Ken Ross on the life and work of his mother Elisabeth Kubler-Ross

All right, now I just got to make sure I see us on Facebook because we're in tender hearts and we're on Facebook, so we're in a few groups.

I'm glad you're in charge today.

I know it's a scary thing. All right. I actually see us in both places. So anyone who's joining us, say hello. Tell us where you're from. I'm so glad you're here. I got to make sure my sound is out so I don't hear us in more places than I care to.

Hello, Toronto.

Gotcha. People from all over will, I hope, be coming on. Let's see. Yes. Oh, in the chat, right. I see Denver, San Francisco. Wonderful. Rita from the Bay Area. So, Ken, here's the challenge. Let's see if anyone puts up a place you haven't been.

Because Ken is one of the most well traveled people I know in the world. So I would be surprised.

Be the world before you leave it.

How many countries have you been in?

I'm up to 101 now, and I'm going to keep on going until I drop.

It's pretty impressive. It's impressive. I'm going to give everyone just a few minutes to come on.

All right.

Hi, everyone. Coming on. Michelle's here. Sean, Mary Campbell from upstate New York. Welcome, everyone. I do a little thing, Ken. I don't know if you're old enough to remember there was a thing called Romper Room where the teacher would pretend she saw people through the tv.

All right. I'm only, I think, one year younger than you, by the way.

Oh, okay.

I don't know.

I might debate that with you, but we can figure that out. All right, let's see. Lisa's here from Grand Rapids, Michigan. Teresa's from New Jersey. Welcome, all. So glad you're here. Keddie's from Puerto Rico. Hi, Keddie. Nice to see you. Wonderful. I'm sure we'll get some Australian soon. Theresa's here. It's late in the UK but not too late. All right, Jackie and John are on. Welcome. Connecticut's here. Great. All right, as we always do, let's just begin with a moment of silence to honor those who are no longer here with us. And today, Ken, I'm going to be thinking of your mother and sending her love and gratitude for you to be here. So join all of us in a moment of silence, please.

Thank you so much for doing that. All right, see who's all found their way on here. Becky's here. And Stephanie and Jennifer. Welcome. Glad you're all here. Tampa. Very, very nice. All right, so let's begin. Hi, everyone. I'm David Kessler, and this is a number of my groups on right now. And we're in Tender Hearts. We're in Facebook. This Facebook. If you're watching it, through here was started after Covid to really help us connect virtually in a time where we were all feeling so isolated. And there have been so many wonderful guests who have joined us to volunteer their time. And today, another wonderful guest that I am really excited about and have been trying to get for a long time, Ken Ross is here. Hi, Ken. Good to see you.

Hello, David. I'm glad we're color coordinated today.

We are. We are. So Ken Ross is a number of things. He is a photographer. And I would imagine those are some of your shots behind you.

They are indeed. We've got India, Papua New Guinea, Japan. Where else back there? New Zealand. I see Cambodia, a few places.

I'll get into that. And Ken, besides being an amazing photographer, is also the son of Elizabeth Kubler Ross and the head of the Elisabeth Kubler Ross Foundation. So we have a lot to talk about today just in terms of your portraits, your photographs. One of my wonderful memories I have. And it's too bad. It was like before cameras and cell phone days. I remember getting ready to get on a flight to see your mother and being at lax, the airport. And here's this gigantic photograph of yours on the wall. And I was so excited to see it. But my excitement wasn't topped, was only topped by your mother's excitement to hear that your photograph was there.

It was my biggest fan.

So a very talented, talented, extraordinary photographer. So, Ken, why don't you just start by telling us a bit about you, about your mother. I have lots of questions, lots to talk about, but let's just begin with you.

Well, how many days do we have?

I know, I know.

Not me. So. But, you know, my mom is interesting because, you know, at heart, as you know, she was basically like a Swiss hillbilly. Like, right, it's like Green Acres. I mean, she was this, like, Swiss girl from the countryside brought into America, and she was kind of lost, but, you know, she wasn't going to change her ways. So, you know, she was always very headstrong. And she really didn't like that word. No, that was like, not a good word for my mom. So I grew up with a mom who basically had no rules right in the house. As long as you were polite, went to school, got decent grades, you could basically do anything I could have parties with 300 people. I could stay up and watch Johnny Carson in third grade. I mean, it was a very eclectic upbringing. And we had, you know, two brilliant doctors who knew their stuff, but they were very opposite. So you could say, you know, in some ways I was conflicted because my father did not believe in life after death. Being a Brooklyn Jewish guy and my mother, you know, there was absolutely no question. So at the dinner table, it's this constant discussion of life after death, and my dad's bringing his brains home and leave them in the kitchen where we're eating, you know, Or I had to go to see an officer.

Not quite his brains, but other people's brains in jars. Right?

Well, you know, the ones you brought home.

People don't realize both your parents were doctors, right?

And my father was a neuropathologist. So the guy's a brilliant guy. He was a professor, head of his department. He was the only one in Denver and in Chicago when he started, there was only three. So it was a very rare specialty. And, you know, he studied medicine in a language he didn't speak. I mean, that takes brilliance, right? To go to medical school in Switzerland and not speak German is incredible. So anyway, I grew up, like, kind of conflicted because my parents were kind of on opposite sides and I had no rules and were traveling around the world. And it was a very unusual upbringing. And plus I was very shy. Like I did not talk. So imagine that with a famous mother, you know, so you go to school and your mom's on the COVID of Playboy or National Enquirer. You know, it's very embarrassing and it's pushing you into your non comfortable zone. So, you know, it was pretty weird and challenging, but it was also very exciting because we got a lot of opportunities, got to meet incredible people, famous people do wacky things. You know, people sleep in the pyramids, you know, on New Year's night. Just incredible things all around the world. And, you know, and watching my mother touch so many lives. I think I traveled to about 20 countries with her growing up. So that was an amazing experience to see. One day she's, you know, in Sydney town hall, another day we're in Eskimo villages and then we're off to Japan to go work with people. You know, it was just very eclectic upbringing. So I grew to really embrace diversity, travel, cultural, you know, anything that's interesting and shows us how all our differences kind of bring us together at the same time.

It's, you know, there's so many times people Describe just other people in the world. And the descriptions are like, they're nice, they're lovely, they're sweet. Describing your mother is different than anyone. You know, people always ask me about her and they're like, what was she like? And I would say more honest than you're comfortable being in the presence of. Like, your mother had an honesty that people either appreciated or it pissed them off.

Exactly right. And she didn't realize it, but she was like her father because her father was very much like, I have an opinion he, and this is what's happening. And that served her well because she was, you know, a tiny woman who was like, you know, four, eleven and a half from Switzerland, you know. So for her to change the American establishment of a medical community, you know, was pretty incredible. You have to be very determined and have kind of a naughty side to do that, you know, and she has plowed through like a bull in a china shop.

People really don't understand all that she did. How many books?

Well, we say 24, but there's really more because there's some books that are only in German and some that are kind of taken from other books. So it's kind of hard to say, is that a new book or is it really just a derivative of another book?

You know, how many languages?

41, because I'm Swiss and I'm all about the numbers, so 41. As you know, we just. David and I signed a life lessons in Mongolian recently and we just signed on Death and Dying in Arabic for the first time. It's the first time she's ever been in Arabic. And I love it. That she's in both Arabic and Hebrew with the same book is really incredible, right?

And.

Thousands upon thousands of lectures and.

My goodness, just she. And really, people don't understand. The modern hospice movement and end of life care might not be what it is today. If it wasn't for her that she was a pioneer in that, right?

And you know, it probably would have happened, but it may have taken another 10 or 15 years, so. And my mother did not like waiting, so she was going to get it out there. And now is one of her favorite words.

And I explained to people so many times that, you know, when we talk about Betty Ford, like, I don't think they understand.

The time that she was living in, in the 60s, that it's the way Betty Ford brought addiction out of the darkness, that Michael Landon brought cancer and so many other people talking about it. Death wasn't talked about and your mother really brought it out into the open in the 60s.

Right. Some people had tried before. A lot of people don't realize there's other books about death and dying. So I just happen to have, you know, I don't know if, you know, this book. This was like the death and dying of the 1950s. Right. So, you know, Herman Feifel did a great job, but, you know, it made some waves in academic world, but not really with the public. And then again, 1965, we have this book, very important book, talks about death and dying. Talks about dying in America is a horrible thing. Came out, you know, four years before on death and dying. But still, it just didn't connect with the public. So what my mother had, which is strange because, you know, here's this woman from Switzerland with this heavy accent. Something about the way she communicated and connected with people. You know, it just blew up between her book and the Life magazine article. You know, she was everywhere. And the phone's ringing. We got a second line, put a secretary in the house. A second, second secretary. You know, the mails got bigger and bigger. They started delivering twice a day and. Yeah, but it was like, you know, nobody talked about death and dying. It was just taboo. I think I read a statistic that 93% of doctors did not tell their patients that they had cancer. You know, oh, I see a spot on the X ray. We're going to look into it more. We're going to do some more tests. They didn't even tell them if they're getting a mastectomy. They didn't tell them that was going to happen. They'd have them sign a release and then they'd wake up with no breast. I mean, the amount of disconnect with the patients was just horrifying. So my mother was disgusted and she wasn't going to have it.

And that's the kind of things that, you know, so many people hear things and go, oh, that's awful. And your mother was the type that was like, that's awful. Let's change it today.

Yeah, it's unacceptable. We're changing it, like now. Like, where's the administrator? Like, if he doesn't like it, I'm just doing it. But, like, you know, I'll ask once, maybe twice, but then I'm just doing it. So I'm not interested in your permission. Like, this is the right thing to do.

So I see we have a guest. One of your cats has appeared.

Oh, yes.

Hopefully one of my dogs does it. My dog doesn't come and chase it, but.

Right. I Got several locked up, so they'll behave.

Okay, so. And with all your mother did.

How she really changed the world in so many ways. We want to reduce her to five words.

Yes.

So you want to talk maybe about those five words?

I know you even got slides for us too.

Yes, I have slides for us today.

So let me share a little presentation, see if it cooperates today. Can you see that, David?

I can't. Not yet.

Okay, let's try that.

Boom, there we go. Now I just think you got to get it on the slideshow and we'll be good.

There we go.

There we go. Wow. Great.

So, just briefly.

So on death and Dying, people define it as, you know, David, by the five stages. But that made my mother insane because she said the book is not about the stages. The book is about patients. It's about reversing the dehumanization of medical care. The book is about hope. It's about listening, it's about bioethics. It's about unconditional love. It's about having the teacher as the patient, you know, making them come first, not the doctor, not the test, not the, you know, none of that, you know, so she said On Death and Dying is about all these different things, but everyone just wants to give it this little neat little package and label. And I think part of that is because the publisher probably arranged the index in a manner that looks like it's just the five stages. Right. I think we're going to pass through this today.

So I want to mention this, actually.

Something very ironic about On Death and Dying that people don't know about is that my mother was a Jungian, but she got her idea for the five stages from Freud. She was friends with Anna Freud. And Anna Freud had this idea around the ego and the mechanisms of defense. And Elizabeth said, hey, you know, I think that's what my patients are going through. This stage model is a great way to describe what, you know, basically is a reaction. It's a defense mechanism. And so people always say, oh, you know, your mother got the stages from Warden, or, you know, all different people. And no, no, no, no, no. She got it from Anna Freud. I mean, she told me directly on several occasions. And you can see there's a loose connection with the five stages here. This is exactly where she got it. Nowhere else.

Something else that's unknown about undeath and dying is that there used to be a 13th chapter. The chapter was about near death experiences, NDEs and. And about life after death. So people think, oh, you know, Elizabeth just Got into this wacky stuff in the 70s. You know, she was living in California, but that's not the case. She was totally into it in the 60s. But even the concept of talking about death was so far out that both her best friend and a publisher begged her to take it out. Because they said, no one's going to take this book seriously and you're not going to sell any books, they'll just think you're a quack. So reluctantly she took it out and unfortunately that chapter has been lost. But obviously she did many books later on about near death experiences and so forth, and they've been some of her biggest sellers. But it's just curious that, you know, people have this misunderstanding that Elizabeth got into this much later.

So. And again, I'd like to mention that, you know, Elizabeth did many books besides on death and dying because people come to me and they say, oh, your mom did that one great book. I'm like, well, you know, she did a lot of great books. And here we have two of the books with you, David. And I'd like to point out that out of the 32 million plus books on Amazon, this book is in the top 10,000 best selling books. That's pretty incredible. This book came out what, 15, 16 years ago now. So, you know, that's amazing accomplishment. Right? And it speaks to, you know, the continuing validity of her work and your work and the importance of this work and how so cross cultural. You know, the message is not just first world, it's not just about how things happen in America. It speaks to everyone around the world. It's very important.

And Ken, before you leave that page.

Yes, sir.

I want to point out how many years since Death and Dying, because it still remains a bestseller also.

Exactly.

So 50.

It is now 51. Wow. And it's usually in the top 25 best selling books on. On grief. But you know, that often includes like one book labeled three times because it's a different version. So like Tuesdays with maury will have three positions in the top 20 or 25 books. So really it's more like in the top three 15 bestsellers after over half a century.

And if you're interested in learning more about Elizabeth from a different viewpoint, these are some books written about Elizabeth. There are some great books here. Some of them I have not had an opportunity to read because they're in Portuguese, French, German. I think there's a book in Flemish, but there are a few books in English. So if you'd like to learn more about her after this Presentation. We encourage you to go see Tea with Elizabeth and some of these other books that are available on Amazon.

Tea with Elizabeth is wonderful.

Yeah, we did that because a lot of people said, oh, you know, I'm so sorry your mom died. I really wanted to get an idea of who she was as a person. So we had 51 people come together and write remembrances of who she was. So we had some great people join us, including Muhammad Ali and wonderful people. We just didn't want famous people, but we got a whole variety of people from going way back in her life and people had worked with her, people who were just friends, neighbors, to give a really complete picture of who she was as a person. And then so besides these 24 books, she did over 100 chapters and books she did forwards and lots of books. She did vet projects, AIDS projects. She started the first prison hospice. You know, she had a working farm, she saw patients, she lectured around the world. And if you can imagine, she basically began her work when she was roughly 40 years old and retired in her 60s. You know, so this woman was just non stop for 25, 30 years. It was just exhausting to watch her go, go, go.

So here we have the five stages as it's kind of portrayed in the media, as you've seen so many times, David. But the fact is, if you look in the book on page 251, you see this is the chart. And back then, it was initially called the stages of dying. So people love to say, no, no, no, it was all about dying. It wasn't about grief. I'm like, you know, Elizabeth was just kind of getting to know the stages when she came out with the book. And I saw between 1968 and in 1974, there was definitely a transition of how she portrayed the stages and she learned more, by the way. David, I've got a note here saying the Facebook link is broken. Do you want to double check that.

The Facebook link is broken? I'm not sure where they get that from, but I'm seeing us on Facebook, so if they miss it, they will be able to.

Find it later because it looks like it's coming up on my end. Okay, but thank you for letting me know.

I think it was a link on that, on that social media post because a couple people wrote me earlier saying they couldn't get on it. And I said, oh, I think you can't get on it until we're live. So.

All right, well, we'll make sure we get them a copy later.

Okay, here's A message. It says, because it's private.

Yeah, it's a private group. They can't get in unless they join. So that's why.

Okay, no problem.

They'll be able to see this later.

Okay. So anyway, going back to the book here, you can see clearly that it says 1, 2, 3, 4, 5 at the top of the page. But clearly there's more than five boxes. So, you know, we have to say, well, why is that? How did that happen? And I'd say, you know, basically, as I see it. And I. I didn't discuss it in depth with my mother, but I certainly had a few talks about it. She said the five stages are basically a shorthand so that people can have a common language with their doctors and begin the discussion. She said, the problem now, now being in 1969, that there's no common language between the doctor and the patient. The doctor is talking about these medical terms. The patient is talking about the human experience, and they don't have a common language, and the patient is having trouble. Hard to, you know, how do they describe what they're going through? And so Elizabeth came up with these stages as a way to have a conversation, break the ice, and also to understand better what they're going through. And what she was really trying to say is that grief is complicated. She wasn't saying that this is exactly what you're going to experience, but she's just demonstrating kind of a common, typical way that one might experience grief. So we see shock, we see preparatory grief, partial denial. We see hope is the biggest stage. But no one ever talks about that when talking about Elizabeth's work with the five stages. Right.

So.

And Elizabeth devoted an entire chapter to hope, and yet that's never mentioned. And I think really, that was kind of a misprint by the publisher because it know, I think that could have been a sixth stage by Elizabeth. But again, you know, Elizabeth wasn't hung up on these stages. She said, this is just to open up the discussion. She said, if you want to do six stages or seven stages or 22 stages, that's great. You know, there's so many different ways to interpret grief, to explain it. You know, she had absolutely no problem. If you wanted to adopt it, adapt it, change it, evolve it, you know, that's great, but the point is, let's get the discussion started. And back in 1969, the discussion had not been started. Right. So here's another chart from my mom. And it talks about hope, and, you know, it talks about different things, and you see it, you know, it's a circle because as Elizabeth said, quite often it's not a linear experience. Right?

And this is another chart. Elizabeth is talking about resolution as part of acceptance, about dreams, about hope, you know, and how is a circle. It overlaps. You can just go back and forth, back and forth. But, you know, people, especially in Western culture and in America, they want these simple answers, right? You know, like, we get calls, hey, my friend's kid died. You know, can I just send her to a camp or something? I want to make her better, you know, and this is kind of the idea that, as I'm sure you've seen, that, you know, we just want to get past grief as quickly as possible, and we don't really understand how to help each other. And, you know, it's not a quick process. It's not a linear process.

So here's a quote I'd like to point from. Point out from On Death and Dying. This is on page 291 of the Electronic version. Just as a patient goes through a stage of anger, the immediate family will experience the same emotional reaction. And then on the same page, the family will go through a phase of preparatory grief just as a dying person. So here you see, she's just beginning to realize that, hey, this is not just for the patient, it's for other people.

In her second book, right here, she's talking about the five stages associated with the loss of sight, right? A defense mechanism. And here she's saying, do not necessarily follow a classical pattern. Most of my patients have exhibited two or three stages simultaneously. Right. This is in 1974. She's talking about this. So. But the thing is, what happened after that is my mom basically went on strike and didn't want to talk about the stages again. Right. She got sick of it. She's like, let's stop talking about the stages. You know, my work is about so much more. And she basically, you know, if you saw her give a lecture, she did not talk about the stages. So what happens after a couple decades, you know, society kind of ran with this and kind of made up things, got stuck on it. And, you know, my mom got frustrated. And so when you came along, you know, you had this idea saying, hey, you know, your stages have been merely misrepresented. People don't understand them. You don't understand your intentions.

Yeah.

Let me tell you.

And that wasn't one conversation. Oh, yeah, that was years that I would go, elizabeth, people are adapting them for grief. And by the way, very poorly.

Yes, exactly.

And I said, at Some point, it would be great for people to hear again from you, because I think you're the only one who will be able to clear it up.

Right. So let's see. 25, 35. So, you know, it was like, what, 35 years? She didn't talk about the stages. When everyone else is saying that's all Elizabeth contributed or talked about, I'm like, no, she didn't talk about them for over three decades. Like, you're the one obsessed with the stages, not Elizabeth. So I just found it, you know, humorous when I hear this. Elizabeth was so obsessed with the stages, I'm like, no, quite the opposite. So when you came along, I was like, this is great, because this guy totally gets it. You know, I would love to see David and Elizabeth do a book together and return to this thing that she's been avoiding. And so it was really a blessing when you came along and did this book to further explain the stages. So we really appreciate what you've done for that.

And that was the book on grief and grieving that we were able to do that revisit.

So, yeah, very important book and really kind of outline things, straightened out misconceptions, and you did a great job, and we're definitely very grateful for that.

So we. Let's see if this works. Today I have a tape of my mother talking in 1972. It doesn't always work, but let's see if it works.

Today we are presenting here a collection of tapes, including the lessons we learned from dying patients whom we asked explicitly to be our teachers. The first part contains some of the highlights of what these patients taught us, us, meaning the members of the helping profession. It will describe the stages the patients and their families will go through from the beginning of a potential terminal illness to their actual death.

So there, like the patients and their families. Right. You know, so Elizabeth is clearly saying that on tape in her books. But, you know, she was fed up with the whole thing, and so she kind of just like, cut it off. Like, okay, I don't want to talk about it anymore. So, you know, when you came along, this was a great thing. So. But, yeah, she did realize that. And then she kind of let it go, which, you know, my mother didn't care about the media and her reputation. She just wanted to do her work. And so sometimes I came back to bite her. So not too long ago, I went online and just looked up criticisms of the five stages.

And here were some of the ones that showed up on the first page. And, you know, here we focus on their fixed sequence, smooth and predictable path, their proper order. There's no stages. Well, you know, as you know, David, this is what. Well, you say, this is what my mom said. This is what the foundation say. But somehow, you know, it gets lost in translation in the media, right? So here we have some quotes by both you and mom. You know, everyone's grief is unique. Not everyone goes through all of the stages. You know, I mean, you guys have said it a thousand times, five thousand times, but for some reason, it's just a challenge with the media. So they have their own version. It fits into a nice little package, and that's how they like it.

So since the stages have come out, there's one thing I find really fascinating is that really, in the last 10 years, it's really been picked up by popular media. So here's just a list of 60 of over 100 musicians who've written songs or albums about the stages or. Or my mother, right? And there's even a couple bands named after my mother. There's two bands, I think, in Scotland and Sweden named Kubler Ross.

So, you know, these stages, as you know, have taken hold of not only culture, you know, but popular media, entertainment. You know, they're on greeting cards, they're in TV shows. Everywhere you go, that's how they describe grief, which is great in some ways, but it's kind of harmful in other ways because it kind of misrepresents the attention that, you know, both you and my mother are trying to clarify for the public, you know, and then the five stages have gotten more complicated, of course, because then it's become the Kubler Ross grief cycle. It's become the Kubler Ross change curve. Hundreds of companies are using the Kubler Ross change curve to train their workers to deal with change and loss. So. And again, you know, it's ironic because recently the BBC just did a story about the five stages, and they called it the rise and fall of the five stages. But in the same article, they say, oh, and by the way, we use the five stages to train our workers. So how can you say, like, the stages have been disproved? And at the same time, saying we use them to train our workers is completely nonsensical. Right? I mean, it's crazy. So anyway, I think that more or less explains my position on the stages. Are you there, David?

I'm right here with you.

Okay.

All right. So, you know, I'm just going to add a few things to that, if I may, please. First of all, it's. It's a fascinating thing to me that, you know, obviously I get hit a lot with people going, you know, those stages were never adapted for grief. And I'm like, have you ever looked up on grief and grieving? And by the way, did you ever read Page One? Literally on page One it says, they're not linear, they're not a map for grief. Our grief is unique. They're overlapping. So it's interesting. There's, you know, people have judgment before investigation. And so that's an interesting thing. The other thing I get, and I just love to hear you speak on this about your mom. Sometimes people will go on Facebook or something or Instagram, they'll go, you and Elizabeth Kubler Ross are just trying to neaten up our grief and get us to fight, follow your rules. And I'm like, you know, I never really thought of Elizabeth as neat or someone who wanted people to follow rules. In fact, kind of the opposite, right?

Strongly so.

It's very ironic. I mean, you know, I mean, so many things in Elizabeth's life are ironic. I mean, you know, I mean, she was called the death and dying lady, but she was really the life and living lady. Right. You know, I mean, she was about breaking rules. But then you hear things like that. I mean, so many ironies.

It says, and I will tell you, one of my favorite things I remember about the rule breaking woman is.

My children must have been about 9 or 10 years old. And your mother was in the hospital. And I went there to see her. I went up and she said, I thought the kids were with you. And I said, they're in the lobby, Elizabeth. And she goes, why aren't they here? And I go, because you have to be 14 to come up. And she was like, have I taught you nothing? Oh, God, you're always coloring in the box. Really? With all your smarts, you couldn't find a way to sneak them up? And I felt like I'm not a good rule breaker in front of Elizabeth.

Yeah, I can hear with her Swiss accent, that's bullshit.

Get them up here.

Exactly.

And of course I'm like, I did get them up there.

Yeah.

The other thing, just so people get a feel of that frustration of getting reduced to.

Five words. I would sometimes be visiting your mother and sitting there, you never knew who was coming in, whether it was a patient, a clinician, royalty, movie star. I mean, it could be anyone.

I sat there and so many times clinicians would go, elizabeth, let me give you the background on this case. I need your help. And we would sit there for 20 minutes, hearing all the background, like, waiting for the question. And then the clinician would go, so, Elizabeth, what stage are they in? And your mother would go, forget the stages, right? Meet them where they are. You know, I can remember her saying so much, meet them where they are. And I think that's gotten lost in our modern world that wants to give you five easy steps for everything, right?

And in a way, that's what she was doing. She was saying, hey, I'm gonna create something that is easier, remember? Because we're dealing with patients. We're not dealing with psychiatrists or medical people. I want the common person on the street to remember this. But then it kind of came back and bitter, right? So, I mean, she made it easy and hyper simplified it. But, you know, it was based on a larger model. She said, obviously there's more than just five stages. But the five stages are kind of a shorthand for a very complex problem. But you can't, you know, just whip that out when you have five minutes to see a patient. Let's develop a shorthand conversation. You know, so I heard my mom talk about possibly 14 stages, right? And you know, she talks about anxiety 14 times in on Death and Dying. Right? So somebody wrote a book saying anxiety is a missing stage of grief.

Claire Bidwell Smith.

Right. But so, yes, it wasn't mentioned, you know, in. In the index, but, you know, she talked about this and she talked about all sorts of things.

Yeah. The one thing that I love that comes up a lot in the media is they'll go, we want your comment. Something new has been discovered in grief. And I'm like, something new. And they'll go. And they'll go, do you know, grief occurs before death? It's called anticipatory grief. And I'm like, yeah, we talked about it. On grief and grieving. Your mom called it preparatory grief in 1969. It's just not new. She mentioned it decades ago, by the way.

Yes. Half a century old, but you can put on some bells and whistles and a shiny ribbon and call it macaroni.

You know, I think that's so true that it was interesting, you know, when you talk about. I've been. Been around her long enough in my life, decades now to know that she's in favor, she's out of favor, she's in favor, she's out. You know, that it's a bit of a roller coaster. And, you know, it's amazing to me how the things that your mother, Elizabeth, talked about, about the afterlife were Considered so out there, as you said, it was like, shh, don't let her talk that way. And now it's been proven that connections with our loved ones after they die are a good thing for people in grief, that we don't know that it's actually arrogant to think, oh, we know.

That's one of the ironies I was talking about. I mean, like, so many ironies. You can just go on and on for half a day on all the ironies in Elizabeth's life. And people say to me, oh, your mom was great, but she didn't go far enough. I'm like, do you have any idea what she went through just to do what she did? I mean, she basically sacrificed everything. She gave up her family, you know, her position at the hospital, her reputation, so, you know, so to speak. You know, I mean, she was all about, she'll do anything to help a patient. She doesn't matter what the cost was to herself. Right.

So let me see if we have some questions. I think a few came up. I think we addressed a lot of the questions. I saw one that I'll just talk about that someone asked a few times. How did I meet her? It was interesting that we were both going to be at a conference in Egypt, and she was, of course, the keynote of an international conference on death and grieving in Egypt.

Right.

And the person who put the workshop on and was doing it all, I mean, she was the keynote. I was like wallpaper. And after, I remember the person who was running it said to me, how's she doing? Do we know? And I went, well, you must have a contact call. And she goes, I don't know how to call people who are sick. And I go, well, are you calling her directly? And she went, no, it's her son. So I said, give me his number. I'll call. I was shocked. I called you, and you said, she's doing better. Here's her number. I'm like, okay. Then I called her. We had an amazing conversation. She was like. She told me how she was doing after her stroke. She talked about what was it like going to Egypt, and shared that she had been there before. And it's sad she didn't get to go again. And then at the end of the conversation, I remember saying, well, Elizabeth, I hope someday, somehow, in my detached sort of way, our paths get to cross, because I would love to meet you. And she goes, how about Tuesday?

And I thought about that's what made her the person she was. She wasn't like, maybe our Paths would cross again. It was like, Tuesday, right?

She know how to push buttons. She's like, you know, she wanted things now. And she's like, you know, forget. Like, let's do things now. Like, right now. Like, kenneth, let's go fly to Europe, like, right now, today. Like, I want to go do this now, right? So that's how she got things done. Like, don't wait, because tomorrow is not promised to anybody. So let's do it now.

And she's also a woman who was the most honest, the most loyal, probably loyal to a fault at times.

Oh, yes.

And I can remember I was. I had no idea. I was. You know, I was very young when I met her. I. I had never understood how you can be used in the way she would get used. She would say to me, if you get successful with the lectures, good luck. People are going to love walking you in, and I hope you get a ride home.

And I would find things like that to be true.

But I'll tell you one of the things, and I don't know if you've heard this story. You probably have.

I think it was on my maybe first meeting with her. It was really. And I feel silly telling this story. I was meeting with her, and I'm sort of young, in hospice, palliative care. It wasn't even called palliative care at that time. End of life care, grief and loss. And I said to her, elizabeth, is there anything I can do for you? And she said, like what? I said, well, this is the part I'm embarrassed to say, because I was talking to her. I said, I'm good with pain management, advanced directives.

Managing your pills. I could help organize them. I'm throwing all this at the person who discovered it. And she goes, well, I could really use my air conditioning filters changed. And I said, your filters for your air conditioner? And she goes, yeah, I bet they need changing. And I went, well, don't you have someone who does that? And she goes, you said. And I go, oh, well, sure. Where are they? And she goes, oh, I don't have them here. And you'd have to find the ladder, right? And it was one of. You'd have to go get them at the store, right? And it was one of those moments I had to really stop and go, when I say I want to be of service to someone, do I really mean it? She actually needs her air conditioning filters changed more than an advanced directive in that moment, which she probably had probably before all of us.

Isn't that what she's asking for. So I changed the air filters. And of course, years later, she told me that was a test.

She says, I wanted to know if you were phony baloney and just there to use me.

That sounds like Elizabeth. Do you know the story about how she tested people on the farm?

No.

That was somewhat similar. And it's one of my favorite stories. I mean, just literally thousands, but, you know, so people from around the world would go to Virginia and, like, oh, they're like, coming to the Holy Grail. You know, they're dressed up in their suits and ties, and they got their cards with, like, you know, 27 letters after their name. And I remember, like, these doctors would come in from Europe all dressed up, and, you know, the farm was a very simple place. And my mom was in her overalls, right? You know, practically like a piece of straw coming out of her mouth and doing our Swiss hillbilly thing. And they say, hey, Elizabeth, I'm, you know, this famous doctor from Germany, and I've flown here to see you, and, you know, I'm a very important man, and, you know, I'd consider working with you. She goes, oh, yeah. Oh, yeah. Good, good. Go milk the cow and get some eggs from the chickens and get me the little pig and then come back. Right? Exact same thing as she did to you, but the farm version, right? Like, excuse me, you know, here's my card. I'm very important doctor. Yeah, yeah, go milk the cow and get some chickens for me. You know, as, you know, same thing. She's testing them. You know, if they're too snooty to go get their hands dirty, she's not going to work with them. But if they'll go and, you know, get themselves down and dirty, she'll be, yeah, yeah, stay. Why don't you stay for a week and I'll. I'll train you. I'll do anything you want. But, you know, that was a test, right? You got to get dirty.

And, you know, I. Her work is just amazing, how it lives on in so many ways, in so many corners. I also think about.

What do you think she would think about how it's impacted the world? Could she ever grasp the impact, do you think.

That 50 years later we'd be talking. Well, 50 years from her first book, right?

I talked to her a number of times at the end of her life because I took care of her the last nine years of her life. And occasionally she just would bring it up and say, kenneth, you know, after I'm gone, do whatever you want. I totally don't care. Do photography, do my work.

Join a rock band, do whatever feels right because, you know, I've done my thing. You know, she felt like she was kind of like Johnny Appleseed. I've gone out and I've sown 10,000 seeds around the world and I'm done. So, like, you know, I've sown the field. It's up to them to kind of tender the plants and do with them what they want. So I think she was kind of like torn because, you know, she was this non stop woman who wanted to continue working, but, you know, she had limitations from her strokes. So she was kind of torn with, I want to do more and I've done enough. And whatever you do, it's up to you now in the next generation. So I think she was torn on that, on that subject. But, you know, I think, you know, she. And again, on what she accomplished, I think she was torn on that too because, you know, bazillions of people writing her letters, she's on TV and all that stuff, but then she go to a hospital and have this, you know, ridiculous, terrible experience like, you know, you're talking about when she was in hospital, and she's like, have I taught them nothing? Have we gotten nowhere since 1969? So, you know, it was this kind of dueling balance of I've done a lot of great stuff. Oh my God, I haven't done nearly enough. What if, you know, why hasn't it sunk in with society?

And I think that's the kind of thing that gave people that misimpression. You know, I hear people saying sometimes, and I have my own story of it, that she denounced her work and she said, her work means nothing. And I can remember Elizabeth, you know, there was always a reporter just too close. And I can remember someone was there writing a story. I went to the house. She had just gotten out of the hospital. The home health person was there for the IVs and literally said to her, with a reporter there. And like, the home health person had no clue. It's Mrs. Ross. That's all they knew. And they said, you know, all right, she's going down her checklist. And she says to her mom, all right, do you have an advance directive? Yes. Do you want to see it? No, I just got to check the box. And your mom turned to us and goes, I've taught them nothing.

Right?

And of course the report is going, she's taught them nothing, you know. You know, but it was those moments of frustration that she would feel where it's like, it's not the checking the box. It's not the framework, it's the content.

Exactly. So, you know, and you know, last nine years of her life, you know, she had a number of strokes. She was paralyzed. She was frustrated being paralyzed because she was an overachiever. She couldn't even go make a cup of tea. So everyone's going to be angry. And she had no problem expressing it as, you know, so, you know, if there's a reporter there, she'd go express her anger, you know, or maybe she was having a good day so you could talk to her, you know, at three different parts of one day, and you get three different stories. I'm happy, everything's great. I had this interesting Tibetan monk here. And then at noon, my God, I'm so bored. Oh, my God. And then at dinner, oh, my son's coming to visit me. We're going shopping, you know, but I don't care about work. And then the next day, she's like, oh, my God, I have to do another book. You know, so, you know, it's like a roller coaster. So.

And let me tell you, that's another memory I have that anyone who was close to your mother knew what it was like on 110 degree day in Phoenix to be going, I would be taking her to the Burlington Coat Factory. Oh, yes, we would be at the Burlington Coat Factory.

Or she'd call me up, you know, at midnight and say, kenneth, they forgot to feed me. I'm like, well, no, mom, it's one in the morning, so you probably ate like seven hours ago. She'd go, no, no, they forgot to feed me. Can you bring me dinner? And so I'd have to go like Jack in the box at one in the morning and grab a taco supreme or, you know, hush puppies or whatever she wanted. So, you know, it was like, you know, and there's days when the housekeeper didn't show up, no one showed up, and she's bored. Maybe I was traveling or something was happening. There's other days there was literally like a receiving line at the front door. There was 5, 10, 13 people waiting, you know, like every 15 minutes to have a viewing with Elizabeth. Right? So. And then. But she'd say to the press, oh, I sit here 15 hours a day, bored. You know, I'm like, well, yeah, maybe on Tuesday, but on Wednesday, you know, the princess from the Netherlands was here, and so. And so was here. And you went shopping, and we just bought you a ticket to go To Switzerland. And, like, you know. So, you know.

Well, you know, it's sort of. It's funny. It's kind of like, you know, there's something so human about that that it's like I can remember those visits. Like, how are you? Bored. Alone. Nothing's happened? No, nothing. It's been terrible. You know, 10 minutes into the conversation, so. And, you know, Oprah was here.

Oh.

Oh, okay. Oprah was here. Sure. Alrighty.

My life is a little more boring than yours.

Oh, did I tell you, Kenneth? I kicked Shirley MacLaine out of my house yesterday. Really annoying. Oh, I'm sorry, Mom. That must have been so bad.

So.

So, you know, and I also just want to say, first of all, obviously, so many people here know and. And have been so supportive of the new work I did, Finding Meaning, the Sixth Stage of Grief. And, you know, I would not have done that book in the way I did. And it was one more chance to revisit and clear up some of those stages and acknowledge your mother and talk about meaning and hope. And I just want to thank you and the foundation for permission for that. No, my pleasure.

But I say you. I'm telling you, you will have to continue doing this the rest of your life. Like my mother, until they maybe get it. Because it never stops.

It never stops. And she literally changed my life in so many ways. I can never thank her or you enough. So tell us how we can find you. What if people want to see your photography? How can we know more about the foundation, what it's doing? Tell us how to get you. I want to make sure I hold up on death and dying. It's like an amazing reread. 51 years later.

Was briefly. The foundation's been in existence 15 years, just since after my mom died. We started working on it a few months later. And right now, in the last couple years, we've been focused on international development. So we've got 13 chapters in 12 countries, and we're talking to eight more countries now. I just got off the phone two hours ago with a woman in Beirut who wants to start IKR Lebanon. So we're focused on education and international development because so many people around the world have so little care. We're starting the first freestanding hospice in Rio, for example, in the poorest slum of Rio. So that's quite challenging. And we initiated the first pediatric hospice in Chile and Santiago. And we're starting a hospice in Guatemala. We're talking about hospices in Mexico, Peru. So we're just trying to continue Elizabeth's vision of end of life care, whether it's hospice, palliative care or grief support, and whether it's medical professionals or to the person in the street, you know, Elizabeth was all about the entire rainbow, culturally, diversity wise, everything. So the foundation continues that. And we have something like 15 websites, but the main website is ekrfoundation.org and then you can also go to my website, which is kenrossphotography.com and of course, we're on Instagram. Elizabeth Kubler Ross Foundation Elizabeth with an S. And again, I think we have pages in English, Spanish, port, Portuguese. I think we're working on a Japanese page, a Flemish page, a French page. We have those languages already in websites and there's at least a dozen Facebook pages, LinkedIn, we do everything except TikTok and Snapchat. That's where we draw the line. But other than that, we have it all.

Very good. Thank you so much, Ken. I'm going to stop our Facebook and say goodbye to our Facebook files, folks. And maybe we'll stay just a couple more minutes. In tender hearts, if you can hold up for just a little bit longer. All right, thank you so much for everyone joining us on Facebook. Please keep posting. Let us know when you're having a bad day, a good day. Support one another. We can't do this alone. And I love bringing people like kin here to inform us and let us know. Because I think the more you know about grief, the more we can heal together. So I will say goodbye now to our Facebook friends. Take care.