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What Follows Is the Audio and Transcript of an onbeing.org Interview Between Krista Tippett and Dr. B.J. Miller:

 <div class="story-meta-left"> <div class="story-logo"> <a href="https://www.dailygood.org"> <img alt="DailyGood" src="https://www.karunanews.org/pics/90x90.jpg"> </a> </div> <div class="story-meta-info"> <div class="story-author">By <a href="/author?name=On%20Being">On Being</a></div> <div class="story-details"> <span class="story-date">Apr 4, 2016</span> <span class="story-read-time">13 min read</span> </div> <div class="story-source">Source: <a href="http://www.onbeing.org/program/bj-miller-reframing-our-relationship-to-that-we-don-t-control/transcript/8387" target="_blank">onbeing.org</a></div> </div> </div>  <div class="story-meta-right">  <div class="utility-buttons"> <div class="dropdown"> <button class="utility-btn translate-btn dropdown-toggle py-1" type="button" id="translationDropdown" data-bs-toggle="dropdown" aria-expanded="false"> <i class="fa fa-language me-2" aria-hidden="true"></i>Cherokee </button> <ul class="dropdown-menu dropdown-menu-end translation-dropdown" 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<div class="dark-link perm_post"> then I’m dead.</p> <p>And that brings me back to this life of the senses and the immediacy of the senses. And the one thing I know is that the body dies. This body dies, and this body is just a big sack of sensors. So that’s the big loop for you right there.</p> <p>MS. TIPPETT: We’ve talked about this all the way through the conversation, about the matter of disability. And I just want to read something you wrote, because I feel like this is very fluid, also — how we are thinking about disability, what we’re calling it. And in your lifetime, in our lifetime, this has been very fluid. You wrote, “Back in 1990, I was treated as a Frankenstein figure or a Christ figure, and it was ridiculous at either extreme. Sometimes I got congratulated for going to the bathroom. Then somewhere along the way, amputees seemed to bust out and a handful went out and did extraordinary things, competing in Ironman triathlons, and the expectations changed. If I didn’t climb Mount Everest, I had failed.”</p> <p>DR. MILLER: Yeah, I still own those words very much.</p> <p>MS. TIPPETT: And again, I’m thinking about the aesthetic. Sometimes, when people write about you, they use the language of — they describe you as a “triple amputee,” which is technically true, but to me, it’s just such — it doesn’t really describe you. It’s very antiseptic language. So I’m curious about how you think about even the language of disability, but also how we’re working with that and struggling with it.</p> <p>DR. MILLER: This is where — really, disability and chronic illness was my way into hospice and palliative care, much more than death, per se, by the way. But disability, it points us — a big theme for me back as an undergraduate and my senior thesis, a subcurrent was my frustration with language. That words can point to things. I know words have their own life as well, but I still struggle with how much potency words have.</p> <p>MS. TIPPETT: Like what are words that you struggle with?</p> <p>DR. MILLER: Well, just the whole — well, let’s just start with you asked about disability. I mean, I’m OK with it, but what was not discussed is, compared to what? What’s the frame of reference? What’s the “dis-”? That’s implied. We can step back and discuss it, and I love when people do, but otherwise you just accept on face, “disability,” that you are less, that it’s something pathological happening. But compared to what? So this relativism of language and the idea of words as signposts, as imperfect reproductions of the reality they’re trying to point to, I just want that to be acknowledged whenever I’m in a serious conversation, that words are the best we have, but they’re so flawed. I just need that to be acknowledged somewhere.</p> <p>MS. TIPPETT: I mean, it’s kind of back to that idea that we’re all carrying around whatever our forms of suffering and struggle are, and some of them show on the outside. And those we call “disability” ...</p> <p>DR. MILLER: Right. Again, “wounded healer,” “disabled.” If everyone considered themselves disabled, I’m all for it. Same thing. I remember when I would go — I haven’t done this is in years, but I would go to — people would invite me to come speak to their classroom, schools, often high schools, or when kids would approach me in a park or something and say, in, invariably, the same way, “Hey, don’t you miss having two hands?” Some version of that question would come up, or “two feet?” or whatever. And I would say, “Well, sure. Yes, I do. I really miss having two hands.” Oh boy, do I miss having two hands. I mean what a treat. You can keep the feet, but I would love — I mean, hands are remarkable.</p> <p>But I would say to these kids, “Yeah. Well, don’t you miss having three?” They’re like, what? They just look at me kind of funny. And I don’t know how many of them ever — I don’t know if that retort ever did any good for any child, but the point was, this is my reality. Having one hand is my complete and total reality. It’s not a half a reality, and I don’t see too many two-handers ruing the fact that they don’t have three hands. And, yet, it’s basically the same relationship to something you can’t control.</p> <p>[<em>music: “City of Lights” by Languis</em>]</p> <p>MS. TIPPETT: I’m Krista Tippett and this is <em>On Being</em>. Today, with B.J. Miller of San Francisco’s Zen Hospice Project.</p> <p>MS. TIPPETT: You’ve talked about love and joy and great hope as experiences of dying when it’s done well. And I wonder how you would — what does great hope mean at the end of life, as you’ve experienced hope at the end of life?</p> <p>DR. MILLER: Hope is such a funny thing. It’s such a squirrely thing. We can do damage with hope, too. It’s a powerful thing. A lot of the data around why some physicians don’t share the full truth of a prognosis with their patients — and, invariably, you’ll hear some version of, “Well, because I don’t want to take away their hope.” And they know that hope is what gets them out of bed in the morning, and wills them to try the next therapy, or whatever it is. Hope is very potent thing. But in my training in palliative care, I learned, whenever I hear that word, whenever I hear the phrase “I hope for,” I’m trained now to ask, to inquire, “Hope for what?” And that, too, is a relative phenomenon that needs to be contextualized, and is much more fluid and malleable than we in healthcare often give it credit for, or we humans give it credit it for. It seems to be like a monolith. Either you have hope, or you don’t.</p> <p>The truth is, we can change what we hope for. And you watch in palliative care, for example, and hospice, that sort of medicine is done well when these informed, skilled conversations play out. You’ll hear providers work with the person’s hope but redirect it. So when I ask someone who is facing the end of their life, if I’m trying to help them understand that time is short, I will talk about what they hope for in their life. And if I hear them say, “Well, I hope to live another 30 years,” but I know they’ve got three weeks, there is a big red flag for me to say, “You know what, man? What if that doesn’t happen? Then what might you hope for? If time is shorter than that, what’s at the essence of your hope?” And invariably — well, not invariably, but very often you can get folks to a place where they say, “Well, gosh, given that reality, what I really hope for is to get to my daughter’s graduation.” And then I say, “OK, well, there’s a goal we can work with.” And if someone says to me, “Well, I hope to live forever,” then I call that a miracle, and I say “Well, let’s hope for miracles together.” It’s just — there is a lot to say about this word, “hope.” It’s something that there is a lot to work with there.</p> <p>But back to answer your question, when time is short, when people are facing the end of life, it’s not necessarily a hopeless endeavor. They may hope to have one more piece of pizza, or they may hope to see that last episode of a show they love. But it can be realistic, and it can pull people along so that they are actually able to play themselves all the way out. And that’s that “living until your final breath” thing.</p> <p>MS. TIPPETT: It’s interesting to me. You work with death as this normal thing, this practical reality, something we’re all — we’re all dying, right? That’s another reason that the physician is a patient, too, right? We’re all dying.</p> <p>DR. MILLER: Yeah, exactly. Yes.</p> <p>MS. TIPPETT: But you seem to hold it together with this enduring kind of reverence, or honoring the mystery of death itself. Do you feel like you understand or that you reckon differently with death as part of your life, differently because of this life you’ve been leading? Is it less of a mystery?</p> <p>DR. MILLER: It’s a great question. There is a history in my field of some spectacularly difficult deaths of people who worked in hospice. I think the admonition to us — “us” meaning those of us who work in this field, whether volunteer or physician or nurse or whatever — is that you don’t seduce yourself into thinking that you know death, that you understand, oh, I’ve got it now. I’ve been through — I’ve been around this block a million times with folks. I got it. So when it’s my time, I’m going to be fine. That is really dangerous. That’s like jinxing yourself. Some of this is knowable, and, for example, teasing out dying and the implied suffering. Dying is different from death, and teasing — most of us are afraid of dying because it implies suffering. And when you get down to it, that’s what most people are worried about.</p> <p>MS. TIPPETT: The dying rather than the death of the being.</p> <p>DR. MILLER: Yeah. So there is a lot I have learned that will help me suffer less, that can help me help others suffer less in that dying process. But I do not pretend to know or understand death per se. And part of what I do, the reverence that you point to is, again, back to this mystery, this thing that I don’t understand that’s much larger than myself, and that — what happens after I die? I don’t know. And, boy, isn’t that interesting? So part of my work, and, I think, when we talk to students, is, yeah, familiarize yourself with the concept of death, and certainly with the concept of dying, but don’t seduce yourself into thinking that you totally know it. Because, otherwise, you’re going to find yourself standing at your horizon one day, and you’re going to be really, extra shocked to learn that you’re terrified when you just assumed you wouldn't be. So it’s easy, just make a little bit of space.</p> <p>MS. TIPPETT: That’s the mystery to it. Yeah.</p> <p>DR. MILLER: That’s the mystery, too. Right. You’ve just got to protect a little bit of space for all that you don’t know.</p> <p>MS. TIPPETT: So you know, my last question, you’ve had an extraordinary life. A lot has happened to you. You’ve taken a lot, and you have this great accident early in your life, the kind of redesign of your life, and the career you’ve had and, now, working with people. And in some ways, you could talk about — what you do is help people design, compose their dying, the end of their lives. This is a huge question, but how would you start to think about what all of this is teaching you about what it means to be human? And I think that another way to ask that is how you carry all of this into the way you spend your days, your life.</p> <p>DR. MILLER: Yeah. It’s a hot question, and it’s an ever-present one. It’s interesting. I’m 44, and I look back and, by most measures, I have had a pretty extraordinary life. And at the same time, one of the most adaptive skills I picked up over the years is really — when you all of a sudden become a triple amputee or anything like that, you’re sent a bunch of signals that you’re different, now, from people around you. And if you stop there, you can really hurt yourself. And you get treated specially, and that has its own seduction, too, and pity. And you can get stuff from pity, and it’s really one of the great graveyards in traversing all this for me. If I were to really yield to this idea that, “Oh yeah, I’m different than those around me,” and just leave it at that, I would have just inserted a wedge between myself and everyone around me that ultimately would not serve me.</p> <p>We are social creatures, and one of the most important things I’ve ever done was to hit on this idea of seeing variations on themes. So, sure, my body is different in a lot of ways. In a lot of ways, my life is different. But ultimately, I see them as variations on themes, and that allows me to acknowledge what’s relatively unique in my life, but also to see myself as just like anybody else in a very truthful and real way, not just made up. So that’s part of my answer to your question. But this idea — I struggle with this. I’m a very busy person, like so many of us. Stupidly busy. Here I have — from my own experiences, but I have what I call all these vicarious deathbed experiences all the time. I’m around people who are dying. And I, of all people, know that time is precious. Don’t squander it doing things you don’t care about. Don’t give it away too cheaply, blah, blah, blah. Spend less time at work, more time with family, whatever it may be, you know. [<em>laughs</em>] I have no excuse to forget that. Zip. And, yet, I find myself incredibly and increasingly busy, sometimes out on limbs doing things that I don’t necessarily want to do or even believe in, on some level. And there is some real moral distress in that.</p> <p>I think that is part of how we burn out, is you have these lessons, but we find ourselves still unable to actualize some of these lessons. So it’s a hot question for me right now, Krista. I’ve got to figure out — I’ve got to constantly retool myself and rejigger how I spend my time. I’m aware that I have too many friendships that have gone fallow. I’m aware that I spend too little time with my parents, and there are other examples. So I’ve got to reproportion myself again.</p> <p>MS. TIPPETT: But you know, what you’re just describing, I mean, you have a consciousness about, what did you say, that we know what we want and, actually, what we should do, and what would be good for us, and we have trouble aligning reality with that. I mean, that is the human condition. That’s the nub of it. You’re working with that.</p> <p>DR. MILLER: I am working with that. But you’re also pointing to — as I get frustrated with how I’m spending my time, sometimes, or not spending my time, not treating it with the preciousness I know it deserves ...</p> <p>MS. TIPPETT: Not designing your time.</p> <p>DR. MILLER: Yeah. That’s right. And, ultimately, I’m landing back, and this is where it is. And this is a creative pursuit, one that takes — sails which need trimming all the time. And seeing this as a creative work that is never done is great, is beautiful, and I’d like to land there. It’s probably a good stopping point. And so all that we just described, even if I can’t honor every minute of every day in this most precious way, well, ultimately, it’s just another thing I get to forgive in myself and to keep trying tomorrow.</p> <p>[<em>music: “Broken Monitors” by Bernhard Fleischmann</em>]</p> <p>MS. TIPPETT: B.J. Miller is executive director of the Zen Hospice Project, an assistant clinical professor of medicine at the University of California - San Francisco, and he’s an attending specialist for the Symptom Management Service of the UCSF Helen Diller Comprehensive Cancer Center.</p> <p>At onbeing.org, you can sign up for a weekly email from us, a <em>Letter from Loring Park</em>. In your inbox every Saturday morning — a curated list of the best of what we are reading and publishing, including writings by our guest contributors. This week, find Martha Park’s essay on carrying guns and loving our neighbors. Find her essay and much more at onbeing.org.</p> <p>[<em>music: “L’Espionnage Pomme de Terre” by Turatara</em>]</p> <p><em>On Being</em> is Trent Gilliss, Chris Heagle, Lily Percy, Mariah Helgeson, Maia Tarrell, Annie Parsons, Marie Sambilay, Tess Montgomery, Aseel Zahran, Bethanie Kloecker, and Selena Carlson.</p> <p>Our major funding partners are:</p> <p>The Ford Foundation, working with visionaries on the frontlines of social change worldwide at fordfoundation.org.</p> <p>The Fetzer Institute, fostering awareness of the power of love and forgiveness to transform our world. Find them at fetzer.org.</p> <p>Kalliopeia Foundation, contributing to organizations that weave reverence, reciprocity, and resilience into the fabric of modern life.</p> <p>The Henry Luce Foundation, in support of Public Theology Reimagined.</p> <p>And the Osprey Foundation, a catalyst for empowered, healthy, and fulfilled lives.</p> <p>***</p> <p><b>For more inspiration, join an Awakin Call with BJ Miller on August 14th: 'How Not to Waste a Good Existential Crisis.' More details and RSVP info <a href="https://www.awakin.org/calls/554/bj-miller/">here</a></b><a href="https://www.awakin.org/calls/554/bj-miller/">.</a></p>   </div> </div>    <div class="inline-share-icons border-0 mt-0 pt-0"> <div class="d-flex align-items-center"> <span class="me-3 fw-semibold">Share this story:</span> <div> <a href="http://www.facebook.com/sharer.php?u=https%3A%2F%2Fwww.dailygood.org%2Fstory%2F1257%2Freframing-our-relationship-to-that-we-don-t-control-on-being%2F" target="_blank" class="share-icon" 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required></textarea> <div class="row mt-3"> <div class="col-sm-6"> <div class="input-group mb-3"> <span class="input-group-text"><i class="far fa-user"></i></span> <input type="text" name="comment_name" id="comment_name" value="" class="form-control" placeholder="Your name" required> </div> </div> <div class="col-sm-6"> <div class="input-group mb-3"> <span class="input-group-text"><i class="far fa-envelope"></i></span> <input type="email" name="comment_email" id="comment_email" value="" class="form-control" placeholder="Your email (not published)" required> </div> </div> </div> <div class="d-flex justify-content-between align-items-center mt-3"> <div class="form-check"> <input class="form-check-input" type="checkbox" id="subscribe" name="subscribe" value="1"> <label class="form-check-label" for="subscribe"> Notify me of follow-up comments </label> </div> <div>  <button type="submit" class="btn btn-info px-4 g-recaptcha" data-sitekey="6Ld9FbYpAAAAAGIucyXK_lxDVb-6tDGgPuXN0OPm" 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href="https://www.dailygood.org/story/1257/-p-what-follows-is-the-audio-and-transcript-of-an-onbeing-org-interview-between-krista-tippett-and-dr-b-j-miller-p-p-p-and-nbsp-iframe-frameborder-no-height-166-scrolling-no-src-https-w-soundcloud-com-player-url-https-3a-api-soundclo-on-being/?t=showComment&cid=9465" class="ms-auto link-icon text-muted"><i class='fa fa-link'></i></a> </div> <div class="comment-content"> <p>Thank you BJ Miller for your insights, humanity, humor and candor. Your views on "hope" brought up something we discussed with Vikki Reynolds this week she called "believed in hope" that is a form of hope in action and is as,you said, relative to context. She shared an example of hope even in the seemingly darkest places like death row. Where the hope may not end up being freedom, but to die with a tiny shred of dignity of one's humanity being seen and shared, even if with only one other person. Was powerful to consider and your views on hope, it being fluid depending on circumstances transported me.</p><p>Thank you.</p> </div> <div class="comment-actions"> <a href="https://www.dailygood.org/story/1257/-p-what-follows-is-the-audio-and-transcript-of-an-onbeing-org-interview-between-krista-tippett-and-dr-b-j-miller-p-p-p-and-nbsp-iframe-frameborder-no-height-166-scrolling-no-src-https-w-soundcloud-com-player-url-https-3a-api-soundclo-on-being/?t=showComment&cid=9465#addcomment" class="reply-link" data-cmt-id="9465" data-cmt-author="Kristin Pedemonti"><i class="bi bi-reply"></i> Reply</a> <span class="btn-light post_btn small"></span> </div> </div> </div> </div> </div> <script> $(document).ready(function() { // Toggle between short and full comments $('.see_full_cmt').on('click', function(e) { e.preventDefault(); var cid = $(this).attr('cid'); $('.short_cmt' + cid).hide(); $('.long_cmt' + cid).show(); }); $('.see_short_cmt').on('click', function(e) { e.preventDefault(); var cid = $(this).attr('cid'); $('.long_cmt' + cid).hide(); $('.short_cmt' + cid).show(); }); }); </script> </div>   </div> </div> </div> </div> </section> <script src="js/story.js?2cue"></script>  <footer class="footer"> <div class="container"> <div class="row"> <div class="col-md-5 mb-4 mb-md-0"> <h5 class="footer-title">About DailyGood</h5> <p class="footer-about-text"> For over 29 years, DailyGood has been a volunteer-led movement to share uplifting stories that connect hearts and inspire action — all without ads, agendas, or asks. 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