Radiolab - The Queen of Dying

Episode Date: July 23, 2021

If you’ve ever lost someone, or watched a medical drama in the last 15 years, you’ve probably heard of The Five Stages of Grief. They’re sort of the world’s worst consolation prize for loss. But last year, we began wondering… Where did these stages come from in the first place? Turns out, Elisabeth Kübler-Ross. But the story is much, much more complicated than that. Those stages of grieving? They actually started as stages of dying. After learning that, producer Rachael Cusick tumbled into a year-long journey through the life and work of the incredibly complicated and misunderstood woman who single-handedly changed the way all of us face dying, and the way we deal with being left behind. Special Note: Our friends over at Death Sex and Money have put together a very special companion to this story, featuring Rachael talking about this story with her grandmother.  Check it out here. This episode was reported and produced by Rachael Cusick, with production help from Carin Leong. This story wouldn’t have been possible without the folks you heard from in the episode, and the many, many people who touched this story, including: Anne Adams, Andrew Aronson, Audrey Gordon, Barbara Hogenson, Basit Qari, Bill Weese, Bob McGan, Carey Gauzens, Clifford Edwards, Cristina McGinniss, Dorothy Holinger, Frank Ostaseski, Ira Byock, Jamie Munson, Jessica Weisberg, Jillian Tullis, Joanna Treichler, Jonathan Green, Ken Bridbord, Ladybird Morgan, Laurel Braitman, Lawrence Lincoln, Leah Siegel, Liese Groot, Linda Mount, Lyn Frumkin, Mark Kuczewski, Martha Twaddle, Peter Nevraumont, Rosalie Roder, Sala Hilaire, Stefan Haupt, Stephanie Riley, Stephen Connor, and Tracie Hunte. Special thanks to all the folks who shared music for this episode, including: Lisa Stoll, who shared her Alpine horn music with us for this episode. You can hear more of her music here. Cliff Edwards, who shared original music from Deanna Edwards. The Martin Hayes Quartet, who shared the last bit of music you hear in the piece that somehow puts a world of emotion into one beautiful tune. And an extra special thank you to the folks over at Stanford University - Ben Stone, David Magnus, Karl Lorenz, Maren Monsen -  the caretakers of Elisabeth’s archival collection who made it possible to rummage through their library from halfway across the country. You can read more about the collection here. To learn more about Elisabeth and the folks who are furthering her work, you can visit the Elisabeth Kübler-Ross Foundation website here. Support Radiolab by becoming a member today at Radiolab.org/donate.  

Before we start, just want to let you know there's a moment or two of strong language in the story. Oh, wait, you're listening. Okay. All right. Okay. All right. You're listening to Radio Lab.

Radio Lab. From WNYC. Hey, I'm off. Hey. Hey, I'm Chad Abumrod, and I'm Lathafnasser. This is Radio Lab, and today we have the story of a journey. You could call it, it's sort of the journey, really. Because it's the journey, because it's all of our journey. So the journey we're all on at some point. Yes, and the person who is gonna take us on that journey today, you're on your own after this,

but today is our very own producer, Rachel Kusik. 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. Createting 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 shit. Now that's magic. As easy as one, two, three, simply dip, dab, and draw. It was this little foam brush that you could swipe across these six wheels of colors, Stock Dicorios, and then you could paint rainbow dragonflies and rainbow bicycles and rainbow palm trees, and amazingly. With rainbow art, look, no splatter, no drips, and the colors dry instantly.

Amazing! The colors never blend into each other. I begged for that art kit for months, and eventually eventually from my birthday. I got one. I remember painting with that thing for hours twirling the foam brush across the blank page into circles and butterflies and butterflies made of circles each swipe this perfect tidy little rainbow of colors and those pictures they were cards really. I would tape them to the bed frame where my mom slept while she recovered from chemo, while

she was put in hospice, and when she eventually died, when I was six. After she died, I don't remember seeing her body. I don't remember crying. I don't remember any of the eulogies, and I don't remember what we had for dinner that first night, that her seat at the table was officially empty. But I do know that we weren't supposed to talk about the sadness of that empty chair. And during those years, I really remember sitting at our dinner table, looking around at my older siblings and the grownups 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 little sister looking up to everybody, it looked like they had figured out how to handle this thing that had happened to us. And I tried to act normal too, but this mess inside me would snowball. Like I would sneak cookies in my pockets and binge eat them until it hurt. And I would slam doors and burst into tears so easily. Just felt like I spent my childhood fighting off these feelings and failing and fighting and failing and thinking there must be something wrong with me.

But then one day when I was older in my late teens I think I finally found what I thought was a way out. Grief often comes in five stages. I'm not sure when or how exactly I came across it, but- You're gonna 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, then stage two, then bargaining, after that is 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 anger always came back and the feelings they just kept coming at the wrong times and repeating. And I felt like I should have been over this. Like it was exhausting. And like it felt like when it came to grief, I just couldn't do anything right. The stages, they became these like supermodel tight gene 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? Like, and I remember like the night, I felt like I was like interrogating Google. I was like, who gave me the stage?

Like I want to, I want to strangle them. 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. In my head, I'm picturing like this slicked back, sleazy car salesman with like a greeting 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 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. I didn't even like, wait. I was like, I kind of want to borrow that shirt. I'm like, I was feeling so complicated. I remember staring at it for a few minutes, just thinking, who is she?

So the daisie 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 ad 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 whose 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. Take us on the journey. Take it. Yeah, let's go. Let's do it. Okay. So Elizabeth died back in 2004, but I called the photographer of that easy photo.

Hi, my name is Ken Ross. I'm the son of Elizabeth Koola Ross and I'm also the president of the Elizabeth Koola 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

a cover of People Magazine, or especially when she's on Cover Playboy, you know, I think she was on Cover Playboy. Yeah, I mean, not obviously, you know, her picture, but not a centerfold. So let me back up just a little bit and tell you how Elizabeth Kubla Ross became the face of dying She was born in Switzerland in Zork in 1926 and she was the first of triplets And so I grew up being very famous. That's Elizabeth by the way

We had big billboard. 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 everyone in their world couldn't tell them apart. I cannot remember anybody who knew that I was me. We were the famous triplets. And so it really set this thing off in my mother that she had to find her own voice.

And so as she grew up, she kind of became the rebel of the family. My father was a very serious returner. He told you what do you want in a restaurant, what do you eat, when to come home. Everything was his control and I said no thank you. So I left home. She joined a peace group the day the war ended. World War II, she would have been 19 years old. And all the way to Russia and back. In all these warped-for-in 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. My soon to be dad. My name's Manny. He was from Brooklyn. They fall her husband. My soon to be dad. Name's Manny. He was from Brooklyn. They fell in love.

My parents got married. She 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 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, or leave. She would sit on the corner of the bed with a patient and she would hold her hand. And oftentimes she'd be a witness to death. When somebody's 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. 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 on 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. They were like, we don't know what to do. Never stuck. But Elizabeth was just They were like, we don't know what to do. Never stuck. But Elizabeth was just like, well, I don't want you to just go talk to someone who's dying. And this seemed very simple,

since I was a physician at the hospital, I volunteered to get such a patient. 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, every ward that there was no dying patients. In this big, big hospital, there was no dying patient.

Nobody. 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. So she always had these Hawaiian Aloha shirts on. She had her burgundy socks. Tiny little woman walking down these long hallways

with green tiles, shiny floors, and bad lighting. So my mother walked with few rooms, and okay, they got 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. He was 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 breathing eyes. I heard him say, please sit down now. I saw his arms stretched out, really an open welcome to sit down now. But Elizabeth, she's like, no, no, no, no, no, I'm sorry, we need to have the students here. 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 be found, my first patient, to interview

him in front of my students. And I walked out and I said, very grateful to him, I am going to see you tomorrow at 1 o'clock. Tomorrow at 1 o'clock came, I went in there with my four students terribly proud that I had a patient. The patient was 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 today before when I left and he said thank you for trying anyway and he died about half an hour later. We will never able to listen to him.

We didn't hear what he really wanted to share with another guilty 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 ever-to-life conservation rather than life destruction? We were waging a war and the enemy was... Cancer. ...and smallpox. Dipperia. Dipperia. Hoping caught.

And at this moment in time, we finally had some... ...chirms, vaccines. had some weapons in our arsenal. In the army we recruited for this war on death, the soldiers of the treatment front were, of course, the doctors. And in the seat 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 diagnosis was. And 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 family's told 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 at my doctor don't want to talk about it. So everybody plays a kind of a conspiracy of silence. I get it on some level because the Hippocratic oath is, if you push it all the way, it's like you don't do harm, right? You don't do anything to hurt the patient. Death is a failure, and so 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 active 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 back sides of the 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 to stone rolling. Suddenly she needed to find out like what did the dying want to tell us. What kind of fears found this is turmoil they go through? What kind of hopes and expectations perhaps they wish to share? And she just decided, like, I'm gonna 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 see if we can listen to them as long as they allow us to sit in this room. She would just start going to these rooms and, you know, nurses try to kick her out, doctors try to kick her out. They took an average of 10 hours searching for a doctor who gave us permission to see one single case. 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 a Elizabeth research assistant.

There were four research fellows. I was only one of them. Elizabeth's team would just start going into people's rooms, saying, we want to talk to you about dying. You know, if they said yes, I said, okay, then I would just start wheeling it through the car doors 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, need to aid 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 stuff, anyone in the hospital who wanted to come and hear these voices. Which the patient is fully aware, naturally, that it's the pre-colding 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? My goal 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. 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 that.

I think I have had a very good life for 30. 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. 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. 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? Oh, it's really very personal, but I just say I 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 chapel in the middle of the night, and there was no night chapel. I mean, this is just unbelievable to me, unbelievable, I mean, this is just unbelievable to me. Unbelievable. Because when does a man need a chapel? Only at night, believing.

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 chapel. And if you were to show a chart, you 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 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's the 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. But 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 misbeade. My sister's only come once a week, and sometimes they don't come at all.

I made 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 lonely and I just 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 so 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 coldest names. We were called, what you call a ralt shirt. If you can imagine, I mean, doctors were literally spit on our in the hallways, lever nasty notes in a room, and they're 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, we were on the heels of two world wars, 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.

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 he 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 night, the clicking would start. And she was dancing with two fingers. I remember the... You know, and he was dancing with two fingers. I remember that, like, like, like, like, like, like.

You know, 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 the school were going to die.

They exploded. You know, I was traveling with her all over the world. I think I went to 1920 different countries with her. Go outside and it's like a lion, you know, down around the block. And it's like, wow, she's sold out the Sydney Town Hall three nights in a row, 2000 people, 5000 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. I'm imagining all these these young kids in this street is going like the people

What struck me was one of the neurologists man I'm great esteem for We're standing on his tiptoes and the third line at the back. You know, it's like seeing Jesus carrying up 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's Deak at one of those early lectures. She was remarkable. Even though it was like a rock haul on the outside, on the inside of the seminars, things were intimate. I think she did bother her.

She wouldn't stand behind the podium. She chose to sit on the electric table, swing her legs back and forth. She would just talk. 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? Honest, gap here. At one point, she was recalling a discussion with somebody and she said, and thought he was saying when I heard that. And a young guy sitting close to me answered the question. He said he was afraid. Did you come in peppy? Did you come in and actually function? He was afraid. Because you come in peppy, that you come in and actually function.

He was afraid. Because you're going to rub in all the things that is in the process of losing. 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, Elizabeth would talk about the 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's sort of used them to organize her talks. 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 it 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 Desin Nying. I did not understand. Huh, which I did.

I just had to take my retainer out for reading this. I'd read it every night before bed. So yeah, there's like how many chapters? Oh my god, I'm so bad with Roman numerals. One, two, three, four, five, six, seven, eight, nine, 10, 11, 12. Twelve chapters, only five stages. And the stages really just serve as these chapter headers. It 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 we'll last for different periods of time. And 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 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.

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,

it is hoped that it will encourage others not to shy away from the hopelessly sick, but you 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 above. So if we help them be angry and help them be sad and let them express it in crying, not say say your man

It's not meant 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 is human beings Is to just sit there and listen to it as it's coming up It's for you. If you feel like screaming, you scream. If you like crying, you cry. Don't try to follow a textbook or have somebody else tell you what to do. Trust yourself. You're all natural emotions. Like when I read it, I just 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 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 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. 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 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's mother. And so when you get to the end of this episode, you are gonna 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-Rosses' story.

Hello, this is Erin Scornian, currently located in Arlington, Texas. The radio lab 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.flown.org Science reporting on Radio Lab is supported in part by Science Sandbox, a Simon's Foundation initiative dedicated to engaging everyone with the process of science. Okay, here we go. Ah! Alright.

Chad, Blatif, Radio Lab, and Rachel Qsick. 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 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. Elizabeth had some other realities. Elizabeth's former assistant, Dennis Klas 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 Mr. Schwartz wrote it down and she signed Mr. Schwartz. Is it one of those, like, where you write a letter, knowing it's going to be delivered after your death or just...

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 Mr. Schwartz, but with names like Mario and Willie The only one I remember her mentioned

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. Don't you, my friend? And Tom, it's a France.

France, there's a faculty member at the University of Buffalo. Hello, hello. I'm just going to let these two guys tell it. Don Chumacher. 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 Hospice and tell you of care organization. Both these guys spent their lives working and dying in grief and they both got into this work because of Elizabeth. They really changed my career dramatically meeting her.

Oh, absolutely. For me, life changing. They both went to Elizabeth dramatically meeting her. Oh, absolutely. For me, life-changing. They both went to Elizabeth's lectures after the book came out. You were all enamored of her and thought she was fantastic. Then they kept going to these talks, Don and Tom and five of their friends. They started calling themselves the Buffalo 7. And they were Elizabeth's biggest fans until… A little bit eventually got fired from the hospital in Chicago. For reasons that are kinda unclear, but after that she bought some land out in Southern California so she could start a healing center. She called it

which means final home of peace and I've heard from numerous people this 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 Shantina, L.I.A. 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. Very large room, like a cafeteria room. With a couple dozen other people there. So we all sat and chairs around the edge. 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 live with a savor saw. 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 we were told that we would be approached by our spirit guide and entity are soulmate in this

experience. Which is human form and be created and speak to you? A moment later, Don says, your spirit guide approached you. It was just black. But Tom says you could tell that a person, like an actual person was standing there. Human beings seem to be there.

And that spirit guide would lead them into another room. Like a classic, because it was very small, they needed to be isolated and free of all other human contact during this time. We were told. 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 could absolutely feel them 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're like you were hugging them In Tom and on's case their spirit guide was clearly a woman and she had no clothes on and It wasn't quite sexual. Wait, but you hug 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. What 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 dark room for?

I would say two hours, the lights came on and I just know that it stopped. Oh, good. 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. So it was hard.

It was hard to go through. And it got worse. Like fairly soon after Elizabeth opened Shantina Laya, the man who ran these darkroom sessions, this guy named Jay Barham was accused by numerous people of engaging in sexual misconduct in these darkroom sessions, this guy named Jay Barham, was accused by numerous people of engaging in sexual misconduct in these darkrooms. 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 a financial. Yeah. Yeah. And that, more than that, the list that was being taken advantage of. A lot of people, I talked to you about about this said that they don't think Elizabeth really knew what was going on, that she was manipulative by J and just like everybody else. But I don't know, 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 Lama. Oh, damn.

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. Elizabeth Kubla 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 Latin, and I'm a journalist. So yeah, I wrote an article about Elizabeth Kubla Ross, which appeared on the front page of the San Francisco Chronicle on May 31, 1997. Expert on death faces her own. The whole world wanted to know

this is the death in Dying Guru and how is she doing 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 getting there. She's sitting in this beige lounger chair.

She was changed smoking and it was done hill cigarette. 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 growtally fielding questions about Did you go through those stages yourself? Which stage of dying she was in? Uh, 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, angry, and I'm raised nothing but anger. 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 Kubla 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 hold. Grief often comes in five stages. Everyone just couldn't stop talking about that. They were everywhere. You're going to go through what we call the five stages of grief from scrubs to the office. According to Elizabeth Kubler, we all move through five distinct stages of grief. Big Bird, don't you remember we told you? To test me, Street.

Mr. Hooper died. Well, I'll give it to him when he comes back. To... Because I'm not dying. The Simpsons. You're a... Even... This may.

There are five stages of grief. 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 him over a grief. And then really just the hardest part to watch for me was just the way she died. She was so hangry 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... Um, can I share my screen with you? Oh, um... yes, hold on. At one point, Ken showed me all these pictures of her from her final years. So there is Elizabeth on Halloween. She's dressed like ET on every Halloween. Oh, when every I started seeing all these colors of that last part of her life, like how

she absolutely loved ET. 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. It shows her 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. We had the triplets all together. Right, yeah. Here she's doing these wheelchair races. It was the big mix-match. 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 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 humaneness and fallibility and accept who she really was. This is Joanne Cachatory 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, but she loved Costco. She loved Costco? I love it after my own heart. She loves shopping. She loves Costco. She loves Costco? I love it 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 ten 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, she would, she would go, oh, she would be outraged. She would just share my outrage and I felt, you know,

seeing and heard and she was one of the few people, you know, in the world of 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 that was congruent with the depth of breath 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 kubaraz for dying in a messy way when she was always trying to help us understand that messes are natural and that's okay and that's just part of the deal. That's B.J. Miller. He's a hospice and palliative care doctor. She just was, sounds like she was 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. Just be you, if you feel like screaming, you scream, if you like crying, you cry, don't cry to follow a textbook. And on Tuesday, August 24, 2004, Elizabeth 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 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 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 this man.

Alright, okay, so I'm gonna hang up on the phone. And you're still here. Okay, great. His name is Tom Riley. I'm 54 year old, a father of three, and I have stage four pancreatic cancer. A very, very serious form of cancer he's dying from. So, yeah, the time frame, I think, is like 20 months. 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. 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.

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, but we could do another one of these. Yeah, I was just going to ask you that because after that first call, we just kept talking again. Hey, Rachel, it's Tom. How are you?

Good. How are you? I'm doing okay. I had a cat scan this morning. So how did it go? And again, this time, we're really down Thursdays are always good for. Hello. Hi, Tom. This is Rachel. And again, not really knowing why, but the two of us just kept feeling this poll to keep calling. Hello, Tom, rally. This is and to keep answering hey, we're so 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 I'm this is my last question. I promise I'm really taking a lot of rest of the afternoon

I really enjoyed this because Tom how to feel like we're on this journey together So I kind of do too. I too, I feel so presumptuous of me. I mean, I didn't know what... I felt weird even saying it. Yes, I feel. 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 gonna even make it past Halloween, was, oh God, I'm not even gonna get to see the election. And that was actually, you know, probably in the top 10 things that I thought of in the first hours of kind of facing it was like, I want to see what the next iPhone looks like. And can you tell me the bad of chemo?

Physically, what is that like? 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. Boredom is not a word that I would have 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, show it 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 outlive myself on some level. What does that mean? What do you mean you're out living yourself?

And we'll make jokes about playing the C-card because, you know, we were trying to get a raise, a reservation at something, and I'm like, tell them your dad has a stage 4 cancer and at some times it actually works. Hey, if you got it flunted man, it has to be good for something. Well, yeah, 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 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 I'm spending too much time trying to teach them. 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 don't really know how to do it. You know, of course I do. You guys don't even know how the T-Fell works. You know, I'm gonna teach you everything. Ha ha ha ha. When, 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, but 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 my walk 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 were gonna be okay. Cause they were out and they were having fun and they were laughing and I just, sorry, don't apologize. Hey, hey, hey, like a flash forward to seeing them doing that, you know, a year from now, two years from not whatever, and it just made me feel great and then it made me feel sad. And that was easy to understand because that was they're going to do great and you're not 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. It felt like letting out this breath I'd been holding my whole life. And this thing Elizabeth trying 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 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. No, I think about, I think about you sometimes. I'm glad we met. I am too grateful to the many and I mean many people who help me put this story together. Like so many, I actually can't fit them all here, but their names are on our website. Go check that out. And I just want to send an extra special thank you to Martha Twaddle, who connected me with

Tom, Kryn Liang, who made all my montage dreams come true for this episode, and to Soren Wheeler for telling me to look up to that lady who created those dance stages of grief and pat Walters who received more middle of the night Elizabeth Van Graal updates than any human being should have to endure. And of course, thanks to you, Rachel Kusik, who we should say, like single-handedly reported and produced this piece. As I mentioned before the break, you probably want to hear more from Rachel right now.

And to be able to do that, you can 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 two day where you can hear Rachel talking with her grandmother. I always wondered what it was like for me to be working on a 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 undefined dining book, and she gave me this look like holy shit like you're really just out there doing that.

And I wonder like what you feel about it is it is it weird or the comforting like what does that feel like for you? No, I don't I thought it was something you needed to do. I just that this was your way of of your way 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.

Go check it out. Just search for a desk of money, wherever you get your podcast. What's it called Rachel? It's called when grief doesn't move in stages. I'm Letha Fnasser. I'm Chad Abumrod. Thank you for listening. Yeah Radio Lab was created by Jad, a boom rod and is edited by Soren Wheeler. Lulumiller and Latif Nasir are co-hosts. Suzy Electrenberg is our executive producer. Dylan Keefe is our director of sound design. Our staff includes Simon Adler, Jeremy Bloom, Becca Bressler, Rachel Kusik, David Gable, Maria Paz Gutierrez, Sindo Nyanasambandam, Matt Kielte, Annie McEwen, Alex Niesen, Sarah Kari,

Ariane Weck, Pat Walters, and Molly Webster. With help from Shima Oliayi, Sarah Sandbach, Kareen Leone, and Candice Wong, our fact checkers, our Diane Kelly, and Emily Krieger.