The Queen of Dying

Before we start, I just want to let you know there's a moment or two of strong language in the story. Oh, wait, you're listening to RadioLab from WNYC. Hey, I'm Jada Boon-Rott, and I'm Lata Knasser. This is RadioLab, and today we have the story of a journey, you can call it.

Yes, sort of the journey, really, because it's all of our journeys, the 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 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. Create amazing drawings and works of art instantly. Whenever that commercial came on, I lost my shit.

Now that magic has easiest one, two, three, simply dip, dab, and draw. It was this little foam brush that you could swipe across these six wheels of colors, stack 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 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 at that first night that her seat at the table was officially empty. But I do know that we weren't supposed to talk about the sadness of that empty chair.

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

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

Anger. Then bargaining. Bargaining. 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 is 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.

I just couldn't fit into. And I was finally just like, fuck this. Yeah. Like, who the hell sold me this crock 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 strangle them.

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 a slicked back, sleazy car salesman with like a grinning smile and like self-help-eat Dracula-caped monster. But when I go over 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 feel 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, OK, I'm curious. And so I started digging around. Problem is, there's endless crap about the stages, but not really any one place where you can go to learn about Elizabeth and her story. So I ended up on this very journey that's taken over my life for the past year.

I spent my days and nights taking 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's single-handedly changed the way that we all face dying. And the way that we all deal with being left behind. Well, all right.

OK, OK. Take us on the journey. Yeah, let's go. Let's do it.

OK, so Elizabeth died back in 2004, but I called the photographer of that A.Z. photo. Hi, my name is Ken Ross. I'm the son of Elizabeth Koolaross.

And I'm also the president of the Elizabeth Koolaross 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 saw the cover of People magazine or especially when she was on cover Playboy. You know, things. You know that cover Playboy.

Yeah, I mean, not honestly, you know her picture. Not a centerfold. So let me back up just a little bit and tell you how Elizabeth Koolaross became the face of dying. She was born in Switzerland in Zurich 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 billboards.

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. I cannot remember anybody who knew that I was me. We were the famous triplets.

And so, you know, it really set this thing off in my mother that she had to find her own voice. And she grew up. She kind of became the rebel of the family. My father was a very authoritarian Swiss.

You know, he told you what the world ran a restaurant, what to eat, where 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, what, 19 years old? I went all the way to Russia and back.

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 at a good hour when she meets her husband. My son 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'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 to leave. She would sit on the corner of the bed with a patient and she'd 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 left 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. And actually, 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 big skies as 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 like, why don't we just go talk to someone who's dying. And this seemed very simple.

And 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, 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 and low-hashers on. She had her burgundy stocks. Tiny little women walking down these long hallways with green tiles, shiny floors, and bad lighting. So my mother walked to a few rooms and OK, they're in a broken leg.

They got this thing at 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. And 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, just if you 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. I saw his arms stretched out really an open welcome to sit down now. But Elizabeth, she's like, 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 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 it tomorrow at one o'clock. The moment one o'clock came. I went in there with my four students, terribly glad that they had the patient. The patient was a lot of pillows in Oxford's tent, and he could hardly breathe until he looked at that with the same kind of pitiful looks 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.

At this moment, I 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, and smallpox. And at this moment in time, we finally had some weapons in our arsenal.

And the army we recruited for this war on death were, of course, the doctors. 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 doctors didn't even tell patients what their diagnoses were.

In the mid-1960s, I've heard that doctors did not tell their patients they were dying of cancer. They would say, well, there's a spot on the x-ray. We're doing more tests. 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 doctors don't want to talk about it. So everybody plays 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 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 are actually dying and really the people themselves got pushed aside.

All the dying people were at the back sides of the hospitals, floors people didn't use much. Wait, is that really something that happened? Oh, absolutely. Yeah.

So the medical staff didn't even want to see them or walk by the room to be reminded that they have dying patients. Oh, 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 stonewalling suddenly she needed to find out like what did the dying want to tell us? What kind of fears, fantasies, turmoil they go through? What kind of hoax 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, please, and listen to them as long as they allow us to sit and listen. They would just start going to his 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 patient.

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 Glass, 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 you about dying. You know, they said, yes, I said, okay.

Then I would just start wheeling it through the corridors down to the seminar room. The patient would come in. There's a smaller room where Elizabeth and a chaplain often came to be able to like need 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 deeply closed and the audience who he cannot see and hear, but they can see and hear us. And then Elizabeth would start asking questions.

Does that mean anything special to you? Like all of my type of social concepts that looked like a... I don't know, I 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's what I've had. I think I have had a very good life for 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 it can happen to me? Yeah. Well, I can die.

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? 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 say I can 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 the chapel in the middle of the night, and it was no night chapel. 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, then 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, were the fact that he was dying. And the answer comes right back.

He pureed your not 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 is nobody cares.

I have thought of the worthlessness. And 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 sister's only come once a week. 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 know you wouldn't be alone.

Why do you think lonely and 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 a torture that pink 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 Gautini 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 cold as names. We were called...would you call it vultures?

If you can imagine, I mean, doctors are literally spit on our in-the- hallways, leaver 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 the seminars and... Eventually, the hospital head would 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.

Suicide pilots are Okinawa. And then the Korean were. And by the time Elizabeth moved to Chicago, the war in Vietnam had been rumbling for years at this point. Many of your powers left you that day.

Over 600,000 Americans killed for more 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 10-30 night, the clicking one starts. The painting was acting with two fingers. I remember that.

Click, click, click, click, click. You know, she'd have her coffee and cigarettes. Probably some Swiss chocolate. And then in 1969, she published this book.

After 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, I 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 found with her all over the world. I think I went to 19, 20 different countries with her. Go outside and it's like, a lion down around the block.

And it's like, wow, she sold out the Sydney Town Hall three nights in a row. Two thousand people, five thousand people. And she was getting stopped in airport bathrooms. And people were slipping her books under the stalls to autograph.

She was like a fucking rolling stones, man. Like people rolled out the carpets for her. I'm imagining all these young kids in the streets going, like, like, I'm so crying. Was one of the neurologists, man.

I had great esteem for standing on his tiptoes. And the third line at the back, you know, it's like seeing garbage. You know, I mean, I couldn't believe what I would see. That's Belfer 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 the seminars, things were intimate.

I think he 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 with the horrible question that we're all afraid of.

And that never happens. But the patient looks at you and says, am I going to die? But when she started speaking in that little soft voice, she could have an audience in the palm of her hand for the next 45 minutes. 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 with a nasty, unpleasant, mean patient?

What do you do? Honest, gapriety. 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. That you come in pippy. That you come in and actually function. He was afraid.

Because you're going to rob him. All the things that he's in the course of the closing. 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.

Sort of use 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, it's 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 tiny 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. I love having a son.

Which I did. I just had to take my retainer out for reading this. I'd read it every night before bed. So yeah, there's like how many chapters.

Oh my god, I'm so bad with Roman numerals. One, two, three, four, five, six, seven, eight, nine, 10, 11, 12, 12 chapters. Only five stages. And the stages really just serve as these chapter headers.

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 will 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'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's 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'll 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 you do not come, 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 up. So if you help them be angry, help them be sad, and let them express it and cry, and not say, you're a man, it's not a man, it's too 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 just to just sit there and listen to it as it's coming up. It's just me, you feel like screaming is screaming. You feel like crying is crying.

Don't die before that textbook. Or have somebody else tell you what to do. Trust yourself, you're all natural emotions. Like when I read it, I shot up in bed.

Cause I was like, oh my God, this is it, this book. It wasn't meant for me. It was meant for my mom. And like she never let herself feel those things.

I think it was cause she was just trying to fight it for so long and be there for us. And like death wasn't an option for her, but it was like the only thing. And so when she 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 of 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' story. Hello, this is Aaron Sportnack, currently located in Arlington, Texas.

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Ah, all right. Jad, blood diff, radio lab, and you good? Rachel, Q-Sick. So we are talking about Elizabeth Kubler-Ross.

This woman and 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 reality. Elizabeth's former assistant, Dennis Klast, told me.

Did you read about Mr. Schwartz? No, who's that? Well, I did not regret Mrs.

Schwartz for the seminar, but somebody did. Dennis said Mrs. Schwartz was one of Elizabeth's patients, but then one day. Mrs.

Schwartz approved 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. 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, were you right, a letter knowing it's gonna be delivered after your death?

No, no. Elizabeth told Dennis that he had received a letter from a dead lady. And Elizabeth sung tens that 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 talked 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 ended up taking her to a very dark place. Hello, hello.

I'm just gonna let these two guys tell it. John Tumacher. And Tom Tefrence. Franz, I was a faculty member at the University of Buffalo.

My most recent job was at the president of the National Hospital in Palliative Care Organization. Both these guys spent their lives working and dying in grief. And they both got into this work because of Elizabeth. They changed my career dramatically meeting her.

Oh, absolutely. For me, life changing. They both went to Elizabeth's lectures after the book came out. They were all in Alberta for her and thought she was fantastic.

And they kept going to these talks. Don and Tom and five of their friends. They started calling themselves the Buffalo Seven. Which I thought was the result of groupies.

And they were Elizabeth's biggest fans until... Shot in the lie. 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, which means final home of peace. And I've heard from numerous people at the center. They kind of look 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 Chantin, Alaya. This was a little period. 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 long room, like a cafeteria room. With a couple of dozen other people there.

We all sat in tears around the edge. And then the lights were turned down. And it just got stranger and stranger and stranger. It really did.

People who are my sunshine was a little bit of a favorite song. We sang it out 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. And then we were told that we would be a prospeller spirit guide. And entity are soulmate in this experience.

With human form and be created and speak to you. A moment later, Don says, your spirit guide approached you. It was pitch black. But Tom says he 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. Black and classic are 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 Sodor? You couldn't see them. But you couldn't see them. But you could feel them because you could absolutely feel them.

Wait, what does that mean? I'm just like you were like up close to them. Oh, oh no, you're 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 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. Do you remember thinking like what's going on here as it was happening? Oh, yeah. I didn't know what to expect.

You've been over. Sure. What was going to go on? How long were you in the dark room for?

I would say I like to come on and I just know that it stops. Oh, God. 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 Openshantilaya, the man who ran these dark room sessions, this guy named Jay Barham was accused by numerous people of engaging in sexual misconduct in these dark rooms. 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 just made I think when we got out of there that we had been taking advantage of. Did you have to pay to go? I don't think so, but I don't recall.

So when you say take an advantage of it's more like emotionally and psychologically not like financially. Yeah. Yeah. And more than that, that Elizabeth was being taken.

A lot of people I talked to you about this said that they don't think Elizabeth really knew what was going on that she was manipulated by Jay 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 llama. Oh, damn. And then eventually her house mysteriously burnt 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 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 Latin, and I'm a journalist. So yeah, I read an article about Elizabeth Kubler-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 and dying guru. And how is she dealing with it personally?

I went out to Arizona to talk to her and found out that she's not so keen on dying right now. She 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 lounge or chair. She was chain smoking and was done hill-sickering. 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! That was angry, angry, angry, angry, angry. So no denial for you.

No, are you kidding? No. No denial. It was this massive train rack of a story people couldn't go away from.

Like, Elizabeth Kubleras, the queen of dying, couldn't die and piece 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- Which are denial? The office. According to Elizabeth Kubleras.

We all moved through five distinct stages of grief. Big bird, don't you remember what we told you? To test me, Street. To Mr.

Who will die. I'll give it to him when he comes back. To the Simpsons. When you were out.

That's me. 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 them over a 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. Oh my gosh.

Showed me all these pictures of her from her final years. So there is Elizabeth on Halloween. She's dressed like E.T. on every Halloween.

Oh, 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. But that was like her little hello.

So here's my mother with her finger again. Oh, she also 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 the wheelchair races. It's the 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 I, the articles you read that she was angry or she was depressed. But like you 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 Kachidori who is 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 little bit 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 go, oh, she would be outraged. She would just share my outrage. And I felt, you know, seeing it hurt. And she was a 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, you know, 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 Beauty Miller. He's a hospice and palliative care doctor.

She just was sound like she was taking her own medicine and letting it rip, letting it fly. Like that mix of rage and joy, sadness and brevity and shouting and listening, that mudside of emotions. That was her final stem in our for us. It's just me you if you feel like screaming and screaming, if you like crying, you cry.

Don't try to follow textbook. And on Tuesday, August 24th, 2004, Elizabeth died. I've been thinking a lot about how, why I really like the 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 active 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.