ARCHIVAL CLIP ELISABETH KÜBLER-ROSS: If you feel like screaming, you scream. If you feel like crying, you cry. Don't try to follow a textbook or have somebody else tell you what to do. Trust yourself, your own natural emotions.

This is Death, Sex, & Money.

The show from WNYC about the things we think about a lot...

and need to talk about more.

I'm Anna Sale.

That voice you heard at the top there was psychiatrist Elisabeth Kübler-Ross, in an interview with Oprah back in 1980. And her words “Don’t try to follow a textbook” when it comes to dealing with loss might sound a little odd coming from the woman who’s best known for writing the literal textbook on grief. It’s a 1969 book called On Death and Dying.

RACHAEL CUSICK: And in it, she shared these conversations that she'd been having with dying people. Literal transcripts of these interviews.

This is my colleague Rachael Cusick. She works for the show Radiolab. And for the past year or so, Rachael has been working on a piece all about Elisabeth Kübler-Ross and her most famous legacy, the five stages of grief. You’ve probably heard them before—denial, anger, bargaining, depression, acceptance.

But as we hear in Rachael’s Radiolab piece, these stages of grief really evolved over the years. They actually started out as the five stages of dying, which Elisabeth Kübler-Ross wrote about in her book.

ARCHIVAL CLIP EKR: I think there was a great attempt to deny the reality of death in this country.

Before On Death and Dying came out, few people in the medical profession were talking about death openly. Dr. Kübler-Ross travelled the world talking about it, giving sold out lectures and interviews, as Rachael describes in her Radiolab piece. 

RC: She wouldn't stand behind the podium.

BAL MOUNT (PALLIATIVE CARE PHYSICIAN): She chose to sit on the lecture table, swinging her legs back and forth.

RC: and she would just … talk.

[Archival Clip EKR: The horrible question that we’re all afraid of, and that never happens, the patient looks at you and says, am I going to die?

DENNIS KLASS (FORMER EKR RESEARCH ASSISTANT): But when she started speaking in that little soft voice, she could have an audience in the palm of her hand for the next 45 minutes.

KEN ROSS (SON OF EKR): I mean, there was not a sound in the audience.

DK: She just had them.

RC: Like, I didn't think it was possible to see a twinkle in someone's eyes from, like, fuzzy, YouTube archival videos, 

JAD ABUMBRAD: (Laugh) 

RC: but when she speaks about this, you just see this superpower in her.

[ARCHIVE CLIP, EKR: And how do you react to the nasty, unpleasant, mean patient? What do you do? Honest...]

BM: At one point, she was recalling a discussion with somebody, and she said, "And what do you think he was saying when I heard that?" And a young guy sitting close to me answered the question. He said he was afraid.

[ARCHIVE CLIP, EKR: That you come in peppy. That you come in and actually function.] 

BM: He was afraid.

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

BM: Just the level of connection that she could generate.

RC: This is where we get to the stages, like THE five stages. Because during these speeches, this is actually where ...

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

RC: Elisabeth would talk about these five stages she had seen her dying patients go through. 

[ARCHIVE CLIP, EKR: Then this denial will be replaced with a tremendous anger.] 

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

[ARCHIVE CLIP, EKR: And this is true for all patients, without exceptions.]

[ARCHIVE CLIP: Yes.]

RC: She sort of used them to organize her talks. 

KR: She said back in the '60s, there was no common language. There was nothing they could talk about. So she said by creating five stages is something simple that any layman or any family member can remember.

People definitely remembered them. And over the years, these stages were eventually applied to grief. But the stages have their limitations. Rachael knows this personally, how frustrating it can be when your grief is not moving through a prescribed set of milestones. 

Rachael’s mother, Sue, died when she was a child. She wrote about that loss in a Modern Love essay in The New York Times last fall. “All I remember is my grandmother appearing in front of our home in her turtle-green Chrysler,” Rachael wrote. “She always seemed to exude a sense that the show must go on.” 

I was really moved by Rachael’s essay when I read it, so we asked Rachael if I could talk with her, together with her grandmother, about grief. 

MARILYN RYLAND: I hope it goes well. I'm a little apprehensive. Anyway.

RC: She says she doesn't want to be a flop.

[laughter]

Rachael’s grandmother, Marilyn, helped raise Rachael and her four siblings. She’s 85 now and recently got some bad news about her own health.

MR: I had renal cancer and it's metastasized. It's in the bones. I'm being treated with immunotherapy. It's not a great diagnosis.

RC: I'm just assuming this, grandma, so correct me if I'm wrong but I think you were probably most afraid to tell me because of how hard I would take it.

MR: Oh, absolutely because I know more than any of the children, she - Rachael - counts on me. Not counts on me. She just wants me to be present. Wants me to be here.

AS: How old were you when your mom died?

Rachael: I was six.

AS: And Rachael, you were the youngest of the bunch.

RC: Yeah. 

AS: And Marilyn, when you think back on those first years after Sue's death and what you wanted to do to show up for these five kids after their mother's death, how did you think about it?

MR: When Sue became ill, I left my job to go help her during that last illness. I didn't think of that. There wasn't a decision to make. That's what I needed to do. Then after she was gone, it was more - I thought, "How are these children going to survive? How are they going to be raised in a really good way?" Their mother was the most incredible mother. She was a real mother earth.

The fact that I kept telling people that [chuckles] their mother had died and they would get so upset but I guess I was explaining why I was that presence that was there. And, you know, their father was there and their father was very much a part of everything. I just thought that that was the most important thing I could do. Not necessarily that that's what I wanted to do because I had stayed home with my own children and then had a job that I liked, but that's - I really couldn't give it a lot of thought.

AS: Your grandmother just alluded to this, but Rachael, how did you experience how she would explain her presence when you all were in public that your mom wasn't there? What do you remember?

RC: Yeah. I just remember going to Kohl's or ShopRite and we just spent so much time with her. I was like her little sidekick in so many ways and it was just a matter of time before she just starts talking and whispering to the people that you're talking to at the store and you just hear her say it, "I'm just the grandma. Their mother died." It was always in a whisper.

[laughter]

MR: Oh. Just explaining why they didn't have this wonderful mother with them. Anyway, that sounds a little silly, but anyway.

RC: I don't think it sounds silly. [laughs] And so it was just - at first, it was a little embarrassing but I never was embarrassed to be - I think I never sensed the gap between us in a way. That was just my normal. I never felt the need to tell strangers who she was.

AS: Do you remember talking about grief together with your grandmother when you were little?

RC: I don't really think we ever used grief in words that I could remember. I think she was always very - it was always in the room, loss, but I don't know how often we talked about the word grief. Grandma, do you remember ever having a conversation about it?

MR: We didn't really talk about grief. We didn't. That's probably a mistake. But it was just there. It was just so present.

RC: We didn't say, "Wow, we're going through grief." But I do think I would call her in moments where I was having a hard time like in college. We talked around the grief and the pain but never really about this exact source of all of it all the time.

MR: I just don't think there's anything more devastating than losing your - I mean, I thought the worst thing that could happen is to lose a child. I lost a son too, early on. But I think, to lose your mother when you're a child is the worst thing that can happen.

AS: How old were you when you lost your son?

MR: When I lost my son, I was probably 43.

AS: When you were grieving his death, did people talk to you about the stages of grief? Is that something that you heard?

MR: I did know about Kübler-Ross and all of that. The stages of grief and I did—in preparation for this, I did look that up because I thought, did I—? You do go through all those different stages but I don't know. Come down to the acceptance of the death of my children, I don't think you ever accept that. I don't think, with my son, my son took his life so there was no bargaining. With Sue, you do bargain. Why can't this be me instead of Sue or whatever?

There's a lot of guilt involved in—as a parent, your whole job is to have this child grow up as a normal human being. If you don't do that, you've failed in your job. Then to have that happen two times is unbelievable. Except with my Sue, there was something I could do for her, and I could help her family. In a way, I sort of redeemed this in my own head. I don't know. Shouldn't be saying all this. Anyway, I'm saying it.

RC: It's interesting. I never heard you frame it that way.

MR: I think about when I first experienced grief, it's so all life-changing. That's how I felt with my son. It's just devastating that your whole life is—it's almost like your life is over, your life has changed, and never will be okay again.

AS: Rachael for you, did people talk to you about the stages of grief when they were trying to be helpful?

RC: I never think we got a pamphlet or anything. It was always in the room and I almost think that was the first way I learned about grief because it was the only time in movies and TV shows or music even where you heard the word grief and then it was attached to some direction afterwards. Then I think because it's everywhere and you're not hearing it anywhere else, that becomes the thing that I would return to. Not because people were forcing it on me, just because it's literally the only map that I had in a lot of ways.

AS: Did you ever come up against the limits of the map or feel frustrated with the map?

RC: Yes, totally. Especially because I think you just want to get out of that feeling of grief when it's overwhelming and you feel stuck and I think for many, many years I tried to move through versions of those stages, never to return again. I think after many years of just feeling like I kept doing this tilt a whirl of these stages and never getting out of it, I, instead of being angry at those things, I got very—I would beat myself up for being stuck in this feeling of grief for so long. I didn't get angry at them. I was very upset with myself.

AS: Like this paradigm had made you feel like a failure.

RC: Yes. I always felt like my grief was really messy and showed publicly, and I always struggled with eating and it was all of these things that I was really ashamed of. I think when there’s this structure like the stages and you’re not fitting into it, there’s just some feeling about, like, you are failing. Even if some of those words fit into your experience, I think there's just a lonesomeness that comes from thinking that that's how you have to feel. Then I think as I got a little bit older and finally started therapy, I just recognized that those feelings might not ever go away. They might get a little bit better—I might be able to manage them when they come up, but they never go away. That's when I got really angry at the stages themselves.

AS: When was that shift that you mentioned? How old were you?

RC: I think I was maybe 23. Not until like a year or two ago.

AS: This is new. 

RC: Yes, it's definitely new.

AS: One thing that I wonder Marilyn for you, what Rachael said about how isolating grief can feel, I'm struck by for you, these really deep losses you experienced within family—you experienced alongside other people you love who also were losing these people that they loved. How do you think about grief? Do you think of it as a solitary experience? Has it been helpful to think about grief as something that is shared with the people who are left?

MR: I think it is shared. I know when my son died, my whole thought was to protect my two daughters. The whole thing was that their lives was going to be okay and because that's a terrible loss—then my husband and I had a difficulty in dealing with the loss of our son and that was very hard. That was very difficult to share because you feel guilty yourself and then I think the other person feels as though you blame them or whatever. It just changes your whole life, this grief.

RC: One thing you said that I do think it's really hard when you get into that place of having to put your grief right next to other people's. I think our family often is like, "Well, you lost a mother, that's even harder than losing a daughter." I always felt like, oh, I lost her when I was so young and you older kids had it worse because you remember her more and feeling like your grief is less worthy than another person's or less important at the moment, like a triage of grief. It's definitely really hard, I've felt as I grew up. Even hearing you say like, "Oh, you lost a mother, that's even harder." That just makes me sad because that's not fair in a way to you.

Coming up, I talk more with Rachael and Marilyn about their shared grief and how they're talking together about Marilyn's illness.

MR: Until I got this last illness, I was extremely well and I didn't really think too much about aging. I thought I still have 20 good years, believe it or not.

RC: The last, what, 10 years ever since I was older in high school, she then was able to step back a little bit more and have more of her own life. So I never looked at her as like she's aging. I think that's why it was a shock when she got the diagnosis because it was like she was in her prime, in my eyes.

[Laughter]

—

You all have been sending in your experiences with infertility and discovering that becoming a parent could be a lot harder than you thought. 

Some of you realized this early on…

MACKENZIE: When I was 16, I was diagnosed with acute ovarian failure and I was told that I would probably never be able to get pregnant naturally.

For others of you it was a realization that came with time.

NOA: I always thought that you fall in love, you get married and have a baby, and that's just the way that your life works. So I've fallen in love. I'm getting married, but turns out it's a lot harder to have a baby when you both have vaginas. 

For many of you, like our guest from last week Doree Shafrir, it is a long haul with plenty of obstacles. Our listener Lorena’s wife went through six intrauterine insemination, or IUI, procedures to conceive their first child. Now, Lorena is trying to get pregnant herself. IUI is covered by their insurance, but after four failed IUI procedures of her own, Lorena wonders if they should try IVF...which they would have to pay for out of pocket. 

LORENA: What your guest said on that last episode, couldn't ring more true that it is wild to think that people can just have sex and have a baby, because once you're going through this process, it's like, oh my gosh, it is so hard to make one. 

We want to keep hearing stories from you about what you’ve been up against when it comes to having kids.

We’ve mostly heard from women so far -- men and non-binary people, we’d love to hear from you too. 

On the next episode…

We meet a couple dealing with a gambling addiction that led to a financial and mental health crisis.

CORA: It did not fit into my narrative for my life or how it could go. That I would have a husband who would gamble-- like that just didn't even occur to me as a possibility, you know?

GARRETT: I didn’t make a decision that was based on valuing our relationship or marriage or the time we’d spent together. I made a decision out of pain and shame. 

Financial therapist Amanda Clayman joins us again for another set of sessions. 

AMANDA CLAYMAN: Our money sort of creates something that we need to deal with or something that we need to talk about. And in dealing with it and talking about the financial issue, we end up getting to talk about all of these other really important issues as well. 

Look out for our Financial Therapy series in our podcast feed, starting August 4th.

–

This is Death, Sex, & Money from WNYC. I'm Anna Sale.

Rachael Cusick lives in New York City and visits her grandma Marilyn Ryland at her home in New Jersey every month or so.

RC: I went out to visit her a couple of weeks ago and it's like, my grandma is one of the few people in life that I actually let take care of me because of our relationship like that. I don't feel guilty taking that from her and I feel guilty taking it from other people.

AS: What's one way she took care of you when you were visiting recently that you remember?

RC: She made these things called—what are they called? Fools, grandma?

MR: We call them strawberry fools, but it was berries with whipped cream and put them in pretty parfait glasses.

RC: She sets the table and you wake up and she has the coffee pot ready to go. You get to come down in your pajamas and just the way that you would if you're going to go back home or something. That's what going to visit her feels like still, even though she's like, now I feel like she shouldn't be the one making me strawberry fools these days. [laughs]             

Marilyn's health is stable at the moment, but after she had cancer surgery last year, she needed a lot of help. Rachael moved in with Marilyn for about a month to take care of her.

RC: I think that was the best month that I've spent with you.

MR: Oh, it was awful.

RC: She hated it, she was so upset when I had to put Vaseline on her feet. She was like, "I'm so sorry," but I loved it. I think because one, I get to see this side of her as an adult. There were so many moments where I realized how funny she is and as a kid when she's making sure the world doesn't come crashing down, you don't get to be the funny one. I got to see her as an adult, her sense of humor, in this way I didn't get to. It's a lot of one-on-one time. I had spent maybe a couple of days or a week with her one-on-one, but not a month and some, that was special.

Then I think also just, I have this really complicated relationship with caretaking. I think because I take so much care of myself that I'm really afraid of being a parent and, not having a mother, I'm really afraid of feeling trapped by this idea of caretaking and I think being there and so wanting to be there for her and take care of her and never did it feel like burdensome to know that that was possible was a really special experience for me.

It was hard, there were definitely moments where I could just see she was in so much pain or there were days that it was really tough, but she was also in a moment back when I was with her, that she had this spirit about her that made a lot of the hard stuff really fun in moments.

[laughter]

She'd walk around with her little like—she couldn't bend down from the surgery so she'd use picker-upper sticks. She wouldn't ask for help all the time and I was like, "Grandma, don't bend down. I'll come get it, that's why I'm here." I would just hear the thing like clipping across the house.

[laughter]

She's trying to pick up a rag and I look up and she's like "I'm going fishing for rags."

[laughter]

Just little things like that. I just think they were so delightful and I wouldn't have gotten to see that if I wasn't there.

AS: Marilyn, you mentioned that you looked back at the Kübler-Ross stages and - to see what felt familiar or resonant. Did they feel like feelings you've had about your diagnosis and your illness?

MR: I thought about that and I don't think so and maybe it's because of my age. I know when I first found out about the renal cancer and decided on the surgery and the surgery was very risky and I thought, "I'm going to do this and if it doesn't work, it's okay. It's okay for me to be gone." I think there was an acceptance. Now, I wasn't gone so I can't say that I'm accepting it because I may be really upset later or maybe angry and so I don't know. There's always, through your whole life you're bargaining or I've bargained through my whole life so anyway.

RC: What does that mean?

MR: What, bargaining?

RC: What do you mean you've bargained through your whole life?

MR: Well, I guess you're bargaining with God, so you know, why don't you do this for this or whatever just like when your mom was sick, or when Stevie died, I would have much rather been dead than have my child die, but you don't have that choice. Then you realize you don't have that choice, and you've got to accept it. Anyway.

AS: If somebody is listening to this who is newly experiencing loss of someone they loved a lot and they've heard about the stages of grief and they've heard about what feelings they might run into as they grieve this person who's gone—what would you say to them about the utility of those stages and how much to pay attention to them?

MR: You go ahead. 

RC: I think they're just so narrow. If you're so new to grief and you've never towed into this world, start there, but never stop there. Never feel like you have to go into any of those boxes or all of them because of how lonesome grief is already. Grief doesn't need to make sense and it doesn't need to be neat. It might be very ugly and it definitely doesn't fit into five boxes that move along smoothly. I think totally taking that off the table, even though all the pain will still be there, just feel whatever you have to feel.

RC: I always wondered what it was like for me to be working on this story while you were sick. I don't know if you have any thoughts about it. I remember one day the nurse came to your house and I had the On Death and Dying book and she gave me this look like, holy shit, you're really just out there doing it. (Laughter) I wonder, like what you feel about it. Is it weird? Is it comforting? What does that feel like for you? 

MR: No, I thought it was something you needed to do. I just thought this was your way of dealing with this and that's a smart way—that's an intelligent way to delve into it and see what it's all about. So I just thought that was a comfort to you perhaps, and that however it worked out, it would be okay.

RC: Yeah.

That's Marilyn Ryland and Rachael Cusick.

And now I want to share with you a little more of Rachael’s Radiolab episode that she was working on while taking care of her grandma. It’s called “The Queen of Dying” and it’s available in full in the Radiolab podcast feed. 

In this part, we hear what happened as Rachael read On Death and Dying after a lifetime of grappling with Elisabeth Kübler-Ross’s so-called five stages of grief. Here's Rachael. 

RC: If you actually read the book On Death And Dying, [yawns] which I did, I just had to take my retainer out for reading this. I'd read it every night before bed. There's how many chapters? Oh, my god, I'm so bad with Roman numerals 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12. 12 chapters, only five stages. The stages really just serve as chapter headers.

She starts each chapter with these poems. When you get to those pages, it's really hard to find which is all these beautiful transcripts one singular emotion. These means will last for different periods of time. She says you could go through all the stages and then repeat some, replace each other, or exist at a time side by side, or not experience any of them at all.

This book is not a five-stage shaped life raft. What does the preface say? "I've worked with dying patients for the past two and a half years. This book will tell all about the beginning of this experiment." The first page literally says, "It is not meant to be a textbook on how to manage dying patients nor is it intended as a complete study of the psychology of dying. It is simply an account of a new and challenging opportunity to refocus on the patient as a human being."

This is the goal of the book. That is it. "I'm simply telling the stories of my patients." The real substance of this book. "It is hopes that it will encourage others not to shy away from the hopelessly sick but to get closer to them." The ocean of color and texture that the stages are tucked inside is not escaping grief, it is standing in it and not running away.

EKR: If we do not come, if we do not pat on the back and say, "Don't cry, it's not so bad." It is bad to leave everything and everybody you love. If we help them be angry and help them be sad and let them express it and cry and not say "You're a man, it's not manly to cry." I think this is terrible.

RC: Everything that you're feeling is okay. None of it should fit into these boxes. The best thing that we can do for each other as human beings is to just sit there and listen to it as it's coming up.

EKR: Just be you. If you feel like screaming, you scream. If you feel like crying, you cry. Don't try to follow a textbook or have somebody else tell you what to do. Trust yourself, your own natural emotions.

RC: When I read it, I shot up in bed. I just sat up because I was like, "Oh, my God, this is it." 

That's Rachael Cusick. You can hear her entire Radiolab piece about Elizabeth Kübler-Ross, a woman with an incredible life story—and death story—wherever you get your podcasts. There’s also a link in our show notes, along with a link to Rachael’s Modern Love essay from The New York Times.

Death, Sex & Money is a listener-supported production of WNYC Studios in New York. Katie Bishop produced this episode. The rest of our team includes Afi Yellow-Duke, Yasmeen Khan, Emily Botein, and Andrew Dunn. Our interns are Mardy Harding and Kristie Song. 

The Reverend John Delore and Steve Lewis wrote our theme music.

I'm on Instagram @annasalepics, that’s P-I-C-S, and you can find the show on Facebook, Twitter and Instagram @deathsexmoney. Sign up for our weekly newsletter at deathsexmoney.org. Thanks to Leia Lefay in Irvington, New York, for being a sustaining member of Death, Sex & Money. Join Leia and support what we do here, by going to deathsexmoney.org/donate. 

And special thanks again to Rachael and her grandma, Marilyn.

MR: I really think life is good. Life is wonderful. Then I think if people knew all of these things, these tragedies that happened in my life, they must think I'm crazy. Anyway, but life is good. That's what I had to say.

I'm Anna Sale, and this is Death, Sex, & Money from WNYC.

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