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

[RADIOLAB INTRO]

JAD: 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: Yeah. Sort of The Journey, really.

LATIF: Because it's—it's The Journey because it's all of our journeys. It's a journey we're all on at some point.

JAD: Yes. And the person who is gonna take us on this 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.

[ARCHIVE CLIP, infomercial: Are you ready for the wildest paint set you've ever seen? It's the amazing Rainbow Art Set! Painting has never been this easy, or ...]

RACHAEL: For The Rainbow Art Set.

[ARCHIVE CLIP, infomercial: Create amazing drawings and works of art instantly!]

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

[ARCHIVE CLIP, infomercial: Now that's magic! As easy as 1-2-3. Simply dip, dab and draw.]

RACHAEL: 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 ...

[ARCHIVE CLIP, infomercial: With Rainbow Art, look! No splatter, no drips, and the colors dry instantly. Amazing!]

RACHAEL: 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 a blank page into circles and butterflies and butterflies made of circles, each swipe this perfect little tidy rainbow of colors.

RACHAEL: 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.

RACHAEL: 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—I tried to act normal too, but this mess inside me would just 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.

RACHAEL: But then one day when I was older, in my late teens I think, I finally found what I thought was a way out.

[ARCHIVE CLIP: Grief often comes in five stages.]

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

[ARCHIVE CLIP: You're gonna go through what we call the five stages of grief.]

[ARCHIVE CLIP: Five stages of grief.]

RACHAEL: It was this five-part checklist.

[ARCHIVE CLIP: There are five stages of grief.]

[ARCHIVE CLIP: What are you talking about?]

RACHAEL: 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. First ...

[ARCHIVE CLIP: Stage one ...]

[ARCHIVE CLIP: Denial.]

RACHAEL: Denial.

[ARCHIVE CLIP: Denial.]

RACHAEL: Then stage two.

[ARCHIVE CLIP: Step two, that's anger.]

[ARCHIVE CLIP: Anger.]

RACHAEL: Then bargaining.

[ARCHIVE CLIP: Bargaining.]

[ARCHIVE CLIP: Okay.]

RACHAEL: After that is ...

[ARCHIVE CLIP: Depression.]

RACHAEL: Depression. And ...

[ARCHIVE CLIP: Finally, acceptance.]

RACHAEL: ... 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 okay 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 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 couldn't fit into. And I was finally just like, "Fuck this."

JAD: Yeah.

LATIF: Yeah.

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

LATIF: [laughs] Right.

RACHAEL: And I remember, like, the night I felt like I was, like, interrogating Google. I was like, "Who gave me the stages?"

LATIF: Like, "I want to—I want to strangle them!"

RACHAEL: I—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.

RACHAEL: In my head, I'm picturing, like, this slicked-back, sleazy car salesman with, like, a grinning smile and, like, a self help-y Dracula-caped monster. But when I googled 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: [laughs] And you were like, "Wait!"

RACHAEL: I was like, I kind of want to borrow that shirt. Like, I was feeling so complicated. I remember staring at it for a few minutes, just thinking, "Who is she?"

RACHAEL: So the daisy lady, her name was Elisabeth Kübler-Ross.

LATIF: Oh! I've—I've heard that name before. Maybe?

RACHAEL: 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: Huh!

RACHAEL: And I was like, "Okay, 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 spend my days and nights just digging through archives, reading and listening to whatever interviews or talks with 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 we all face dying. And the way that we all deal with being left behind.

JAD: Well, all right!

LATIF: Yes.

RACHAEL: Okay, okay. [laughs]

LATIF: Take us on the journey.

JAD: Take—yeah, let's go. Let's do it.

RACHAEL: Okay, 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 Kübler-Ross, and I'm also the president of the Elisabeth Kübler-Ross Foundation.

RACHAEL: Growing up, like, did everybody know her, and then you're like, "Gosh, my mom's 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: She was on the cover of Playboy?

KEN ROSS: Yeah. I mean not obviously, you know, her picture.

RACHAEL: Not a centerfold. [laughs]

RACHAEL: So let me back up a little bit and tell you how Elisabeth Kübler-Ross became the face of dying. She was born in Switzerland.

KEN ROSS: In Zurich.

RACHAEL: In 1926. And she was the first of triplets.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: And so I grew up being very famous.]

RACHAEL: That's Elisabeth, by the way.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: We had big billboards.]

RACHAEL: 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.

[ARCHIVE CLIP, Elisabeth Kübler-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.

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Then 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: World War II.

KEN ROSS: She would have been, what, 19 years old?

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Went all the way to Russia and back.]

RACHAEL: 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.

KEN ROSS: My soon-to-be dad.

RACHAEL: His name is Manny.

KEN ROSS: He was from Brooklyn.

RACHAEL: They fall 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: 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 a corner of the bed with the patient, and she would hold their hand.

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

[ARCHIVE CLIP, Elisabeth Kübler-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: According to Ken, that was really meaningful to her.

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

RACHAEL: 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.

[ARCHIVE CLIP, Elisabeth Kübler-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: They were like, "We don't know what to do."

[ARCHIVE CLIP, Elisabeth Kübler-Ross: They were stuck.]

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: And this seemed very simple, and since I was a physician at the hospital I volunteered to get such a patient.]

RACHAEL: 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.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: In this big, big hospital, there was no dying patient. Nobody.]

RACHAEL: And she was like, "Okay, 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: 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 okay, there you got a broken leg. They got this, they got that.

RACHAEL: But still no dying people. Next day, she walks the halls again. 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.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: And I entered this old man's room, and I just babbled 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, truly an open welcome to sit down now. ]

RACHAEL: But Elisabeth ...

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

[ARCHIVE CLIP, Elisabeth Kübler-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 one o'clock." Tomorrow at one o'clock came. I went in there with my four students, terribly proud that I had a patient. The patient was on a lot of pillows, and oxygen tent 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.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: We were never able to listen to him. We didn't hear what he really wanted to share with another human being.]

RACHAEL: This moment, it grabbed 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.

[ARCHIVE CLIP: 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: We were waging a war and the enemy was ...

[ARCHIVE CLIP: Cancer.]

RACHAEL: And smallpox.

[ARCHIVE CLIP: Diphtheria.]

[ARCHIVE CLIP: Syphilis, whooping cough.]

[ARCHIVE CLIP: Tuberculosis.]

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

[ARCHIVE CLIP: Serums, vaccines.]

RACHAEL: ... weapons in our arsenal.

[ARCHIVE CLIP: The powerful and invisible x-rays.]

[ARCHIVE CLIP: Penicillin.]

[ARCHIVE CLIP: The new, improved iron lung]

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

[ARCHIVE CLIP: The soldiers of the treatment front.]

RACHAEL: ... were, of course ...

[ARCHIVE CLIP: The doctors.]

RACHAEL: ... the doctors.

[ARCHIVE CLIP: For on him now rests all responsibility.]

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: I think there's a great attempt to deny the reality of death in this country.]

RACHAEL: 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."

[ARCHIVE CLIP, Elisabeth Kübler-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: I get—I get it on some level because, you know, the Hippocratic Oath is, if you push it all the way, is like you don't—you don't do harm, right? Like, you don't do anything to hurt the patient. Death is like a failure.

RACHAEL: Exactly.

JAD: And so you don't—you don't lean into that.

RACHAEL: Yeah. 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: 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: Oh!

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: This started the stone rolling.]

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: What kind of fears, fantasies, turmoils they go through. What kind of hopes and expectations perhaps they wish to share.]

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

[ARCHIVE CLIP, Elisabeth Kübler-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.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: It took an average of 10 hours searching for a doctor who gave us permission to see one single patient.]

RACHAEL: So she teamed up with the Theology Department of the school.

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

RACHAEL: This is Dennis Klass, he was Elisabeth's research assistant.

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

RACHAEL: Elisabeth's team would start going into people's rooms and saying, "We want to talk to you about dying."

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

KEN ROSS: The patient would come in ...

RACHAEL: And 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: And then 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.

[ARCHIVE CLIP, Elisabeth Kübler-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: And then Elisabeth would start asking questions.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Does death mean anything special to you?]

[ARCHIVE CLIP, patient: No.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Like, all of us have a certain concept of what it's like.]

[ARCHIVE CLIP, patient: I don't know, I've never been dead.]

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

[ARCHIVE CLIP, 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." Well, this is true. Maybe they have.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: But you're 30 years old.]

[ARCHIVE CLIP, patient: But I think I have had a very good life for—for 30.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Yeah.]

RACHAEL: And much of what you hear is maybe less dramatic 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.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: What's the worst that can happen?]

[ARCHIVE CLIP, patient: The worst that can happen to me?]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Yeah.]

[ARCHIVE CLIP, patient: Well, I can die.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Yeah.]

RACHAEL: 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.

[ARCHIVE CLIP, patient voiceover: It is not the big things that count, when you're so sick and so weak. It's the little things that count.]

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

[ARCHIVE CLIP, patient voiceover: Why in the world can't they talk to me? And why can't they tell you before they do certain procedures?]

[ARCHIVE CLIP, Elisabeth Kübler-Ross voiceover: What really upset you that much yesterday morning?

[ARCHIVE CLIP, patient voiceover: 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 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: Nobody had asked them even the most basic questions about what they wanted.

[ARCHIVE CLIP, patient voiceover: I requested a chaplain in the middle of the night, and there was no night 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 three o'clock.]

RACHAEL: Or about the pain they were feeling.

[ARCHIVE CLIP, patient voiceover: Because, you see, if you have an illness and you have the pain, and you have 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 gonna live through this business of our daughter dying," and that sort of thing.]

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

[ARCHIVE CLIP, patient voiceover: The answer comes right back: "Keep your chin up, positive thinking."]

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Nobody knew who was behind the medical diagnosis. The implication was nobody cares.]

[ARCHIVE CLIP, patient voiceover: I have thought of the worthlessness that, if I were to die tomorrow, my wife would go on perfectly normal.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross voiceover: Just like nothing happened?]

[ARCHIVE CLIP, patient voiceover: That's the way I feel. She wouldn't miss a beat.]

[ARCHIVE CLIP, patient voiceover: 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: This was a young nun with Hodgkin's Disease, and she was in the hospital for the eleventh time because of it.

[ARCHIVE CLIP, patient voiceover: When people are sick, they stay away from you, you know? They think that you don't want to talk even though you can't respond. Even if they'd just sit there, you'd know you wouldn't be alone.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross voiceover: Why do you think loneliness is so dreadful to you?]

[ARCHIVE CLIP, patient voiceover: 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: But in these conversations, there's also these surprising little moments of hope.

[ARCHIVE CLIP, patient voiceover: 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 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: 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.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Some of them became very rude and very inappropriate and very angry and called us names. We were called—what do you call that?]

[ARCHIVE CLIP, interviewer: Vultures?]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Vultures.]

KEN ROSS: And if you can imagine, I mean, doctors would literally spit on her in the hallways, and leave her nasty notes in her room. And 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: 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: Even though the doctors didn't want to deal with death in this way, outside the walls of this hospital ...

[ARCHIVE CLIP, Richard Nixon: Our country is at war.]

RACHAEL: ... we were on the heels of two world wars.

[NEWS CLIP: Suicide pilots off Okinawa.]

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

[NEWS CLIP: The sweaty jungles of South Vietnam.]

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

[NEWS CLIP: Many of your pals left you that day.]

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

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

KEN ROSS: After about 10:00, 10:30 at night the clicking would start.

RACHAEL: [laughs]

KEN ROSS: And she was typing with two fingers. I remember that click-click-click-click. You know, and she'd have her coffee and cigarettes. Probably some Swiss chocolate.

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

[ARCHIVE CLIP: Dr. Ross's first book on death and dying is about to appear.]

RACHAEL: 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 being on a rock tour.

RACHAEL: ... these talks ...

[ARCHIVE CLIP, Elisabeth Kübler-Ross: All of the people in this room are going to die.]

RACHAEL: ... they exploded.

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 was like a line, you know, down around the block. And it's like wow, she's sold out the Sydney Town Hall three nights in a row. 2,000 people, 5,000 people.

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

JAD: [laughs] I'm imagining all of these—these young kids in the streets just going ...

RACHAEL: "Aaaaaah!"

JAD: Like—like the Beatles.

RACHAEL: "Elisabeth! Oh my God!" Start crying.

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

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: I think it did bother her.]

RACHAEL: She wouldn't stand behind the podium.

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

RACHAEL: She would just talk.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: The 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: 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.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: And how do you react to the 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.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: That you come in peppy. That you come in and actually function.]

BALFOUR MOUNT: He was afraid.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Because you're going to rub in all the things that he's in the process of losing.]

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

RACHAEL: This is actually where we get to the stages. Like, the five stages. Because during these speeches ...

[ARCHIVE CLIP, Elisabeth Kübler-Ross: And if we summarize, we have found that most of our patients go through similar stages.]

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Then this denial will be replaced with a tremendous anger.]

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

[ARCHIVE CLIP, Elisabeth Kübler-Ross: And this is true for all patients.]

[ARCHIVE CLIP, interviewer: Yes.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Without exceptions.]

RACHAEL: She started to use 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 is something simple that any layman or any family member can remember.

BALFOUR MOUNT: Because I mean, look, it only takes you five minutes to learn the stages.

RACHAEL: 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 ...

RACHAEL: "On Death and Dying.' [yawns]

RACHAEL: ... which I did.

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

RACHAEL: I'd read it every night before bed.

RACHAEL: 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, ten, eleven, twelve. 12 chapters. Only five stages.

RACHAEL: And the stages really just serve as these chapter headers.

RACHAEL: She starts each chapter with these poems.

RACHAEL: Like, when you get to those pages, it's really hard to find ...

RACHAEL: Just all these beautiful transcripts.

RACHAEL: ... one singular emotion.

RACHAEL: "These means will last for different periods of time, and ..."

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

RACHAEL: "Replace each other or exist at times side by side."

RACHAEL: This book ...

RACHAEL: [Yawns] Da da da da da.

RACHAEL: ... is not a five-stage-shaped anything.

RACHAEL: What does the preface say? "I have worked with dying patients for the past two-and-a-half years, and this book will tell about the beginning of this experiment."

RACHAEL: And the first page literally says ...

RACHAEL: "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."

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

RACHAEL: "I'm simply telling the stories of my patients."

RACHAEL: The real substance of this book ...

RACHAEL: “It is hoped that it will encourage others not to shy away from the hopelessly sick, but to get closer to them."

RACHAEL: 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.

[ARCHIVE CLIP, Elisabeth Kübler-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 everything and everybody you love.]

[ARCHIVE CLIP, interviewer: Everything. Yes.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: So if we help them be angry and help them be sad and let them express it and cry, and not say, "You're a man. It's not manly to cry."]

[ARCHIVE CLIP, interviewer: Yes.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: I think this is terrible.]

RACHAEL: And, like, everything that you're feeling is okay, 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.

[ARCHIVE CLIP, Elisabeth Kübler-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: Like, when I read it, I shot up in bed.

JAD: Hmm.

RACHAEL: Because I was like, "Oh my God, this is it!" This book, it wasn't meant for me. It was for my mom. And, like, she never let herself feel those things. I think it was just because she was trying to fight it for so long and be there for us. And, like, death wasn't an option for her. But it was—it was 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 it and, like, putting flowers on it.

JAD: [laughs]

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

JAD: 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: And just shortly before that short break, Rachael hooked up with friends at the podcast Death, Sex and Money. And not just Rachael. Rachael and her grandmother, her mother's mother. And so when you get to the end of this episode and you are gonna 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 Rachael and the rest of Elisabeth Kübler-Ross's story.

[LISTENER: Hello, this is Erin Skornya, currently located in Arlington, Texas. Radiolab is supported in part by the Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world. More information about Sloan at www.sloan.org.]

[JAD: Science reporting on Radiolab is supported in part by Science Sandbox, a Simons Foundation initiative dedicated to engaging everyone with the process of science.]

JAD: Okay, here we go!

LATIF: Ahh! All right!

JAD: Jad

LATIF: Latif

JAD: Radiolab.

LATIF: And ...

RACHAEL: You good?

LATIF: Rachael Cusick.

RACHAEL: So we are talking about Elisabeth Kübler-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 pile up 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—Elisabeth had some other realities.

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

DENNIS KLASS: Did you read about Mrs. Schwartz?

RACHAEL: No, who's that?

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

RACHAEL: 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: The only problem is ...

DENNIS KLASS: Mrs. Schwartz is dead.

JAD: [gasps]

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

JAD: Was it one of those, like, where you write a letter knowing it's gonna to be delivered after your death? Or did she ...

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

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

JAD: Yeah that's kind of bizarre.

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

DON SCHUMACHER: Hello?

TOM FRANTZ: Hello?

RACHAEL: I'm just gonna let these two guys tell it.

DON SCHUMACHER: Don Schumacher.

RACHAEL: And Tom Frantz? Or France?

TOM FRANTZ: Frantz. 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: 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: 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: And they kept going to these talks, Don and Tom and five of their friends.

TOM FRANTZ: There were seven of us.

RACHAEL: They started calling themselves The Buffalo Seven.

TOM FRANTZ: We—I suppose we were sort of groupies.

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

DON SCHUMACHER: Shanti Nilaya.

RACHAEL: 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 ...

[ARCHIVE CLIP: Shanti Nilaya ...]

RACHAEL: Which means "Final Home of Peace." And I've heard from numerous people, the center, it kind of looks 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, a very far-out experience.

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

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

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

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

TOM FRANTZ: Scarves, they would light up.

RACHAEL: ... shimmying and dancing around.

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

RACHAEL: And then ...

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

TOM FRANTZ: An entity ...

DON SCHUMACHER: Our soulmate in this experience.

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

RACHAEL: A moment later, Don says ...

DON SCHUMACHER: Your spirit guide approached you.

TOM FRANTZ: It was pitch black.

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

TOM FRANTZ: Like a closet, because it was very small, and they needed it 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: Who was 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. [laughs]

RACHAEL: 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're—like you were hugging them.

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

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

RACHAEL: Okay.

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

RACHAEL: Do you remember thinking, 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 gonna go on.

RACHAEL: 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: Oh, God!

LATIF: Oh, no!

RACHAEL: 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: 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: Oh, no!

RACHAEL: 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 got out of there that we had been taken advantage of.

RACHAEL: Did you have to pay to go?

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

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

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

RACHAEL: 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 did not want her there. People protested, they sent her death threats, someone killed her pet llama.

JAD: Oh, damn!

RACHAEL: 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 she herself started dying.

[ARCHIVE CLIP, Oprah Winfrey: Elisabeth Kübler-Ross. She was in preparation for dying herself. So the death and dying lady was getting ready to die.]

RACHAEL: All of a 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 Kübler-Ross which appeared on the front page of the San Francisco Chronicle on May 31, 1997. "Expert on Death Faces Her Own."

RACHAEL: The whole world wanted to know ...

DON LATTIN: This is the death and dying guru, and how is she—how was she dealing with it personally?

[ARCHIVE CLIP, 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: 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: She's sitting in a beige lounger chair.

DON LATTIN: She was chain smoking, and it was Dunhill cigarettes.

[ARCHIVE CLIP, Oprah Winfrey: Elisabeth says she's ready to die, but she's not going gently.]

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

[ARCHIVE CLIP, Oprah Winfrey: Did you go through those stages yourself?]

RACHAEL: ... 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!"

[ARCHIVE CLIP, Elisabeth Kübler-Ross: I was angry, angry, angry and enraged. Nothing but anger and negative.]

[ARCHIVE CLIP, Oprah Winfrey: So no denial for you?]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: No. Are you kidding?]

[ARCHIVE CLIP, Oprah Winfrey: No.]

[ARCHIVE CLIP, Elisabeth Kübler-Ross: No denial.]

RACHAEL: It was this massive trainwreck of a story people couldn't look away from. Like, Elisabeth Kübler-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 ...

[ARCHIVE CLIP: Five stages ...]

[ARCHIVE CLIP: The five stages of grief.]

RACHAEL: ... they took hold.

[ARCHIVE CLIP: Grief often comes in five stages.]

KEN ROSS: Everyone just couldn't stop talking about them.

RACHAEL: They were everywhere.

[ARCHIVE CLIP: You're gonna go through what we call the five stages of grief.]

RACHAEL: From Scrubs to ...

[ARCHIVE CLIP: Which are: denial.]

RACHAEL: ... The Office.

[ARCHIVE CLIP: According to Elisabeth Kübler-Ross ...]

RACHAEL: Grey's Anatomy.

[ARCHIVE CLIP: ... we all move through five distinct stages of grief.]

[ARCHIVE CLIP: Big Bird, don't you remember we told you ...]

RACHAEL: To Sesame Street.

[ARCHIVE CLIP: ... Mr. Hooper died? Well, I'll give it to him when he comes back.]

RACHAEL: To ...

[ARCHIVE CLIP: 'Cause I'm not dying. Why you little—!]

RACHAEL: The Simpsons.

[ARCHIVE CLIP: I'll get you!]

RACHAEL: Even ...

[ARCHIVE CLIP: This May ...]

[ARCHIVE CLIP: There are five stages of grief.]

RACHAEL: ... movie trailers from this past summer.

RACHAEL: 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: Oh, yes. Hold on.

RACHAEL: At one point, Ken ...

RACHAEL: Oh my gosh!

RACHAEL: ... 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: Oh, wait every ...

RACHAEL: I started seeing all these colors of that last part of her life. Like, how she absolutely loved ET.

JAD: Oh, my God!

RACHAEL: Like, she would 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: Her little booties!

KEN ROSS: It's—she always had that little finger up.

RACHAEL: 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: Oh, my God. The triplets all altogether.

KEN ROSS: Right, yeah. You know, here she was doing these wheelchair races. It was a big mix mash.

RACHAEL: She looks really happy there. I don't know. Like, she just 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—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: 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.

RACHAEL: She loved Costco? A woman after my own heart! [laughs]

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 ten letters."

RACHAEL: 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 would go, "Ach!" 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: She was still holding that space for messiness in a way that we weren't holding for her.

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

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

B.J. MILLER: She just was—sounds like she was just taking her own medicine and letting it rip, letting it fly.

RACHAEL: 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.

[ARCHIVE CLIP, Elisabeth Kübler-Ross: Just be you. If you feel like screaming, you scream. If you feel like crying, you cry. Don't try to follow textbook.]

RACHAEL: And on Tuesday August 24, 2004, Elisabeth died. I've been thinking a lot about how—why I really like this story, and 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.

JAD: Yeah.

RACHAEL: From 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: This man.

RACHAEL: [Laugh] So I'm gonna hang up on the phone.

TOM RILEY: Yep.

RACHAEL: And you're still here? Okay.

TOM RILEY: I can hear you.

RACHAEL: Great.

RACHAEL: His name is Tom Riley.

TOM RILEY: I'm a 54-year-old father of three. And I have stage four pancreatic cancer.

RACHAEL: 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: 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: F Cancer?

TOM RILEY: Eff-cancer.com, yeah [laugh]. Yeah E-F-F cancer.

RACHAEL: 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—with my family and my friends, is just kind of complete honesty.

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

TOM RILEY: Well, we can do another one of these.

RACHAEL: Yeah, I was just gonna ask you that because it just seems like ...

RACHAEL: But after that first call, we just kept talking.

[phone ringing]

RACHAEL: Again ...

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

RACHAEL: Good, how are you?

TOM RILEY: I'm doing okay. I had a CAT scan this morning. So ...

RACHAEL: How did it go?

RACHAEL: ... and again.

RACHAEL: Would this time work?

TOM RILEY: Thursdays are always good for me.

[phone ringing]

TOM RILEY: Hello?

RACHAEL: Hi Tom, this is Rachael.

RACHAEL: And again.

RACHAEL: Happy New Year's!

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

[phone ringing]

TOM RILEY: Tom Reilly.

RACHAEL: Hello, Tom Reilly. This is Rachael Cusick.

RACHAEL: And to keep answering.

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

RACHAEL: Good! I just settled into a new apartment, so I'm calling you from a brand-new ...

RACHAEL: We talked nearly every week for seven months now, and I think the reason is ...

RACHAEL: Are there—this is my last question, I promise.

TOM RILEY: Come on, I blocked the rest of the afternoon. I've really enjoyed this.

RACHAEL: ... because Tom ...

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

RACHAEL: I kind of do, too. I feel it's so presumptuous of me. [laughs]

TOM RILEY: I mean, I felt weird even saying it.

RACHAEL: Yeah. [laughs]

RACHAEL: ... has let me ask the questions I wished I could've asked my mom.

[phone ringing]

RACHAEL: Because my mom was sick during 9/11, and I wonder—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 gonna even make it past, you know, Halloween—was, "Oh God, I'm not even gonna get to see the election!" And that—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.

[phone ringing]

RACHAEL: 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 a hundred 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: Boredom is not a word that I ...

TOM RILEY: I know!

RACHAEL: ... would have put in that sentence. So 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 gotta 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.

RACHAEL: [laughs] Mm-hmm.

TOM RILEY: 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: What does that mean? What do you mean you're outliving yourself?

TOM RILEY: And we'll make jokes about playing the C-card because, you know, we were trying to get a reservation at something. And I'm like, "Tell them your dad has stage four cancer." And sometimes it actually works. [laughs]

RACHAEL: [laughs] Hey, if you've got it, flaunt it, man. It has to be good for something.

TOM RILEY: Well, yeah!

[phone ringing]

RACHAEL: 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 from family counseling that I'm spending too much time trying to teach them.

RACHAEL: Wait, really?

TOM RILEY: They said, you know, "Is that deliberate?" I said, "Are you fucking kidding me? Of course it's deliberate." [laughs] 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 cam—work a camera? You know, really know how to do it? You know, of course I—you guys don't even know how the TIVO works. You know, I'm gonna teach you everything.

RACHAEL: [laughs]

[phone ringing]

RACHAEL: When—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: Hmm. What—what exactly were you thinking when you saw them through the window?

TOM RILEY: The first thing was, they're gonna be okay. Because they were out and they were having fun and they were laughing and I just [sniffles]—sorry.

RACHAEL: 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 gonna do great, and you're not going to be able to see it.

RACHAEL: Tom died a couple months after that conversation, and just weeks before this 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.

JAD: Hmm.

RACHAEL: And this thing Elisabeth tried to show us, I finally understood, and 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.

RACHAEL: So far, I have been thinking a lot about, like, oh my gosh, what is it gonna 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—I think about you sometimes. I'm glad we met.

RACHAEL: I am too, Tom.

RACHAEL: I am so grateful to the many—and I mean many—people who helped me put this story together. Like, so many I can't actually 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 of 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: And of course, thanks to you, Rachael Cusick.

LATIF: 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 Rachael 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.

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

GRANDMA: [laughs]

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

GRANDMA: No I don't—I thought it was something you needed to do. I just thought this was your way of, you know, of 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—it would be okay.

RACHAEL: Yeah.

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

RACHAEL: It's called, "When Grief Doesn't Move in Stages."

LATIF: I'm Latif Nasser.

JAD: I'm Jad Abumrad.

LATIF: Thank you for listening.

JAD: Yeah.

[LISTENER: Radiolab was created by Jad Abumrad and is edited by Soren Wheeler. Lulu Miller and Latif Nasser are our co-hosts. 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 Gutiérrez, 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 Candace Wall. Our fact-checkers are Diane Kelly and Emily Krieger.]

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