Loving What Is

Kate Bowler:                My name is Kate Bowler and this is Everything Happens.

One of the things my father-in-law said when I first got sick was that life is a series of losses, by which of course he meant that he couldn’t play racquetball anymore because of his bad knees. Hilarious, but he wasn’t wrong. Life is a series of losses. At some point, you peak. So how do you live when you’re on the down slope? When you find yourself in the second half of life, or when you’ve had an injury or a chronic illness and now life is limited? Or what about if you feel like you can’t ever reach your full potential because people are depending on you? How do you spend your time and resources when you just have less?

Today’s episode is for everyone who feels like they might not climb every mountain. How do we make choices? How do we live well? My guest today is Dr. B.J. Miller. He is a hospice and palliative care specialist, but before he became a doctor, he became a patient. I’ll let him tell you about it. His story has been featured on Oprah’s Super Soul Sunday, on the TED stage, and in his new book, A Beginner’s Guide to the End, where his work in end of life care seeks to connect art, spirituality, and medicine to offer us a new way to live and die well.

B.J., I am so grateful to be talking with you today.

B.J. Miller:                    Thank you, Kate. It’s such a pleasure to meet you.

K.B.:                             I also hate the fact that, at the very beginning of getting to know each other, that I will ask you about the terrible part first.

B.J.M.:                          I really don’t mind at all. I kind of wear it on my sleeve.

Sophomore year of college, 1990. So I was 19. Just after Thanksgiving holidays, we were just coming back and it was a Monday night, and I was off to the computer lab to print out a paper and ran into some friends. We decided to go have a drink or two, and just relax. We didn’t go wild. We were going to go get a sandwich at the Wawa Market, and we’re walking across campus, and there’s a commuter train that just sits there in the corner of the campus. And it was non-operating, it was just sitting there, and we climbed it like you climb a tree.

I happen to be the first one up, and when I stood up I had a … The wires, the power source for the train, is overhead. So it’s not like a diesel train like some people might know. So when I stood up, I had a metal watch on, and I got close enough to the power source, and the electricity arced to my watch, entered the arm, and ground down and blew out both legs. Then that was it.

Then I was taken to a burn unit in New Jersey, eventually to Saint Barnabas hospital, and I was in there for several months, and had a series of amputations surgically. It was touch and go for a while, but in the end, I got out. I got out.

K.B.:                             Wow. That sounds like it was a very long season of recovery.

B.J.M.:                          Yeah, it was.

K.B.:                             And I’ve heard you say that you adopted the attitude of fake it ‘til you make it, and I’d love to hear more about that.

B.J.M.:                          Yeah. It’s sort of like a lot of things went right, as has to happen, right? I had a lot of support. I got great medical care, I had beautiful friendships, and people really rose to the occasion and rallied. And my family, my parents … I’ve never heard of this. I don’t know if this ever happens, but somehow my parents, who at that time were living in Chicago, they moved into the hospital in New Jersey. I was in the burn unit for about three months or so.

Anyway, the point is I had pounds of support. And I really was trying to recreate a life and figure out who I was and who I wasn’t. There was a lot of pain, as you can imagine. Your body is not so much your friend at times. But I could see land. Thanks to my family and friends, I was out to sea but I could see land. They held the shore for me.

The way it felt was they loved me. They held the other end of the bridge. They loved me, and touched me, and looked at me, and didn’t condescend. They cared for me while I filled in the blanks myself, while I came to love myself again on some level, while I came to accept my new lot. That was the faking it part, it was like, “Okay guys, I have faith in you and you seem to still care about me, so I’ll care too. To honor what you’re doing, to honor life in general, I’ll care too, and I’m going to try.” And it eventually filled it enough gaps that I could stand up and walk around, and walked across the bridge back to land. And here I am.

K.B.:                             That makes sense that people set the horizon for us sometimes. And then sometimes even just them being there. I study prosperity churches forever and they have their own version of fake it ‘til you make it, like it’s our obligation to always be chipper and enact what you hope to achieve. But what you’re describing is a much richer version where people’s love in us can reconstitute our own expectations of what our life could be again.

B.J.M.:                          Mm-hmm, yeah. Because frankly, I don’t know about you, but I think life is generally way more amazing than I’m able to treat it. It’s hard to feel up to the bigness that it is. So I watch myself and others reduce it to make it manageable, knowable, et cetera. But here I was cast into a way bigger field that took a while to catch up with. But in so many ways it was, of course, an enormous eye-opener. And to your point, strangers do this too… hold that bridge, hold that horizon, and remind us how amazing life is until I myself can get back up there and actually believe it too.

K.B.:                             Yeah, yeah. That’s right. I think the part I find exhausting is when Americans, she said lovingly, have this deep desire to believe that we are all limitless. It sounds like you, from a very early age, became more comfortable with limitation than maybe other people.

B.J.M.:                          Mm-hmm. I think that’s true. By force. You know, in some ways the trajectory was heading for a relative limitlessness. I was a hyper-educated white man, able-bodied, all that stuff. I had the running start. But I think from an early age, I think if you just pay attention … And I certainly owe so much to my mother who lives with polio, and so I’ve been around disability forever, so I’ve been thinking about limitations in ways that would probably be different from my peers as a kid. I can’t begin to unpack how helpful my family has been to me in terms of the example they’ve set. My mom in particular, my dad, how he treats my mom, et cetera et cetera.

But this idea that people, like, “Oh, and if you can dream it, it will happen. You can do everything,” and positivism. Especially in California, geez louise, in the Bay area? Oh my lord. If you acknowledge a limitation, you’re just a party pooper. You almost feel like you’re going to be run out of town. Like this is the land of dreams.

K.B.:                             How dare you not send me your good vibes only. How dare you!

B.J.M.:                          Yeah. And I think because a) it’s unrealistic, and that’s a huge problem, but b) I not only accept the idea of limitations, but I’m enamored with them. I understand at a very base level the relationship between a limitation and creativity. That is what humans are really, really good at. We’re not amazing creatures of nature. You throw you or me out in the woods for a week, we’re kind of toast. My cat would do way better than us by some measure. But because of our limitations, we find workarounds. We get creative. We adapt like no other species that’s walked this Earth, and that is completely related to our limitations. So I’m enamored with them. I’m almost grateful for my limitations.

K.B.:                             Yeah, yeah. I really appreciated the way that so much of this is born from your insider’s perspective. Hearing you talk about your experience as a patient, I just loved even just what the word patient conjured up for you. You’re asking people to remember that when you’re in the bed, you have to be patient with your own limitations. You have to live in a world that is bounded for you in ways you might not have picked. It seems like when you come into the room, you bring a kind of 360 view to that, maybe for your own patients.

B.J.M.:                          I really do think, and I feel very lucky in so many ways and we can open that up… I don’t want to be Pollyannish in any of this, but I will say where it relates to my profession, I do feel very fortunate to have had the experiences as a patient. And I have taught a fair amount in the School of Medicine and the School of Nursing here at UCSF, and I find myself with these slightly sadistic fantasies that anyone who’s going to do clinical work somehow ends up having something horrible go wrong that lands them in the bed essentially because it’s such an incredible education, and it provides insights that you’re going to be hard pressed to get from a book.

And because my disability is so dang obvious, I just get to walk in a room and immediately everyone knows I’ve been through something, and I’ve been a patient. Somehow my life didn’t go as I had hoped or planned, and that just immediately, practically and instantaneously, gets me to a better place with patients. Perhaps maybe a more trusting place.

K.B.:                             When I first got sick and I wanted treatment, I immediately thought that when someone said palliative care, they meant that they were giving up treatment for me. But it’s not. Would you mind just telling us a bit about some of the misconceptions of palliative care?

B.J.M.:                          Oh yeah. Palliative care… the word palliate just simply means “to ease” or “to cloak.” That’s it. It’s basically multiple disciplines getting together on behalf of lessening suffering and optimizing feeling good, feeling as well as possible. That’s the goal of palliative care, period. Irrespective, you could have one hour to live, you could have a century to live. It doesn’t matter.

So to be super clear with your listeners, you do not need to be dying at any time soon to benefit from palliative care. You just need to be struggling, and it’s pretty darn easy to struggle with illness and struggle with the health care system. There’s no shame in it.

K.B.:                             Palliative care can be almost more of a way of life, even just accepting the idea that we’re limited. And that was hard for me to come to, but I was blown away when you described it in musical terms and you talked about the crescendo, and just being able to follow the song through until its end. That’s the heart of it for me whenever I hear you give a talk, is just that you’ve come to accept limitation in this really generative way.

B.J.M.:                          Gosh, that’s a wonderful take away, and that message does really make sense to me. Then you’re in an engaged point of view, you’re off your heels, you’re leaning into your life, you’re working with your limitations. You’re working with reality. You’re working with a fuller view of reality. Reality is pretty amazing, and hard, but amazing. And to divvy it up and say, “This part of life is … No, that’s not for me. I’m going to have all positives, no negatives.” Honestly I’d almost rather we just banned adjectives altogether. Just deal with whatever is; good, bad, black, white, rich, poor. So much harm gets done by our labels. When we tell ourselves that we are one thing, we are saying all these things that we’re not. And the truth is, I would’ve never, interestingly … I don’t know about how you feel, Kate, with your dance with illness. But I have to believe I would’ve learned some of these lessons otherwise.

But I have come to love my life and loving my life means loving every ounce of it. I don’t get to handpick and quilt it together. I have to love all of it. That’s the charge. And that I’ve learned really directly related to my injuries. I don’t know how else to say it.

K.B.:                             I think what’s hard though for me, like when I allow my mind to just do that reach where it can try to love all the scope of it, I think what’s so hard though is I just keep bumping up against the fear. I think it’s hard for me because I’m so grateful for everything I’ve discovered once I realized that I was on the losing team. I’ve come to really embrace that, but whenever I want to embrace it I keep bumping up against being afraid.

B.J.M.:                          Afraid of anything in particular, may I ask?

K.B.:                             I guess just like if I don’t live long enough, then I will have not been a mom for long enough, or been a daughter for long enough, or a wife. I guess a lot of it is just focused on the people I love. And I don’t know. Yeah, that part. Incompleteness, I guess, scares me sometimes.

B.J.M.:                          Well, and I don’t pretend to have advice for you, but do you think… To whatever degree your life might be incomplete in the end, do you think there is such a thing as a complete life? Is there a line in there?

K.B.:                             Yeah. Because I guess one of the things I really appreciated about reading your work and listening to you is it makes even the shorter songs feel a bit fuller. Like if you can work with the end in mind, you can live with more richness. I guess it just feels like richness for me sometimes, like, we can’t know if we’ve given enough to the world, I guess, if that makes sense.

B.J.M.:                          Yeah, what would be? What the heck would be enough? When would it be enough, and how long is a long life?

K.B.:                             Yeah. I have a different view of that now, and I wish I knew that math. I wish anyone could just give me that math. You’d be like, “All right, 44. That’s it. You just have to hit 44 and you’d be awesome. You’d have done it.”

B.J.M.:                        Yeah, well, no such luck. Life is way more mysterious, isn’t it?

K.B.:                             It is.

B.J.M.:                         Way more demanding.

K.B.:                             I used to have this totally lame desire to have an app that would go off … So I’m always at these academic conferences and there’s like 2,000 receptions. And I’m always at a reception and someone’s like, “Oh hey, we should go down the hall to this reception.” And then you’re at this other reception, and truly it’s lame and you’re really wishing you were at the other one. And long ago I decided, “Wouldn’t it be awesome if you had an app that went off when you were at peak fun? And then you could relax and really enjoy what you’re doing.

And when I read your stuff, I thought, “Oh man, how do you learn to be more attuned to peak life so that you’re not the person who lives with regret?” And I think part of it is giving up maybe on the framework of regret.

B.J.M.:                          Well, I’ve really surprised myself at how prone to regret I’ve become of late, and I don’t really understand why, and so I’m wondering what it’s trying to tell me. I do have a bratty piece of me that just doesn’t understand that I can’t be everywhere at once. Like I honestly don’t get it. Maybe I’m a narcissist. I don’t know. Maybe I think I could do anything and everything, and I’m kind of offended.

K.B.:                             Oh, I totally think that about myself. I love this! Yeah.

B.J.M.:                          I feel like offended that I can’t? There’s a piece of me that wants to pout, and it’s an old piece of me, and sometimes it pops out and gets a little bit more air than others. And I’ve been in a zone lately where it’s just … I’m filled with regret. I start my day and end my day with feelings of regret. I don’t know what to do with it, but it does point me back to something I was going to say about fear, which is I think part of the message of this way of rolling all experience into a full life, I think that must mean having the full spectrum of emotions, including fear. And so at least a technique that’s worked with me for fear, and with some of my patients, is like, “Yeah, no, you get to be afraid.” The goal here isn’t to stamp out those pesky, untidy emotions. No no no. It’s a much bigger charge. Existential fears are to be listened to, are to be heeded. It feels like a reminder in us saying, “Hey, hey. You’re not going to live forever. Hey, hey. Take it seriously, man. Hey, use your time. Hey, appreciate it right now.” And that is related to, “Find meaning. It’s out there, make it, create it. Relate, pal, while you can. Do it while you can.” It’s a regret-avoidance kind of muscle in us.

And so in other words, there’s something vital about existential fear versus fear of snakes or fear of heights. Well, you just avoid snakes and don’t go up on heights. This is a fear to be respected. It’s a fear that I think demands and gets easier the closer we look at it, the more we work with it rather than try to run from it.

K.B.:                             Yeah, it’s a regret-avoidant fear. What a smart thing to say. Because I don’t want to be one of those bucket list-y people who are like, “Nothing is important if I haven’t seen the pyramids.” And then you see other people who want to treat life like it’s this really awful all-you-can-eat buffet, maybe like the Denny’s kind where you’re just like, “Nom nom nom!” and you’re just consuming forever. I do really love the idea that it does make you make different decisions when you live with the end in mind.

B.J.M.:                          Yeah, and I think in a positive way, on balance. I get why a lot of us try to run away from all this stuff. If we could actually run away from all these pesky thoughts and our mortality, if it were possible, I might go for it. I might advocate for that. I guess I’m just here to say it’s not possible, and therefore…

K.B.:                             Sure. You’re like, “I’ve done a survey, everyone dies. Given the results of the survey, I’ve come back to you to tell… ”

B.J.M.:                          Exactly. “I’ve changed my mind and it turns out… ” Right. No, exactly. And I think that’s a really important piece here. It’s not like I love death and I love limitations just because I’ve got some weird dark streak. It’s just, no, I love them because they exist. And my charge is try to love what exists, including myself. So that feels like an important asterisk in this.

K.B.:                             Yeah. You have this new book, A Beginner’s Guide to the End, and when I read it, it felt like a real how-to guide. It reminded me of when I was reading What to Expect When You’re Expecting when I was pregnant. It has this very similar practical, no secrets kind of approach, a list of almost things to be prepared for. So who was this book for?

B.J.M.:                          Yeah, it is. It is meant to be extremely practical but supportive too, we hope. We hope we got the tone right. One of the challenges with all this stuff, with a how-to guide, with any sort of constructive preparation work around dying, if you’re not careful … I’ve watched myself do this with people accidentally. We talk about the aspirations, about the opportunities along the way, about what can still be and how to reframe hope…all really important. But if you follow some of the logic out, you might feel a sort of pressure to get it right. And the last thing on Earth I or Shoshana, my co-author, ever would want to do is set people up to feel like they’re failing at dying.

The second we say, “Here’s a way to deal with it so you’re not quite so miserable,” and if someone doesn’t do all those things and they’re a little bit more miserable than they want to be, and then they’re going, “Oh crap. Now I’ve failed at dying. I can’t even die well.” That would be a horrible. I hope to God that we got that tone right.

But that’s a really important distinction. The very first line of the book is, “There’s nothing wrong with you for dying.” Yeah, preparation, planning is important, but if there’s a real big meta message, it’s “Don’t be ashamed of your nature. Don’t be ashamed to die.” Don’t do that to yourself. We’ve got enough pain to deal with.

K.B.:                             Yeah. And it was also nice in its scope because it’s for people who are sick or people who are elderly, and also just for those who love them.

B.J.M.:                          Yeah…. When Shoshana and I were writing this thing, this beast, we were trying to figure out your question, “Who the heck is really going to read this? Who’s the audience?” And what we decided to try to do is to write to the patient, the person who’s actually just got a diagnosis, or is somewhere on the spectrum of life either coming to an end or being challenged to our bones. So it’s meant to be practical, and the information is geared to the patient, and the tone is geared to the patient as a rule. But the secondary audience is the caregiver, and our thesis is probably that more caregivers will read the book than patients, although it seems important to respect the patient and speak directly to him or her.

So one of the things that happens, I don’t know if you’ve had this experience, Kate, is it’s amazing how people find ways to see through the actual patient… I don’t know if you’ve ever noticed this, I notice it all the time with people in wheelchairs, like my mom uses a wheelchair. I’ll be with her and people will talk to me, not her. People will talk to my dad and not her. People will see right through her. So for so many reasons, we didn’t want to actually make that mistake and assume that the patient wasn’t reading this. No, they’re our primary audience.

K.B.:                             Yeah. I’m just thinking about what you said about minimizing fear and it made me wonder what kind of advice you might have, or we might be able to come up with, for people who want to be a little more comfortable with their losses?

B.J.M.:                          For me, what has been very, very helpful, when I start pondering loss, pondering grief, pondering coping, is reminding myself that the loss hurts because we care, because we love. They are absolutely, directly correlated. And so that has allowed me to, when I feel loss, when I feel grief, I’ve gotten much better at reminding myself, “Hey man, that’s love talking.” And that just casts a totally different climate around the suite of sensations that go along with all this. And that reminder has proven, at least for me and some of my patients, has been very, very helpful.

K.B.:                             Yeah. Like making a little bubble around it that says, “This is beautiful. That’s why it matters.”

B.J.M.:                          That’s why it matters, and that’s why it hurts that it’s going. It’s completely, directly related. It’s not a silver lining or a fringe benefit. No no no, this is like a one-to-one correlation, a direct relationship.

K.B.:                             Yeah, between things you love.

B.J.M.:                          And grief.

K.B.:                             And maybe even just that image you gave at the beginning of the bridge. It feels good to be anchored by both people and it feels good also just to see our lives as bridges where you know the beginning, and we’re all hoping we’re just near the middle, but it’s good just to see the other side, to see the destination, and just get that sense of horizon that comes with seeing the scope of our lives.

B.J.M.:                          Yeah. It is grounding, I think. In some way, we know where we’re headed.

K.B.:                             Yeah. It makes us great at parties. People love it when we bring it up. Man, I’m so glad you’re in this club with me. It really makes me really happy.

B.J.M.:                          Well, it’s getting bigger, our little club, sweetheart. There’s going to be a lot of people begging to come to this party. There is some truth to that. Our stories are going to become less and less exotic just by the demographics, and that’s kind of a fascinating notion.

K.B.:                             Well, my deep hope is that we all become a little more comfortable with the social scripts around suffering. And maybe in the meantime I’ll take racquetball up just to piss my father-in-law off.

Hey, thanks so much for talking with me today. This was such a treat.

B.J.M.:                          Thanks, Kate.

K.B.:                             It always drives me a little crazy every time someone says, “The best is yet to come.” Because I want it to feel okay again to say, lovingly, sometimes it isn’t. Sometimes we lose things. Sometimes we have crescendo-ed. Sometimes we have finished singing the song of our amazing racquetball career. Sometimes we’ve finished humming the tune of our parenthood, either because we didn’t have that baby or they’ve grown. Maybe you’re playing the closing notes of a parent’s life, or a friend, or a child. I want it to feel okay again for us to sing knowing that someday the last note will be sung.

I have a lot to sing about. I may never be an amazing racquetball player, sorry dad, but I can make difference choices if I’m allowed to work backwards. Asking myself how I might spend my time, best efforts, gifts, and resources knowing that I am limited.

There’s this beautiful story in Atul Gawande’s book Being Mortalabout a study where people were asked who they wanted to spend time with. So they asked little kids, and teenagers, and adults, and then the elderly, and they found it went like this: Little kids wanted to spend time with their family, and teenagers wanted to spend time with their friends, and by the time you asked the guy in his 30s, he wanted to meet Bono. But then the closer people grew to death, the more they wanted to spend time with their closest friends and family again. The horizon shrunk back to that beautiful, precious inner circle. I get that. We make different evaluations about what to do with our time when we live with an awareness of the end, and what a gift to be able to see that with such clarity. So let’s sing our songs about our beautiful, ridiculous lives. We will peak and crescendo and approach the finale hoping for a pretty damn good finish.

Voicemail 1:                    When my dad was diagnosed with ALS, I took up birding as a hobby. It had been one of his and I had resisted his efforts early in life to get me into it. I took it up because it gave us something to talk about while he was sick other than talking about that he was sick and would one day die. I confess, I birded a lot after his death. It made me feel connected to him as well as giving me space to grieve.

Voicemail 2:                    In September of 2015, my baby son was born sleeping, and his death hit me with such a sense of shock and trauma and grief that I had never really experienced before. And I was knocked sideways, and I wasn’t really sure how to recover from that. A little while later, I wanted to somehow move my focus on something that I couldn’t do to something that I could. I wanted life. And so I started a choir up at my kid’s school, and we had 30 kids coming along, and together we sang. And it was a joy. It is something that I wouldn’t have had the time, or the energy, or the motivation to do if I hadn’t experienced such a sudden loss. Whilst I would not wish to go through that again, I’m thankful for where it has brought me.

Voicemail 3:                    I wrote poetry after my grandfather died. It helped me better capture the little details about him that I was afraid of forgetting. I find that I often lose those small details in longer form writing, so poetry was a nice challenge that kept Pop-Pop breathing on the page.

K.B.:                             So many thanks goes to our amazing partners who make this all possible: The John Templeton Foundation, the Issachar Fund, the Lilly Endowment, North Carolina Public Radio WUNC, Faith and Leadership: An Online Learning Resource, and Duke Divinity School. Not to mention my team, Beverly Able, Jessica Richie, and Be the Change Revolutions. I’d love to know what you think. Leave a review on Apple Podcasts and find me online @KateCBowler. This is Everything Happens with me, Kate Bowler.