Episode 2: This is Going to Hurt Just a Little

Guest: Dr. Ray Barfield.

This is Everything Happens. I’m Kate Bowler. If you’ve been listening from the beginning, you don’t need this — you already know what this podcast is about. But if you’re just joining me this is a podcast about what we learn when we go through awful things. What we learn in the times when life isn’t bright and shiny and picture perfect.

I wanted to do this podcast because I’ve learned a lot going through my own horrible times since being diagnosed with Stage IV cancer.

After my horrible diagnosis, my parents rushed down to see me and my friend Ray Barfield, who’s a pediatric oncologist at Duke University, came over. And he did something extraordinary that really helped us — but I’ll tell you more about that later. First, I’d like you to meet Ray. He’s a doctor, healer, poet, and novelist. And what I love about Ray is that he’s a straight shooter. He’s here today. Hey Ray.

RB: Hey.

KB: So, when I first met you, I only knew that you were a fancy doctor who also somehow wrote books about poetry. But when I was diagnosed with cancer, I realized pretty quickly that you were a different kind of doctor. You’re a pediatric oncologist. Now, I haven’t let you read my memoir yet, but do you mind if I read you a bit of what I wrote about you?

RB: Please do.

KB: Okay. “I’m sitting across from my friend Ray, who’s a pediatric oncologist, which just says everyday he talks to children and parents about tumors and white blood cell counts and life expectancy. He is a shepherd of little lambs who are often plucked up by cancer and led to slaughter. When I look at him, I see the dogged expression of a man who fights, even though he might lose. Every day he sits down with someone’s mother and father and looks them in the eye and says, ‘There is hope,’ or ‘I’m sorry.’ He knows it’s like to explore the world.” Did I get that right?

RB: You got that right.

KB: It’s a weird thing about you, this part of who you are, what made you choose pediatric oncology?

RB: I’ve thought about that question. I went to medical school to be a surgeon.

RB: I went to medical school to be a surgeon and spent hours in front of the television to practice my knots, and I read through the textbook of surgery, and I just loved it. I loved the craft, I loved everything about it. My junior year of med school, I was on the trauma service, and I was guiding it because I wanted to be a surgeon and I needed them to like me.

 RB: And they gave me a patient who had, he had jumped off a wall running away from the police and dislocated his knee and tore his injured his vein, so he ended up on the trauma service. He was fifteen, so they kept him on the pediatric ward. And they gave him to me as my patient, so I would go and see him every day. And as I watched the nurses and the doctors, I thought, you know, this is how the rest of the hospital should be. The rest of the hospital was where I had been living. When I hit the pediatric ward, I just saw how they cared for the kids, and I thought, when I’m sick, this is where I want to be. I want to be in the pediatric ward.

KB: What was it like, just friendlier? Or more human?

RB: A lot of it was gentleness. Because they knew that the kids were scared, that they didn’t know what was going on.

RB: Well, the thing is, most adults who are in the hospital are scared, and they don’t know what’s going on. And they need to be treated gently.

KB: So it has this weird way of being a whole world, like, and then, I don’t know … because that’s who you are to me. You’re someone who sees both parts of my world. You see the professional shiny fancy stuff, and then you see the part that’s just the beeping and the beeping and the moving in and out. And your ability to kind of peek behind the window, I think is part of your magic.

RB: Well, you know, one of the reasons that I can see things with you is that I know you.

It’s the same with my patients. You know, that was another thing that I noticed on the pediatric ward. On the oncology ward. Was that they knew each other. And the thing is, when someone comes in, the most common childhood cancer is acute lymphoblastic leukemia. And that is a 2 & 1/2 to 3-year treatment. And so even just during the active treatment phase, we really come to know the children and families. You have to know something about a person to be able to peek into more than just their biology. If you just look at the medical biology record, you’re just going to see a bunch of numbers. So, those things converged, and um, there’s something else on the ward that was an intangible. I might call it spiritual? The way that people were present to these patients.

KB: Yeah.

RB: I don’t know how much my own fear of cancer played into my attentiveness, my mindfulness, because these weren’t adults overcoming – these were children and their families overcoming it. And somehow that just, you know, cranked everything to a new level.

KB: Yeah.

RB: So I became open. I opened up on that ward. And when I walked off the ward to go to my next rotation, it was sort of back to business as usual, and I thought uh-uh.

KB: Yeah.

RB: I need that other thing.

KB: It’s funny … that image of being there versus being in the business as usual world, because, people are unlucky in a million ways. But I did feel like cancer felt like discovering a secret about the universe. And it made me feel more… porous? More open to everything. And the fact that you found it, but then you cultivated it, is kind of amazing. A little weird. Because I think honestly, that’s the part of life everyone wants to skip.

RB: Yeah.

KB: Like that horrible open, cracked open to everything feeling. I think it gives you incredible perspective, but people want that as the liminal stage. Like “thank you, I passed through, I earned perspective.” Like a life enhancement project. And we’re done.

RB: Yeah, you’re absolutely right. And one of the things that I’ve become interested in the ways that doctors break. As a doctor who broke. And had to rebuild.

KB: Yeah, I kind of wanted to ask you about that. You mentioned a few times that there were times when it just felt like it was too much. And I wondered if you wouldn’t mind talking about what it’s like when caring becomes, yeah, something that breaks you.

RB: Sure. You know, there’s kind of a breaking and remodeling process that turns out just to be growth. And change. And I still fail. But where it came to, a moment, that I point to, was um, when I first began doing bone marrow transplant. After a couple years of doing it and using my tools of distance and professionalism and these sorts of things, I found myself increasingly feeling isolated. Actually feeling more alone with the suffering that I was bearing witness to.

RB: Families were regularly saying, Ray, here’s a seat, in the front row. We want you here in the front row of our hardest thing. And I would spend the majority of my time talking about biology, which is a good thing. They want me to know some things about their biology, and to help them with that. But when a patient would move past that last little beacon of possibility for cure, it made less and less sense to talk about the biology.

Back at the beginning, it made a whole lot of sense. “Yeah, this doctor’s going to cure me, you know, we came all the way to Memphis, Tennessee to a major children’s research hospital so this doctor can cure me.” So it made some sense then to talk about the biology. Well, as bone marrow transplant physician, treating high risk patients, which is what we did, with an experimental approach to transplant, we had a 40% mortality rate.

KB: Wow.

RB: So 40% of the time, I didn’t know what I was doing. 40% of the time, I didn’t know the next thing to say. I had not been trained very well in pain or symptom management either, so the patients were uncomfortable. We didn’t have another approach to try to cure them. So my strategy was to awkwardly summarize the day, what I saw in the labs, and then to skedaddle.

KB: Yeah.

RB: Move onto some place where I could do something. Alright. That’s a kind of abandonment. And it doesn’t sit very well with a person, which I am, who cares about people, which I do.

RB: And I came to a place where I thought to myself, you know, this is the job that I’m made for, and I’m failing. I mean, I can’t do this. 40% of the time, I don’t know, I’m afraid, and I’m alone. And they’re afraid, and they’re alone, and I don’t know how to reach them.

So I either need to take the advice I’ve gotten my whole career and figure out that whole language of distance and professionalism and boundaries and protecting my heart, that kind of thing, and I’ll just go cold, that’s how I’ll deal with it. That’s how I’ll do the long game. And there’s utility to that. It keeps me in the game, I know a lot about transplant, I cure a lot of kids, I won’t burn out.

KB: Yeah.

RB: Or, I can just kind of die a thousand deaths and never figure out what it is to stay present, to pay attention, and to learn, and to actually be able to see the person. You know, because I’m scared myself.

KB: Was there a particular, like, kid, that broke your heart?

RB: Mm, Allie. Yeah, there were two sort of side-by-side. They were friends. Allie and Emma Grace. Allie was 12 years old, Emma Grace was 6 years old.

KB: Aw.

RB: They were the ones where I learned my own inability to continue to be present. And to be, you know, not even a doctor, just to be there as a person.

KB: Yeah.

RB: Just to show up.

KB: Yeah. To have the horrible front row seat to their life and death.

RB: Even if I didn’t know what to do, just to show up. They were the ones who taught me that that’s what I didn’t know what to do.

RB: So, we transplanted both of them for a disease called neuroblastoma. Their parents were the donors. It was an experimental, again, approach to the transplant. And it worked. The neuroblastoma went away.

KB: Wow.

RB: But, Allie, Allie was just wrecked by the transplant. And over the course of about 6 months, she died. And she died slowly.

RB: This is, the things that I did, I made myself go up there … I loved them.

KB: Yeah.

RB: I loved these two girls, and I loved their families.

KB: Yeah.

RB: Both moms were a lot like you. They were hilarious.

KB: Nosy.

RB: They were nosy. They were rude. They were smart. They drank wine in the parent room when they weren’t supposed to.

KB: They sound perfect.

RB: They were absolutely people who you would love. And the kids were just beautiful. It was devastating to walk up and see them. But I did. I would go up every day, I would go up. I’d make myself go up and talk to them.

KB: Were they both sick?

RB: Mhm.

KB: So Allie was sick –

RB: Allie got sick first. Emma Grace got sick next. And Emma Grace ended up with a pneumonia that destroyed her lungs, and that’s what she died from, and Allie just died from complications of the transplant.

KB: So you’re watching these two little kids deteriorate every day.

RB: Watched them both deteriorate every day.

KB: Aw.

RB: And had no idea what to do. We would manage the intensive care unit together, the intensivists and the bone marrow transplant physicians, so I remember one day Allie being down in the intensive care unit, and sick, just her body disintegrating. She was on a ventilator; she was on medicines to keep her blood pressure up. Her kidneys failed, so she had to go on dialysis. And her liver began to fail.

 RB: And one of the ways we follow that is her bilirubin, you know, yours is probably 1.5 or 2, I’ve seen your movement bilirubin.

KB: Yeah, you have actually.

RB: I don’t know if I’m allowed to say that on the air, but I have seen your bilirubin, and hers was in the 30s. And I remember walking in, I would prepare myself to go into the room, because I knew her mom was going to do, “give me some good news.”

KB: Aw.

RB: So I was always prepared with good news. But sometimes my good news, and this is a very specific moment that I remember, was “hey good news, your movement dropped from 35 to 33.”

KB: Yeah.

RB: She’s on a ventilator, she’s on pressers because her cardiovascular system is failing. She’s on dialysis because her kidneys are failing. Her body is falling apart. And her liver’s failing. But her movement went from 35 to 33 and I’m like, “Well, it’s going in the right direction.”

RB: So there came a point, we took her back up to the bone marrow transplant unit, when she was off the ventilator, but she needed to stay on dialysis. And she was miserable. I’d go in the room. “Hey Allie.” “Hey.” “So they told that you’re hurting.” “Yeah.” “Where do you hurt?” “Everywhere.”

KB: Yeah.

RB: And this was all day, every day. If you ask her how she is, “I hurt.” “Where do you hurt Allie?” “Everywhere.” So one day, she’s getting dialysis, we’re just keeping her alive, if we were to stop the dialysis, she would die. I remember waking up and drinking my coffee and thinking, we cannot do this anymore.

 RB: We are torturing her. We are torturing her. And I resolved to talk to her mom. And say we need to think about what we’re doing and why we’re doing it. Are we giving her a gift or are we just afraid to let go? You know, and so as I was driving in, I, because I have ADD, I’m always on empty. So I stop at the gas station to fill up my gas, and I got a phone call. And it was her mom. And so I answered, and I said “hey.” And she said, “Ray, we have to talk. We cannot do this anymore.”

KB: Yeah.

RB: We’ve got to stop. So the same morning, we both came to the same conclusion.

RB: And it was a galvanizing time for me, because when I went in, I had a different kind of conversation than I had ever had in my practice, and Allie was too sick to participate. She was so sick she didn’t want to talk, she didn’t want to see people. So her mom and I went into the parent room, and both of us just bawled for 45 minutes.

KB: Yeah. Aw…

RB: And made some decisions, you know?

KB: Yeah.

RB: And, um, it was devastating. Emma Grace got sick a couple months later. And she died.

RB: And that was, that was the break. That was where I just broke. And began to realize that, I would either become very unhealthy as a person if I stayed in it, or I would have to find a way to reassemble the pieces but in a better way than I had been formed.

I lost confidence in the formation process. Not in the biology. Not in the medicine that we can do. That’s always astonishing. But the fact that it’s astonishing is what makes us ignore all the brokenness that shows up in these people, these doctors. Doctors are who I know the most. A nurse could tell you about the insider nursing experience. They seem a lot better than this than doctors.

KB: Well, I mean, the thing I always felt you were able to see clearly about me, is that like doctors, I prefer binaries. I’m either winning, “your best life now,” I am shiny and climbing ladders, ladders, ladders everywhere. Or I am failing.

And then, when I was sick, I mean, I just went into this weird performance mode, where on the outside, she’s singing and dancing, and in a reality show about a very plucky girl who has cancer and then privately withering away. And you were the person who helped me try to move past binaries.

And I’ll never forget, I think of it more as an intervention, that you had with my parents. Okay well, a couple things happened and I’ve always wanted to ask you about it. So, my parents and I were sitting outside, where I spent most of my time when I was sick because everyone was grieving me, and it just took up a lot of space in the house, in my opinion. People were like, making soup, for no reason whatsoever. My mom was always passing out like, hospital surgical masks, and I would spend all the rest of my time convincing people they didn’t have to wear them.

KB: And so I would sit outside. So I was sitting outside with my parents, and you came and you brought wine, which I thought was so funny.

RB: Yeah, because like, liver meds…

KB: Yeah.

RB: Trust me, I’m a doctor.

KB: And I’ll never forget. You like, put the bottles of wine slowly over the side of the fence. I saw the wine first, and I thought, “oh, thank god, Ray is here.”

And you pop by, and of course, my parents are in shock, and none of us really know, I mean just what you were saying about, at some point you just don’t know what to say. There’s not a lot of decisions to make, and there just wasn’t any decision to make.

KB: And so, you sat down– and I love that you sat down on my side with me, as opposed to over there with all the healthy people. And then you said, “I am so sorry this happening, this is awful.”

It was like the first person who had ever said that out loud. And um, I was so struck by that because everyone is busy managing you, and it makes you feel crazy. So that’s my first question. Did it take you a while to be that person that acknowledges the truth, because I have found that just saying out loud, like, “wow, this is what it is”, had a real healing power to it.

RB: It took me years. Because I mean, once again, not to emphasize the point, but doctors are human too. And there’s a thing about saying true stuff.

RB: When I think about, for example, first telling someone about their diagnosis.

KB: Yeah.

RB: I know before I open the door, that the family’s in the room, and that they’re living the last moments of a certain kind of life.

KB: Yeah, it’s the great “before.”

RB: It is the “before,” it is the great before.

KB: And you are bringing the “after.”

RB: I am drawing them the line, and then everything after is different.

KB: Yeah.

RB: And not “win the lottery” different.

KB: Yeah. Yeah, there’s no Vanna White. There’s no –

RB: There’s no teasing of the object, there’s no, none of that.

KB: You do bring the terrible.

RB: It is terrible.

RB: And when you first bring a diagnosis into the room, you have a pop-off valve.  You have your escape which is, “But we’re really good at treating this now.”

KB: Sure.

RB: We’re, you know, “we’ve got decades of research behind this,” and you can instantly go positive.

KB: Yeah.

RB: The moment that you deliver the bad news. So you can relieve yourself of the very sad thing that you just had to say.

KB: I love that idea though, of just bringing the truth into the room.

RB: Yeah.

KB: Because you’re right. It has weight and dimension to it. Everybody has, when they have these terrible conversations about anything, you bring it in and it takes up space.

RB: It takes up space! It absolutely takes up space. And I’ve learned that if I don’t even breathe between delivering the news and moving immediately to the pop-off valve, I haven’t allowed this thing to be in the room.

RB: Where I learned that was from all the times I had to go in the room when the cancer returned. And I didn’t have a pop off valve. All that was in the room was the truth that the cancer had come back.

KB: Yeah.

RB: And the answer to “What do we do now?”, if I’m telling the truth, you know, is that we have a very different kind of conversation that we’ve ever had before.

I’ll tell you that, for a long time, I would, before I would go to tell someone that their cancer had come back after a bone marrow transplant, which means that they had had the best we have.

KB: Yeah.

RB: I would print off phase one trials that they were eligible for, and I would have them in my hand so that when they said, “Well, what do we do next?” I could at least say, “Well there are these experimental trials.” The way you talk matters. So I could say, without telling a lie, “There are these experimental trials.”

RB: “Now I have to tell you that there’s probably less than a 20% chance that you’re going to respond, but we can sign you onto the trial, you’re eligible, I’ve checked, I’ve looked into this.” That’s what I say. Or said.

Here’s what they hear. They hear, “Well there are these experimental trial, “oh, the experimental trial you mean the thing, the silver bullet. It’s like at the cutting edge.” Right? That’s what they hear.

“Um, there’s less than a 10-20% chance that your child will respond.”

“Wait, wait, a 20% chance that my child’s going to be cured. Yeah, I’ll take that. You line up 100 people and 20 of them walk out cured, you bet I’ll take that.”

KB: Yeah. So you like bring the shiny thing in your pocket?

RB: So you bring this thing in, and the way that you say a thing can lead a family to hear hope and you can turn a thing that’s not really the thing they’re hearing into a thing they want to hear, and it becomes a pop off valve, which relieved me as the doctor from having to be present –

KB: And you just moonwalk out of there as fast as you can?

RB: Exactly. The advice that I got about delivering bad news, in my training, was never let the family come between you and the door. Is that not the worst advice you’ve ever heard?

KB: Are you serious?

RB: So it’s the opposite of the thing that is most needed in the moment. Which is a kind of patience or willingness to be quiet long enough for the family to breathe, to cry, to gather themselves, to refocus, to give you permission to continue to talk.

RB: And to just be there.

KB: Well, that’s something I took away almost immediately from you and this thing you do, which is, I think the ministry of presence. Like yeah, the terrible takes up space. So you’re right. You have to let something else take up space because once something bad happens, there’s this weird frenzy to it, right, because your mind is grappling and really spinning through all the terrible.

But your ability to sit there until sort of that spinning top slows and eventually at some point just sort of conks over, and then you’re still there. Because most people, I think their experience of awful news is that it’s lightning, and then when they look around, there’s just debris. And to be that person afterwards, I think that’s the real – I mean, that’s where the important conversation starts, but I think very few people want to be there at that moment.

RB: Yeah, that’s true. Including many doctors.

KB: Well, the other bit, on the doctor note, that I was going to ask you about your wonderful, terrible intervention with my parents is, so you say “This is awful,” and then they just stare at you for a while, in my recollection, because they just, they couldn’t believe you’d just said it. And then you said it again, “This is just awful.”

RB: Just wanted to make sure they heard it.

KB: Yeah. And then wine was being poured. But then you said, “but let me tell you what I know. We need to get to a place where we move beyond dichotomies, beyond “cured” and “dying,” and Kate has stage 4 cancer, and that just means we are instead looking at getting her from one good outcome to another.”

And that’s when I started thinking of my life more like “vine to vine” rather than — because I had this model before that was like, “My job as this professional fancy person is to have this basket, and I’m going to put all my eggs in it. And I’ll just be the egg person forever.”

But you helped me switch to being a “vine to vine” person because I knew I’d always have to be soaring over the deep and the terrible. But the hope is always like, “Alright, we pick this vine, and we do it based on what we know, and then, yup, you take a running leap, and then we plan for the next vine and we hope that’s going to be there.”

RB: Exactly.

KB: But that’s a hard mindset to get into. So I sort of wanted to ask you about that. How do you, I don’t know, either in medicine or in life, try to move into that mental space beyond dichotomies?

RB: So as a doctor, it depends on where we’re at, and so, if I have a kid who comes in who’s older than 1 and less than 10 who has acute lymphoblastic leukemia, with a white blood cell count less than 50,000, this is most of them, we’re approaching a 90% cure rate.

 RB: When people hear “cancer,” they immediately think “I am going to die.” That’s just a reaction. And cancer has a special something in our culture. I mean, cardiac disease is the number one killer, not cancer, but cancer has this mythic –

KB: But that’s just for surprised men in their 50s!

RB: And so, yeah, with them, there’s a really big vine, and the likelihood is that it’s going to get them to the other side. One big vine and you’re done. You know.

And then there are, like in our conversation, where you’re at, there are a lot of things being developed now that are astonishingly promising. Also, that have not been tested for 15-20 years. And so, they’re new enough that we don’t know what the true thing to say is.

RB: But there’s so much about them that makes hope that these things are going to change the course of the disease that we can realistically say, “Okay, there is uncertainty here, it has to be acknowledged. This is going to be uncomfortable because we don’t know.”

KB: But you did a little practice with me I thought people like, in, the world would find genuinely helpful. It’s like, when faced with uncertainty, which is like life in general, and like, there’s shiny things, but you didn’t just like dangle the shiny thing.

You were like, “Okay, you have a very difficult decision right now, what day is it?” I think it was like February. Or something. And you were like, “Alright, now mark the date. What decision can we make that we would be okay with, looking back that we made the best choice based on what we knew at the time.”

RB: Exactly.

KB: Because you can get stuck in foreverland. In the future. And then, on your someday omniscient self, you just think, “Man I really should’ve done this.”

RB: Exactly.

KB: I should’ve done that.

RB: Yeah, looking back on a thing and doing the mea culpa is awful. It was patients and parents who taught me to mark the day that we make the best decision we know how to make because I was a witness over and over again to the agony of, “Why didn’t we do this other thing?”

KB: Yeah.

RB: And so, I’m insistent on it now. I will pull out my phone, show the time and date and say, “We’re going to remember this.” And I’ll tell them, that I am hoping, absolutely hoping for the best, but if this doesn’t go the way that we hope it goes, I am going to remind you of this day. And then, we’ll pause, and begin making decisions for the next step.

KB: Yeah.

KB: I mean we all have to live with our choices.

RB: Yeah.

KB: And I think just within our culture, and especially the way in which medicine is described, as like, unlimited possibility, and then you’re in a series of, I mean, you’re in a terrible choose-your-own-adventure. Page 46 is sudden death, but page 52, the bridge crosses over the trolls.

RB: Yeah, so that’s where, and I still have a pretty steep learning curve, and probably always will on this next kind of phase, which is the vine that you know, we’ve been going from one intervention vine to the next intervention vine to the next intervention vine. Trying to bridge to the future because medicine is changing rapidly enough these days that the idea of “just get me to the next thing,” is realistic. That is realistic.

RB: But the thing is, it does take time to develop new things, to find new things, to test them, to get them approved, to go through all these things, it does. Meanwhile, life clips on.

So when someone you know, has sort of grabbed onto the next vine, and they find themselves just kind of hanging on it, and they’re not swinging anymore, and they’re like, “Well what do I do now?” it’s very difficult to just say, “Well, you can either keep your grip on that vine or you can let go.”

KB: Yeah.

RB: And that feels different.

KB: Yeah. Yeah. And you know my expertise – I’ve just one expertise – and that’s the prosperity gospel and the “everything happens for a reason” people, who I’ve come to truly enjoy in this last season. So when people run out of choices or they’re trying to explain the ones they have, I’ve found that you end up having to say pretty spiritual things to people, I imagine, when they’re trying to make sense of their circumstances.  What’s your alternative to the “Everything happens for a reason”?

RB: Well, I don’t do the “everything happens for a reason” because I just no longer get it. I just don’t get it.

KB: Yeah.

RB: Back in 1940, we cured 0% of children with ALL, and now we’re pushing 80 or 90%, and that’s not because God suddenly got interested in children with leukemia.

KB: Yeah.

RB: You know. And so I just don’t know what to make of it when someone says “everything happens for a reason. “I don’t even know how to conceive of a God who inflicts cancer for a reason.

KB: Yeah.

RB: I don’t get it anymore. I have plenty of families who don’t agree with me. And I don’t push my position at all, because for me, I am, I’m just living in an “I don’t know.” I don’t know. I raised the white flag on that a long time ago. But, there are enough people who do believe that everything happens for a reason. Maybe they’re right, I don’t know.

KB: You do say some pretty comforting things, I think, in the terrible.

RB: Okay. You can tell me what they are. It’s kind of improv, happens in the moment. I don’t take anything away from people, I will tell you that.

KB: Well, in the really tough times, what kind of, what kind of true things still feel true?

RB: Well it depends on the person. When I walk into the room, they’re going to have to help me understand what the situation is, because if I don’t know the particulars of what their world view is, of what they’re going, if they don’t tell me, then I don’t have a starting point.

RB: I don’t have a “one size fits all.”

KB: Alright then fine. Fine Mr. Agnostic! What would you say to me? You know my situation.

RB: I thought I was going to have to pretty recently.

KB: Yeah, that went badly.

RB: I was ready. I didn’t know what I was going to say. I don’t know if I can go here or not.

KB: Well, what we were referring to is like, just a couple weeks ago, I got another series of bad test results, and Ray came to my house, and me and my husband and Ray and sat at, right after I threw my 4-year-old’s Lego-themed birthday party and was trying not to be too worried that that was my last time doing it.

RB: Balloons everywhere.

KB: And we took out all the scans and had a tough conversation. So let’s pretend that we didn’t actually figure out that it wasn’t nearly as bad as it seemed like it was going to be. What would you have said to me?

RB: Now Kate, when I walked into your house, I don’t know quite how to put this. So I am very bad at doing difficult conversations via email. I am terrible at doing difficult conversations via text. The only way that I know how to do them is physical proximity of some sort, even if it’s the telephone, something where I can hear the blood in your voice, and know when you’re becoming sad.

KB: Yeah.

RB: Or distressed. Or when you laugh, completely inappropriately, which you frequently do.

KB: Not true.

RB: And so when I walked into your house, I did not have a thing in my head that I was going to say to you. I trusted that what needed to come would come, but that the way that it would come would be in you and me meeting each other and talking, and that we would feel the thing.

I’ll tell you, if you are talking about a thing that, especially if you’re talking about dying, you’re literally talking about a thing that no one in the room has ever experienced, that no one you know has ever experienced. Even if you know a lot of people who have had near-death experiences, by definition, a near-death experience is not death.

KB: Yeah.

RB: And so, there’s a kind of humility that needs to be there first of all, a recognition that we’re talking about a thing that we don’t know about. We don’t know what it is. But here it is. And so, well, we have to –

KB: You like feel the contours around it. It is weird though because like, for something that hasn’t been seen, terrible things, we were talking about as having weight or shape or …

But when you come in a room — and in my life almost all the terrible rooms, basically every worst moment I look up and you are there.

The other part that plays, though, is that it does mean something to be a witness. And your ability to reflect back the scope of what this thing and this event means. So when I’ve been afraid of dying, or not wanting to ask questions because I don’t want to upset people, so I ask you.

RB: Because you know, “It’s just Ray.”

KB: You won’t be mad at me! I do think part of that gift of like, “Let’s see what this thing is. Let’s see what happens when we have this. When we co-experience this thing we don’t know how to describe.”

I think part of that, at least to me, is the power of — not just of presence, but of true witness. And to have been seen, I think, in the worst. I mean like people say that to their spouse when they get married, and they have witnesses.

KB: I think for these terrible moments, one of these great gifts and joys is that, in the worst moments of my life, you have been a witness. So I’ll keep you around for that reason.

RB: Please do.

KB: I really appreciate this.

RB: Yeah, I really appreciate you inviting me. This meant a lot to me, to have this conversation.

KB: The moment I had been diagnosed, it felt like I had been pushed to the very edge of a cliff, and I could see all the way down. It was absolutely terrifying. I could feel my toes curling over the edge, feel the upward draft, and I just stood there, teetering, not sure which way this whole thing would push me.

Very few people know what that feels like, and I think even fewer want to hang around with them. Ray can’t live on the edge of the cliff with me, because at the end of the day he has to go home and make dinner and live his life. But he made a decision to scoot up a little closer and to peer over the side with me.

He can’t really make it better. I mean, he can’t invent a new drug or patch up my body, or promise nothing bad will ever happen again. But he can decide that being there for other people, allowing tragedy to take up space in his life, is not just his job as a doctor, it’s his job as a human being. And thank God for that.

 

Everything Happens is produced by Duke University in association with North Carolina Public Radio/WUNC. Support comes from Faith & Leadership, an online learning resource.

This podcast is produced by Beverley Abel and Alison Jones. Sound engineering is by Dennis Foley with assistance from Ivan Panarusky. Special thanks to Amanda Hite and the Be the Change Revolution team and Random House.

And we’d love to hear from you. If you like what you’re hearing, please post a review on iTunes. And while you’re there, be sure to hit that subscribe button. You can find me on Facebook (always), Instagram (often) and Twitter (every day) @katecbowler. Let’s chat.

Until next time, this is “Everything Happens” with me, Kate Bowler.