Most of us know we are going to die. How often though do we actually let ourselves really internalize that understanding? To imagine it? To feel it? To try to accept it?
On today’s podcast we invited BJ Miller back on our podcast to talk about death using as our guide his recent NY Times editorial What Is Death? How the pandemic is changing our understanding of mortality.
We start off with BJ appropriately picking the song “Ebony Eyes” as our intro song, which is a good analogy to talking about death, as it was initially banned by the BBC from airplay as its lyrics were considered too upsetting to play on the radio. We then go into his thoughts on how we picture our deaths and dealing with those emotions we feel when we do, how we “live with death”, and
Also check out BJ’s article that is geared towards kids/students – https://www.nytimes.com/2021/01/06/learning/how-do-you-view-death.html. As BJ put it in an email to us: “It’s fascinating to me how they’re taking care to reach out to younger minds, further proof that the idea that no one wants to think or talk about death – especially youngsters – is bunk.
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Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Alex: And today we’re delighted to welcome back BJ Miller, who a hospice and palliative care doc, and co-author of Beginner’s Guide to the End. We had a podcast about that previously, we’ll link to that in the show notes affiliated with this podcast, and also the founder of Mettle Health and author of a opinion piece in the New York Times that came out in December about death that we’re going to talk about today.
Eric: Before we get into that topic, BJ, again we’ll have links to that New York Times article What Is Death? How Is the Pandemic Changing Our Understanding of Mortality, big topic, but we always start off with a song request. Do you have a song request for Alex?
BJ: I sure do. This is my favorite part of you guys’ show. Ebony Eyes by the Everly Brothers.
Alex: And why this choice?
BJ: Well, I mean, those of you who don’t know the song, you’ll see. It’s just a lovely, sweet little lullaby that has a pretty devastating end to it. And it touches on our theme of the day.
Alex: It does.
BJ: And I just love the Everlys.
Alex: Yeah. I did a little Googling. I was not familiar with this song, and it’s in 3/4, which is unusual, it’s got this beautiful beginning lullaby story that I’ll play at the beginning, and then we’ll get to the devastating ending at the end. But it just is so emotionally manipulative and wrenching that it’s almost humorous in that it’s just right in your face in the way that it does it. It came out in 1961, made it to the top 10 in the charts. It was banned by the BBC because they worried it would make people too sad to listen to.
BJ: I didn’t realize that. Hilarious. Thank you.
Eric: Uh-oh. Foreshadowing makes me worried.
BJ: You should be, Eric. That was beautiful, man. That was beautiful.
Eric: So BJ this podcast and maybe banned because it may because severe sadness amongst all of our listeners, because we’re going to be talking about death. We can talk about puppies and kitties instead if you’d like. [laughter]
BJ: No. I was going to make a horrible joke about that, no. But we’ll do it. We’ll dive in. We’ll go ahead and we’ll do what our patients have to do.
Eric: All right. Can I just ask, before we get into this topic, when we think about other people’s death, that’s like, okay, we can’t handle that emotionally, but for a lot of us, when we think about our own personal mortality and death, maybe our heart starts to flutter. We feel that deep pit, our stomachs are churning.
Eric: Obviously you wrote this piece and I’d love to hear why you wrote this piece, but do you still get that inner feeling of dread when you think about death, or how have you handled that?
BJ: It hasn’t changed much. I watch my mind begin to try to picture it, I picture my corpse, I picture a lifeless body, I picture the world without me running around in it, but of course that’s where I started short-circuiting, because when I picture the world without me running around it, I’m still picturing it through my eyes. I’m still picturing it as I know it. And that stops.
BJ: It’s almost like I feel myself short circuit, so I can approach it, I can get close, but ultimately I really struggle to actually get all the way there. I don’t know if we can get all the way there, but it does seem to be some utility in trying to get as close as you can, to narrow the distance between you and this thing that can get so scary.
Alex: Mm-hmm (affirmative). So, you’ve been thinking about death for a great deal of your life. And as you’ve talked about in your book and in your Ted talk, you had an experience of coming close to death in your late teens, early twenties?
BJ: Yeah. 19. Yup.
Alex: 19. And so you’ve been thinking about death for much of your life. I wonder if you could tell us how your thinking about death has evolved over time.
BJ: Yeah. Well, in some ways it hasn’t. In some ways it remains as ultimately, it’s penetrable to a point and I can’t quite get past to the point. So what’s happened over time, and what has felt, and it feels therapeutic for me and has attenuated my fear, is that the process of imagining my own death, trying to internalize it, trying to make it real, because it is real, and therefore me trying to come to terms with reality, which is ultimately my personal goal, I want to know reality and I want to be okay with it, where I get my, like I was saying earlier, I ping off it, I could watch my brain deflect off it eventually.
BJ: But I deflect to a place where I imagine other people, I imagine the world … like right now, one of the ways I picture my death is not so much me picturing me dead, it’s picture things happening in the world without me in it. So just picturing your lives is almost a practice. My friends, if I think about my friends, what they’re doing right now without me in the room … in a way, thinking about my own death has hope is that it puts me in touch with the world beyond myself. And that seems to be so much of its therapeutic value. That’s where the humility is, that’s where the right-sizing is, that’s where the realization is that yeah, my ego will die, this body per se, on some level will die, but life keeps going. Life keeps going. That’s what this misnomer of end of life. No, no end of your life, end of my life, but even that’s a porous thing.
BJ: So over time, to answer your question, Alex, it has evolved to allow me to see the world outside of myself. And that seems pretty important.
Eric: And I really loved your New York Times piece, because it starts to talking about how this pandemic is changing a little bit about how we’re thinking about death. I was wondering, would you be willing to read the first maybe paragraph or two of the New York Times piece?
BJ: Yeah. I’d be happy to. I’ll pull it up. So, let’s see here. “This year has awakened us to the fact that we die. We’ve always known it to be true in a technical sense, but a pandemic demands that we internalize this understanding. It’s one thing to acknowledge the death of others, and another to accept our own. It’s not just emotionally taxing; it is difficult even to conceive. To do this means to imagine it, reckon with it, and most important, personalize it. Your life. Your death.
BJ: “COVID-19’s daily deaths and hospitalization tallies read like ticker tape or the weather report. This week, the death toll passed 300,000 in the US. Worldwide, it’s more than 1.6 million. The cumulative effect is shock fatigue or numbness, but instead of turning away, we need to fold death into our lives. We really have only two choices: to share life with death, or to be robbed by death.”
Alex: As you’ve talked about here and in your piece, you have this focus on trying to imagine what it’s like to be death and trying to grapple with and understand what it means to be alive and then to die. And I’m wondering if you’re suggesting, and also for you, personally, is, do you have a regular practice of thinking about death? Is this almost ritualized in some way for you, in terms of something that you come back to with regularity?
BJ: There are certain death meditation’s, more formalized traditions around this sort of practice. I don’t have a practice per se. I guess I’m trying to be integrated in a way, for my own personal development. So it’s not like I’m one way at work and another way here, and I have my formal meditation hours and the rest of time I’m letting my brain run me around the planet. For me, it’s all much more mushy and vague. And so I think about my death throughout the day in multiple ways, but not as a practice and not in a formal way, it’s just a sweet little reminder. And I think of it any time I see a bug in my windshield, or when I see the death tally, I try to remember these were actual people, and [crosstalk 00:10:55] plant myself into that math.
BJ: But in answer to your question about, no, I don’t have a formal practice, but in a way I do it all day long, every day. And it’s gotten to the point where there’s a relief too. I feel some relief, too. I use it … Sorry, Eric. I’m just going to say I also use this when I get anxious about all the things I’m doing wrong or not doing right, and I also let death be a comfortable thought, like, “Someday, I won’t have to worry about these things.” And when I get down on myself for not getting to everything on my list, I realize that’s part of the practice, also, of death and dying, is you’re not going to get to everything that you’ve dreamed of. In a way, that’s a good thing. My dreams exceed my reality my life’s boundaries. And I have come to like that tension.
Eric: And when you talk about sharing life with death, is that what you mean?
BJ: Yeah, yes. That I think the goal is death from a design view or from a worldview, from an integrated view, is if we can actually rope death into our frame of life, versus the thing that robs us of life, that takes our life, this pernicious force that comes in and sneaks in and snatches us away.
BJ: That’s terrifying. And I think it’s just more accurate to say that death is part of life, that death frames a life. And like we were saying earlier, my life ends, but life keeps going, and in some ways my body goes on to be other things. Death gets hard to say that it actually exists. Certainly exists in my ego. The death of BJ will happen. I don’t doubt that. But if I can normalize that, see myself in the world that accommodates that fact, then I’m going to be less at odds with nature, less at odds with reality and less at odds with myself. And that’s very appealing.
Alex: You talk in this piece about how the cells in our body are continually dying and turning over. And when we die, the cells in our bodies will turn over and become other things as well. The carbon molecules will become parts of plants and parts of other aspects of nature. And it struck me as I was reading, that this is like a scientific, spiritual conception of life and death. And so I wanted to ask you about your own spiritual religious beliefs or framework. Where are you coming from?
Eric: I also love seeing that big oak tree right behind you as we’re talking about what happens to the atoms of ourselves when we die.
BJ: Yeah. Yeah. I love this tree, this big live oak, and it actually may be dying. I recently had someone look at it. It may be slowly dying and I guess, okay, so we are.
Eric: What really is death, BJ?
BJ: Exactly. As you were describing that, Alex, as you were describing that passage, as I listened to you describe it, I’m tempted to go, “Wow, that sounds spiritual,” or, “that sounds fantastical or something, or it sounds poetic, even,” but no, that actually just is. You just described observable science. Nature is pretty poetic all by herself. That’s part of the fun realization, is that when you start paying attention, it is everywhere: in you, on you, around you, death and life, completely just turning, ever churning.
BJ: So, I don’t wish that to be or not wish I had be. That just is. I mean, again, that’s observational science. I mean, the point about atoms, I guess that starts getting theoretical. You have to believe that there was a Big Bang theory. You have to believe in the Big Bang theory to set off this cascade of action. And that has set us a finite number of atoms in the universe and these atoms keep coalescing and decaying, coalesce, decay, that’s happening all the time.
BJ: So, that’s the only piece that asks for a little leap of faith that is somewhat theoretical, but otherwise we’re just talking about the things you can observe. So, I don’t think of it as so spiritual per se, but then again I do, because I guess the point here is separation, separating life from death, separating each other from one another … this is where we get into trouble, separating spirituality from science. That’s so much of our problem, is siloing these things when in fact they’re different ways of describing so much the same thing. So that’s my answer your question, that’s my spiritual bent, is to keep looking for the limitations of language versus the limitations of reality, the limitations of myself versus the limitation of life writ large.
BJ: Now, I’m trying to find these false distinction, these false dichotomies and these false separations, so that I don’t feel so separate from, or other than, et cetera, because I think that’s where all the trouble creeps into human endeavor.
Eric: Well, it’s really fascinating. That one paragraph … So you talk about from the time you’re born and your body’s turning over, cells are dying and growing every day. So, data driven start of that sentence, but it ends that paragraph with a story. It’s a metaphor. It’s poetry. A vital tension holds you together until the truce is broken. So we’re now using metaphors to help us understand the data.
BJ: Yeah. And like we were saying earlier, sorry to interrupt you, Eric. I mean, I think we’re only left with metaphor. It’s like asking us to picture our own death. You can only talk around it. It’s like describing a hole or a negative or a vortex. You can define it in the negative space around it.
BJ: Similarly, metaphor may be as close as we can get to a literal truth. I don’t know if that sounds ironic, but yeah, I think this is the power of metaphor and why we need it and why we need the expressive arts to even begin to get closer to our subject matter.
Alex: I’m just reading through … you end this section, “But we have fuller ways of knowing. Who doubts that imagination and intuition and love hold power and capacity beyond what language can describe? You are a person with consciousness and emotions and ties. You live on in those you’ve touched, in hearts and minds. Just remember those who’ve died before you. There’s your immortality. There, in you, they live. Maybe this force wanes over time, but it is never nothing.”
Alex: It is interesting to move from this scientific conception of the cells moving over into time, into parts that are still unknown and unexplained in terms of science. What is consciousness, right? What gives us the ability to be conscious? This is at that liminal border between spirituality and science. We haven’t gotten there with science; we can’t explain it, yet. There may come a day, but we have to rely on something more in order to integrate our understanding, and also to integrate our understanding of our relationship to others. And I love that line that you live on in others in different ways when you touch them, also with the love that they experienced for you, and they carry that with them, their memories of you, but also in terms of just the cells that you transmit to other people, and that turnover become other people over time.
BJ: Yeah. Isn’t it cool? It’s just really amazing. And I think that’s part of the practice, too, is part of the fun of being reminded that these things can be scary putting yourself in perspective like this, but it’s so dang interesting. It’s so fascinating. It’s so dang amazing. And I think that’s another reason why I’m interested in pulling attention to the subject, is not to be a downer or to be … but because it’s actually fascinating and in a way beautiful and beyond our comprehension.
Alex: I was also struck reading this and wondering, do you have mentors or spiritual advisors, or are there people who you read in particular who have influenced your thinking about death strongly?
BJ: No, I don’t have a mentor per se or a pathway per se, because for me, the pathway is a self discovery. I mean, received wisdom, received knowledge is important, and I don’t want to shirk it, but I also know that I don’t want to fall in a pit of actually memorizing lines or memorizing other people’s ideas to help me understand myself.
BJ: So, yeah, I might draw from the existentialists, Heidegger, Kierkegaard, Nietzsche, these guys have been helpful to me. Working at Zen Hospice and just thinking about Buddhism is of interest to me. I grew up in the Episcopalian tradition, and that informed a lot of my early thinking around death.
BJ: So, yeah, sure. I mean, eclectically, I’m hearing and reading to some degree these thoughts and ideas of others, but that just helped me get in the ballpark. The rest, it feels important and it is. I don’t want to over read other people. It needs to be self-evident, because we’re talking about a process that is going to happen to me and my relationship to it. And I think that’s what’s so important. So, yes, respecting traditions that have gone before, but really ultimately, I need to figure that stuff out myself.
BJ: So my main teacher is daily life. And it’s born of this notion that Monday through Saturday should be just as amazing and fascinating, and God, whoever, whatever that is, should be palpable in a strip mall as much as in a church. And so, similarly, I feel like I have to be able to live these things. And even if I’m discovering things a zillion other people have discovered before me, that’s okay. This way I can own it in my gut, in my viscera.
BJ: So daily life as my teacher. Reconciling my own feelings about my own losses, my own inadequacies, that’s stuff comes up every day, and those are proxies for death meditations to some degree.
Eric: And how has the pandemic changed anything for you or have you seen it change for other people, how they think about death or life?
BJ: You asked why I wrote that article, Eric. I mean, it’s a little bit because … Well, for one, I mean the skeleton of that article, interestingly or whatever, was a book chapter in Beginner’s Guide to the End that I wrote for that book, but the publisher cut it. It wasn’t practical enough or something for the publisher. So they cut that chapter. I loved that chapter. For me, it’s where so much of the interest is.
BJ: So I’d always been looking, wondering what I could do with that. So that was the background, but then the pandemic, the overlay now is that this existential crises that have been personal for me personally, my own life or with our patients, and we deal with people in existential crises all the time. And we watch folks at the individual level or the family level confront their own fears, either by choice or by force, and you see transformations happening, you see expansions happening. And so we get these little sweet little vicarious things all the time through our patients and families.
BJ: And so just has struck me that what’s happening now with the pandemic is that’s happening at scale. We are having a massive shared existential crisis. And that’s terrifying, because existential crisis are terrifying, but we know existential crisis. They have just felt like a secret. You almost wish to have an existential crisis, have an excuse to think and feel about these things, because it’s vital. So, I guess the point here is I feel an opportunity right now, because normally, that transformation happens quietly, knowing it’s not shared. One of the hard parts about existential crisis is that very often it makes people feel very alone.
BJ: Well, here we are having the potential to have all sorts of realizations with an existential crisis, but in a shared way. And then in fact, this could bring new levels of community, new levels of empathy, new levels of shared experience, and can right-size us as a people.
BJ: So I feel this great potential, based on what we see with our patients and families for that to happen in a public way. And so the reason to try to get this into the public discourse was to try to begin helping to catalyze the realizations that happen when you dare to look at something that you’re afraid of.
Alex: Yeah. And as you started off the piece, it can be so easy to become inured to death, and it’s just another number, as you say, like a ticker tape on the stock market, numbers up, numbers up, numbers up again. But who are these people? And it’s so personal for so many people who have lost their loved ones, who’ve cared for loved ones who have died. I mean, I think we’ve all cared for people who’ve died of COVID in our work in palliative care and hospice.
Alex: And that brings us to an experience that you talk about with a patient who, it sounds like she has cancer, advanced cancer, and she talks about how COVID is changed her friends’ perspective and that she seems able to relate to them more because of the tremendous uncertainty about what’s going to happen to all of us and confronting our own mortality. I wonder if you could say more about that experience in that patient encounter.
BJ: Yeah. Well, so, I’m going to change her name. I’ll call her Tina. So, the experience that happened with Tina was on a Zoom visit like we’re talking, and she’s a … the word I should use really is client now, because in Mettle Health, I’m not doing the medical piece, it’s all the nonmedical stuff that I’m wading into with folks. So she’s a client. And we were just talking about her own experience and how she was noticing what used to feel so … She’s beloved, students, friends love her, she’s surrounded by, but there’s an unbridgeable divide oftentimes with folks when it comes to really the personal vulnerability of being frail or dying. And there’s some of that piece that the patient really just often ends up having to walk alone. And maybe ultimately there’s always a piece that they have to walk alone.
BJ: But the aloneness is so much often the problem. I don’t know about you guys, but so often in clinic … many of the things, but when you get down to it, the person just feels so alone, so unseen and unwitnessed, and as though they don’t exist. I’ve had this feeling myself, the feeling of being in saran wrap. People can see you, you can see them, but there’s something that gets in the way that you’re just not quite totally reachable.
BJ: And we were talking about that phenomenon and she was just reflecting, almost in this embarrassed way, embarrassed to say it out loud, because celebrating a pandemic seems kind of crazy. But as we know, this is where language gets screwy. So many of our patients, they’re not going to be like, “Hey, I love cancer.” But in their most honest moments, they will share with us all they’ve learned from their cancer and they wouldn’t have learned it otherwise.
BJ: So it goes with this, in this hush whispered tone, where she was just realizing as we were talking that she felt less alone, less unseen, more seen. And it wasn’t that people were saying different things to her, but they were just holding eye contact a little bit longer, there was a little bit more shared silence, there was a vibe. A vibe, that’s the best way to put it, that they could share, where she felt just a little bit more seen, just a little bit more heard.
BJ: Anyway, it’s just a telling, sweet, sweet moment. And as it goes, like in our work, our goal would be to root out suffering, as it’s not possible as we know, ultimately, but even if it were possible, can you imagine what Stooges we be if we all … The learning that comes from our suffering and from the things that we can’t control is profound and not to be dismissed. And I would be very careful of trying to root out all suffering, because we root out a lot of learning, too.
BJ: It’s a moot point because we can’t rule out all this suffering. But anyway, I’m going round and round in circles here, but somewhere in this mix of trying to find language to respect what pain and suffering and things outside of our control teach us and do for us, without somehow wanting or courting or celebrating the pain itself or overly attaching to that pain. I find it very tricky to describe, but that look on Tina’s face when she leaned into the computer was unmistakable. There was a sweet little wink in her face that I hadn’t seen before. And it was all thanks to this shared pain.
Eric: You brought up the word “crisis.” I’m actually reading a book by Jared Diamond called Upheaval and it talks about nations in crisis … It’s a really good book for anybody who wants to read it. But basically, another way to think about a crisis, it’s a decisive point. And it can go either way, and while there is this potentially fleeting sense that we have that it’s recognizing our own mortality, do you think it’s just going to be fleeting, that it’s just going to go away and we return to the usual? And like for your patient that you were describing, will it go back to just people trying their best to ignore the fact that, including myself, that we’re mortal beings, and it’s so much nicer to think about something else?
BJ: Yeah. Well, I hope not. I’m glad you asked that, brother. I mean, this is my big wondering right now personally. Are we just going to snap back? It’s almost like the financial crisis in 2008. It was such an excuse to learn a bunch of stuff and change some things, but we just snapped so forcibly back right to where we were and clung to that old way even more tightly.
BJ: So the question have we suffered long enough has enough dripped from our control and have enough illusions reveal themselves as illusions for us to actually remember? I don’t know. The jury’s out. But that’s another reason I wanted to write that piece. And I’m glad we’re having this conversation and many others are too is to try to keep it in our field of view so that we don’t forget.
BJ: And you said, something, Eric, which is a tell, get back to thinking about something that’s more pleasant about than our own death. But even as we’re talking, whether it’s the Everly Brothers’ music or own conversation or the poetry or metaphor, actually, there’s something really beautiful about all these thoughts, too. And that’s another thing I’m hoping that corner will turn, is that we don’t really lose this reflexive sense that, gosh, we’d rather be thinking about anything else or talking about anything else, because with a little practice, I think actually we realize there are a few things that are more interesting or more amazing than what we’re talking about, than actually facing the [crosstalk 00:31:58] end.
Eric: Yeah, it’s fascinating, because I think about death all the time in my work. I’m a hospice and palliative care doctor. But it’s other people’s death. And when I think about my death, I still get that feeling inside me, like this is a dangerous place to be. I explore it, I explore around it, and when I no longer can take it, I’ll think of something else. But I would say 10% of the time, it also makes me think take advantage of what we have today. The life around us is really amazing. All of those things I’m worried about, it really doesn’t matter. And just hang out with the family, hang out with my friends. And it does bring some beauty to what we’re all going through.
BJ: Yeah. It’s so very interesting that this is coming along a pandemic, is coming along at around the time of social upheaval, of renewed calls or new calls for social justice. In a time where we’re so divided, I think it’s actually also another reason to put this stuff out in the world right now, is we might say, “Oh, we have so much in common as human beings, black, white, rich, poor …” But even that stuff isn’t so palpable right now. In fact, a lot of the divisions that separate us from each other, what’s so palpable where so much of the focus is.
BJ: So I think it’s also really important right now to name the things that we actually do share, that we actually do share, not just as a pleasant idea, and death being one of them. Not only being mortal, but as human being, having to know you die in advance of your death, I can’t say enough about how tricky that is, and that itself is a bond between people.
BJ: So I think it’s really important to name this actual shared space and to dwell in there and hang out in there before we go back to separating ourselves and distinguishing ourselves from one another.
BJ: Illusions, hey, illusions are fun. Just call a spade a spade. I think it’s important that we let this moment take us down. Let the stuff fall. Let it take us down to the studs so that we can see what part of us isn’t mutable, what doesn’t change, and so that we can see all the stuff that actually turns out we can live without. And we can welcome luxuries back into our life, sure. But just call it a luxury. Don’t call it a necessity. That little distinction is really potent. So we don’t have to come out of this with the life of anesthetic and somehow of keeping ourselves from those pesky illusions, no. Illusions are fun and hilarious. Just call them an illusion, just call them temporary. That’s all I’m asking.
Alex: And we’re coming to the end here. I would love it if you could read the last three paragraph of this before we get there, because so much of your, as I told you before we started, the prose, your writing is terrific, BJ, and some of my favorite lines, I tweeted out one and then Rob Rossick tweeted out another, they were all from these last three paragraphs. I wonder if you could read those.
BJ: Yeah, that’d be my pleasure. And thank you, man. I really like hearing that from you, Alex in particular with that brain of yours. So let’s see here.
BJ: “Beyond fear and isolation, maybe this is what the pandemic holds for us: the understanding that living in the face of death can set off a cascade of realization and appreciation. Death is the force that shows you what you love and urges you to revel in that love while the clock ticks. Reveling in love is one sure way to see through and beyond yourself to the wider world, where immortality lives. A pretty brilliant system, really, showing you who you are (limited) and all that you’re a part of (vast). And as a connecting force, love makes a person much more resistant to obliteration.
BJ: “You might have to loosen your need to know what lies ahead. Rather than spend so much energy keeping pain at bay, you might want to suspend your judgment and let your body do what a body does. The past, present and future come together, as we sense they must, then death is a process of becoming.
BJ: “So, once more, what is death? If you’re reading this, you still have time to respond. Since there’s no known right answer, you can’t get it wrong. You can even make your life the answer to the question.”
Alex: It’s great.
BJ: Not bad. [laughter]
Alex: Yeah. Oh, it’s great. And it really is, as you started off, an encouragement to people to take this pandemic as a moment to remind us of death, and then incorporate that into our daily experiences, because death is around us all the time as you said earlier. A bug on the windshield is a reminder of death, and that we can take this opportunity to explore within ourselves what that means and to come to our own understanding of what it means to die, and to know that we will one day die, and how will that shape the way in which we live, the way in which we relate to others, the way in which we relate to the natural world? Yeah, I just have to say I love that.
Alex: What sort of reaction have you had from others, from patients to this piece in the New York Times?
BJ: It’s been really sweet, I got to say, and it was fun to read the comments in the New York Times, because a lot of people were actually we’re taking the charge, were answering the question for themselves. And that’s really the hope here, is people … So people were taking the bait. In a way it’s the wrong word, but that was just lovely to see.
BJ: And then I’ve heard a lot from patients that they felt that they saw themselves in those words, and they saw something that they have felt put into words in ways that resonated, words that maybe they hadn’t found yet. But that’s my favorite compliment, I guess. People are telling me they could have written it if they had found the words. It described how they have felt in moments of clarity. And that’s been really cool.
BJ: And that’s been coming from patients and families. I mean, one of the tricks here is the subject is interesting. And if you’re not careful, you can bring your intellect to it. But that’s won’t get you all the way there, and in some ways it’s even hazardous. Eric, you mentioned something really important about us. One of, I think, the pitfalls of our work, guys, is we are around the subject a lot. So if we’re not careful, we might fool ourselves into thinking, “Oh, we’ve got this. We understand what this subject … I’m around it all the time. Patients are dying all the time around me. So therefore I got it.”
BJ: Uh-uh (negative), not necessarily. It is a different corner to put ourselves into those shoes. And the hope here would be that this, for our field, that the potential here is to just a little bit narrow the gap between us and our patients and our families, and thereby make us even better at our jobs. But getting these few millimeters of being better at our jobs means we’re going to have to get used to being uncomfortable ourselves.
Eric: Yeah. And I think, Alex said the concept of knowing that we’re going to die, it’s easy. I have that all the time. It doesn’t bother me. Feeling like I’m going to die, that’s the scary part, being willing to have that feeling and sit with that, we bring them to the word “suffering,” and that there is suffering in that. And out of that can come a lot of beauty.
BJ: Amen, brother. Yep. And just one more … I know where we’re trying to wrap up, but I want to also make it clear, because there is a rapturous, exalted side of this very earthly thing. I just want to be careful, too, and just clarify, I can imagine someone hearing this and reading these things and feel like we’re just putting lipstick on a pig or trying to somehow focus on the pretty parts. I don’t think you guys are, but let’s just be clear. The idea is to not polish this subject, but find beauty in the rough. So you’ve got to go through the hard feelings. This is not an effort to keep hard feelings at bay; it’s to go into these hard feelings so that you can see that you’re more than just these hard feelings and these hard feelings become fertilizer for other things.
BJ: So I don’t want to beeline for the pretty stuff and short circuit the hard stuff. That would be an absolute mistake. The point here is to get into the world of the feeling of the viscera, and that kind of pain, that’s where these next level lessons come.
Alex: Yeah. Within the field of palliative care, there’s been some tension around the extent to which we should focus on death. And there’ve some have said we focus too much on death and that palliative care, as you said in the beginning, is really much more about the way in which we live, and still though those people who say by associating ourselves with death cafes, talking about death all the time, it’s not what patients want to hear. They don’t want to hear about death. I wonder if you’ve heard this sentiment or felt some of this pushback, and what your thoughts are about it.
BJ: Yeah. It’s a really important point. I have been saddened by what has felt at times to be a schism in our field, those of us who are interested in death and want to talk about it and those of us who say no, let’s avoid it that’s not where people want … blah, blah, blah. As usual, the idea that if it’s an either/or, I think we should get, not just from this subject and our work, but these times, I think we should be very suspicious any time something is presented to us as an either/or. Either talk about death or don’t talk about death. That has always struck me as a little off, and it’s always struck me off to just say, “Everyone’s in denial, no one wants to talk about this.”
BJ: That’s not been my experience. That’s not the experience of putting this piece out in the New York Times and seeing how people responded to it. I think the more of the truth is there’s a pent up interest and energy around this subject, as people just don’t know how to talk about it, or whether it’s safe to talk about it. So we don’t. And so there’s a complicitness in keeping this subject at bay for way too long.
BJ: So, I am definitely aware of what you’re pointing to, Alex. I think it’s on us to mature beyond this idea that it’s either talking about death or not talking about death, but rather how and when, and how to textualize it, texture it, and to put ourselves into that and what piece to own versus foist on others. I don’t know if that answers your question. I feel it’s important enough for my own sake, I mean, I don’t practice clinical palliative care any more. In some ways I’ve stepped a little bit outside of medicine to own this vantage point that feels right to me. Whether that’s chafing the field or supporting the field, hopefully it’s at least challenging us to go a little bit farther, a little bit deeper. That would be my hope.
Eric: Well, with that, I think it’s a good place for us to wrap up on this discussion. We’ll have a link to BJ’s New York Times article on our GeriPal show notes on our geripal.org website, so really encourage all of our listeners to read it. It’s amazingly poetic, and I think the other thing, let’s maybe go back to the song. People like listening to sad songs occasionally, and it’s the topic at hand, that sometimes it’s healthy to actually think about it.
Eric: So, Alex, do you want to go back to, is it the Everly Brothers?
Alex: Everly Brothers, Ebony Eyes. Here we’ve got the spoken word part and the tragic ending.
Alex: (playing guitar / talking) The plane was way overdue. So I went inside to the airline desk and I said, “Sir, I wonder why 1203 is so late?” And he said, “Oh, they probably took off late, or they have a, they’ve run into some turbulent weather, and we had to alter their course.” So I went back inside, and I waited at the gate, and I watched the beacon light from the control towers as it whipped through the dark ebony skies, as if it were searching for my, my Ebony Eyes.
Alex: And then, and then came announcement over the loudspeaker, “Would those having relatives or friends on flight number 1203 please report to the chapel across the street at once?”
Eric: Well, interestingly enough, we lost BJ; his internet connection died, which was, I guess, a metaphor for the topic at hand. While his internet connection died, BJ is still very much with us. So we want to say a very big thank you to BJ for joining us today, and a big thank you to all of our listeners for continuing to support the GeriPal podcast, and Archstone Foundation for your continued support.
Alex: Thanks, folks.
Eric: Good night.