BJ Miller: How do we reframe suffering and find our unique joy?
Dr. BJ Miller is a Palliative Care physician at the UCSF Medical Center. His Ted talk in 2015, What really matters at the end of life was watched by nearly 5 million people worldwide. Death has never been a popular subject, why would so many people want to listen? "BJ Miller thinks deeply about how to create a dignified, graceful end of life for his patients" because we need embrace the subjective. People are transformed by illness. Death is in fact part of life. It is one of the few things we all know for certain. What do we do about this?
BJ answers all the questions you too should know more about. The knowledge and wisdom of how we live and how we die can benefit everyone. Not just the people who are suffering.
From BJ's origin story as a wounded healer, to choosing to attend medical school after the accident, to an invitation to speak at the main Ted event in 2015 (and the brutal preparation behind Ted, which many people don't know about), this conversation is very much two friends on a coffee break.
"People are transformed by illness. Death is in fact part of life."
BJ took me on a journey of uncovering so much more of who he is, not just a guest every popular show wants to feature with a message to convey in 30 seconds or less. With that in mind, I asked BJ a difficult question - How does he navigate, and how does he feel about the attention from major media? Which part excites and worries him?
I met BJ at the Robert Leffert MD Palliative Care Memorial Lecture in December 2016, which has attracted hundreds of medical and non-medical professional over the years. I want to take a moment to dedicate this episode to the Leffert family - Linda Leffert, Adam Leffert, Dr. Lisa Leffert, Dr. Lee Schwamm, and Dr. Vicki Jackson at MGH.
Watch BJ Miller on Ted:
[06:00] How was the experience of speaking at MGH, memorial lectures?
[08:50] What do you think about our (natural) tendency to prejudge people?
[11:30] What is palliative care, and what isn’t? How do you explain it to your patients, friends, etc
[15:00] Can you share your story? The one behind the TED talk?
[21:00] How challenging was to study medicine after your experience?
[24:00] Can you share with us how was to prepare your TED talk?
[33:00] Which part excites you, and which parts worries you about being a public figure and being in touch with media.
[40:00] How do you deal with the trade-off of keeping some ideas to yourself and spreading them without fear of being judged because other people don’t agree?
[46:00] BJ commenting on Fei’s experience breaking the tradition behind her father’s funeral.
[48:00] What do you see as the future of your work? How can people get more familiar with your work and how can we can start doing something to contribute?
Suffering can be a joining force, instead of a dispersing one. Philosophical, spiritual, scientific, all angels of the subject in a swirl everyday. You work on the professional subject and it helps you personally, in a sweet way.
You go through your body, soul, you never would imagine you'd go through. [You build a ] kernel of new confidence. Imagine going through [something] sometimes is harder than going through it [in real life].
The injury took from me, but also gave a lot. It became a frame of reference. Medical school didn't seem so hard. Life isn't an easy path. Life is no easier than med school. Sitting around, I would have a harder time looking at myself.
You bounce around in language and frame of reference.
The subject (palliative care) is thirsty for attention. Palliative care needs better branding. It impacts all of us.
Life is not an easy path, period. Even if you take the path of least resistance, you are going to have the vagaries and insecurities and shocks to your confidence, and wondering who you are.
It’s in front of us, 100% of us die, it is going to happen, it IS inevitable and, somehow, someway, we figure out a way to avoid that subject, somehow we figure out a way to keep it feeling like death is optional.
The more we all talk about it, the more light we shine on it. Who knows what’s possible? I don’t have all the answers, I just get to ask questions and provoke people.
To have more Zen hospices in the world, there’s a policy issue, there’s an awareness issue, there’s a work-force education issue and there’s a system’s issue, so I’m trying to move in all four fronts.
The healthcare system is doing exactly what it’s designed to do, and the doctors are doing what they are educated to do. Unfortunately, they are not educated to have difficult conversations, or to help people yield things that cannot be changed, or help people to find perspective when there is suffering. These things are not taught in medical school and yet this is the subject matter in any clinic, any day of the year.
Credit: Music by Florian Bur
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Fei Wu: I’m excited and I know your time is precious, so thank you for doing this and since I mentioned the lecture series just briefly that I want to let my listeners know that you and I met at the Robert Laffer MD Palliative Care Memorial Lecture at MGH which was a lecture series established in 2011 and Doctor Laffer was an MGH physician and Harvard professor, he was also a veteran. This memorial was in honor of his memory and the support that really helped him and his family through his final days so a big shout out to Vicki Jackson, chief of the MGH Palliative Care Service. So what I have observed over the years is this lecture has attracted hundreds of people, medical professionals and other, such as myself, and you’re the latest guest. What was it like for you to speak at MGH?
BJ Miller: Well, it was awesome in a lot of ways. It was very strange because I did my fellowship at MGH and then at Harvard. So when I did my fellowship in palliative care that was 2006–2007. So Vickie Jackson was my, one of my main teachers and she was director of the fellowship at that time, so to come back to that same place where I was a student to deliver a lecture was just as fun, sweet, sort of full circle and a little intimidating, but mostly really fun and just wonderful and wacky to be back in that new way.
Fei Wu: Yeah, I had no idea until you started speaking and you said you were nervous but I realized that that nerve ran away very quickly.
BJ Miller: Yeah, you know how it is once you kind of get going and everyone, you can tell everyone is not angry and people weren’t falling asleep and you get a little bit of hit of confidence and things are off and running, so yeah, it worked out, I had a great time, it worked out lovely.
Fei Wu: I have to say, um, tiny bit of my own experience and I think you’re going to laugh because as a podcaster, every time I go into an event, especially something such as this lecture series I always studied the guest beforehand such as the year before it was doctor [0:07:34] [Indiscernible] I’ve read his books and such, but somehow this time I was so caught up the day before and I forgot to research and I was completely pleasantly surprised. And I remember walking up to your picture, and Adam and I were looking, you know, you were, we’re thinking and saying, “Wow, this guy is really good looking!” which I’m surprised that nobody has brought up in any of the podcasts just yet. And were saying, “Oh, is he a real doctor? Or is he a TV doctor?” and it was so embarrassing! Now I think about it and I realized that when I met you, you know I was really shocked because looking at the picture I had, I had really imagined that you had not suffered and you know, you’re a doctor, life has worked out in a way that’s easy for you, and so I start to rethink when we say a picture is worth a thousand words, but to me it’s worth a thousand imaginations and some of that is completely inaccurate, you know? I start to think about myself, not judge people before I actually meet them. So.
BJ Miller: Yeah, well Amen to that. I mean, we do it, all of us do it all the time. You know we project this or that especially on a photograph, you know especially that’s just a setup. Any sort of public light is just a set-up for the projection impulse to run wild, you know sort of it’s kind of what’s kind of interesting to go from being you know, one on one connection with folks to trying to work a little bit of scale in an organization, trying to spread the gospel of an organization and now trying to sort of beat the drum on the big issue in society. Each step along that way just pulls you farther away what you have more, more relationship with all sorts of people you don’t know. And those relationships are real in their way, and they fig all parties in their own way, but they’re also increasingly farther removed from the realities that would inform relationship.
I meet people and I realize that they already have a bunch of ideas about who I am and that’s fine! I mean, that’s okay! That’s human nature, it’s not, it’s usually sort of fascinating, but it’s also a little, I don’t know, unsettling at time, what you just described happens [0:09:57] [Indiscernible] is an interesting phenomenon, and most time it’s just fun and I can leave it at that but sometimes it’s a little problematic. But anyway, thank you for circling back and we do it to each other all the time, don’t we? We look at someone, and we assume we know, we fill in the blanks so quickly. I suppose there’s some great evolutionary reason why we do that, we must do that.
Fei Wu: Well thanks for that, you know I don’t typically start off the podcast being so this level of honesty, but somehow the feeling I had gotten from the lecture, the very next day, I woke up after meeting you, I thought to myself, “Whoa. Wait a minute. What happened?” You know? There’s some sort of reconfiguration happening like inside my own body in a way. And it’s only been a month and I have to say that I could feel my heart racing, and my daily lives was changed significantly, part of that is about re-engineering some part of that and as simple as going to sleep and really appreciating things that I have and waking up in the morning and say, “What is my intention today?” you know? What do I want to focus on because I no longer want to take anything for granted, you know? And um, I feel like I start taking to many, many more people including my own family, friends about palettes of care, many of them at this point did not know much about it at all. What a shame. You know? So I wonder, what is an explanation you find helpful perhaps when explaining to your patients and others about palettes of care? What it is and what it isn’t?
BJ Miller: Well, about palliative care in general, I mean I think, you know, one of things that would be so fun to do and it keeps cropping up as a big project to take on. With a group of folks it’s usually a branding, you know, a marketing campaign for palliative care because it’s just so hard to describe what the heck it is, it’s so hard to describe why its special, because you know, you kind of describe it, oh well, you know it’s a multiple, it’s a multidisciplinary pursuit of quality of life, in the context of serious illness or something like that, you know. Or there are longer with answers. Palliative care is about tending to the whole person about quality of life; their spiritual help, their physical help, their emotional help.
Or for some people describe it as relationship-centered care, that what it really highlights is the relationship between the patient and their family and friends, as well as with the clinician. All those are accurate, but also don’t know that they do sort of the poetry of the field, much just as. You know the subject matter is really suffering, and the hundred percent of the population is relevant to the subject. And this is sort of the least esoteric subject around. This is the least exotic subject around. In that we all have a relationship to it. How do you do that justice? I mean, that’s special. That is unique. I don’t know what else you can say that about. It’s tricky and we all know very few people understand what palliative care is, and when they do understand what it is, they want it. They want more of it, they like it.
We also know that palliative care has [0:13:21] [Indiscernible] effects on well-being for the patient and family; we know it helps them generally save a bunch of money as a [0:13:29] [Indiscernible]. We know that places and organizations that have palliative care program genuinely are happier places to work. We know a bunch of things, we just going to have to communicate them to the public, and not just communicate them to the public but we also have to open up the conversation in the other direction because the way one suffers, the way we get through, the way we cope is practically infinite variations on themes, and we have so much to learn from each other. It’s really a two-way street that needs to open, this is a sort of a tip of a spear of a patience-centered care. In palliative care marches fort well, you will start to understand, the health system understands what the people actually really want, once they’re informed and that’s a bunch bigger than just a field of suffering or end-of-life care. Anyway, it’s really tricky to do just to do, but you’re kind of have to because people are suffering out there with the palliative care program right down the hall they don’t think to enroll in because they don’t think it’s relevant to them when in fact, it most certainly is.
Fei Wu: I was going to bring this up later but now you mentioned I think it will make you happy to know that one of my previous guests, Eli Schwamm, he’s excited about those interviews but he also wants to let you know that for this 1 month winter vacation, he at the age of 19 now, he decided to volunteer at a local hospital here in Boston to help with the measurement of palliative care, this is a profession that he absolutely wants to get into. Yeah, and one of things that he said, which I’m going to quote him is that, ‘Everybody dies. It’s one of the few things we all know for certain and by not reckoning with this fact that doesn’t make it, you know, less sad or vulnerable. So BJ, you have a very unusual experience, you have been both a physician as well as a patient and more and more people are learning about you, about your back story watching TED talk but do you mind sharing your story as well with my listeners?
BJ Miller: I don’t mind at all. It’s so interesting, my patients have to tell me and show me all sorts of stuff. They have to get very vulnerable, so the least I can do is share the favor. So anyway, I got into medicine, I was injured in college from electrical burns, I was screwing around on a commuter train and I had a metal watch on and the electricity arched to the watch so I ended up losing my left hand below the elbow and both legs below the knee from those burns, and that was sophomore year college, so once done with my rehab and all that stuff, I went back to college, I hadn’t figured out what the heck I was going to do but before that, I hadn’t figured out who I was, I was wrestling with the questions of my identity, I was trying to make sense of these losses and what just happened instead of trying to stay relevant to society, to myself, and trying to find my place.
That led me to study the arts and as a way to help me chew on perspective making and how human beings take what they’re given and create things, make things, make art. How art was so compelling and particular because it existed for its own sake, people were creating things for their own sake in a way you’re touching the Gods a little bit. You can create little worlds from which you’re given. And you can reframe yourself and you can replace yourself in many ways. And I don’t know other species that do that, it’s such a particular human thing, so it was very helpful for me to study art as an undergraduate to help me reframe my own experiences. That’s the bottom line. It really helped me learn how to see and then, from there was like, ‘what, geez, what do I, how am I going to make a living?
I knew I want to use these experiences as a patient. I didn’t want to overcome them I wanted to use them; they’re very [0:17:37] [Indiscernible]. So I learned a ton from them very quickly, so why cover them up? Rather than work with them. I was figuring out a way to be in the world and work in the world where I can use these experiences directly or indirectly. And it was so high-powered education that I was force to have. And that led me to medicine. And it was very much the same impulse was interesting human beings. And the same impulse that took me to study art was what took me to study medicine. And I thought I was going to do rehab medicine, and the joy of using these things to be of service to whom I would be the most relevant or most in service and I figured what other people disabilities so may be gone with some physical medications and work with people who beyond some traumatic events trying to reconfigured themselves just as what I was doing.
I know for sure I feel in love with medicine as a vocation and with rehab medicine as a vocation for a number of reasons but kind of turn of palliative care when I was doing my internship, my first year after medical school my sister has died and I was back with my family and regrouping as a family now in Milwaukee where I did my internship at the Medical [0:18:57] [Indiscernible] College the happened have the sparkling, one of the first powdered care program in the country. And I just luckily took an elective there and got turned on practically immediately probably reasons we practically earned and many reasons we variably discussed. Here is the field that really embraces subjective. Here was the field that was interested on how people are transformed by illness rather than just treat the illness in a [0:19:26] [Indiscernible] correct and get back to life from and this was in fact part of life and this idea that our suffering could be a joining force rather than a dispersing force.
All those are very immediately obviously possible in this field and so I jumped in both feet and so to speak and it’s been a really great ride and all the physical and spiritual, scientific and all the different angles on this subject continued to feel the swirl every day and I feel very fortunate to be working on the subject that why you work on this subject professionally and it helps you personally, your personal professional life get link in a very sweet way. Little tricky sometimes for most of us who like [0:20:17] [Indiscernible] boundaries can be important but it really is gorgeous work and I have loved it every minute ever since.
Fei Wu: Out of a lot of profession you could have chosen and you know after the accident and you chose medical school and I’ve had a plenty of friends more than handful here in Boston and we have chosen that path and I have just watch how brutal that is internship residency and have to move around the country as a result. Challenging was that part for you, because you certainly did not choose an easy way out or a path in your new career.
BJ Miller: No that’s true, medicine, medical training is brutal and long but I can feel as re-entering a road up to my injuries that you go through your body and your soul, you’re going to things would never you could go through, would go through and even as your broken down there’s also a time being as new kind of confidence. You know sometimes imagining what is this like to go through something it’s actually harder than going through it.
Fei Wu: That is so true absolutely.
BJ Miller: And so it’s like this, coming out of the hospital is painful as it was. I was also aware that I had a much bigger capacity to suffer and much bigger capacity [0:22:08] [Indiscernible] pain and they give two things. One would be another. I didn’t realize as much as accident and injuries is tough for me. Else have gave a lot and one else he gave is you know this different reference so medical school in seems so hard after hanging out in a burn unit for 3 years and 3 months a patient. You know, using a few limbs. You know all of a sudden, that changed my primary reference.
So that medical school didn’t have to seem so hard so I can take it and stride in ways I probably would have been able to take and stride otherwise. You know you put one put before another and before you know you actually doing it and it’s actually working and things went well. There are bumps along the way and as not to say then I could have easily failed and almost drop out of med school actually, but bottom line into your point is yes it is not an easy path but when you go something like that you kind of realize life is not an easy path period even if you take the path of less resistance well then you going to have the vagueness of insecurities and shocks to your confidence and wondering who you are and all that kind of torment is not I wouldn’t say is no easier than med school so sitting around an doing nothing anyway seemed harder. I would have harder time looking at myself in the mirror doing that.
Fei Wu: Absolutely, I love the new article that New York Times posted, one man’s request to change the way we die and after reach out to you after I feel like such a beautifully written, it’s traumatic because it’s also factual. It is such a good rhythm and I took many clothes out of that and one of the things I love is every work is shaped by the viewers’ perspective. You know it’s true by the way we lived our lives as well as how that piece of work is coming out from out artist’s perspective and I thought about as out conversation that or the other just about a month ago and I love the way, I love the story of your TED Talk experience which I don’t think many listeners or your fans out there really know how that came together because it did not sound like necessarily easy process for you. So do you mind sharing that experience?
BJ MILLER: Oh, gosh yeah sure and that was brutal, maybe you like somebody sings like this is like the vagueness of language too. I’m glad this called prepare for TED Talk brutal and 2 seconds ago I was telling you that you know if you are not losing feet and you’re not distort why can’t be that hard like Med school so I part of this you have to bounce around in language and your friends and our friends but within a normal frame of our friends not including laughing our friends preparing of our 10 box was very hard, was brutal. From first timers I feel very first in it especially when I was working in a hospital which is non-profit organization because it is trying to raise money when the opportunity Mikey Barney said around it was impossible to say no to in behalf of my work in the general hospital, in behalf of the field Mikey Barney said, “This field is so thirsty for attention.”
So it was impossible to say no to that opportunity in the way I have that weigh that opportunity came about because I get answers a lot. Honestly, I don’t know what a normal process is getting to the tenth stage. I understand it’s not easy and I tell some mysterious and I have no idea. I luckily came in the side door. A friend of mine who had lots of conversation with works with the IDO place in a friendly way. He kind of put me up for this there’s a thing called the TEDx price so I was nominated for that TEDx price and I didn’t get the price but in the end that was meant to be invitation we give the TED Talk, but the bigger part here question those preparing this [0:26:11] [Indiscernible] given I don’t know 17 minutes and to inherently it’s crazy to stop just about any subject into something that short on some level then you fell in the hell of performance that’s inside so here I had the subject that I knew I would talk that time about death but how the heck are you going to take that subject that large and do it remotely, do it just in 17 minutes.
And oh by the way you have to share your personal story because no one really listens to if there is no personal story behind. This is just layout their presiding essay that wouldn’t go so well and finally friends of mine they were writers and who are in this one mere than I do and helped edit my talk along the way. It took me about 2 months to craft the talk and the content of it and to waddle it down to the right size and I have helped with like the woman who am I writing the book with now. She shown a burger which is she usually helpful cording work with other author and friends here and there has been John [0:27:09] [Indiscernible] who very helpful and [0:27:11] [Indiscernible] very helpful and others who have been very kind and read it and give feedback. So I had a lot help. I do not recommend doing that in a vacuum. We need about bounce that to people. I did so let me get the content and then you have to freaking memorize the darn thing because I really couldn’t get myself to believe as I heard that the big ten stage that I don’t want you to use props. You can use slides and I don’t want you to use notes. I don’t offer a teleprompter and I heard that times that oh there’s no way that’s true.
How can people possibly memorize these things and get it down in a minute so I find left that in my consciousness by a month before the talk which was I think in February 2015 at Vancouver so then became the chore of memorizing that darn thing and that was brutal and so the night before then there was part of this crazy story was my talk was the last. It was scheduled very last talk of the whole. It was a week long and fast. You know this is crazy, amazing, wonderful, immersive, week-long experience and so they’re watching all these prose, give this incredible talks, not only the contents amazing, their lines are amazing and their performance as I’m just watching into this, they make so move and so impressive and then come to remember you have to go do that and then saying read that soon and there was the last freaking talk and that was just help for me. I can’t ate in pending pain. I’d rather have the pain foot front. I’d rather [0:28:43] [Indiscernible] so the week goes by and you just by infer yourself and trying to not follow on your hope and the night before I was supposed to go on. I went home with a shaking chill. I had sweats. I with my thoughts it was a fever. I felt physically ill and probably set the total of the [0:29:01] [Indiscernible] power the whole night.
But anyway I get up. The good part was one on one on stage. I feel like I was so physically drained from the anxiety and the non-sleep the night before I couldn’t, I couldn’t master like a physical anxiety. I felt very calm because I was just so tired. The last of the story was you at the back stage and the stage you guys were awesome jokey and were having a good time and this one woman. She’s really nice. She comes out and about to go on stage and I’m sure she is thinking well I’m not scared this point how I do. I just want to sing over with. Seventeen minutes from now I’ll be done. I don’t care if I bump. I just want to be in the past. She has a little headset in my concept and they’re on back stage and about to go on and busy woman. I thought she was joking.
She says “Hold on. We have a little surprise guess. This is going to be another 10 minutes.” I show bumps to hear that at all. And then she said, I might well what is it? It’s the freaky Dalai Lama so that might well last and all that I just describe and I follow the frigging Dalai Lama on the subject that is related to my subject. It’s not like we are talking about apples and oranges and how the hell I going to follow Dalai Lama. I mean that was ridiculous and the good is this who was so ridiculous is I can let go once I met around the absorbing, once things are this obviously ridiculous, I can really let go and it actually helps me and had when I got to do that was like “Oh okay let this is.” And every excuse in the world the bomb so whatever that is just fine.
Fei Wu: Oh thanks for sharing that story. I remember that day at out dinner table, people laughs so hard and then everybody from the other table at then turnaround and trying to find out what was happening but you are just hearing telling the story the second time, just like tears of my eyes, just thinking oh it is the profound and that also what hilarious moments entered that day. That was fantastic.
BJ Miller: Oh good, well now that I’m so glad to have done that. I’m so glad for that opportunity. I’m glad that it reached a lot of people. I’m glad that a good story out of it and I’m glad that for all the words what is remarkable something like that is to keep all the stuff you can’t say reminds of that, I’m not poet but I imagined it’s very hard to write poetry in part because of all the stuff you can’t say. You have to imply and you have to suggest or leave permanently absent etcetera and for that whole matter so much couldn’t be said. I think I can live with that thing. I think if I were to return the content of that talk I still actually believe it and I’m really glad for that for there something out in the world and perpetuity that I think I still I’m non-pretty sure I believe in. That’s good.
Fei Wu: That’s wonderful and I think just this experience started off with your talk. The word that came up very often after you left was the word naked and in its literal sense as well that you know myself coming for a consulting marking background. I’m very familiar with the idea was worth and I have a lot of respect for that, but you find yourself oftentimes sitting at these meetings talking about something that not critical but you’re dancing around these words but you can use these words and you have to know who your audiences. You can’t often speak the truth and just trying to get to the point the meeting should only last 5 minutes but it’s driving for hours and that’s precisely the opposite feeling I had coming out of that talk you know myself I’ve been to [0:32:44] [Indiscernible] when I was 19 and one of the activities he conducted was walking on fire with barefoot which I got the points right I didn’t actually do it but during the talk I thought to myself, “Wow! You know if the exercise is to be naked and sit here and just be human, and not feel embarrassed. I feel like I had the capacity to actually do that. I wouldn’t be afraid.” So with all the I wonder coming out of that talk and with now near the 5 million views worldwide and seeing in your times and sounds like Oprah’s interested as well with all the media buzz around you who you are, what you do, all the excitements like “Which part excites you and what part worries you a little bit, what is dynamic like for you?
BJ Miller: Well so the New York Times magazine article. That was mean to come out like a year ago and Oprah thinks Super Soul Sunday have already taped also roughly a year ago so a lot of things have their own or had their own trajectories on the exciting part is for me that you know a lot of us who have been on this field for a while have used to lamenting the fact that no one paid attention to this subject of suffering, death, and to utilized point. It’s 100% of the time. It’s going to happen. It is inevitable and somehow, some way we fear out the way to want that subjects, somehow we fear out the way to keep that feeling death as optional. It’s not really kind of miraculous part of this were friends, my gosh Americans aren’t denial. Yeah sure maybe of us are in denial but being most hardly saying is public life is to learn that there are many people who are actually are really interested in this subject and we going to let go of somebody old thinking that we’re so attached being underdogs in the field of public care and under-appreciated at that center.
Actually you know turns out that there’s a big head-up desire and interest and energy around this subject and people at least a large group of people really do want to talk about it, do want to think about it, and don’t want to accept the defaults of the dying process AT healthcare industry and has events so the most exciting part is that there is pen up interest, energy, creative juice around the subject and it has been on a closet for too long and has been assumed to be nothing but bad and dark and blah, blah, blah and in fact is revealing himself to be great for [0:35:27] [Indiscernible] vintage thinking and are we some great openness and some tenderness, some vulnerability and the nakedness tune as you have mentioned. So that’s just awesome. That’s really, I feel that some could change. It feels like we could do things differently in a society and that’s my big hope really I guess why I give this talks. Well for a number of reasons but the bottom-line would be well the more we talk about it, the more light we shine on it, who knows what’s possible. I don’t have all the answers.
I get to asked questions and provoke people like a lion. Others feel super smart to feel their brain power to this and their experience on this thing and with that opening who knows what a solution is the problems are waiting for us. That to me is just telling I’m really happy to be part of that process, that opening. I think the hard part from me with p personally a little bit is I’m a human being, we get a lot of projections, you walk around on prosthetic legs, and you used to getting more projections and now I have this sort of public life which is just you know you are a projection screen at this point. You know when I’m functioning this symbolic creature in the world, there is someone you just exercising their own being in a public way. It’s just a lot talk straight. It brings a lot of energy and mostly beautiful, emotionally very, very sweet and kind but also brings unrealistic and fear brings unrealistic expectations and not so special. I don’t have a secret answers.
I’m just another human being like everybody else trying down to get through the day and trying to make sense of their lines. I don’t have extraordinary powers and sometimes I could feel in this public way that people are expecting or hoping you have answers and that get a little scary for me personally. It’s like I guess they long in a ways saying a hard part of this is the expectations that this public life incurs and also the sort of emotional whipsaw you’ve never met and trying to honor that and respect that even why you want relationships with actual friends be challenging with her and so interesting like I have felt the affection of strangers much more of an affection of people whom I actually close to. Anyway we go on and on about the details in this but guess that’s it in a nutshell. The trick here is taking on a larger symbolic role in society and what does that do personally in your relationships and their sense of self. It can be quite scattering.
Fei Wu: It’s so refreshing to hear you say that and because I think there are so many people doing important work, who have not surfaced to the major media level, who are suffering from this or thinking. You know this may be the one thing that they are worried about and I remember [0:39:18] [Indiscernible] once said that she interviews some of those people who worked under the radar because they are busy doing their things and they are almost on purpose avoiding media for this reason, but I must say that first of all I love interviewing doctors and you are the third doctor I’ve interviewed on my [0:39:39] [Indiscernible] and if we could just come out and have a conversation without expectation. There are several other doctors I’m trying to interview and to be honest and they have refused, kindly refused to say “I don’t want to appear as an expert. I don’t want to go to force myself unto others.” Meanwhile I’m trying to convince them to say that’s not the point and we can maneuver around some of the questions are structured, you can review the transcript and but still I received a lot of rejections as a result of what you just mentioned so.
BJ Miller: Yeah, it is. It’s really, I’m glad you’re surfacing a little bit, talk of something they complain about and I feel so lucky and this energy has allow me to tour around the country and even internationally and see the world in a new way and meet people in a different way. I mean it has been awesome, but it is tricky. I does have sort of dark side. It’s just a tricky side and that I’m glad you’re surfacing. It’s real, but like some of things, the trick is well the media and this symbolic life, well there are something. They’re real. It’s something, it’s just not everything and keeping that basic perspective and allows me to keep going. That’s it. So giving talks, being on your podcast, it’s great, it’s something, it’s just not everything and what people think of me will never based me on something that they have read.
That’s something, its working, it’s something but I just can’t make a mistake of confusing it with my totality with everything, and I guess the last on we mention too is impostor’s syndrome. If those of us who have it, which most of us have some version of it, are those antibodies goes through the roof this kind of attention and it’s just trying to confuse yourself with symbolic self and try to remember, especially in my role as hospice and palliative care, it feels like I’ve invented the hospice and palliative care. People doing this work working harder than I have ever work and been doing it longer than me and no one knows their name and that’s not something that I can correct, just helps me take this opportunity very seriously and not get carried away with it and not to lose myself in that symbolic role.
Fei Wu: Very small thing I noticed speaking of losing yourself of and I was very, very touched by was the fact that after a long day for you flying from San Francisco preparing for the speech and then having joined us for dinner to the nest 2 to 3 hours and then having everybody come up to you, hug you, express their own feelings, which is all good. Am I noticed that you are the very last person to leave the room and that really meant a lot to me. I’m not saying that you’re obligated to do that every time in every event, but a lot of what we learned as human beings are not necessarily through a very structured speech or specific slides but observing people for who they really are and it’s interesting that we only met for few hours but I know precisely deep down who you are as a person and for a lot of other people they still have the opportunity that might have the opportunity to really meet you in person and spent the time, have a two-way conversation, but instead of reading an article or listening to an audio piece for 15 minutes, this is not the same feelings so I want to mention that because I’m not a superstitions person but if there’s something I do want to share with you about my personal story.
My dad was diagnosed with esophageal cancer in 2008. I would say and he battled with it and eventually passed away at the end of 2009 and during those 2-year period, I was a caretaker for 3 months. I loved my job and was in China and so much of your teaching means the world to me because I was not aware, my whole family was not aware of palliative care and perhaps was not even a service currently offered in China, was rarely offered and even in the place like Beijing which is very unfortunate , but there is that part of me thinking that if there’s anything, if something that I could do which seems that I have been incredibly interesting in a medical world as a result of it, but I do want to share with you then maybe our spirit connected somehow all those years ago. He passed away in the hospital in Canton which is 4 hours away from Beijing. His final wish was to be with his family and that’s where he grew up. But there’s also a tradition where if you had a son, the son is responsible for giving the speech at the funeral and I’m the only child so that no work.
So they want down the list of having his brother speak at the funeral. His brother committed, therefore I was no longer an option, but somehow the night before the funeral, but the funeral only give us about 15 minutes. It’s very, very transactional. The night before the older brother said that he doesn’t going to say anything. I stayed up all night and I rarely grab a couple of pieces of paper wrote the entire speech and I was going to surprise everybody and say something so I did in a way that after reading the Zen Hospice Project like I realize a part of my speech very much unlike the speech of ever here the Chinese funeral. It’s very much the memories, page of the stories wrote by my dad, who as a person and I want to share that with you cause I remember when I’m giving that speech, literally like TED Talk.
The person managing the funeral home was rushing me the whole time. In fact he solved two pages and said “Are you serious, you going to say all that, you have 15 minutes.” This is [0:45:29] [Indiscernible] and won over and everybody was crying. I wasn’t crying at times I was smiling like talking about him as you can imagine I definitely love the impression I don’t think there are people in the room necessarily delighted but the super line of all these is I went back to Beijing just few days later and my speech was spread around so widely. I heard people quoting, may people are not at families, so thank you for allowing me to I feel somehow I wanted to create that experience for him but way before even hospice project existed.
BJ Miller: No, no, no. Well that’s beautiful, Fay thank you for sharing that. Tradition, convention, they really are something. They can be tradition making glorious and beautiful, but breaking with tradition even in small ways and doing something a little bit different and certainly what involves personal vulnerability. It can go so far because that little crack, because you’re going off the script. It can land, it can rob the people the wrong way, but there are certain people out there. It’s exactly what they needed to hear and see someone doing. That’s gorgeous babe. This is where this challenging moments get slap on their head and become as source of great beauty and one never necessarily choose yourself but that seems to be part of their charm and potency and wasn’t choosing that yet you still deal with them.
Fei Wu: Thanks BJ. That was a – thanks for your comments. It really means a lot to me. Kind of hear that from you and especially turned to be at one at a time. You know I had already been studying at the US for a long time so I heard the people among the audience to say, “Ah, she’s Americanized. She doesn’t know what she’s doing.” But so much of what you’re saying, what you do, needs to be reflected in many languages and in particular one that I’m fluent in which is Chinese. I have so many questions now about the way that we as in the Chinese populations still looking at that. I feel like we are cohort that desperately need helping us growing up. We were not encouraged to go to funerals. I couldn’t go to many of them. The first I went to is my own Dad. Since then, I’ve been to in the past few years, I’ve been more because I tried because I chose to be there. Such as empowering feeling with us. I know that we have few minutes left and you know what do you see as the future of your work and how can we start doing something about this.
BJ Miller: Oh well good, okay great. For me my job now is being with [0:48:12] [Indiscernible] public speaking not just in behalf of the field and patience and human beings would suffer and know that they could be different. So public speaking, I have my clinic at UCSF my practice at hospice and palliative care at the Cancer Centre there and then third piece is working on this book [0:48:35] [Indiscernible] my co-author and I are now working on a book, basically a field guide to die. The working title is How to Die: A Field Guide. Is [0:48:44] [Indiscernible] our publisher and we got long ways to go yet but we have draft that is due and those are the big three pieces of my work right now and then meanwhile I’m also probably going to start my own little organization what I’ve been calling The Centre for dying and leaving which would be something about an apparatus or platform for all of us to stand corrected to takes on difficult projects.
We mentioned earlier the need for a branding campaign for palliative care. We need resource centers, but good if a lot of information from the public if we are really are serious about the patient or person-cantered care while those patients or those people we need to know what they want. We need to know what they’re interested in, we also on those people, those patients need a for information so creating a resource center on end-of-life care from social science as well as medical science as well as medical science point of view now therapeutics, the way drug company wired, they’re not really wired, invent drugs to help people better in the moment. There’s not a lot of research energy going into a palliative, just more palliative care, some kind of open that. You know a [0:49:56] [Indiscernible].
You can take another project like prognostication, why is that so difficult and how do you advance that science and I do ask how do you get more hospices in the world when that’s a policy issue. There is a policy issue. There’s a work force education issue and there’s a system issue. Some tried to move on all four friends. As the infrastructure systems, infrastructure, bricks and mortar, including bricks and mortar, Guest Houses [0:50:23] [Indiscernible] not so rare. Places that are nurse involve like hospitals need to be created for long-term care. We need better communication tool s. We need a society that is interested and aware and interested in their own health and well-being and their own deaths.
We need that society to be aware and engage in public awareness like what we are doing right now Fei as a big piece of this. Policy dispute all this work. There need to be a political arm to this effort and again the work force need to be educated and trained which is a total added points to this folk being mortal. To health care system is doing exactly what is designed to do and doctors are doing what they’re educated to do, unfortunately not educated to have difficult conversations or to help people yield the things that cannot be changed or help people to find perspective at means of their suffering. These seems were not taking about medical school and yet this is a subject matter in any clinic, any day of the yea. So those are the four posts that I’m trying to kinds move around on all four.
Fei Wu: I wrote down the four pillars and they know that there are so much to do and there so little time. BJ thanks so much. I really enjoyed the conversation.
BJ Miller: Well, pleasure speaking with you Fei, just as it was back in December and thank you for your interest and for all that you share and I’m glad that we partnered up in this world so with you, thank you so much.
Fei Wu: Well, thank you BJ.
BJ Miller: Okay Fei, take care.
Fei Wu: Bye.
BJ Miller: Bye-Bye.
Fei Wu: Hey, it’s Fei, I’m back for a few words at the end of the show. I hope you enjoy what you heard. You visit us online at Feisworld.com to find out other episodes from this category or topic or you could explore other awesome people whether artist or designers, digital marketers, performing artists, authors and speakers, entrepreneurs, students, educators or some more. For this reason, we’ve taking your feedback and created a lining page to most easily navigate by categories and topics simply visit podcast.feisworld.com to learn more. Sincerely, I have to thank you for your support. Bye for now.
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