: And my mother loved it. She had a little moped, and she'd go from village to village fixing up farmers and being a Swiss country doctor. You know, you don't go in and spend five minutes with a patient and leave. She would sit on the corner of the bed with a patient, and she would hold their hand.

RACHAEL CUSICK: And oftentimes, she'd be a witness to death.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: When somebody is dying, the attempt is to keep them at home. And the family, including the children, are preparing themselves slowly to face the fact that this loved person is going to die soon.

RACHAEL CUSICK: According to Ken, that was really meaningful to her.

KEN ROSS: But my dad had other plans, and so he kind of dragged my mom back reluctantly to New York.

RACHAEL CUSICK: The family moves around a bit. Eventually, Elisabeth becomes a psychiatrist at the University of Chicago. And one day she's sitting in her office, when these four theological students walk in.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Theology students had a research project on crisis and human life. And four of the whole class have chosen dying as the biggest crisis human beings have to face. But you can't do research on this. You can't verify it. You can't make double-blind studies.

RACHAEL CUSICK: They were like, we don't know what to do.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: They were stuck.

RACHAEL CUSICK: But Elisabeth was just like, why don't we just go talk to someone who's dying?

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: And this seemed very simple. And since I was a physician at the hospital, I volunteered to get such a patient.

RACHAEL CUSICK: So she starts going to each floor of the hospital, asking the nurses and the doctors if she can talk to any of their terminal patients, but...

KEN ROSS: She was universally told on every floor and every ward that there was no dying patients.

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ELISABETH KUBLER-ROSS: In this big, big hospital, there was no dying patient - nobody.

RACHAEL CUSICK: And she was like, OK, this is really weird. Like, what are the odds that in one of the biggest cities in America, in a world-renowned hospital, there are no dying patients? So she just started walking the halls on her own, going room to room.

KEN ROSS: So she always had these Hawaiian aloha shirts on. She had her Birkenstocks.

RACHAEL CUSICK: Tiny little woman walking down these long hallways with green tiles, shiny floors and bad lighting.

KEN ROSS: So my mother walked to a few rooms and OK, they got a broken leg. They got this. They got that.

RACHAEL CUSICK: But still no dying people. Next day, she walks the halls again and same thing. And then one day, she gets to the end of this hallway. She looks in the room and there in the bed is an old man who's dying.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: And I enter this old man's room. And I just bubbled out and told him that I wanted to learn what it's like to be very sick and dying, does he feel like talking? I just had to get it out. And this man looked at me with a big, amazed, surprised, very happy face, very relieved, and put his arms out and said, please sit down now. This welcome of this old man was something I'll never forget. I saw his pleading eyes. I heard him say, please sit down now. I saw his arms stretched out, clearly an open welcome to sit down now.

RACHAEL CUSICK: But Elisabeth...

KEN ROSS: She's like, no, no, no, no, no. I'm sorry. We need to have the students here.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: I had walked miles. I had asked dozens of people. I was on the telephone. I was begging. I was frustrated. I was insulted. I was not about to give up my first patient to interview him in front of my students. And I walked out, and I said, very grateful to him, I'm going to see you tomorrow at 1:00.

Tomorrow at 1:00 came. I went in there with my four students, terribly proud that I had a patient. The patient was on a lot of pillows, an oxygen tank, and he could hardly breathe. And he looked at us with the same kind of pitiful look that he had on his face the day before when I left. And he said, thank you for trying anyway. And he died about half an hour later. We were never able to listen to him. We didn't hear what he really wanted to share with another human being.

RACHAEL CUSICK: This moment, it grabbed a hold of Elisabeth and just wouldn't let her go because that man, he wanted to talk about dying, but Elisabeth missed it. And really, at that time in America, we were all missing it.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Ladies and gentlemen, nowhere in the world except in the Americas is it possible for any nation to devote a great sector of its effort to life conservation rather than life destruction.

RACHAEL CUSICK: We were waging a war, and the enemy was...

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: ...Cancer...

RACHAEL CUSICK: ...And smallpox...

(SOUNDBITE OF MONTAGE)

UNIDENTIFIED PERSON: ...Diphtheria...

UNIDENTIFIED PERSON: ...Syphilis...

UNIDENTIFIED PERSON: ...Whooping cough...

UNIDENTIFIED PERSON: ...Tuberculosis.

RACHAEL CUSICK: And at this moment in time, we finally had some...

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Serums, vaccines.

RACHAEL CUSICK: ...Weapons in our arsenal.

(SOUNDBITE OF MONTAGE)

UNIDENTIFIED PERSON: The powerful and invisible X-ray.

UNIDENTIFIED PERSON: Penicillin.

UNIDENTIFIED PERSON: The new, improved iron lung.

RACHAEL CUSICK: And the army we recruited for this war on death...

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: The soldiers of the treatment front.

RACHAEL CUSICK: ...Were, of course...

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: The doctors.

RACHAEL CUSICK: ...The doctors.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: For on him now rests all responsibility.

RACHAEL CUSICK: And in the heat of that fight, the possibility of defeat became something you weren't even supposed to acknowledge.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: I think there is a great attempt to deny the reality of death in this country.

RACHAEL CUSICK: This was a time when, like, doctors didn't even tell patients, like, what their diagnoses were.

KEN ROSS: In the mid-1960s, I've heard that doctors did not tell their patients they were dying of cancer. They would say, well, there's a spot on the X-ray. We're doing more tests.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: The families tell us, I know he has cancer, but don't tell him. The doctor tells us, I know he has cancer, but he doesn't know, so don't tell him. And the patient tells us, I know I have cancer, but my family and my doctor don't want to talk about it. So everybody plays kind of a conspiracy of silence.

JAD ABUMRAD: I get it on some level because, you know, the Hippocratic oath is - if you push it all the way, it's, like, you don't do harm, right? Like, you don't do anything to hurt the patient. Death is...

RACHAEL CUSICK: Exactly.

JAD ABUMRAD: ...A failure. And so you don't lean into that.

RACHAEL CUSICK: And maybe they saw it as this act of compassion, but in the process, the experiences of the people who are actually dying and really the people themselves got pushed aside.

KEN ROSS: All the dying people were at the backsides of the hospitals, you know, floors people didn't use much.

RACHAEL CUSICK: Wait, is that really something that happened?

KEN ROSS: Oh, absolutely. Yeah. They were put in the farthest corners of the hospital. So the medical staff didn't even want to see them or walk by the room to be reminded that they have dying patients.

RACHAEL CUSICK: Ugh.

But after Elisabeth found that man and saw how desperately he wanted to talk to someone about what he was going through...

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: This started the stone rolling.

RACHAEL CUSICK: ...Suddenly, she needed to find out, like, what did the dying want to tell us?

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: What kind of fears, fantasies, turmoils they go through; what kind of hopes and expectations perhaps they wish to share.

RACHAEL CUSICK: And she just decided, like, I'm going to start a seminar where we find dying patients, and we talk to them.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: You know, let's get as close to them as they allow us to come. Let's sit with them and listen to them as long as they allow us to sit and listen.

KEN ROSS: She would just start going to these rooms. And, you know, nurses would try to kick her out. Doctors would try to kick her out.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: It took an average of 10 hours searching for a doctor who gave us permission to see one single patient.

RACHAEL CUSICK: So she teamed up with the theology department of the school.

DENNIS CLASS: We weren't looking for a particular thing. We were just looking for somebody with a terminal diagnosis.

RACHAEL CUSICK: This is Dennis Class (ph). He was Elisabeth's research assistant.

DENNIS CLASS: And there were four research fellows. I was only one of them.

RACHAEL CUSICK: Elisabeth's team would just start going into people's rooms saying, we want to talk to you about dying.

DENNIS CLASS: You know, if they said yes, I'd say OK. And then I would just start wheeling her through the corridors down to the seminar room.

KEN ROSS: The patient would come in.

RACHAEL CUSICK: There's a smaller room where Elisabeth and a chaplain - a chaplain often came to be able to, like, mediate these conversations about faith. So Elisabeth, a chaplain and a patient are sitting in this tiny room.

KEN ROSS: Behind a two-way mirror.

RACHAEL CUSICK: And on the other side of that glass, there's a group of people watching and listening because Elisabeth made these interviews open to students, to other doctors, to cleaning staff, anyone in the hospital who wanted to come and hear these voices.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Which the patient is fully aware, naturally, that it's tape recorded and of the audience, who he cannot see and hear, but they can see and hear us.

RACHAEL CUSICK: And then Elisabeth would start asking questions.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Does death mean anything special to you?

UNIDENTIFIED PATIENT: No.

ELISABETH KUBLER-ROSS: Like, all of us have a certain concept of what it's like.

UNIDENTIFIED PATIENT: I don't know. I've never been dead.

RACHAEL CUSICK: That was a young dad diagnosed with Hodgkin's lymphoma at 30.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PATIENT: I've lived a very good life so far. I mean, I've heard people say, well, I'm 90 years old. I've had a full life. While this is true, maybe...

ELISABETH KUBLER-ROSS: But you are 30.

(CROSSTALK)

UNIDENTIFIED PATIENT: But I think I have had a very good life for 30.

ELISABETH KUBLER-ROSS: Yeah.

RACHAEL CUSICK: And much of what you hear is maybe less dramatic (ph) than you would have expected. But you have to remember the people listening in had never heard from someone who knew they were going to die.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: What's the worst that can happen?

UNIDENTIFIED PATIENT: The worst that can happen to me?

ELISABETH KUBLER-ROSS: Yeah.

UNIDENTIFIED PATIENT: Well, I can die.

ELISABETH KUBLER-ROSS: Yeah.

RACHAEL CUSICK: That was the only original recording I could find. But there were bunches of transcripts of these interviews. And so we asked people to come and read a few of them.

UNIDENTIFIED PERSON: (Reading) It's not the big things that count when you're so sick and so weak. It's the little things that count.

RACHAEL CUSICK: And the thing you hear so clearly is that the patients themselves felt forgotten.

UNIDENTIFIED PERSON: Why in the world can't they talk to me? Why can't they tell you before they do certain procedures?

UNIDENTIFIED PERSON: What really upset you that much yesterday morning?

UNIDENTIFIED PERSON: It's really very personal, but I just have to tell you. Why don't they supply you an extra pair of pajamas when you go for this colon X-ray? When you get done, you're in an absolute mess. And then you're supposed to sit in a chair. And you just don't have any desire to sit in that chair.

RACHAEL CUSICK: Nobody had asked them even the most basic questions about what they wanted.

UNIDENTIFIED PERSON: I requested a chaplain in the middle of the night. And there was no chaplain. I mean, this is just unbelievable to me, unbelievable because when does a man need a chaplain? Only at night. Believe me. That's the time when you get down with those boxing gloves and have it out with yourself. That's the time you need a chaplain. And if you were to show a chart, it would probably have a peak at about 3 o'clock.

RACHAEL CUSICK: Or about the pain they were feeling.

UNIDENTIFIED PERSON: Because, you see, if you have an illness and you have the pain and you have the grief that's unresolved and you have a person that you were living with who meets every aspect of the grief business, you know, you say, well, I don't know how I'm going to live through this business of our daughter dying and that sort of thing.

RACHAEL CUSICK: This guy was dying but had also lost his own daughter. And he talked about how his wife, when they discussed grief or the fact that he was dying...

UNIDENTIFIED PERSON: The answer comes right back. Keep your chin up. Positive thinking.

RACHAEL CUSICK: And he said that being told that just made him feel totally alone.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Nobody knew who was behind the medical diagnosis. The implication was nobody cares.

UNIDENTIFIED PERSON: I have thought of the worthlessness - that if I were to die tomorrow, my wife would go on perfectly normal.

UNIDENTIFIED PERSON: Just like nothing happened?

UNIDENTIFIED PERSON: That's the way I feel. And she wouldn't miss a beat.

UNIDENTIFIED PERSON: My sisters only come once a week. And, sometimes, they don't come at all. I need people, and then they don't come.

RACHAEL CUSICK: This was a young nun with Hodgkin's disease. And she was in the hospital for the 11th time because of it.

UNIDENTIFIED PERSON: When people are sick, they stay away from you, you know? They think you don't want to talk even though you can't respond. Even if they just sit there, you know you wouldn't be alone.

UNIDENTIFIED PERSON: Why do you think loneliness is so dreadful to you?

UNIDENTIFIED PERSON: I think - no, I don't think I dread loneliness because there are times when I need to be alone. I - it isn't dying alone. It's the torture that pain can give you. Like, you just want to tear your hair out. You don't care if you don't bathe for days because it's just so much effort. You still want to be a person.

RACHAEL CUSICK: But in these conversations, there's also these surprising little moments of hope.

UNIDENTIFIED PERSON: And certain things happen. You may watch a good TV program or listen to interesting conversation. And after a few minutes, you're not aware of the itching and the uncomfortable feeling - all these little things that I call bonuses. And I figure that if I can have enough bonuses together, one of these days, everything will be a bonus, and it will stretch out to infinity, and every day will be a good day. So I don't worry too much.

RACHAEL CUSICK: I found these conversations to be so beautiful. But the doctors back in the '60s - they were not fans of what Elisabeth was trying to do.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Some of them became very rude and very inappropriate and very angry and called us names. We will call them - what you call it?

UNIDENTIFIED PERSON: Vultures.

ELISABETH KUBLER-ROSS: Vultures.

KEN ROSS: And if you can imagine, I mean, doctors would literally spit on her in the hallways, leave her...

RACHAEL CUSICK: Wow.

KEN ROSS: ...Nasty notes in her room. And then so the administration called her in. And they're like, hey, we don't want to be known as a death and dying hospital.

RACHAEL CUSICK: But more and more people kept showing up to these seminars and...

KEN ROSS: Eventually, the hospital had to acknowledge that the classes were extremely popular. So after two years, they made it an official class of the school.

RACHAEL CUSICK: Even though the doctors didn't want to deal with death in this way, outside the walls of this hospital...

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Our country is at war.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: ...We were on the heels of two world wars.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Suicide pilots off Okinawa.

RACHAEL CUSICK: And then the Korean War. And by the time Elisabeth moved to Chicago...

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Sweaty (ph) jungles of South Vietnam.

RACHAEL CUSICK: ...The war in Vietnam had been rumbling for years at this point.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Many of your pals left you that day.

RACHAEL CUSICK: Over 600,000 Americans killed from more alone in two generations. Not to mention all the other kinds of death there are in the world. Death was everywhere.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: And now here was this woman who really for the first time ever was helping us look directly at this thing that was happening all around us.

(SOUNDBITE OF TYPEWRITER)

RACHAEL CUSICK: Soon, Elisabeth starts putting these interviews and her thoughts about them down on paper.

KEN ROSS: After about 10, 10:30 at night, the clicking would start.

RACHAEL CUSICK: (Laughter).

KEN ROSS: And she was typing with two fingers. I remember the click, click, click, click, you know? And she would have her coffee and cigarettes, probably some Swiss chocolate.

RACHAEL CUSICK: And then in 1969, she published this book.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Dr. Ross's first book, "On Death And Dying," is about to appear.

RACHAEL CUSICK: It's called "On Death And Dying." And when she started going around and giving talks about the book...

KEN ROSS: You know, it was like going on a rock tour.

RACHAEL CUSICK: These talks...

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: So all of the people in this room are going to die.

RACHAEL CUSICK: They exploded.

(SOUNDBITE OF MUSIC)

KEN ROSS: You know, I was traveling with her all over the world. I think I went to 19, 20 different countries with her. Go outside and it is like a line, you know, down around the block. And it's like, wow, she sold out the Sydney Town Hall three nights in a row - 2,000 people, 5,000 people.

RACHAEL CUSICK: And she was getting stopped in airport bathrooms, and people were slipping her books under the stalls to autograph. She was like the fuckin' Rolling Stones, man. Like, people rolled out the carpet for her.

(LAUGHTER)

JAD ABUMRAD: I'm imagining all these young kids in the streets going ahh (ph)...

RACHAEL CUSICK: (Laughter).

JAD ABUMRAD: ...Like The Beatles.

RACHAEL CUSICK: Elisabeth.

JAD ABUMRAD: Oh, my god.

(LAUGHTER)

RACHAEL CUSICK: Start crying.

BALFOUR MOUNT: What struck me was one of the neurologists, man, I had great esteem for was standing on his tiptoes. And the first line at the back, you know, is like seeing Jesus carrying out the garbage, you know? I mean, I couldn't believe what I was seeing.

RACHAEL CUSICK: That's Balfour Mount. He's the founding father of palliative care in Canada. And he actually got into that work because he went to go see Elisabeth speak at one of those early lectures.

BALFOUR MOUNT: She was remarkable.

RACHAEL CUSICK: Even though it was like a rock hall on the outside, on the inside of these seminars, things were intimate.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: I think he did bother her.

RACHAEL CUSICK: She wouldn't stand behind the podium.

BALFOUR MOUNT: She chose to sit on the lecture table, swinging her legs back and forth.

RACHAEL CUSICK: She would just talk.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: With a horrible question that we're all afraid of and that never happens - that the patient looks at you and says, am I going to die?

BALFOUR MOUNT: But when she started speaking in that little soft voice, she could have an audience in the palm of her hand for the next 45 minutes.

KEN ROSS: I mean, there was not a sound in the audience.

BALFOUR MOUNT: She just had them.

RACHAEL CUSICK: Like, I didn't think it was possible to see a twinkle in someone's eyes from, like, fuzzy YouTube archival videos. But when she speaks about this, you just see this superpower in her.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: And how do you react to a nasty, unpleasant, mean patient? What do you do? Honest...

BALFOUR MOUNT: At one point, she was recalling a discussion with somebody. And she said, and what do you think he was saying when I heard that? And a young guy sitting close to me answered the question. He said he was afraid.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: That you come in peppy, that you come in and actually function.

BALFOUR MOUNT: He was afraid.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Because you are going to rub in all the things that is in the process of losing.

BALFOUR MOUNT: Just the level of connection that she could generate.

RACHAEL CUSICK: This is actually where we get to the stages - like, the five stages - because during these speeches...

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: And if we summarize, we have found that most of our patients go through similar stages.

RACHAEL CUSICK: ...Elisabeth would talk about this series of reactions she had seen her dying patients go through.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Then this denial will be replaced with a tremendous anger.

RACHAEL CUSICK: Denial, anger, bargaining, depression and acceptance.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: And this is true for all patients...

UNIDENTIFIED PERSON: Yes.

ELISABETH KUBLER-ROSS: ...without exceptions.

RACHAEL CUSICK: Sort of used them to organize her talks.

KEN ROSS: She said, back in the '60s, there was no common language. There was nothing they could talk about. So she said by creating five stages, it's something simple that any layman or any family member can remember.

DENNIS KLASS: 'Cause I mean, look, it only takes you five minutes to learn the stages.

RACHAEL CUSICK: My whole problem with the stages is that they were these tidy little boxes that my feelings would never fit into. And on top of that, there was this prescriptive order that never worked for me. But the thing is, when Elisabeth created these things, they were stages a dying person would go through, not a grieving person like me. And they weren't even as tidy and orderly as the world made them out to be.

If you actually go back and read Elisabeth's book - "On Death And Dying" - (yawning, unintelligible) - which I did...

I just had to take my retainer out for reading this.

I'd read it every night before bed.

So yeah, there's, like, how many chapters? Oh, my God. I'm so bad with Roman numerals - one, two, three, four, five, six, seven, eight, nine, 10, 11, 12 - 12 chapters - only five stages.

And the stages really just serve as these chapter headers.

She starts each chapter with these poems.

Like, when you get to those pages, it's really hard to find - just all these beautiful transcripts - one singular emotion.

(Reading) These means will last for different periods of time.

She says you could go through all of these stages and then repeat some.

(Reading) Replace each other or exist at times side by side.

This book is not a five-stage-shaped anything.

What does the preface say? (Reading) I've worked with dying patients for the past 2 1/2 years. And this book will tell about the beginning of this experiment.

And the first page literally says...

(Reading) It is not meant to be a textbook on how to manage dying patients, nor is it intended as a complete study of the psychology of dying. It is simply an account of a new and challenging opportunity to refocus on the patient as a human being.

This is the goal of the book. Like, that is it.

(Reading) I'm simply telling the stories of my patients.

The real substance of this book.

(Reading) It is hoped that it will encourage others not to shy away from the hopelessly sick but to get closer to them.

The ocean of color and texture that the stages are tucked inside is not escaping death. It's standing in it and not running away.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: If we do not come and give them a pat on the back and say, don't cry, it's not so bad. It is bad to leave...

ELISABETH KUBLER-ROSS AND UNIDENTIFIED PERSON: ...Everything...

ELISABETH KUBLER-ROSS: ...And everybody...

UNIDENTIFIED PERSON: Yes.

ELISABETH KUBLER-ROSS: ...You love. So if we help them be angry and help them be sad and let them express it and cry, not say, you're a man, it's not manly to cry.

UNIDENTIFIED PERSON: Yes.

ELISABETH KUBLER-ROSS: I said, this is terrible.

RACHAEL CUSICK: And, like, everything that you're feeling is OK. And none of it should fit into these boxes. But, like, the best thing that we can do for each other as human beings is to just sit there and listen to it as it's coming up.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Just be you. If you feel like screaming, you scream. If you feel like crying, you cry. Don't try to follow a textbook or have somebody else tell you what to do. Trust yourself, your own natural emotions.

RACHAEL CUSICK: Like, when I read it, I shot up in bed 'cause I was like, oh, my God, this is it. This book - it wasn't meant for me. It was meant for my mom. And, like, she never let herself feel those things. I think it was 'cause she was just trying to fight it for so long and be there for us. And, like, death wasn't an option for her. But it was like the only thing.

And so when she when she died, I don't know. For me at least, I felt like I had to stay strong for her. But then here was Elisabeth, in some way, kind of talking to both of us and saying, like, it could have gone differently. And I guess because of that, I just started building this little pedestal for her. And, like, every day I was shining...

JAD ABUMRAD: (Laughter).

RACHAEL CUSICK: ...It and, like, putting flowers on it.

JAD ABUMRAD: (Laughter).

RACHAEL CUSICK: But then as I kept digging into her story, all that changed.

(SOUNDBITE OF MUSIC)

JAD ABUMRAD: We'll get to all of that in a moment and honestly to a truly incredible conversation, one of the most honest conversations I've ever heard on tape, after a short break.

LATIF NASSER: And just shortly before that short break, Rachel hooked up with our friends at the podcast Death, Sex & Money - and not just Rachael, Rachael and her grandmother, her mother's mother. And so when you get to the end of this episode, you are going to want to hear more from Rachael, I promise you. That's where you can go to hear her talk about more of this stuff. We'll give you more details about that at the end of the show - in the meantime, break, then back with Rachel and the rest of Elisabeth Kubler-Ross's story.

MATT KIELTY: OK. Here we go. All right.

JAD ABUMRAD: Jad.

LATIF NASSER: Latif.

JAD ABUMRAD: RADIOLAB.

LATIF NASSER: And...

RACHAEL CUSICK: You good?

LATIF NASSER: Rachael Cusick.

RACHAEL CUSICK: So we are talking about Elisabeth Kubler-Ross, this woman I came to idolize because of the way she embraced death. But when I learned about the next part of her life, there was kind of this pileup of things that happened all together that just made me feel differently about her and what she could teach me. And it all started with this thing...

DENNIS KLASS: Elisabeth had some other realities.

RACHAEL CUSICK: ...Elisabeth's former assistant Dennis Klass told me.

DENNIS KLASS: Did you read about Mrs. Schwartz?

RACHAEL CUSICK: No. Who's that?

DENNIS KLASS: Well, I did not recruit Mrs. Schwartz for the seminar, but somebody did.

RACHAEL CUSICK: Dennis said, Mrs. Schwartz was one of Elisabeth's patients. But then one day...

DENNIS KLASS: Mrs. Schwartz appeared to her in the hallway by her office and said something about, you are called to this. Keep it going.

RACHAEL CUSICK: The only problem is...

DENNIS KLASS: Mrs. Schwartz is dead.

(SOUNDBITE OF MUSIC)

JAD ABUMRAD: (Gasping).

DENNIS KLASS: And Elisabeth asked for - she said, would you write this down so that I can show people that you were really here? And Mrs. Schwartz wrote it down, and she signed Mrs. Schwartz.

JAD ABUMRAD: Was it one of those - like, where you write a letter, knowing it's going to be delivered after your death, or did she...

RACHAEL CUSICK: No. No. Elisabeth told Dennis that she had received a letter from a dead lady. And Elisabeth's son, Ken, said it wasn't a one-time kind of deal. Like, around this time, Elisabeth started talking about these things she called her spooks.

KEN ROSS: You know, that word, I think, in particular really set off the media. Elisabeth is talking about her spooks.

RACHAEL CUSICK: Other dead people, like Mrs. Schwartz, but with names like Mario and Willie.

KEN ROSS: The only one I remember her mentioning by name was Joseph.

JAD ABUMRAD: Yeah. That's kind of bizarre.

RACHAEL CUSICK: Yeah. It's a little bit funny. But it also was a turn that ended up taking her to a very dark place.

(SOUNDBITE OF PHONE LINE TRILLING)

DON SCHUMACHER: Hello?

TOM FRANTZ: Hello?

RACHAEL CUSICK: I'm just going to let these two guys tell it.

DON SCHUMACHER: Don Schumacher.

RACHAEL CUSICK: And Tom Frantz - or Frahntz (ph)?

TOM FRANTZ: Frahntz (ph) - I was a faculty member at the University of Buffalo.

DON SCHUMACHER: My most recent job was as the president of the National Hospice and Palliative Care Organization.

RACHAEL CUSICK: Both these guys spent their lives working in dying and grief. And they both got into this work because of Elisabeth.

TOM FRANTZ: It really changed my career dramatically, meeting her.

DON SCHUMACHER: Oh, absolutely - for me, life-changing.

RACHAEL CUSICK: They both went to Elisabeth's lectures after the book came out.

TOM FRANTZ: We were all enamored of her and thought she was fantastic.

RACHAEL CUSICK: And they kept going to these talks, Don and Tom and five of their friends.

TOM FRANTZ: There were seven of us.

RACHAEL CUSICK: They started calling themselves the Buffalo Seven.

TOM FRANTZ: I suppose we were sort of groupies.

RACHAEL CUSICK: And they were Elisabeth's biggest fans until...

(SOUNDBITE OF SONG, "SHANTI NILAYA")

DON SCHUMACHER: Shanti Nilaya.

RACHAEL CUSICK: Elisabeth eventually got fired from the hospital in Chicago for reasons that are kind of unclear. But after that, she bought some land out in Southern California so she could start a healing center. She called it...

(SOUNDBITE OF SONG, "SHANTI NILAYA")

DEANNA EDWARDS: (Singing) Shanti Nilaya.

RACHAEL CUSICK: ...Which means final home of peace. And I've heard from numerous people, the center - it kind of looked like a motel. But the idea was people could come and take workshops with her to talk about dying and grieving. So in 1977, Don and Tom took a visit to Shanti Nilaya.

TOM FRANTZ: This was a little - well, not - a very far-out experience.

DON SCHUMACHER: But it was not at all anything that I thought it was going to be.

RACHAEL CUSICK: So, Tom and Don - they go with Elisabeth into this room...

TOM FRANTZ: Very large room, like a cafeteria room.

RACHAEL CUSICK: ...With a couple dozen other people there.

TOM FRANTZ: So we all sat in chairs around the edge, and then the lights were turned down.

DON SCHUMACHER: And it just got stranger and stranger and stranger. It really did.

TOM FRANTZ: People began singing. "You Are My Sunshine" was Elisabeth's favorite song. We sang the hell out of it.

RACHAEL CUSICK: Then Tom said through the dark, in the middle of the room, he saw these scarves...

TOM FRANTZ: Scarves. They would light up.

RACHAEL CUSICK: ...Shimmying and dancing around.

TOM FRANTZ: Two or three of them in different colors.

RACHAEL CUSICK: And then...

DON SCHUMACHER: We were told that we would be approached by our spirit guide.

TOM FRANTZ: An entity...

DON SCHUMACHER: Our soul mate, in this experience.

TOM FRANTZ: ...Would take human form and be created and speak to you.

RACHAEL CUSICK: A moment later, Don says...

DON SCHUMACHER: Your spirit guide approached you.

TOM FRANTZ: It was pitch black.

RACHAEL CUSICK: But Tom says he could tell that a person - like, an actual person - was standing there.

TOM FRANTZ: A human being seemed to be there.

RACHAEL CUSICK: And that spirit guide would lead them into another room.

TOM FRANTZ: Like a closet because it was very small. It needed to be isolated and free of all other human contact during this time, we were told.

DON SCHUMACHER: And they would talk to you about your past lives.

RACHAEL CUSICK: And who is your spirit guide? Do you remember? Or was it so dark you couldn't see them?

DON SCHUMACHER: Well, you couldn't see them. But you could feel them because - you know, you could absolutely feel them (laughter).

RACHAEL CUSICK: Wait, what does that mean, absolutely feel them? Just, like, you were, like, up close to them?

DON SCHUMACHER: Oh. Oh, no. You were holding them. Like, you were hugging them.

RACHAEL CUSICK: In Tom and Don's case, their spirit guide was clearly a woman.

TOM FRANTZ: And she had no clothes on.

DON SCHUMACHER: And it wasn't quite sexual.

RACHAEL CUSICK: Wait, but you hug them when they're talking?

DON SCHUMACHER: Yes. Well, yes, you were hugging them while they were talking.

RACHAEL CUSICK: OK.

DON SCHUMACHER: Yeah. It was weird. It was very weird.

RACHAEL CUSICK: Well, do you remember thinking, (laughter) like, what's going on here as it was happening? Or..

DON SCHUMACHER: Oh, God, yeah.

TOM FRANTZ: I didn't know what to expect. You didn't know for sure what was going to go on.

RACHAEL CUSICK: How long were you in the dark room for?

TOM FRANTZ: I would say two hours. And the lights came on, and I just know that it stopped.

JAD ABUMRAD: Oh, God.

LATIF NASSER: Oh, no.

RACHAEL CUSICK: Yeah. And if you think about it, like, these two guys flew across the country to California to just think deeply about working with dying people. And in this room, they just ended up having this weird, uncomfortable encounter that they didn't really even understand.

DON SCHUMACHER: So it was hard. It was hard to go through.

RACHAEL CUSICK: And it got worse. Like, fairly soon after Elisabeth opened Shanti Nilaya, the man who ran these dark room sessions - this guy named Jay Barham - was accused by numerous people of engaging in sexual misconduct in these dark rooms.

LATIF NASSER: Oh, no.

RACHAEL CUSICK: Yeah. And Elisabeth protected this guy, saying, like, he couldn't possibly have done this. He's one of the most gifted healers I know. And she said that for over a year before she eventually fired him.

DON SCHUMACHER: And everybody was shocked and dismayed, I think, when we get out of there that we had been taken advantage of.

RACHAEL CUSICK: Did you have to pay to go?

DON SCHUMACHER: I don't think so, but I don't recall.

RACHAEL CUSICK: So when you say taken advantage of, it's more like emotionally and psychologically, not like...

DON SCHUMACHER: Yeah.

RACHAEL CUSICK: ...Financially?

DON SCHUMACHER: Oh, yeah. Yeah. And that - more than that, that Elisabeth was being taken advantage of.

RACHAEL CUSICK: A lot of people I talked to about this said that they don't think Elisabeth really knew what was going on, that she was manipulated by Jay just like everybody else. But I don't know. Like, I have a really hard time figuring out how to feel about this and so did a lot of people. Like, her husband divorced her. And at this point, Elisabeth left California and ran away to this small town in Virginia to get another center off the ground. But the locals there didn't want her there. People protested. They sent her death threats. Someone killed her pet llama.

JAD ABUMRAD: Oh, damn.

RACHAEL CUSICK: And then eventually her house mysteriously burnt to the ground. She and Ken both suspected arson. And after that, she ended up having a series of strokes. So, again, she moved back across the country to Arizona. And at this point, she kind of fell off the map for years until...

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: ...She herself started dying.

(SOUNDBITE OF TV SHOW, "THE OPRAH WINFREY SHOW")

OPRAH WINFREY: Elisabeth Kubler-Ross - she was in preparation for dying herself. So the death and dying lady was getting ready to die.

RACHAEL CUSICK: All of the sudden, everybody wanted to hear from her again.

DON LATTIN: My name is Don Lattin. And I'm a journalist. So, yeah, I wrote an article about Elisabeth Kubler-Ross, which appeared on the front page of the San Francisco Chronicle on May 31, 1997 - "Expert On Death Faces Her Own."

RACHAEL CUSICK: The whole world wanted to know.

DON LATTIN: This is the death and dying guru. And how is she dealing with it personally?

(SOUNDBITE OF TV SHOW, "THE OPRAH WINFREY SHOW")

OPRAH WINFREY: But I went out to Arizona to talk to her and found out that she's not so keen on dying right now.

RACHAEL CUSICK: Don says it didn't look like she was handling it too well.

DON LATTIN: Her house was very cluttered - not exactly a hoarder, but, you know, getting there.

RACHAEL CUSICK: She's sitting in this beige lounger chair.

RACHAEL CUSICK: She was chain-smoking, and it was Dunhill cigarettes.

(SOUNDBITE OF TV SHOW, "THE OPRAH WINFREY SHOW")

OPRAH WINFREY: Elisabeth says she's ready to die, but she's not going gently.

RACHAEL CUSICK: And it was a pretty similar scene to the day Oprah was there. Like, she's grouchily fielding questions about...

(SOUNDBITE OF TV SHOW, "THE OPRAH WINFREY SHOW")

OPRAH WINFREY: Did you go through those stages yourself?

RACHAEL CUSICK: ...Which stage of dying she was in.

DON LATTIN: She didn't miss a beat. I said, what stage are you in? And she said, anger. I'm pissed.

(SOUNDBITE OF TV SHOW, "THE OPRAH WINFREY SHOW")

ELISABETH KUBLER-ROSS: I am angry, angry, angry and enraged. Nothing but anger and negative.

OPRAH WINFREY: So no denial for you?

ELISABETH KUBLER-ROSS: No. Are you kidding?

OPRAH WINFREY: No (laughter).

ELISABETH KUBLER-ROSS: No. No denial.

RACHAEL CUSICK: And it was this massive train wreck of a story people couldn't look away from. Like, Elisabeth Kubler-Ross, the queen of dying, couldn't die in peace herself. And on top of that, during this time, she started working on another book called "On Grief And Grieving," where she talked about those stages of death as stages of grief. It was published after she died in the years following my own mom's death. And these stages...

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Five stages of grief...

DON LATTIN: The five stages of grief.

RACHAEL CUSICK: ...They took hold.

(SOUNDBITE OF ARCHIVED RECORDING)

UNIDENTIFIED PERSON: Grief often comes in five stages.

DON LATTIN: Everyone just couldn't stop talking about them.

RACHAEL CUSICK: They were everywhere...

(SOUNDBITE OF TV SHOW, "SCRUBS")

DAVE FOLEY: (As Lester Hedrick) You're going to go through what we call the five stages of grief.

RACHAEL CUSICK: ...From "Scrubs," to...

(SOUNDBITE OF TV SHOW, "THE OFFICE")

STEVE CARELL: (As Michael Scott) ...Which are denial...

RACHAEL CUSICK: "...The Office..."

(SOUNDBITE OF TV SHOW, "GREY'S ANATOMY")

ELLEN POMPEO: (As Meredith Grey) According to Elisabeth Kubler-Ross...

RACHAEL CUSICK: "...Grey's Anatomy..."

(SOUNDBITE OF TV SHOW, "GREY'S ANATOMY")

ELLEN POMPEO: (As Meredith Grey) ...We all move through five distinct stages of grief.

(SOUNDBITE OF TV SHOW, "SESAME STREET")

UNIDENTIFIED ACTOR: (As character) Big Bird, don't you remember we told you...

RACHAEL CUSICK: ...To "Sesame Street..."

(SOUNDBITE OF TV SHOW, "SESAME STREET")

UNIDENTIFIED ACTOR: (As character) ...Mr. Hooper died?

CARROLL SPINNEY: (As Big Bird) Well, yeah. I'll give it to him when he comes back.

RACHAEL CUSICK: ...To...

(SOUNDBITE OF TV SHOW, "THE SIMPSONS")

DAN CASTELLANETA: (As Homer Simpson) ...Because I'm not dying.

RACHAEL CUSICK: "...The Simpsons..."

(SOUNDBITE OF TV SHOW, "THE SIMPSONS")

DAN CASTELLANETA: (As Homer Simpson) Why, you little...

RACHAEL CUSICK: ...Even...

(SOUNDBITE OF TRAILER FOR "CRUELLA DE VIL" FILM)

UNIDENTIFIED MOVIE TRAILER NARRATOR: This May...

EMMA STONE: (As Cruella de Vil) There are five stages of grief.

RACHAEL CUSICK: ...Movie trailers from this past summer.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: And I know pop culture has a habit of doing this - stripping out all of the nuance of things. But it felt like on her way out the door, she leaned into the stages and then aimed them over at grief. And then really just the hardest part to watch for me was just the way she died. She was so angry and disgruntled. And it just felt like she was turning away from everything her work was telling me to look towards. It was like she was saying, don't trust anything I taught you. But then...

KEN ROSS: Can I share my screen with you?

RACHAEL CUSICK: Oh, yes. Hold on.

At one point, Ken...

Oh, my God.

...Showed me all these pictures of her from her final years.

KEN ROSS: So there is Elisabeth on Halloween. She used to dress like ET on every Halloween.

RACHAEL CUSICK: Oh, wait, every Halloween?

I started seeing all these colors of that last part of her life, like how she absolutely loved ET. She would...

LATIF NASSER: Oh, my God.

RACHAEL CUSICK: ...Put her finger out when people came and say hello to them that way by touching fingers because she had such chronic pain that that was, like, her little hello.

KEN ROSS: So here's my mother with her finger again.

RACHAEL CUSICK: Oh, her little booties.

KEN ROSS: She always had that little finger up.

RACHAEL CUSICK: Oh, my gosh. These photos are amazing.

KEN ROSS: Here's my mom on her 75th birthday. We took my mom to see her sisters one last time.

RACHAEL CUSICK: You had the triplets all together.

KEN ROSS: Right. Yeah. You know, here she is doing these wheelchair races, (laughter) just a big mish-mash.

RACHAEL CUSICK: She looks really happy there. I don't know. I just - like, she seems happier in her final years, I think more so than I thought. Because I - the articles, you read that she was angry or she was depressed. But, like, these seem a little bit more complex.

KEN ROSS: You know, occasionally she had those days. But that's not who she is.

JOANNE CACCIATORE: She was angry. But she wasn't just angry. I mean, I think it's important for people to understand that. I think the source of her anger was more frustration. She just wanted people to see her in all of her humanness and fallibility and accept who she really was.

RACHAEL CUSICK: This is Joanne Cacciatore, who was pretty much Elisabeth's best friend during that time.

JOANNE CACCIATORE: Yeah, we were very, very, very close. I would take her shopping. She loved shopping. She loved Costco (laughter).

RACHAEL CUSICK: She loved Costco? A woman after my own heart.

(LAUGHTER)

JOANNE CACCIATORE: That's right. You know, we would sit around and watch Johnny Depp movies because she had a crush on Johnny Depp and so did I. And she would get hundreds of letters every day from people. And she'd say, read me three letters, or read me 10 letters.

RACHAEL CUSICK: Joanne told me that she and Elisabeth would have these really beautiful conversations about grief.

JOANNE CACCIATORE: You know, I would go to her, and I could tell her, you know, like, oh, my God, this happened today in class, or this happened. I met a new bereaved family. This is what their doctor did, or this is what their counselor told them, you know? And she would she go, ugh. She would be outraged. She would just share my outrage. And I felt, you know, seen and heard. And she was one of the few people, you know, in the world at that time who really saw my own grief, my own deep grief for my child who died, and who held space for it in a way that was congruent with the depth and breadth of the suffering.

RACHAEL CUSICK: She was still holding that space for messiness in a way that we weren't holding for her.

BJ MILLER: There's a perfect irony to criticizing Kubler-Ross for dying in a messy way when she was always trying to help us understand that messes are natural, and that's OK. And that's just part of the deal.

RACHAEL CUSICK: That's B.J. Miller. He's a hospice and palliative care doctor.

BJ MILLER: She was just taking her own medicine and letting it rip, letting it fly.

RACHAEL CUSICK: Like, that mix of rage and joy, sadness and bravery and shouting and listening. That mudslide of emotions - that was her final seminar for us.

(SOUNDBITE OF ARCHIVED RECORDING)

ELISABETH KUBLER-ROSS: Just be you. If you feel like screaming, you scream. If you feel like crying, you cry. Don't try to follow a textbook.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: And on Tuesday, August 24, 2004, Elisabeth died.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: I've been thinking a lot about how - why I really like this story. And, like, I just - I don't think I was ever able to, like, bear witness to death when my mom died because of my age and because people were kind of, like, sheltering me from...

JAD ABUMRAD: Yeah.

RACHAEL CUSICK: ...Having to stare at it so deeply as a kid, which I think is probably, like, an act of compassion, like, for sure. But when you walk into the world and all you're left with is a silhouette of what happened to you and also to the person you love, you don't have a bridge to living in a world without them. And in the end, in both her life and death, Elisabeth really showed all of us the power of a rich, human, messy, maybe ugly, but also beautiful picture of death. But the real gift Elisabeth gave me was making me bump into...

TOM RILEY: Hello?

RACHAEL CUSICK: ...This man.

TOM RILEY: All right.

RACHAEL CUSICK: Amazing. OK, so I'm going to hang up on the phone. And you're still here. OK.

TOM RILEY: I can hear you.

RACHAEL CUSICK: Great. His name is Tom Riley.

TOM RILEY: I'm a 54-year-old father of three, and I have stage 4 pancreatic cancer.

RACHAEL CUSICK: A very, very serious form of cancer he's dying from.

TOM RILEY: So, yeah, the time frame, I think, is, like, 20 months.

RACHAEL CUSICK: How come you have a podcast studio in your home? What was that for?

TOM RILEY: This is actually for what I'm going through right now. So I started doing this just a couple of - I don't know, about three weeks ago. I call it "Eff Cancer."

RACHAEL CUSICK: "Eff Cancer"?

TOM RILEY: Effcancer.com, yeah. E-F-F cancer.

RACHAEL CUSICK: He has these long interviews with his loved ones where they talk about whatever they want to talk about with his life and death, and then they get to keep those interviews after he dies.

TOM RILEY: The whole approach that I've had with my family and my friends is just kind of complete honesty.

RACHAEL CUSICK: And when I first met Tom, I figured we'd talk once, maybe twice, but...

TOM RILEY: We could do another one of these.

RACHAEL CUSICK: Yeah, I was just going to ask you that 'cause it just seems...

But after that first call, we just kept talking. Again...

(SOUNDBITE OF PHONE RINGING)

TOM RILEY: Hey, Rachael, it's Tom. How are you?

RACHAEL CUSICK: Good. How are you?

TOM RILEY: I'm doing OK. I had a CAT scan this morning, so...

RACHAEL CUSICK: How did it go?

...And again...

Does this time work?

TOM RILEY: Thursdays are always good for me.

(SOUNDBITE OF PHONE RINGING)

TOM RILEY: Hello?

RACHAEL CUSICK: Hi, Tom. This is Rachael.

...And again...

Happy New Year.

...Not really knowing why, but the two of us just kept feeling this pull to keep calling.

(SOUNDBITE OF PHONE RINGING)

TOM RILEY: Tom Riley.

RACHAEL CUSICK: Hello, Tom Riley. This is Rachael.

And to keep answering.

TOM RILEY: Hey, Rachael. Good. How are you?

RACHAEL CUSICK: Good. I just settled into a new apartment.

We talked nearly every week for seven months now. And I think the reason is...

Are there - this is my last question, I promise. I've already taken enough of your time.

TOM RILEY: I blocked the rest of the afternoon. I really enjoyed this.

RACHAEL CUSICK: ...Because Tom...

TOM RILEY: I kind of feel like we're on this journey together, so...

RACHAEL CUSICK: I kind of do, too. It feels so presumptuous of me.

TOM RILEY: I mean, I didn't know - I felt weird even saying it.

RACHAEL CUSICK: ...Has let me ask the questions I wish I could have asked my mom.

...'Cause my mom was sick during 9/11, and I wondered - I've always wondered what it's like to be dealing with this really serious illness at a time of a national crisis.

TOM RILEY: I mean, a very real question for me at the beginning - because I had no reason to believe that I was going to even make it past, you know, Halloween - was, oh, God, I'm not even going to get to see the election. And that was actually, you know, probably in the top 10 things that I thought of in the first, you know, hours of kind of facing it, was like, I want to see what the next iPhone looks like.

(SOUNDBITE OF PHONE RINGING)

RACHAEL CUSICK: And can you tell me, like, the bad of chemo? Physically, what is that like?

TOM RILEY: Oh, sure. It feels like your arms weigh 100 pounds each without anything in them. And some of it's mental, like a boredom coupled with some feeling that you're not supposed to be feeling this right now.

RACHAEL CUSICK: Boredom is not a word that I would have put in that sentence. Tell me more about the boredom.

TOM RILEY: It's the way it felt, though. So you can look forward right now, Rachael, and you can say, I've got to get this story done on deadline, and I've got this weird story with Tom that might be three months away or six months away or, you know, whatever, but like - right? - that's just life. You're balancing things that are near-term, short term, long term, big pressure, no pressure - you know, all that stuff, and I have virtually none of that right now. I feel like I outlived myself on some level.

RACHAEL CUSICK: What does that mean? What do you mean you're outliving yourself?

TOM RILEY: And we'll make jokes about playing the C-card 'cause, you know, we were trying to get a reservation at something, and I'm like, tell them your dad has stage 4 cancer. And sometimes it actually works.

RACHAEL CUSICK: Hey, if you got it, flaunt it, man. It has to be good for something.

TOM RILEY: Well, yeah.

(SOUNDBITE OF PHONE RINGING)

RACHAEL CUSICK: Do you think that that amount of acceptance is ever hard for your family? Like, do you think they're like, I don't want you to accept this death so much, and I don't want to, like, feel that it is so imminent and, like, real?

TOM RILEY: Totally. Not with everybody, not all the time, and yes. Like, I actually just got feedback from my kids through family counseling that I'm spending too much time trying to teach them.

RACHAEL CUSICK: Wait, really?

TOM RILEY: And they said, you know, is that deliberate? And I said, are you fucking kidding me? Of course it's deliberate. I mean, you think I could possibly be in this position right now and not be thinking about, does each one of these kids know how to work a camera - you know, really know how to do it? You know, of course. You guys don't even know how the TIVO works. You know, I'm going to teach you everything.

(SOUNDBITE OF PHONE RINGING)

RACHAEL CUSICK: Is there anything that you're still afraid to talk about with your family, in relation to your diagnosis or you leaving?

TOM RILEY: Well, I don't know if it's afraid to talk to them about - I don't think there's anything like that. Like, they catch me crying every once in a while, and they freak out. Like, yesterday, they all went out for a walk. And I kind of looked out the window and saw them all walking down the street, and they were taking the dogs for a walk. And that really, really hit me.

RACHAEL CUSICK: What exactly were you thinking when you saw them through the window?

TOM RILEY: The first thing was they're going to be OK 'cause they were out, and they were having fun, and they were laughing and I just - sorry.

RACHAEL CUSICK: Don't apologize.

TOM RILEY: I had a - like, a flash-forward to seeing them doing that, you know, a year from now, two years from now, whatever. And it just made me feel great, and that made me feel sad. And that was easy to understand because that was - they're going to do great, and you're not going to be able to see it.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: Tom died a couple of months after that conversation and just weeks before the story was supposed to come out. And those conversations we had - I miss them all the time, but I think I treasure them more than anything else. Like, talking to him - it felt like letting out this breath I'd been holding my whole life. And this thing Elisabeth tried to show us - I finally understood, in a visceral way, there isn't a simple way out of grief. What there is, is people - sitting with them, listening to them while they're still here for as long as you can.

So far, I have been thinking a lot about, like, oh, my gosh, what is it going to be like the day that I call, and you don't pick up? Like, that I think about a lot. But I don't really have any dread or fear. It's kind of just, like, a question.

TOM RILEY: No, I think about you sometimes. I'm glad we met.

RACHAEL CUSICK: I am too, Tom.

(SOUNDBITE OF MUSIC)

RACHAEL CUSICK: I am so grateful to the many, and I mean many, people who helped me put the story together - like, so many I actually can't fit them all here, but their names are on our website. Go check that out. And I just want to send an extra special thank you to Martha Twaddle, who connected me with Tom, Carin Leong, who made all my montage dreams come true for this episode, and to Soren Wheeler for telling me to look up that lady who created those damn stages of grief, and Pat Walters, who received more middle of the night Elisabeth fangirl updates than any human being should have to endure.

JAD ABUMRAD: And of course, thanks to you, Rachael Cusick.

LATIF NASSER: Who, we should say, like, single-handedly reported and produced this piece. As I mentioned before the break, you probably want to hear more from Rachel right now. And to be able to do that, you can go to the podcast Death, Sex & Money. They released an episode today where you can hear Rachael talking with her grandmother.

(SOUNDBITE OF PODCAST, "DEATH, SEX AND MONEY")

RACHAEL CUSICK: I always wondered what it was like for me to be working on this story while you were sick. I don't know if you have any thoughts about it. Like, I remember one day, the nurse came to your house. And I had the "On Death And Dying" book. And she gave me this look like, holy shit. Like, you're...

MARILYN RYLAND: (Laughter).

RACHAEL CUSICK: You're really just out there doing it, aren't you?

(LAUGHTER)

RACHAEL CUSICK: And I wonder, like, what you feel about it. Is it weird? Is it comforting? Like, what does that feel like for you?

MARILYN RYLAND: No, I thought it was something you needed to do. I just thought this was your way of, you know, dealing with this, and that's a smart way. That's an intelligent way to delve into it and see what it's all about, so I just thought that was a comfort to you perhaps and that however it worked out, it would be OK.

RACHAEL CUSICK: Yeah.

LATIF NASSER: Go check it out. Just search for Death, Sex & Money wherever you get your podcasts. What's it called, Rachael?

RACHAEL CUSICK: It's called "When Grief Doesn't Move In Stages."

LATIF NASSER: I'm Latif Nasser.

JAD ABUMRAD: I'm Jad Abumrad.

LATIF NASSER: Thank you for listening.

JAD ABUMRAD: Yeah.

(SOUNDBITE OF MUSIC)

UNIDENTIFIED PERSON: RADIOLAB was created by Jad Abumrad and is edited by Soren Wheeler, Lulu Miller and Latif Nasser, our co-host. Suzie Lechtenberg is our executive producer. Dylan Keefe is our director of sound design. Our staff includes Simon Adler, Jeremy Bloom, Becca Bressler, Rachael Cusick, David Gebel, Maria Paz Gutierrez, Sindhu Gnanasambandan, Matt Kielty, Annie McEwen, Alex Neason, Sarah Qari, Arianne Wack, Pat Walters and Molly Webster with help from Shima Oliaee, Sarah Sandbach, Carin Leong and Candice Wang. Our fact-checkers are Diane Kelly and Emily Krieger.

 

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