The Queen of Dying
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Hey, I'm Jad Abumrad. And I'm Latif Nasser. This is Radiolab. And today we have the story of a journey, you could call it. Yes, sort of the journey, really. Because it's the journey, because it's all of our journey. It's a journey we're all on at some point. 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, Rachel Cusick.

So back in the early 2000s, when I was five years old, my favorite thing on TV was this 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. For the Rainbow Art Set. Create amazing drawings and works of art instantly. Whenever that commercial came on, I lost my mind.

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, 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, 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 grownups in our lives and

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...

But then...

One day when I was older, in my late teens I think, I finally found what I thought was a way out. Grief often comes in five stages. I'm not sure when or how exactly I came across it, but... You're going to go through what we call the five stages of grief. Five stages of grief. It was this five-part checklist. There are five stages of grief. What are you talking about? 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, stage one, denial, denial, denial. Then stage two, step two, that's anger, anger. Then bargaining, bargaining. Okay. After that is depression, depression. And finally, acceptance. 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 it's

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. 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 just couldn't fit into. And I was finally just like, fuck this. Yeah. Like who the hell sold me this crock of shit? And I remember like the night I felt like I was like interrogating Google. I was like, who gave me the stages? I want to strangle them. Yeah. 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. In my head, I'm picturing like this slicked back, sleazy car salesman with like a grinning smile and like self-helpy Dracula-caped monster. 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? You're like, wait. 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?

So the Daisy lady, her name was Elizabeth Kubler-Ross. Oh, I've heard that name before. Maybe? 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. Huh. 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 Elizabeth 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.

Well, all right. Okay. Yes. Take us on the journey. Yeah, let's go. Let's do it. Okay, so Elizabeth died back in 2004, but I called the photographer of that daisy photo. Hi, my name is Ken Ross. I'm the son of Elizabeth Kubler-Ross, and I'm also the president of the Elizabeth Kubler-Ross Foundation. 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. 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.

She was on the cover of Playboy. Yeah, I mean, not obviously, you know, her picture. Yeah, not a centerfold. So let me back up just a little bit and tell you how Elizabeth Kubler-Ross became the face of dying. She was born in Switzerland. In Zurich. In 1926. And she was the first of triplets.

That's Elizabeth, by the way. 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.

And so, you know, it really set this thing off in my mother that she had to find her own voice. And so as she grew up, she

She kind of became the rebel of the family. She joined a peace group the day the war ended. World War II. She would have been, what, 19 years old?

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. His name is Manny. They fall in love. Yeah.

She had graduated a year ahead of my dad, and she was put in charge of seven villages out in the country. And she's like the only town doctor. 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 the patient, and she would hold her hand. And oftentimes she'd be a witness to death.

According to Ken, that was really meaningful to her.

But my dad had other plans. And so we kind of dragged my mom back reluctantly to New York. The family moves around a bit. Eventually, Elizabeth becomes a psychiatrist at the University of Chicago. And one day she's sitting in her office when these four theological students walk in. Theology students had a research project on crisis in human life. And four of the whole class have chosen dying as the biggest crisis human beings have to face.

They were like, we don't know what to do. But Elizabeth was just like, why don't we just go talk to someone who's dying? 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 she was universally told on every floor and every ward that there was no dying patients. In this big, big hospital, there was no dying patient. Nobody. 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. So she always had these Hawaiian Aloha shirts on. She had her Bergen stocks. Tiny little woman walking down these long hallways with green tiles, shiny floors, and bad lighting. So my mother walked to a few rooms and, okay, they got a broken leg. They got this, they got that. 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. And I entered 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 bleeding eyes. I heard him say, "Please sit down now."

But Elizabeth... 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 in a lot of pillows in 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. We were never able to listen to him. We didn't hear what he really wanted to share with another human being.

This moment, it grabbed a hold of Elizabeth and just wouldn't let her go. Because that man, he wanted to talk about dying. But Elizabeth missed it. And really, at the time in America, we were all missing it. 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. We were waging a war, and the enemy was cancer and smallpox, diphtheria, syphilis, pooping cough, tuberculosis. And at this moment in time, we finally had some serums, vaccines, weapons in our arsenal. The powerful and invisible x-rays can summon a new, improved iron lung. And the army we recruited for this war on death, the soldiers of the treatment front, were, of course, the doctors.

The doctors. For on him now rests all responsibility. And in the heat of that fight, the possibility of defeat became something you weren't even supposed to acknowledge. I think there is a great attempt to deny the reality of death in this country. This was a time when, like, doctors didn't even tell patients, like, what their diagnoses were. In the mid-1960s, I've heard that

doctors did not tell our patients they were dying of cancer. They would say, well, there's a spot on the x-ray. We're doing more tests. 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.

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 like a failure. And so you don't lean into that. And maybe they saw it as this act of compassion, but in the process, the experiences of the people who were actually dying and really the people themselves got pushed aside. All the dying people were at the backsides of the hospitals, hospitals.

You know, floors people didn't use much. Wait, is that really something that happened? 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. Ugh. But after Elizabeth found that man and saw how desperately he wanted to talk to someone about what he was going through... This started the stone rolling. Suddenly, she needed to find out. Like, what did the dying want to tell us?

What kind of fears, fantasies, turmoils they go through? What kind of hopes and expectations perhaps they wish to share?

And she just decided, like, I'm going to start a seminar where we find dying patients and we talk to them. 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. 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. It took an average of 10 hours searching for patients.

So she teamed up with the theology department of the school. We weren't looking for a particular thing. We were just looking for somebody with a terminal diagnosis. This is Dennis Klass. He was Elizabeth's research assistant. There were four research fellows. I was only one of them. Elizabeth's team would just start going into people's rooms and saying...

We want to talk to you about dying. You know, if they said yes, I'd say, okay. Then I would just start wheeling her through the corridors down to the seminar room. The patient would come in. There's a smaller room where Elizabeth and a chaplain, a chaplain often came to be able to like mediate these conversations about faith. So Elizabeth, a chaplain, and a patient are sitting in this tiny room. Behind a two-way mirror. And on the other side of that glass, there's a group of people watching and listening because Elizabeth made these interviews open to students.

to other doctors, to cleaning staff, anyone in the hospital who wanted to come and hear these voices. Which the patient is fully aware, naturally, that it's tape recording of the audience, who he cannot see and hear, but they can see and hear us. And then Elizabeth would start asking questions. Does death mean anything special to you? Like all of us have a certain concept of what it's like. I don't know. I've never been dead.

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

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. What's the worst that can happen? Worst that can happen to me? Yeah. Well, I can die. Yeah. Yeah.

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. It's not the big things that count when you're so sick and so weak. It's the little things that count. And the thing you hear so clearly is that the patients themselves felt forgotten.

Why in the world can't they talk to me? And why can't they tell you before they do certain procedures? What really upset you that much yesterday morning? 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.

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

or about the pain they were feeling. 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. 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. The answer comes right back. Keep your chin up, positive thinking. And he said that being told that just made him feel totally alone. Nobody knew who was behind the medical diagnosis. The implication was nobody cares. I have thought of the worthlessness.

That if I were to die tomorrow, my wife would go on perfectly normal. Just like nothing happened? That's the way I feel. She wouldn't miss a beat. My sisters only come once a week, and sometimes they don't come at all. I need people, and then they don't come. This was a young nun with Hodgkin's disease, and she was in the hospital for the 11th time because of it. 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'd know you wouldn't be alone. Why do you think loneliness is so dreadful to you? 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. But in these conversations, there's also these surprising little moments of hope. 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.

I found these conversations to be so beautiful, but the doctors back in the 60s, they were not fans of what Elizabeth was trying to do. Some of them became very rude and very inappropriate and very angry and called us names. We were called, what do you call that? Vultures. Vultures. And if you can imagine, I mean, doctors would literally spit on her in the hallways,

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. But more and more people kept showing up to these seminars and... 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. Even though the doctors didn't want to deal with death in this way, outside the walls of this hospital... Our country is at war.

We were on the heels of two world wars. Suicide pilots off Okinawa. And then the Korean War. And by the time Elizabeth moved to Chicago, The war in Vietnam had been rumbling for years at this point. Many of your pals left you that day. 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. Soon, Elizabeth starts putting these interviews and her thoughts about them down on paper. After about 10, 10.30 at night, the clicking would start. And she was typing with two fingers. I remember the click, click, click, click. You know, and she'd have her coffee and cigarettes. Probably some Swiss chocolate.

And then in 1969, she published this book. Dr. Ross's first book on death and dying is about to appear. It's called On Death and Dying. And when she started going around and giving talks about the book. You know, it was like going on a rock tour. These talks. All of the people in this room are going to die. They exploded. They exploded.

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's 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. 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. Yeah.

I'm imagining all these young kids in the streets going, like the Beatles. Start crying, right?

What struck me was one of the neurologists that I had great esteem for was standing on his tiptoes and the third line at the back, you know, it's like seeing Jesus tearing out the garbage, you know, I mean, I couldn't believe what I was seeing. 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 Elizabeth speak at one of those early lectures. She was remarkable. Even though it was like a rock hall on the outside, on the inside of these seminars, things were interesting.

I think he did bother her. She wouldn't stand behind the podium. She chose to sit on the lecture table, swinging her legs back and forth. She would just talk. It's 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? But when she started speaking and that little soft voice, she could have an audience in the palm of her hand for the next 45 minutes. I mean, there was not a sound in the audience. She just had him. 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.

And how do you react to a nasty, unpleasant, mean patient? What do you do? 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. That you come in peppy.

He was afraid. Just the level of connection that she could generate.

This is actually where we get to the stages, like the five stages, because during these speeches... And if we summarize, we have found that most of our patients go through similar stages. Elizabeth would talk about this series of reactions she had seen her dying patients go through. Then this denial will be replaced with a tremendous anger. Denial, anger, bargaining, depression, and acceptance. And this is true for all patients, without exceptions. She sort of used them to organize her talk.

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. Because, I mean, look, it only takes you five minutes to learn the stages. 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 Elizabeth 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 Elizabeth's book on death and dying, 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. 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12. 12 chapters. 12 chapters.

Only five stages. And the stages really just serve as these chapter headers. He 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. These means will last for different periods of time. She says you could go through all these stages and then repeat some, replace each other, or exist at times side by side. This book...

is not a five-stage-shaped anything. What is the preface saying?

I've worked with dying patients for the past two and a half years, and this book will tell about the beginning of this experiment. And the first page literally says, 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.

I'm simply telling the stories of my patients. The real substance of this book 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. 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. 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. I think this is terrible. 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. Like, when I read it, I shot up in bed because 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 because 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, 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 Elizabeth 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. But then as I kept digging into her story, all that changed. 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. And just shortly before that short break, Rachel hooked up with our friends at the podcast Death, Sex, and Money. And not just Rachel, Rachel 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 Rachel, 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 Elizabeth Kubler-Ross's story.

Hello, this is Erin Skornia, currently located in Arlington, Texas. The 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. Science Reporting on Radiolab is supported in part by Science Sandbox, a Simons Foundation initiative dedicated to engaging everyone with the process of science.

I'm Maria Konnikova. And I'm Nate Silver. And our new podcast, Risky Business, is a show about making better decisions. We're both journalists whom we light as poker players, and that's the lens we're going to use to approach this entire show. We're going to be discussing everything from high-stakes poker to personal questions. Like whether I should call a plumber or fix my shower myself. And, of course, we'll be talking about the election, too. Listen to Risky Business wherever you get your podcasts. ♪

Okay, here we go. All right. Jad Latif, Radiolab. You good? And Rachel Cusick. So we are talking about Elizabeth 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 altogether that just made me feel differently about her and what she could teach me.

And it all started with this thing. Elizabeth had some other realities. Elizabeth's former assistant, Dennis Klass, told me. Did you read about Mrs. Schwartz? No, who's that? Well, I did not recruit Mrs. Schwartz for the seminar, but somebody did. Dennis said Mrs. Schwartz was one of Elizabeth's patients. But then one day... Mrs. Schwartz appeared to her in the hallway by her office and said something about, you are called to this, keep it going. The only problem is...

Mrs. Schwartz is dead. Oh!

And Elizabeth 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. Was it one of those, like, where you write a letter knowing it's going to be delivered after your death? No, no. Elizabeth told Dennis that she had received a letter from a dead lady. And Elizabeth's son, Ken, said it wasn't a one-time kind of deal. Like, around this time, Elizabeth started talking about these things she called her spooks.

You know, that word, I think, in particular, really set off the media. Elizabeth is talking about her spooks. Other dead people, like Mrs. Schwartz, but with names like Mario and Willie. The only one I remember her mentioning by name was Joseph. Yeah, that's kind of bizarre. Yeah, it's a little bit funny, but it also was a turn that ended up taking her to a very dark place.

Hello. Hello. I'm just going to let these two guys tell it. John Schumacher. And Tom France or France? France. I was a faculty member at the University of Buffalo. My most recent job was as the president of the National Hospital.

Both these guys spent their lives working and dying in grief, and they both got into this work because of Elizabeth. Oh, absolutely. For me, life-changing. They both went to Elizabeth's lectures after the book came out. And they kept going to these talks, Don and Tom and five of their friends. They started calling themselves Elizabeth.

The Buffalo 7? I suppose they were sort of groupies. And they were Elizabeth's biggest fans until... Shantinilaya. Elizabeth 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... Shantinilaya. 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 Shantinolaya. This was a little, well, a very far out experience. But it was not at all anything that I thought it was going to be.

So Tom and Don, they go with Elizabeth into this room. With a couple dozen other people there.

And then the lights were turned down. And it just got stranger and stranger and stranger. It really did. People began singing. You Are My Sunshine was Elizabeth's favorite song. We sang that a lot. Then Tom said, through the dark, in the middle of the room, he saw these scarves. Scarves. They would light up. Shimmying and dancing around. Two or three of them in different colors.

And then... A moment later, Don says... But Tom says he could tell that a person, like an actual person, was standing there.

And that spirit guide would lead them into another room. And they would talk to you about your past lives. Who was your spirit guide? Do you remember? Or was it so dark you couldn't see them? Well, you couldn't see them, but you could feel them because, you know, you could absolutely feel them. Yeah.

Wait, what does that mean, absolutely feel them, just like you were, like, up close to them? Oh, oh, no, you were holding them, like you were hugging them. In Tom and Don's case, their spirit guide was clearly a woman. And she had no clothes on. And it wasn't quite sexual. Wait, but you hugged them when they're talking? Yes. Well, yes, you were hugging them while they were talking.

Okay. Yeah, it was weird. It was very weird. Do you remember thinking, like, what's going on here as it was happening? Oh, God, yeah. I didn't know what to expect. You didn't know for sure what was going to go on. How long were you in the darkroom for? I would say two hours. The lights came on, and I just know that it stopped.

Oh, God. Oh, no. 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. It was hard. It was hard to go through. And it got worse. Like fairly soon after Elizabeth opened Shantinelaya, the man who ran these darkroom sessions, this guy named Jay Barham, was

was accused by numerous people of engaging in sexual misconduct in these dark rooms. Oh, no. Yeah. And Elizabeth protected this guy, saying, like, you 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. And everybody was shocked and dismayed, I think, when we got out of there that we had been taken advantage of. Did you have to pay to go? I don't think so, but I don't recall. So when you say taken advantage of, it's more like emotionally and psychologically, not like financially. Yeah. And that more than that, that Elizabeth was being taken advantage of.

A lot of people I talked to about this said that they don't think Elizabeth 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, Elizabeth left California and ran away to the 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. Oh, damn. And then eventually her house mysteriously burnt to the ground. Yeah.

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. Elizabeth Kubler-Ross, she was in preparation for dying herself. So the death and dying lady was getting ready to die. All of a sudden, everybody wanted to hear from her again. My name is Don Lattin, and I'm a journalist. So yeah, I wrote an article about Elizabeth Kubler-Ross, which appeared on the front page of the San Francisco Chronicle. On May 31st, 1997, expert on death faces her own.

The whole world wanted to know. This is the death and dying guru. And how is she dealing with it personally? But I went out to Arizona to talk to her and found out that she's not so keen on dying right now. Don says it didn't look like she was handling it too well. Her house was very cluttered. Not exactly a hoarder, but, you know, getting there. She's sitting in this beige lounger chair. She was chain smoking and it was Dunhill cigarettes.

Elizabeth says she's ready to die, but she's not going gently. And it was a pretty similar scene to the day Oprah was there. Like, she's grouchily fielding questions about... Did you go through those stages yourself? Which stage of dying she was in. She didn't miss a beat. I said, what stage are you in? And she said, anger!

I'm pissed! I was angry, angry, angry and enraged. Nothing but anger and negativity. So no denial for you? No, are you kidding? No. No denial. It was this massive train wreck of a story people couldn't look away from. Like Elizabeth 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... The five stages of grief. They took place.

Grief often comes in five stages. Everyone just couldn't stop talking about them. They were everywhere. You're going to go through what we call the five stages of grief. From scrubs to... Which are denial. The office. According to Elizabeth Kubler-Ross. Grey's Anatomy. We all move through five distinct stages of grief. Big Bird, don't you remember we told you? To Sesame Street. Mr. Hooper died. Well, I'll give it to him when he comes back. To... Because I'm not dying. The Simpsons. You little...

Even movie trailers from this past summer. 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... Can I share my screen with you? Oh, yes. Hold on. At one point, Ken... Oh, my God. ...showed me all these pictures of her from her final years. So there is Elizabeth on Halloween. She used to dress like E.T. on every Halloween. I started seeing all these colors of that last part of her life, like how she absolutely loved E.T. 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. So here's my mother with her finger again. She always had that little finger up. Oh my gosh. These photos are amazing. Here's my mom on her 75th birthday. We...

Took my mom to see her sisters one last time. The triplets all together. Right, yeah. You know, here she's doing these wheelchair races. It's a big mix mash. 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 the articles you read that she was angry or she was depressed. But like these seem a little bit more complex. You know, occasionally she had those days, but that's not who she is.

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.

This is Joanne Cacciatore, who was pretty much Elizabeth's best friend during that time. Yeah, we were very, very, very close. I would take her shopping. She loved shopping. She loved Costco. She loved Costco? A woman after my own heart. 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. Joanne told me that she and Elizabeth would have these really beautiful conversations about grief. 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 go, oh, 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.

She was still holding that space for messiness in a way that we weren't holding for her. There's a perfect irony to criticizing Cooper 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. That's BJ Miller. He's a hospice and palliative care doctor. She just was, sounds like she was just taking her own medicine and letting it rip, letting it fly.

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. Be you. If you feel like screaming, you scream. If you feel like crying, you cry. Don't try to follow a textbook. And on Tuesday, August 24th, 2004, Elizabeth died. 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 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 before.

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, Elizabeth really showed all of us the power of a rich, human, messy, maybe ugly, but also beautiful picture of death. But the real gift Elizabeth gave me was making me bump into...

Hello. This man. All right. Amazing. Okay, so I'm going to hang up on the phone. And you're still here. I can hear you. His name is Tom Riley. I'm a 54-year-old father of three, and I have stage four pancreatic cancer. A very, very serious form of cancer he's dying from. So, yeah, the timeframe, I think, is like 20 months. Yeah.

How come you have a podcast studio in your home? What was that for? 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 F-Cancer. F-Cancer? F-Cancer.com. Yeah. E-F-F-Cancer. 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. Yes.

The whole approach that I've had with my family and my friends is just kind of complete honesty. And when I first met Tom, I figured we'd talk once, maybe twice. We could do another one of these. Yeah, I was just going to ask you that. But after that first call, we just kept talking.

Hey, Rachel, it's Tom. How are you? Good. How are you? I'm doing okay. Had a CAT scan this morning, so. How did it go? And again. Is this time work? I'm totally down. Thursdays are always good for me.

Hello? Hi, Tom, this is Rachel. And again, not really knowing why, but the two of us just kept feeling this pull to keep calling. Tom Riley? Hello, Tom Riley. This is Rachel. And to keep answering. Hey, Rachel, good. How are you? Good. I just settled into a new apartment, so I'm calling you. 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 blocked the rest of the afternoon. I really enjoyed this. Because...

Tom. I kind of feel like we're on this journey together. I kind of do too. I feel so presumptuous of me. I mean, I didn't, I felt weird even saying it. Has let me ask the questions I wish I could have asked my mom.

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

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.

And can you tell me like the bad of chemo physically? What is that like? 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. Boredom is not a word that I would have put in that sentence. So tell me more about the boredom. It's the way it felt, though.

So you can look forward right now, Rachel, 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. What does that mean? What do you mean you're outliving yourself?

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. Hey, if you got it, flaunt it, man. It has to be good for something. Well, yeah. 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. Totally. Not with everybody, not all the time. And yes, like I actually just got feedback from my kids through family counseling that

spending too much time trying to teach them wait really 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 gonna teach you everything

Is there anything that you're still afraid to talk about with your family in relation to your diagnosis? Are you leaving? 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. What exactly were you thinking when you saw them through the window? The first thing was they're going to be okay because they were out and they were having fun and they were laughing. And I just, sorry. Don't apologize. 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. 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.

And this thing Elizabeth 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 if 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. No, I think about you sometimes. I'm glad we met. I am too, Tom. I am so grateful to the many, and I mean many people who helped me put this story together. Like so many, I actually can't put 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 today.

And of course, thanks to you, Rachel Cusick, who we should say like single-handedly reported and produced this piece. I don't know if you've heard of it, but it's a piece that was written by a woman named Rachel Cusick.

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 and Money. They released an episode today where you can hear Rachel talking with her grandmother. 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 really just out there doing it. And I wonder like what you feel about it. Is it, is it weird? Is it comforting? Like, what does that feel like for you? No, I just, I thought it was something you needed to do. I just thought this was your way of, of, um,

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 okay. Yeah.

Go check it out. Just search for Death, Sex, and Money wherever you get your podcasts. What's it called, Rachel? It's called When Grief Doesn't Move in Stages. I'm Latif Nasser. I'm Chad Abumrad. Thank you for listening. Yeah.

Alex Neeson, Zara Khari, Arianne Wack,

Pat Walters, and Molly Webster. With help from Shima Oliae, Sarah Sandbach, Kareen Leong, and Candice Wong. Our fact checkers are Diane Kelly and Emily Krieger.