BJ Miller: An Expert on Death Talks About Life
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Why are we so bad at death, dying, dealing with it, talking about it? Dr. BJ Miller is a palliative care physician who has spent his whole adult life trying to figure that out. His own traumatic experience has informed his ability to know compassion, see the far grander picture, and help people sort out the blurry lines between care, pain and reality. In college, BJ lost both of his feet and one hand in a tragic accident, and despite becoming a triple amputee, he still returned to university and got his medical degree. Now he’s a doctor who helps people deal with dying, and he’s got a lot of thoughts on the matter….we talked about art and beauty as therapy, mindfulness, coping skills, and a topic so needed right now: how independence is really an illusion. This is a really great episode for people who may be dealing with a recent loss, or an imminent one. Enjoy….
Episode 3 of The Art of Asking Everything: BJ Miller: An Expert on Death Talks About Life is out now wherever you get your podcasts.
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https://forum.theshadowbox.net/t/episode-3-discuss-bj-millers-a-beginners-guide-to-the-end-here/5835
Show notes:
Description
Amanda Palmer presents an intimate conversation with BJ Miller. Recorded May 9th, 2019 in Marin, CA.
BJ currently sees patients and families via telehealth through Mettle Health, a company he co-founded with the aim to provide personalized, holistic consultations for any patient or caregiver who needs help navigating the practical, emotional and existential issues that come with serious illness and disability.
At the age of 19, BJ was electrocuted and lost 3 of his limbs. This accident led him down a path of studying art history and eventually towards his career of palliative care.
His 2015 TED Talk, entitled What Really Matters at the End of Life?, presented BJ’s perspective on death.
BJ is also the subject of the 2018 Netflix documentary, ‘End Game’.
His book, A Beginner’s Guide to the End: How to Live Life to the Full and Die a Good Death, was released last year. The Washington Post called it,“A gentle, knowledgeable guide to a fate we all share.”
BJ currently sees patients and families via telehealth through Mettle Health, a company he co-founded with the aim to provide personalized, holistic consultations for any patient or caregiver who needs help navigating the practical, emotional and existential issues that come with serious illness and disability.
We talked about art history as therapy, living life as an art composition, the relationship between limitations and creativity, making the best of your situation and the allusion of independence.
@bjmillermd and @Mettle_Health on Twitter
TED:
https://www.ted.com/speakers/bj_miller
A Beginner’s Guide to the End – Practical Advice for Living Life and Facing Death:
www.abgtte.com
http://www.mettlehealth.com
www.thecenterforyingandliving.
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CREDITS:
Thank you so much to my guest, BJ Miller. If you are interested, please, find his book A Beginner’s Guide to the End. Our interview was recorded by Erin Tadena at Laughing Tiger Studios in Marin, California. The theme song that you heard at the beginning is a song called Bottomfeeder, from my 2012 crowdfunded album Theatre Is Evil. I would like to thank Jherek Bischoff, my soul musical brother who arranged the inbetween-y orchestral music that you heard in this podcast. Those are all little snippets from my latest album, There Will Be No Intermission, which you should listen to if you like really sad songs. For all the music you heard in this podcast, you can go to the new and improved amandapalmer.net/podcast
Many, many, many thanks to my podcast assistant, social media helper, and additional engineer Xanthea O’Connor.
The podcast was produced by FannieCo, and as always, huge thanks to everyone at Team AFP global: Hayley, Michael, Jordan, Alex, thank you guys for everything you do.
Extra special thanks to Nick Rizzuto, Brittney Bomberger, Allie Cohen, and Braxton Carter.
This podcast would not be possible without all of my patrons, right now about 15,000 of them. Please go to my Patreon and become a supporting member, and get all sorts of extra stuff including live chats that I am doing with all of my podcast guests, and I have been blogging up a storm over there, so you can also see pictures, and get the transcript, and notes, and all sorts of good stuff.
FULL EPISODE TRANSCRIPT:
Amanda Palmer
One of my favorite things that I read that you said in an interview from a few years ago, is that you hate being a poster child.
Yeah.
Amanda Palmer
I mean, I think I get what that means. And I can relate. You have to define and describe yourself for people and you have this physical attribute that’s really obvious.
What do you find that brings up when you have to describe yourself to people?
BJ Miller
Because the issue, my disability is so obvious, it can be hard for people to see past. It’s dramatic. You don’t easily forget the one-limbed guy, you know? So it just means it revs up the project-o-meter that we’re all throwing things at each other all the time. But I feel now like I’m basically a big billboard walking around that people throw stuff at. I mean I take that seriously. I take on my symbolic. I think we all have a sort of a symbolic life that people see in us and take from us and that we are tokens for various things, for various people, not in a bad way. And I just want to be careful to not, I don’t want to take that seriously and not over ramp it up because it could be very easy for me to just stop with my disability in some public way. That’s a big enough subject. It’s interesting enough for people. I could just be that, just be that disabled guy. Growing up with a disabled mom, I saw how that could happen. And being in rehab with and playing disabled sports. I saw that happen a lot of people and people became flattened. It’s kind of easy to forget parts yourself, for underdeveloped parts of yourself.
Amanda
Well if have one giant attribute of your identity that stands out, you can become only gay or
BJ Miller
Right. If I had huge tits, right if I were just I’m all tit, right? You know, that happens very easily.
Amanda Palmer
I’m sort of struggling with that at the moment because and I mean, my way of going into it is probably your way of going into it, which is I just fucking talk about it all the time. With this album and on this tour, especially because of what’s going on politically in America, I have become the lady who had three abortions. And because I’m being really open about it, and I’m going around and I’m talking about it, but there’s also this part of me that’s really squicked by being the abortion lady. Because it’s this one strand of my life. It’s real. It’s true. It’s useful, just like this is a strand of your life that’s useful, but there’s a part of me that just even talking about it with you now sitting here I’m just like, like it’s just not.
BJ Miller
And not because you’re ashamed of it in any way, just because it reduces you?
Amanda Palmer
Yes and because, I mean, I don’t know how you feel about this stuff in this regard, but I want people to be able to see through that to the giant hall, to like the 12-dimensional human being that I am who happens to have this one attribute: I had a bunch of abortions. I also just went through a miscarriage. I’m a weirdo artist who decided to take those experiences, mine them, harvest them, put them on a stage, talk about them, because I thought that the act of doing that would probably help other women and help other people. But I almost didn’t. Because you know, unlike what you’ve got going on, you don’t have to talk about your abortions. You could just stick them in the closet and get on with shit and no one walking down the street would go: Oh, look, abortion lady.
BJ Miller
I get a version of it, for sure which is why I also think what you’re doing and frankly what I’m doing has some courage to it. I mean, I’ll just speak for myself. It does pull me out of my comfort zone to be sort of out of the closet with myself in ways. It does, to kind of subject myself to the narratives of others in a big way. I do feel that that is a little bit, it could be either very narcissistic and self-aggrandizing, but I think the way we’re wired it feels actually a little scary and means that we’re whipped around by the feelings and beliefs of others, in a pretty extreme way. And in that way, for me, one of the ways I feel good about all of this is I actually, it does feel kind of ballsy. It feels like yeah.
Amanda Palmer
Well, you’ve said that you used to cover everything up. And then you got to a point where you realized I actually I, I’d love if you would tell the story. You were actually influenced by architecture and art.
BJ Miller
I was injured age 19. Sophomore year, right. So in November. So when I came back to school, the following fall, I had to kind of declare a major. And I had been studying East Asian studies, blah, blah, blah. And it was headed in one direction, but while I was out, being a patient, art really ascended in my view, in all sorts of ways. I can talk about that, but essentially, for all those reasons I chose to study art history as my major for therapeutic reasons. Like it was explicitly me trying to use what remained of college to help me learn how to cultivate a way of seeing, a way of looking at the world. And it felt like playing around with art would be a very useful way.
Amanda Palmer
And this is while you were at Princeton?
BJ Miller
Yeah. Yeah. So it felt like this would be a very useful therapeutic skill, not a recreational cocktail party skill, like art history can be. No, this was really meant to learn from art and the artistic process, like how I might apply that to my own life. So I was explicitly seeking that. I’ll give myself credit for that. That was a good decision. I mean, that was a that was a smart move and it really helped.
Amanda Palmer
Did anybody guide you in that direction? Like what happened between I need to pick a new major and oh art history?
BJ Miller
Sitting in the hospital, sitting in a burn unit, with a lot of time on my hand. Time sitting there and you know, you just you’re running through all sorts of thoughts that really now I have the language for. It really relates to identity. Like this was a shock to my identity, like who the hell was I now? I wasn’t the guy who was rowing crew anymore. I wasn’t the six five dude, you know, they’re just, it changed my architecture, at least. You know, I knew that persona didn’t reside in someone’s feet. It’s not like I knew enough from my mother’s example and just from being in this world, my mom had polio and uses a wheelchair. You met her?
Amanda Palmer
I loved her mom. Sad that your mom’s not here actually I was hoping she could come to my show.
BJ Miller
That it would be so awesome. I would love her to. She’s in St. Louis though, but I love that you guys met. That was very moving for her and for me. It was so sweet to meet you after like, like moments after coming off that Ted stage by the way, and I know what a weird feeling. And to be received by you and Neal with compliments and love was really kind and helpful.
Amanda
Yeah, well I had also gone through the weird Ted –
BJ Miller
Hole.
Amanda Palmer
Yeah, because I gave the like, you know, I was like the belle of the ball at TED for three seconds. And I remember it being really disorienting.
BJ Miller
That’s the word for it.
BJ Miller
Yeah, no all bad just disorienting.
Amanda Palmer
Disorienting.
BJ Miller
And it was very helpful to find someone like you who could kind of help ground me in a kind way and help me feel like what I had just done was alright, and anyway, it was you really did me good. And my mom too. So thank you.
Sitting in a burn unit for months. Right? And you have all this time to think about what am I now? Am I less of a person? I have fewer body parts less. You know, by some measure, I’m less, you know, by around the language of disabilities all about being less than. I had a headstart thanks my mom. I knew that that was all, could be potentially a bunch of bullshit. It was very ripe to be revisited. So I was trying to revisit it, trying to explore how I could see myself differently. But between the pain and the newness of it all, I wasn’t getting very far. But I was sort of now imagining coming back to college. I knew I wanted to get back on that horse relatively quickly for a number of reasons. So I wanted to go back to school that fall, I caught up with my class, I wanted to graduate with my class. That was important to me for a number of reasons. But I was kind of ramming myself forward. The hunch was, physically I should get back on this horse because the longer I wait, the harder it’s going to be to do that physically.
And that the emotional stuff, I knew I wasn’t emotionally ready, but I knew it wasn’t going to be possible, but for me to be emotionally ready, that it was going to take years and so I should might as well just start somewhere. And at school, I had friends. I had familiarity, etc. So that was the reason to get back to school. But then this question of okay, what do I do with college? In a way, part of what you’re going through when you come close to death is this sort of re-appreciation of what you have. And I was really trying to love what I still had left. Really trying very hard because I knew that was a good idea. And I wanted to love what I had left. Didn’t really feel it, but I wanted to get there. So all of a sudden, studying Chinese language and East Asian Studies just seemed less interesting to me. So I sort of there was a void. This question of perspective. Perspective was the thing that I needed to find a way to look at myself, see myself in the world that I could love. And that was, that was the word perspective that kept coming up. And I had, so when I was thinking about all this stuff, I knew, I had been into music and art in a casual way my whole life. And always been interested in why people make art and that question sort of set up like why did what makes a human being a human being Why do people make art? Why do we refashion our experience? Why do we play with our lives the way we do and create from them? Why do we represent our experiences? That had been a casual interesting question, but now this was very much what I was asking myself sitting in a burn unit bed.
And then I had my buddy Justin. So Justin Burke was my roommate in boarding school. And the closest thing I have to a brother. He’s a wacky weirdo, smart, goofy, lovely guy. And he was a year ahead of me. He was at school in Britain, and he was studying art history. And so he would come visit me in the hospital, and we just get in these wonderful conversations about art. And I just was very easy to see as he was talking about art, the relevance to my life became very clear. So I was really talking with Justin in thinking through why people make art and seeing how much freedom there was in the creative process, but also as the viewer, as the receiver of art, to look at it differently, to see it differently, to challenge my own conventions. All that was lighting up, basically in casual conversation at my bedside in the hospital with Justin.
Amanda Palmer
Do you have any memories of experiences when you were in the burn unit of experiencing art, whether it was music or looking at anything that spoke to you?
BJ Miller
Almost in a negative way. It was sort of like, it was such, the burning is such a is the maximally sterile environment. It’s sort of like it’s a, it’s like a concentrated version of all that’s sort of horrifying about a hospital in concentrate, because sterility is the thing. There was no window in my room. As this happens, right? The negative examples can be so potent and for me, the negative example was now I was starved for art. I was starved for any aesthetic experience.
Amanda Palmer
There’s no beauty in there.
BJ Miller
Zip. Zilch.
BJ Miller
There was plenty of beauty in human behavior, but not in a material setting, set and setting.
Amanda Palmer
How long were you in there?
BJ Miller
Burn unit for about three months or so and then step-down unit in that hospital for a couple weeks and then I flew back to Chicago for inpatient rehab. I was in New Jersey and then Chicago for rehab for about a month or five weeks in inpatient and then home for the rest of the summer
Amanda Palmer
But three months is a long time to be in a windowless room with no art.
BJ Miller
It is. I mean it’s a prison you know and you really don’t you can’t move much. It is it is a hell. There’s a hellish nature, the burn units are classically hells on Earth. I mean to work in and to be in. The screams coming from patients rooms, going to the tank room to be debrieded every day. I mean, it’s just… so at one on the one hand, you have all these obnoxious signals of the material world, your body screaming at you. You’ve got this absence of any beauty whatsoever. And of course that’s hard and sad. And as a negative relief, it really makes you appreciate when you’ve got. So I remember the first time I was went from horizontal to vertical, just that was an amazing experience. Just to reorient my line of sight from you know, from supine to sitting up. Just that alone was a magical experience. So like the fun part of all this is it reacquaints with the most basic stuff in life, your vantage point, and how the difference that makes. Feeling gravity was I was all of a sudden fascinated by gravity. I felt like I weighed 1000 pounds. Just because I hadn’t fought against gravity for a while. I mean, just little shit right was helping me be fascinated by the material world again, and be so clear at what a balm beauty could be because I was starved for it. Does that make sense?
Amanda Palmer
It totally makes sense. As the person who’s thought a lot about art and music, why we make it, why and how we receive it. And just how we feel about it on both sides. And the questions and the answers all get more complicated the older I get. They just don’t get simpler. I mean, even just lately on this tour, using, feeling like I can use music as a kind of a useful tool that actually just winds up landing on a person because they’re sitting at a show or they’re listening to a record and they’re weeping because it’s just speaking so directly about loss or directly about abortion or directly about you know, and I, there almost is like a laziness in that, you know, I feel like I can’t, I can’t win. If I were a better artist, these things would all be a more lofty and indirect and I would be speaking more universally, and since I’m like this lazy fucking folk singer, I’m just like, and then my friend died and everyone’s like, no, no your friend died. When I was writing obliquely, and poetically, I thought that I wasn’t a brave enough songwriter, because I wasn’t able to say things directly. So like most artists, I’m just constantly flagellating myself with a whip of doom and it’s fine. You chose art history like partly because of the influence of your friend and partly because that door opened and it called somehow, but you weren’t called to be an artist, which is interesting to me. You didn’t decide to go into like studio art or be a sculptor, you decided to go into art history appreciation.
BJ Miller
Yeah. Because there you go That was the word appreciation, like learning how to see not more than make it in a way of course those are all related but and some insecurity about feeling that I had any talent to share anything um, if I felt like but really, actually what I think I was doing, I mean, yes, why people make art, the act of appreciation, those were front and center for me and so the observer role was very relevant. But also part of this breakdown, the sort of the breakdown before building up, the breakdown had me made like I was saying, so reacquainted with the material world and its most elemental basic, like you know, gravity physics is very surface, just liquid, you know just basic stuff. I was so re-enthralled with the raw material of life, that I was explicitly in my mind, I wouldn’t have said it out loud because it sounds goofy but explicit in my mind, I was now going to approach my life, would borrow from the artistic process and look at my life as an artwork, as a composition.
Amanda Palmer
Good idea.
BJ Miller
Yeah it was a really good idea. Because it’s playful. You can change it. So it was yeah, it was it was a really useful way of looking at it.
Amanda Palmer
So you would have been what like 19?
BJ Miller
Um hmm.
Amanda Palmer
So when you were headed into art history, did you have an inkling of and then dot.dot.dot. I’m going to dot dot dot?
BJ Miller
No no, no.
Amanda Palmer
You’re just like, I just, I’m, I just went through this insane thing. And now I’m going to Princeton, I have to pick a major and this is the only one that looks like it has real meaning?
BJ Miller
Yeah, pretty much. I mean it was either that or philosophy. And plus I was just very busy with the act of getting through the day. So one of the gifts of the accident was that for someone who had sort of absorbed a sort of driven nature, suburban white guy with a you know dad who was successful by some measure, all that stuff, and being in a place like Princeton, you absorb a sort of a future orientation. You know, I’m going to do this on behalf of this future thing. Always. You know, I’m taking this test so I can get into Princeton. I’m doing this.
Amanda Palmer
And be successful.
BJ Miller
Yeah, exactly. You know, I just sort of absorbed, inherited that mode. And one of the great gifts was the accident just forced me, just made much thinking about the future not really possible. It wasn’t clear I was gonna have a future for a while and then I just couldn’t imagine the future, so then it made me very one-foot-in -front-of -the-other-get-through -the-day as a creative act, but just get through your day. And so I kind of inched my way to graduation. It made graduation day terrifying because I realized.
Amanda Palmer
Now what?
BJ Miller
Now what? And I hadn’t let myself even think of that because it was enough to get through. Right? So it made graduation terrifying. But it really forced me in a way that I found so useful and has since become sort of very vogue, which is mindfulness, which is being present, which is being in the moment. I didn’t choose that, I just couldn’t do anything but that. It was very useful. It was very helpful.
Amanda Palmer
So what did you do? You graduated and then you looked around and what happened?
BJ Miller
So fortunately, you know, one of the things that maybe a lot of folks who deal with illness, maybe don’t say very often, but on some level, you’re aware that you’ve got a great scapegoat. I mean, I’ve got a great excuse. You know, my excuse right after graduation, I knew I needed some more surgery on my legs, that offered me with a three-month kind of recovery period
Amanda
So do that.
BJ
So I’ll do that and that bought me some time. And people will take it easy on you, you know, you’ve got this great excuse. You have to be careful because you could, you could grind yourself to a halt with all this excuse, but sometimes you kind of let yourself use it and my excuse at graduation was, oh shit, well, I can’t think of the future yet, even still, because I got to get through the surgery. And then that sort of delayed and deferred things. Back home in Chicago now, on my parents couch, I had some surgery, I couldn’t wear my legs for a couple months so I’m on my parents couch, thinking now letting myself think about the future. And so I knew I wanted to do something with these experiences. They were too major for me to try to ignore and I wasn’t buying into this idea that you overcome your disability. I knew I wanted to use this was very rich in the ways we’re talking. It had pointed me to new zones, things that I would never have chosen both so grateful to have done. So I knew I want to work with it. First, I thought I’d go in this or disability advocacy work. My mom had done a little bit of that. And we knew folks in Chicago, I did a little bit of that. And I did arts advocacy in Chicago, and I worked in the Art Institute in Chicago in the archive for the fall, did some disability advocacy work sort of informally, and then I would do that a little bit later on too. The advocacy work was I felt sort of like an activist heart. And I felt like the world needed more art. And I also felt that the disability world was actually a creative world, just needed to be reframed as such. And so I was trying to find some nexus there.
Amanda Palmer
Of all of the gifts that Ted has bestowed on me in weird guises, my understanding of disability as art came out of Ted, I mean, just seeing enough talks and enough people doing enough things in enough areas where I had to admit my own ignorance, pre Ted, and then after Ted going like, wow, there’s this whole world of insanely creative, open-minded artistic directions of human body and experience that I hadn’t even thought to ponder. Because why would I cause it hasn’t touched my life.
BJ Miller
Yeah, you need a reason to? Yeah, isn’t it fascinating and that limit and that relationship between creativity and limitations, like the fact that we have limitations of what gets us creatively thinking, find workarounds, work throughs, reframes. So the relationship between the limitation and the creative act is so
Amanda Palmer
Yeah, and I actually have been finding this subject really fascinating lately because I’ve always had an inkling that limitations would help my art. And then I just started saying fuck it like I’m not getting stuff done. I’m just going to start applying these insane limitations and it’s worked out beautifully. And I actually did my first big podcast interview was with David Eagleman, do you know him? He’s a neuroscientist and writer/researcher and we had a great talk that I’d love to send you about art and time.
BJ Miller
Oh, sweet
Amanda Palmer
And process and it’s right up your alley, and you would love it.
BJ Miller
Great.
Amanda Palmer
So let’s, let’s rewind because back to the original question, half an hour ago, which was there was a time where you felt like you wanted to cover yourself up and then what happened?
BJ Miller
Okay, so right, thanks for that. So we’re retrospectively describing a process that was very full of peaks and valleys and lumpy and took a while, but so early on, I knew I wanted to not be ashamed of my body. I knew I didn’t really need to be ashamed my body, but I knew I was ashamed of my body. I knew I was embarrassed. I had this sort of this. It really looked like my arm at the time just with a skin graft and some open wounds. I mean, it just looked like a slab of meat hanging off. It was just hard for me to look at. This is also different. This is 1990/ 1991. This is right around the time where the Americans with Disabilities Act became law. So before that, disability for people that (are in) wheelchairs or assistive devices to expect to get into rapid transit on a bus or into an airport or into a store, you had no legal protection.
Amanda Palmer
Or a concert.
BJ Miller
Yeah or a concert. You’re left to the charity of others, you know, and that just begets pity and all sorts of shit. So this is right around, this time, but just right when they’re becoming legal protections and disability was really conceived of as a civil right. Be in the world. You know. I mean, it used to be laws in the books in Chicago in early 20th century where you could be arrested if you were seen with deformities in public. I mean, just crazy ass shit.
Amanda Palmer
Wow!
BJ Miller
Nuts. I’m kind of going to my own maturation process. Society is also in the midst of that same maturation process. I’m still caught with you know I was mildly repulsed by my body then too. I mean I looked absurd. I’d lost gazillions of pounds in the burn unit. I was still swollen in some places and atrophied in others. Just not a great look. And you sweat like a fiend as an amputee. I was just I would wear a sock on my arm to cover the skin graft. And the legs that I was given. The standard was to put these covers on the legs. These foam covers that more or less take the shape of a leg and more or less have a skin-tone color, like they have like four or five to choose from. You can be black black, or like or white white and some things in between. and you’re never fooling anyone.
Amanda Palmer
Foe legs.
BJ Palmer
Yeah, they kind of hold the shape of a pant, which is kind of nice. But they’re not fooling anybody. It just seemed kind of grotesque, really. But I that’s what I got from the process. That’s what I was wearing. And on some level, I was grateful for the silhouette. The silhouette looked like a normal leg. Mildly freaked out by it, but also mildly hiding behind it. Flash maybe a year ahead, I’m back and now I’m school, in an architecture history class. And we’re studying Louis Sullivan and we’re talking about how he and others began to strip all the applique off of buildings and all the ornate stuff and the things and get to structure that had been hidden and covered up with all this appliqué. To revel in the truth of the structure itself, in the material itself, not pretend it to be otherwise. I remember sitting in that class, I’m like, hell yeah, right. There it is, man. And that was so right on. You know, kind of I had a sense, but hearing this and seeing it lauded by this professor in this beautiful imageries and something now that they’re teaching us, and it seems so incredibly relevant to me and just humans in general, like celebrate what the hell you’re made of, who you are, period, whatever the hell it is! What a wonderful message and so that day, so it was still slow, but I began by I moved from a white sock, this sort of this orthotic sock on my arm to I started wearing like Paisley’s and Argylls, and like, fashionable argyle socks on my arm. So I was starting to play with it a little bit. I was still kind of freaked out by this, but I began to play with it. That was so therapeutic. This thing that you have to wear because you’re embarrassed versus this thing that you kind of get into. Like, that was a huge thing.
Amanda Palmer
You jump from medicinal clothing into fashion.
BJ Miller
Yeah. And what uh, that was a such a lesson in that too. Why the hell do we like all adaptive equipment, I mean we use the phrase orthotic shoes to describe ugly shoes? Like, it just seems so silly and anti-therapeutic? Like if you’ve got to use a wheelchair, might as well play with that wheelchair and sex it up.
Amanda Palmer
You know what’s so interesting here is the paradox between what you’re talking about experiencing in the burn unit. Right, like a total lack of ornamentation. But then the freedom on the flip side of the same coin, like the freedom that can be found in lack of ornamentation. And a lot of it is like about choice.
BJ Miller
Choice. Totally. Absolutely. It is. Yeah, it’s a very important point. Feeling agency again, choice again, freedom again, was exactly the things that had been felt lacking. I was just aware of what I was losing what you can’t do anymore, all that stuff. And to begin to feel agency again, even on small stuff like an argyle sock, you know, it’s beautiful and super potent. And then and from there, you can extrapolate so broadly, so within a couple of weeks or months, I finally pull I realized I didn’t the foam covers on my legs were not structural. I just pulled them off. That day was a huge day for me.
Amanda Palmer
And was it kind of scary, because you also you’re always having to consider how you’re seen.
BJ Palmer
Yeah.
Amanda Palmer
I find this conversation with you so interesting, because you’re a man. And women get trapped in this sort of cycle of like how we have to present and it doesn’t sound that dissimilar. I mean, there’s always scale and everything’s relative, but like, walking around with hairy legs is similar because there’s a choice, but there’s also the choice of like dealing with the person on the subway, who’s going to say something, or the child who’s going to point at you? And you know, I just got a tweet from a woman a couple days ago who’s like, ah, like it’s so liberating not shaving. But these 10- and 12-year old kids followed me down the street the other day to video my legs, jeering at me. I’m like, actually, you can probably relate. It’s because your body is in conversation with the subway. Your body’s in conversation with the world and the people that you’re passing.
BJ Miller
Yes. And just like we started our conversation, I mean, we all project, we all receive projection, but this is sort of a this takes it to a kind of another level and the expectations of others and what’s considered normal and the standards and blah, blah, blah, blah, blah. One of the great gifts of course, is once you join the ranks of the other like, that’s what I did. I went from white, Episcopalian, Ivy League, I was boringly standardized as can be.
Amanda Palmer
Yeah, I grew up in that same town by the way. I mean, it was in a different state, but at the same time.
BJ Miller
But it’s the same thing. Yeah, you know the thing, right? And so here I am going from this standard to the other. And that’s a painful process. But if you can withstand it and if you can get support through it, it’s incredibly a liberating process too. And yes, you have to deal with the stares and jeers of others. But once you kind of get there organically yourself, then that becomes another thing to play with, and you realize they’re learning through you. And what was also true too, people were staring at me, with or without the covers on my legs, with or without an arm.
Amanda Palmer
So why not be shameless?
BJ Miller
Yes, right. Either way, I was going be feeling weird. Either way, I was gonna have pain. Either way, people are gonna be staring. So, if that’s the case, there’s no code to crack here, I might as well find a way to kind of play with it.
Amanda Palmer
Because you have so much experience now as a doctor and as someone who works in hospice, and so is around people who are broken open and sharing all the time. It’s not like you’re working in a bank. You now have 30, almost years of perspective on this, right? When you look back at where you could have stumbled and just taken a left instead of a right or vice versa. And I have a feeling some of it has got to have to do with your mom. What do you think were some of the just basic ingredients that gave you the insight and the fortitude and maybe even like the privilege to be able to choose and get out and get here that you might not have had?
BJ Miller
There is an element of privilege to be at a place like Princeton, to have a course catalog that, where to have a choice of studying art history. I mean, that in seeing it as a therapeutic opportunity and blah blah. There is privilege that sets up even the thought process that would allow that to happen. That is for sure true without a doubt. But at this point I’ve lost track of where I’m lucky and unlucky. I feel like I’m just, I’ve got a pretty good helping of both. I just did need to acknowledge that. Always the charge I think is for us to all make the best of whatever we’ve got. Life is so treacherous. There’s so many ways to fall. There’s are so many ways to go wrong quote unquote, and so little control, but where we do have control should be taken very seriously.
I neither abdicate control nor do I clutch it. I like to think that I’m working towards a healthy relationship of using it when it’s real and letting go of it when it’s not. So I remember early on one of the first sort of crossroads moments as I had joined the ranks of disabled, the pity thing. It’s a little seductive, because you certainly are aware that you’re pulled out of the normal ranks of daily life as you used to know it. And the shit you’re putting up with, the pain you’re experiencing. You know on some level, you’re like you’re God damn right I’m special. Like, on some level, you’re aware, what you’re going through is pretty big, maybe even unique? Probably not. There’s a temptation to absorb the cues that people are throwing that somehow you are special, that you are different. I knew enough to follow that logic is a little far down the road, if you follow that thinking a little farther down, and again, thank God for my mom and all I learned from her and just having basked in the question of disability my whole life. I knew that that was a trap. I knew that was a trap, because if you absorb, yes, I am, I am special, I am different. I am unique. If you absorb that, well then, if you’re not careful, then you’ve just invited so much isolation into your life. And you’ve exempted yourself from the rules that affect other people. And so you’ve pulled yourself out of the world. You know, you’ve removed yourself. Or let yourself be removed. And that was a normal for disability forever, like we would warehouse people. There would be pity and charity involved. But let’s just get them out of sight. Let’s warehouse people.
Amanda Palmer
Well, it’s almost like we need two words for unique. There’s the unique that is beautiful and that captures all the confidence of awesome uniqueness. And then there’s the unique of above and apart. And it’s almost like we want two words.
BJ Miller
Yeah, I totally agree.
Amanda Palmer
Because it can be a blessing or a curse.
BJ Miller
So the language I came to try to reconcile your point — such a good one — is that we’re variations on themes and that we can play with these variations, that we’re still limited by default laws of nature and we still have physiology to deal with and blah, blah, blah. But within these parameters, there’s an incredible freedom. It’s like music, perhaps I mean, there are only so many notes, but you can put them together in all sorts of ways. And you can make a special piece of music, right? That doesn’t sound like anything else, but it’s still a piece of music.
Amanda Palmer
Well, and this is sort of like the point of life at the bottom of everything, which is we are all the same.
BJ Miller
Yeah.
Amanda Palmer
And completely unique.
BJ Miller
And totally unique.
Amanda Palmer
And it’s a fucking paradox,
BJ Miller
Right. And the problem there is not so much reality. The problem there is language for my money.
Amanda Palmer
Language is just, We’re so bad at it.
BJ Miller
Yeah, we just don’t have enough words for what we’re actually talking about.
Amanda Palmer
No, it’s incredibly limited. My least favorite is love. Just fucking hate it. I mean, and I love it. And I love love, but I just hate how clunky that word and concept is.
BJ Miller
How much stuff hides in there under the banner of love too like when people mean incredibly different things by that word, but that one word, we have one word.
Amanda Palmer
We’re bad at language. Poor humans.
BJ Miller
Well, that was my senior thesis by the way.
Amanda Palmer
Let’s all stop talking by B.J. Miller
BJ Miller
Pretty much man. My senior thesis was on this because this is so apropos of what I was experiencing, this whole conversation and so to play it out as I got father, so at Princeton, you have to write a senior thesis, you have to. It’s not an honors thing to graduate; you have to write an original piece of work. So my original piece of work was to write about music’s influence in 20th century visual art because I was interested in how these cross pollination things happen, and how to break sort of the dogma of particular arts and sort of see the interplay. The subtext of the senior thesis was, how lame languages, how lame words are, how inadequate words are and how silly the process I was involved with studying art, visual art and sound art and trying to ram all that expanse into these stupid little words as sort of my little there
Amanda Palmer
And there you are trying to write about it.
BJ Miller
Exactly. So my sort of like, undergraduate sense of irony, everything was to kind of, I wrote this thesis on this subject and was constantly sandbagging it myself, like constantly torpedoing it to prove the point that language is so flawed and that this enterprise of trying to talk about art was so dumb. So because art was exactly that was freed from the limitation.
Amanda Palmer
Did you call it, burn this thesis?
BJ Miller
I should have. I should have. It just ended up being. It was very much a B effort.
Amanda Palmer
From that gigantic thesis, if you could share one thing, one musical architectural conversation that is unique and edifying, what would it be?
BJ Miller
The subject was too big for one paper, so I just picked some archetypes. So one archetype was Picasso who used music as sort of iconography, you know, so you would see a mandolin in his artwork. So he was using music as an object in a way and he painted that. Music as icon. Second group was Kandinsky typified by Kandinsky who in a synesthetic kind of way was trying to achieve through visual art what music achieved for him. He was trying to paint sound. That’s how he talked about it and so music as this inspiration, this this mega source. And then the third chapter was music and visual art as part of this sort of sensorama, this sort of aesthetic explosion and that was Disney, Fantasia. So, Fantasia was meant to be like the original conception of Disney was like he was going to have all these theaters decked out with a very special sound system. He was gonna have people bringing flowers.
Amanda Palmer
Smells?
BJ Palmer
Yeah, exactly. You got it all through that. Yeah, so it was meant to be this sort of sensory orgy.
Amanda Palmer
Did you drop acid before or after accident?
BJ Miller
Well after, oh, yeah. Did I drop acid before oh yeah yeah, the summer before. So it was the summer between freshman and the sophomore year of college, I was at Chinese summer school in Indiana University. And I made a good buddy there and we dropped acid and went to the shopping malls and watch Gremlins 2 a 1000 times.
Amanda Palmer
Ooh. That’s a bad acid movie.
BJ Miller
It was wild.
Amanda Palmer
Think of all the movies you could have picked.
BJ Miller
Well, we didn’t have much choice in rural Indiana, but so the summer before my accident, I did
a little bit of acid in some sense.
Amanda Palmer
As someone who did a lot of psychedelics, especially as a teenager, not so much anymore, I remember looking at our, like, I remember looking at Nude Descending a Staircase on acid, and going like, oh, I get everything. This is music. This is what music is. And we just have these clunky words to describe everything, but whatever. I feel like I am really starting to understand at 43 how beautifully galvanizing loss is. Outside of the sort of cliché that you would see on the side of a mug, like I actually feel like I get it now, having gone through, especially the loss of my best friend and he fought and like and there’s that language again, you know, he went through a four-year cancer story of ups and downs and mysteries and surprises including being in a bone marrow transplant unit for a while. And I was helping take care of him and I went through the whole journey with him. A few months after he died, my first child was born. And then I had a miscarriage the year after, well I guess Ash was 2. And that experience in particular, sort of changed my life because I just never expected that an experience like that would be a gift. I would just assume that a miscarriage, like anything, would just be shitty, but I wound up being alone. And it was Christmas day, and I just had to deal with it. I just sort of found this inner confidence and fortitude that I think had sort of been gradually built because of Anthony’s death because of going through childbirth with no drugs, because of this, that and the other thing. It sounds weird to people, but it was actually, it was just a really beautiful experience to see what I could do and to see what I could see with my own eyes, feel in my own body, and just deal with. It changed my perspective in a big way. I started thinking about art a lot. And also not just about art, but about artists. And what we know and what we don’t know. And I think what all artists kind of intuit is what you do learn when you are forced to learn, because you wind up maimed or facing catastrophic
loss.
Amanda Palmer
And you just don’t have a choice. Sometimes you don’t have a fucking choice. Like electricity takes your legs away. Circumstance means that you deal with a miscarriage alone and you need to deal with a dead baby. Shit happens. And then you must either compartmentalize or grow. And I think what artists intuit it is that the dark really is incredibly fruitful. But what fucks most artists up is you stumble around in the dark, trying to pick the fruit of the dark in the dark and you can’t. Everything I’ve been thinking about and reading lately and especially like thinking about you and your life and your story and I’m reading this amazing book by Elizabeth Lesser right now called Broken Open about basically how grief and loss transforms into clarity and enjoyment. These bizarre things that sound bizarre from the outside, but once you’ve experienced them aren’t, including a fan, a fan of mine that I interviewed a few weeks ago on tour, who is blind. He attempted suicide by jumping off a bridge as a teenager and survived, but is disabled, and just has no regrets, just feels like he was just given an incredible gift. I hear you talking about it the same way. I feel it. I see Elizabeth writing about it in the same way. And I go there’s something that artists know. There’s a great quote in your book, you say death becomes the soil for the beauty, the reason for the compassion. So many artists know this, that out of the dirt and the dark comes the beauty. But so many artists have to manufacture the dark and whatever form that takes, whatever masochistic drug-induced, you know, like sex crazed, my life has to be a fucking dark mess in order for me to be an effective artist. On a level it’s true. On a level without accessing the dark, you can’t really get through to the light. But it can eat you. You must have seen a lot of this and especially, you know, you work in hospice and you see a lot of people at the end taking stock, who have or haven’t chosen a path of making art or appreciating art. What do you see from your vantage point?
BJ Miller
One of the risks is when you turn your attention to this, to the darkness, as you described, and you start realizing the fertility of it like we’re talking, it is possible to become overly enamored with it, too. And I’ve watched people, I watched this happen in a lot of folks that are on hospice, but I’m just aware a lot of folks who would not have been interested in end of life things seem to be, there’s a wakening that seems to be happening. I’m meeting more and more people drawn to end of life issues and stuff. There’s a real subtle distinction to be had in here somewhere where you appreciate what the darkness helps you see. You appreciate the power darkness gives to the light.
Amanda Palmer
The black flashlight.
BJ Miller
Yeah, the power of this black flashlight. Right. And if you’re not careful, you can become a little overly enamored in clutching to the darkness. You can become overly invested in pain. I think it’s very easy to do. I see a lot of folks bring a sort of sensationalism, almost of ghoulish sensationalism to interest in the end of life. And I think there’s some important hair to split in there. Yes, I see what you’re describing in myself and in others, especially an artist, but anyone trying to kind of make their way through the day, and especially comes up at the end of life of folks trying to reconcile these massive forces while they’re still here. I think a lot of people think life’s over here, deaths over here. Lightness is here, darkness is over here. And the truth is, they’re all interrelated. If I’m enamored with anything, it’s the tension between the two. So I need light and I need dark. One without the other is problematic. And one without the other is just a half a reality. It’s just not a full picture. I think that’s an important distinction. If you need to be hooked on something, get hooked on the tension that naturally exists between these forces. You don’t need a manufacturer. You don’t need to create pain, there’s enough pain. If you’re paying attention to yourself in this world, and the world around you.
Amanda Palmer
There’s no lack of pain.
BJ Miller
There’s no lack of fucking pain.
Amanda Palmer
There’s a phenomenon with many artists who have found the fertility of the dark and have found phenomenal success in harvesting whatever comes out of the dark that there can be a massive amount of fear with what will happen if you examine the dark too much. If you actually deal with your trauma. If you actually deal with your childhood, if you actually go to therapy, it might de-fertilize the dark. And I see this constantly. And ironically, the more successful the artist, the greater the danger. Because, you know, if you’re working out of the dark and you’re just sending sparks out into the universe and the universe is paying you in great dividends for the sparks that you’re sending out, fucking with the system can be very scary. I find myself always thinking something really similar, which is working through the dark doesn’t mean that you lose access to the dark. Hey, you will never lose access to every shitty thing that happened to you. Especially if you have the fortitude and you can go yep, I’m just gonna flick back 30 pages like there’s the trauma writ large. I can harvest it as I want, because I am God of my own life. Or just pick up the fucking New York Times you’re set. There’s, there’s no, there’s no way you just escape the dark and go into the light. Doesn’t exist.
BJ Miller
Right. Amen. That’s why I mean like you don’t need to over identify with it. You don’t need to clutch it. You don’t need to try to own or protect that dark thing. It’s bigger than you. It’s there all the fucking time as is the light. It’s all there all the time.
Amanda Palmer
When you say that end of life is now more in vogue. I mean, you said the same thing about mindfulness and I think I know what you mean, which is like, even though Buddhism has been around for thousands of years, and mindfulness has been in vogue in certain parts of the world with certain folks. You know, whitey, western folks are now opening their eyes up to different possibilities. I’d love for you to describe what you think the book is.
BJ Miller
The book is many things. I mean, it’s 500 something pages. The subject’s enormous. I mean the book’s called A Beginner’s Guide to the End. Reading that title does it some pretty good justice. The subject’s huge. So the book kind of has to be huge. And even as huge as it is, it’s still going to be reductive. There’s no way to cover every aspect of this subject. But it is first and foremost a guidebook, it is meant to help people navigate what has become an incredibly unintuitive process, especially when you throw in the healthcare system into the mix. So on some level we are so dying is just about as natural as it gets. And on some level, it should be an intuitive thing. And we’ve been doing it for gazillions of years as a species. But the truth is, we have invented all sorts of spectacular ways to distract ourselves from it, so that we don’t get to know it earlier in life. And we’ve invented incredible ways to sustain, to prop up a body, but actually not necessarily promote life. So you’re left with actually you’ve got a healthcare system that could make you live practically bodily, give you a heartbeat almost forever. We’re now in this weird, the death becomes a moment of opting out of some system and it’s not intuitive.
So anyway, that’s a weird background, but why this book needs to exist is because it’s not an easy process to navigate and people end up, and I see it all the time just as a person but also as a physician, people suffering so much more than they need to. Doctors, nurses, social workers, patients, families, administrators, you name it. Everyone’s sucking. You know this is not. That’s kind of exciting to part of the vogue moment I think is that all roads are leading us to revisit how we die. You could be a bean counter just follow the money and realize we get a change it. You can follow the science. You can follow the ethics. You could you could come into this situation from any angle and land at the same place, which is basically we got to really rethink how we’re dying. The book is meant to basically if I, this may sound elevator pitchy, the basic idea is to lift the floor. It is meant to be a fundamental treatise that is applicable with trying to write to the common denominator no matter what your belief system, no matter how old you are, that there’s a huge denominator among us simply because of we’re mortal. And that these forces are knowable and reliable and play out, no matter who you are or where you are, because I spend so much time going over fundamentals with my patients and families like what is hospice? What is palliative care? Does it have to hurt? How do I talk to my doctor? What the hell’s of eulogy versus an obituary? All these very basic questions. So the idea would be that this book, if we hit the mark well, and if it gets out in the world, there aren’t many books out there that handle this. So it’s very easy to stay in the dark on this subject. If this books does what we hope it does, people will have access to basic information so that the floor of the experience — we’re not going to lift not going to blow through the ceiling — but we could lift the floor, so people don’t have to fall as far, so people don’t have to hurt as much.
Amanda Palmer
Basic death education.
BJ Miller
Yeah.
Amanda Palmer
So I just saw parallel after parallel after parallel after parallel between our shitty way as a culture of dealing with death and dying and the way we deal with birth and birthing. Because my mind has been on this more than, not even more than usual, you know at all. I wasn’t thinking about these things very much until I got pregnant, decided to keep the baby and have a child. And I talked about this in my stage show a little bit, but I actually am retroactively really grateful that I had so much negative hospital garbage hanging off me from Anthony’s long, long, long cancer treatments and being in bone marrow transplant world, dealing with a very inhumane abortion experience in New York City that I was fully on board with the idea of getting away from western medicine, hospital standard prescription when I knew that I was going to have to choose how to have a child. The things that I ran up against and the stories that I’ve collected and the knowledge that I now have around childbirth is most of it is just pretty horrifying to me as I’m sure it is horrifying to you as you like, cast your eyes around the country and go, oh my God, like we’re doing it’s so wrong. We’re just so bad at taking care of each other. How did this happen?
And the parallels are just beautifully poetic. Birth and death just have so much in common.
BJ Miller
They sure do.
Amanda Palmer
Who’s in charge? Where you are. Who’s allowed in the room? Who has agency? There’s a great quote in your book. I don’t know exactly what it was. I just wrote down a note, but something about end of life patients not feeling like they had agency and also just not feeling like they were allowed to make certain gratifying, actually self-loving choices because making the wrong choices smacked of quitting. That was the phrase that really stood out to me. There’s so much of that around, not just around childbirth, but also, you know, I’ve spent the last couple weeks of my life steeped in the abortion debate. There’s a whole other avenue of parallel when you talk about agency, who’s in charge of whose body, and who gets to pick what even just reading your quote, our medical system is wired to extend life as defined by the presence of a heartbeat whenever possible, no matter how uncomfortable the means. And I’m like, well, there you’ve also got the heart of the abortion debate. And now you’ve got an 11-year-old girl in Ohio who was abducted and raped and who might have to carry that rapist’s baby to term because somewhere somehow the right of that unborn child is sort of usurping the human rights of this 11-year-old girl. And how did we wind up here? Why do we think that that’s care? Do you hang out with doulas midwives, people who sort of live on the birth side of the hill where you’re hanging out mostly on the death side of the hill and see the rainbow of parallels that connect these two worlds?
BJ Miller
Not per se, but more conceptually, like I think about this a lot. And it’s obvious enough through friends of mine and having been a med student and been in labor and delivery wards and been around birth myself. It’s not that I have a cohort of friends who are Ob/Gyns and doulas per se, but I do these subjects are just empirically enough so linked that birth and death and some cycle of life are, are absolutely linked, both in the natural way and also in our artificial, the human applique the way we treat them, the way we accidentally and purposely sometimes shame ourselves for these very natural moments. And the way we separate ourselves from the beauty of it weirdly. So basically, I’m just sort of saying that I whole hog agree with your analogy. And I do think about it. I do hang out with death. doulas.
Amanda Palmer
I have friends of friends who were training to be death doulas. Describe what a death doula does?
BJ Miller
Oh much of what you are you’re hitting on Amanda is so right on, especially from a systems point of view. And the birth movement, I think is just a little bit ahead of the death movement. And medicine has come a long way. It’s still got a ways to go but gone are the days where the dads removed from the room, can’t touch your own baby. I mean, you know, there used to be like, idea we used to like, you know, dry up breast milk.
Amanda Palmer
Don’t touch the baby. You’ll make the baby sick.
BJ Miller
Yeah, don’t give them that gross breast milk. We’ve got formula. I mean, Jesus we really, I think we’ve nadered. I think we’re all aware that those were big, fat mistakes. What’s happened around birthing, we are in the in the sort of end life world are directly trying to draw lessons from what others have done around the birth movement. A piece of that is, yeah, like nothing, none of this part of what a force that’s under all this is we keep especially in this country, we believe that there’s such a thing as autonomy and independence. There is no such thing. It can be we can be relatively independent, but we need each other all the time where there’s, I don’t believe an independent person has ever lived. I think that’s the flaw in all of our systems that we keep kind of trying to push, push ourselves in that direction. So the truth is, of course, a birthing, you could really use some help some times and dying you could really use some help, right? And our choices used to be the hospital. And so doulas, midwives, old traditions that found new purchase because in a way like we’ve been saying, the negative example, the hospital, got so grotesque in a way it evinced the need for another way. It got gross enough, that would force the creative work to find in a different way. That’s kind of what is happening at the end of life. And so just in the same way as there are midwives and birthing doulas, that same mentality of accompaniment of yes, a skill set, but the primary skill set is being a fellow human being and not running away and sitting there and touching and all that stuff.
Amanda Palmer
And on the schedule that is not set by a hospital, but the schedule that is set by the event, by the mother.
BJ Miller
Like odds.
Amanda Palmer
I got to go to this place in Tennessee called The Farm. Do you know about The Farm? Do you know Ina Mae Gaskin? She wrote the book Spiritual Midwifery in the 70s. These crazy, commune dwelling back- to-land hippie types in the 70s who’ve really spearheaded the natural childbirth movement. It was called the natural childbirth movement. And there’s actually a movement right now to stop calling it natural childbirth, because there’s an element of shaming in that that women who don’t give birth vaginally or don’t give birth without drugs are unnatural. Yeah, I’m an artist. Neil’s and artists. We enough jobs that we had to clock into. And I got to travel down to Tennessee and live on this commune slash intentional community just in the middle of the woods for five weeks, with very little intervention in a cabin. I got to give birth with nothing but a couple of midwives and the trees and the sounds of nature and it was a 24- hour labor. You know, as someone who did drop acid enough times, I just let go of the wheel. And I would assume in the death experience, it’s the same thing, a process takes over. You’re just in it. You’re going on this ride and there you are. And you really, really want to trust the people around you and be in a pleasant environment.
BJ Miller
Yep.
Amanda Palmer
And I got that. But I also got that because I did my research. I had the resources. I could take five weeks off work. You know when I graphed my own story on to what would have happened if I had just googled and gone I am giving birth, you know, comma, what do I do, there’s no way that as a 39-year- old woman, I would have been allowed any of that. So many people were so concerned, thought I was nuts. What if something happens? Why wouldn’t you do this in a hospital? You won’t be safe. It won’t be good. It will be bad. We’re all so afraid. I just wasn’t afraid. I know that a lot of that is due to all the privilege that led up to it. Just like you quote unquote, whatever like clunky word you want to use overcame? Because you were in the fuckin position to head left instead of right. Just in terms of birth and death, like it feels like right now, especially because of capitalism, money, all the people who have so much shit at stake, to keep us in the dark, or to do things the way they’ve always or at least been done in last whatever Do you feel like there is a kind of an activism element of what you are doing and there will be pushback from the system and you will have to argue your point or argue your case?
BJ Miller
These are active question for me because I am part just like, what is my what am I doing? Like, what’s my identity with this work? What am I actually trying to achieve? Am I trying to change something? Or am I trying to kind of reveal something or what am I you know, so it’s a hot question for me. Like, for example, the TED talk. I didn’t get any, I didn’t have one piece of hate mail. Not no one was angered by it. Some people may have been not moved by it. I mean, a few comments I’ve heard that, you know, what’s the big deal? That wasn’t news to me kind of thing. But no one didn’t seem to hurt anybody. Or there was not enough there for someone to disagree with and that was quite an experience, put something out in the world that seemed to be essentially neutral.
Amanda Palmer
Universal thumbs up.
BJ Miller
Yeah, essentially, it’s a neutral or thumbs up. Yeah. And now here I am about to put this piece of produce out in the world. And it’s a much more involved thing, much more detailed thing. And there, it’d be impossible to write a book on this subject and not offer some opinion. I am really pissed off at our healthcare system, right? My life was saved by our health care system. I am a doctor who works within the health care system. I mean I’m beholden to it in all sorts of ways. And I love it so much that I demand the right to criticize it. Feels like my version of patriotism. It’s a piece of shit in a lot of ways. That system is fucked up and causes harm. So I am aware that I’m actively trying to affect the healthcare system, how it’s conceived, how it works, what policies, how funding moves, etc. So there is my activism at the healthcare systems level. I don’t mind being controversial. I don’t love it for its own sake, you know, per se myself.
Amanda Palmer
That would be weird.
BJ Miller
Yeah. Well, I mean, some people, I think can get off on it. I’ll enjoy true controversy if I can really own my piece of it. I like good argument. Long winded way of saying, Amanda, I’m very curious to see when we put this thing out in the world, if it’s going to be controversial at all.
Amanda Palmer
As someone who’s read most of your book, I don’t think so. I mean, if anything, because there’s always haters out there, you’re probably gonna get hate for what you didn’t include.
BJ Miller
That I’m aware of. That was painful for me.
Amanda Palmer
How could you talk about this without addressing what’s the most important thing to me? You asshole?
BJ Miller
Yep. Yep. I already feel that way. I felt like an asshole for all the things we had to cut. But anyway, yes.
Amanda Palmer
What did you have to cut that hurt you the most?
BJ Miller
Well, it’s more like there was probably a single thing but there’s so many points of view. I’m so aware of the exceptions to the rules. And so as we try to lay down things that approach sort of a fundamental or a rule or a theme, I can only I can only think of all the exceptions to the rule, all the patients I see you who don’t fit into that category. You know, and as soon as I try to write about finding beauty in and around loss, you’re aware that might smack someone really wrong depending where they are in their grief.
Amanda Palmer
How could you possibly?
BJ Miller
Yeah, you’re putting a smile on my pain? You fucker! You know I can imagine like men feeling that way. So that’s sort of the hazards of did we find the right tone? Did we use humor and levity in the right moments? Who have we forgotten in the reductive process of writing, right? I mean, so there’s no single thing. I suppose if I were going to write an advanced guide to the end, this is the beginner’s guide and another thing we get to hide behind is it’s a beginner’s guide. But if we’re going to try to write an advanced one, like a subject that I love, we don’t really touch on the aesthetic domain, like you and I have talked a little bit. I would love to put that in there. But that just was got too esoteric sounding. We write to the patient, the person dealing with illness, and we want to respect the sanctity of that experience? We talk about self. We talk about leaving a legacy. We talk about the power of your own actions in the book, as though self and other were different. A truer treatment of the subject would be to explore all the interplay between caregiving and care receiving, between being between the self and other, essentially. There’s so much beautiful overlap to explore in there that comes up in the realm of giving and receiving care that we couldn’t do justice to that piece in the book without putting someone off and adding another couple hundred pages. So that’s my biggest regret.
Amanda Palmer
when I gave my TED Talk, which was about exchange and giving and receiving in music and art world but effectively, really about fucking everything. I sort of hit upon the same thing writing my book, because once you start talking about anything, you can start talking about everything. There’s a whole other book in the emotional aesthetics of the room in which you die, which be another 500 pages.
BJ Miller
Yeah.
Amanda Palmer
And what is it? What’s the lighting like? And what does it smell like? What are the volume levels of the visual and audio experience that you’re going to have when die? And thank you so much for taking the time to talk to me.