What Not To Say To The Terminally Ill: 'Everything Happens For A Reason'

Feb 8, 2018
Originally published on February 12, 2018 9:03 am

Kate Bowler's new memoir, Everything Happens for a Reason And Other Lies I've Loved, is a funny, intimate portrait of living in that nether space between life and death. In it, she shares her experiences with incurable stage 4 cancer and gives advice on what not to say to those who are terminally ill.

Bowler is also the host of Everything Happens, a new podcast.

She writes that sometimes silence is the best response: "The truth is that no one knows what to say. It's awkward. Pain is awkward. Tragedy is awkward. People's weird, suffering bodies are awkward. But take the advice of one man, who wrote to me with his policy: Show up and shut up."


Interview Highlights

On why she wrote Everything Happens For A Reason

Suddenly at [age] 35, I get this stage 4 cancer diagnosis, and it's just like a bomb went off and everything around me is debris. And I'm thinking, "Oh my gosh, did I actually maybe expect that everything was going to work out for me?" And so I wrote the book more like a theological excavation project, like I was just trying to get down to the studs of what I really expected from my life. And I think I was a lot more sure than I realized ... maybe that I was the architect of my own life, that I could overcome anything with a little pluck and determination.

On how a cancer diagnosis changed her outlook on life

I kind of pictured my life like it was this life enhancement project, and like my life is like a bucket and I'm supposed to put all the things in the bucket. And the whole purpose is to figure out how to have as many good things coexisting at the same time. And then when everything falls apart, you totally have to switch imagination, like maybe instead, life is just vine to vine. And you're like grabbing onto something, and you're just hoping for dear life it doesn't break.

On how that diagnosis affected her relationship to friends and family

I went from feeling like a normal person to all of a sudden, like this spaghetti bowl of cancer. I was trying to learn how to give up really quickly, like looking at my beautiful husband and just immediately all the stuff you're supposed to say, which is just like, "I have loved you forever," and "All I want for you is love."

... You have these impossible thoughts like, "You will live without me," and "Please take care of our kid." And like you're trying to do all that hard work and then in the same moment, they're trying to rush in and say, "We're going to fight this." There's all these plans they want to pour their certainty in, to remake the foundation. And there's this, kind of, almost terrible exchange, where you're trying to remake the world as it was. But it's all come apart.

On whether she has had conversations with her 4-year-old son about death

He is entirely impervious to all of this, in the best way. But I do think the thing that has radically changed is I really was, before, trying to create this little bubble around him and us, 'cause I thought, like, "It's my job to protect you," and then I realized that I would be the worst thing that happened to him if this went badly.

So then I thought like, "OK, parenting strategy change." And I thought, 'Well, if I can just teach you that there is still beauty in others in the midst of pain, then like, that's my job." So we work a lot on like, "How are you feeling?" like, "I feel frustrated." And then getting him to notice the feelings of others.

On how she has learned to cope with negative news about her diagnosis

Well I have rules for when things are too sad, 'cause sometimes, just the reality of things really feels like an avalanche, and it's just going to sweep everything away. So I do make rules for the day, like don't talk about sad things after 9 p.m., so I try to make my day a little gentler. I try to make other people's day a little gentler. The other thing I do is I try really stupid stuff, like I got terrible news a couple months ago, which thankfully turned out to be a medical error.

It was a scan and it looked brutal, but I spent that week thinking like, "This is my last year for sure." And it was weird because the next day, I turned to a friend and I said, "Would you like to go visit the world's largest Ukrainian sausage?" And he was like, "Oh, I'm in."

On her list of things not to say to someone with terminal cancer, including "How are the treatments going and how are you really?" [book excerpt]

This is the toughest one of all. I can hear you trying to be in my world and be on my side. But picture the worst thing that's ever happened to you. Got it? Now try to put it in a sentence. Now say it aloud 50 times a day. Does your head hurt? Do you feel sad? Me too. So let's just see if I want to talk about it today, because sometimes I do and sometimes I want a hug and a recap of American Ninja Warrior.

Jeffrey Pierre and Miranda Kennedy produced and edited this interview for broadcast. Sydnee Monday and April Fulton adapted it for the Web.

Copyright 2018 NPR. To see more, visit http://www.npr.org/.

DAVID GREENE, HOST:

A memoir written by a young mom diagnosed with incurable stage IV cancer while her son is still a toddler - I mean, it is hard to imagine this could be funny, right?

KATE BOWLER: I remember when I walked into the cancer center for the first time and someone was actually playing a harp. And I immediately turned to my dad. I was like, oh, God, is it this bad?

GREENE: That is the voice there of Kate Bowler. She is the author of a new book that is called "Everything Happens For A Reason: And Other Lies I've Loved." She spoke to Rachel Martin.

BOWLER: Suddenly at 35, I get this stage IV cancer diagnosis, and it was just like a bomb went off. And I'm thinking, oh, my gosh. Did I actually maybe expect that everything was going to work out for me? And so I wrote the book more like a theological excavation project. Like, I was just trying to get down to, like, the studs of what I really expected from my life. And I think I was a lot more sure than I realized.

RACHEL MARTIN, BYLINE: Sure of what?

BOWLER: Well, maybe that I was the architect of my own life, that I could overcome anything with a little pluck and determination.

MARTIN: And prayer.

BOWLER: Oh, man, I really thought like - I mean, God, you're great. And my job is to be good. And then there's some kind of relationship between...

MARTIN: There's, like, a deal (laughter).

BOWLER: Yeah, we're making a deal, and I will be awesome, but you will be awesomer (ph) and, like, somewhere in the middle...

MARTIN: And you keep me alive for as long as I want.

BOWLER: Yeah, yeah, yeah, that's right. And that, like, I kind of pictured my life like it was this life-enhancement project. And, like, my life is like a bucket, and I'm supposed to put all the things in the bucket, and the whole purpose is to figure out how to have as many good things co-existing at the same time. And then when everything falls apart, you totally have to switch imagination. Like, maybe instead life is just vine to vine, and you're, like, grabbing onto something, and you were just hoping for dear life that it doesn't break.

MARTIN: How did that then manifest in your relationships with friends and family?

BOWLER: Well, I think maybe I realized a little too late that sometimes it's people's love for you that makes them want you to be as certain as they hope to be, you know? Like, because the diagnosis was so bad and I went from feeling like a normal person to all of a sudden, like, this spaghetti bowl of cancer, I was trying to learn how to give up really quickly, like looking at my beautiful husband and just immediately trying to say all this stuff you're supposed to say, which is just, like, I have loved you forever, and all I want for you is love. And then you're trying to learn how to give up these - like, you have these impossible thoughts, like you will live without me. And, like, please take care of our kid.

And, like, you're trying to do all that hard work, and then in the same moment, they're trying to rush in and say, like, we're going to fight this. There's all these plans. Like, they want to pour their certainty in to, like, remake the foundation, and there's this kind of almost terrible exchange where you - you're trying to remake the world as it was. But, like, it's all come apart.

MARTIN: How did you move from that moment and at the same time rewinding because you do have to do the work?

BOWLER: Yeah, that's right.

MARTIN: Like, you got to show up. You got to go to treatments.

BOWLER: Yeah. And, like, I don't think I knew how to live after certainty. And part of it is you have to learn to be present even when things are absurd.

MARTIN: Because you wrote about your diagnosis and your treatment in The New York Times, it opened you up...

BOWLER: Oh, my word.

MARTIN: ...To a whole slew of feedback, you can call it...

BOWLER: Yes, yes, yes, yes.

MARTIN: ...Some feedback from readers who had all kinds of things to say to you. And a lot of it - I mean, most of it - right? - came from a good place.

BOWLER: So lovely, yeah.

MARTIN: But some of it was - insensitive...

BOWLER: Yeah.

MARTIN: ...I suppose could be a word that's used. You divided the feedback into three categories - the minimizers, the teachers and the solutions people.

BOWLER: Yeah.

MARTIN: Would you mind just giving us a snapshot of each?

BOWLER: Oh, sure. Well, minimizers - they just, like - they rush in with the, well, at least you found a good hospital, at least you're on this drug, at least you're not entirely bankrupt.

MARTIN: (Laughter).

BOWLER: Oh, man, minimizers - yeah. And then there's the teachers. And very often they've recently watched a documentary, and they have a lot to share with me about what they just learned. And, like, you find yourself immediately going into a moment where you realize that, like, you're maybe part of a multi-level marketing presentation you didn't sign up for, like essential oils.

MARTIN: (Laughter).

BOWLER: So, yeah, there's always a teaching moment. And then...

MARTIN: The solutions people.

BOWLER: Right, solutions - I think they're just, like, trying to help me get back to a sense of agency. But the problem is it's usually, like, what I think of as, like, the tyranny of prescriptive joy. It's always like an emotion they want me to have or a prayer they want me to try. But, like, there's something I haven't tried and if I would just put my shoulder into it, I would finally do it. And I just want to tell them, like, every time I promise I'm trying my very best, but, like, cut me some slack.

MARTIN: Right. It is interesting because there is - there's a conversation that you have with a doctor. There are a lot of conversations you have with doctors in this book.

BOWLER: Yes, I do (laughter).

MARTIN: There's one...

(LAUGHTER)

MARTIN: ...Near the end - a pretty wise man who looks at you and says, listen, we're all going to die. Like, we're all terminal.

BOWLER: Yeah.

MARTIN: You just have more information. So I guess my question is, how have you learned to manage that information?

BOWLER: Yeah. I try really stupid stuff. Like, I got terrible news a couple months ago, which thankfully turned out to be a medical error.

MARTIN: A scan that you had or something.

BOWLER: Yeah. It was a scan, and it looked brutal. But, like, I spent that week thinking, like, this is my - this is my last year for sure. And it was weird because the next day I turned to a friend and I said, would you like to go visit the world's largest Ukrainian sausage?

(LAUGHTER)

BOWLER: And he was like, oh, I'm in.

MARTIN: And if she's your friend, she said yes.

BOWLER: Yeah, yeah, yeah - like, absurd, delightful, like, the real stuff.

MARTIN: There are a couple of very helpful appendices at the end of this book.

BOWLER: Oh, well, thank you.

MARTIN: First - a list of things not to say to someone with terminal cancer. And I got to say, I read this and I felt pretty good about myself. I was like, oh, yeah, I would never say that, I would never say that.

BOWLER: (Laughter) Good.

MARTIN: And then I got to number eight and realized that I have totally said this.

BOWLER: Oh, it's so tough, though.

MARTIN: This is - when you ask, you feel like you're being - you're getting right in there, right?

BOWLER: Yeah.

MARTIN: Like, I was giving myself credit for asking this question, how are the treatments going and how are you, and, like, looking deeply into someone's eyes and being like, no, I'm not like the other people in your life. Like, I really want to connect with you. Tell me how it's going.

BOWLER: Yeah, yeah, yeah, yeah.

MARTIN: And this is not a good thing.

BOWLER: It's - well, as I write this is the toughest one of all...

(LAUGHTER)

BOWLER: ...I can hear you trying to understand my world and be on my side, but picture the worst thing that's ever happened to you. Got it? Now, try to put it in a sentence. Now, say it aloud 50 times a day. Does your head hurt? Do you feel sad? Me too (laughter). So let's see if I want to talk about it today because sometimes I do, and sometimes I want a hug and a recap of "American Ninja Warrior."

MARTIN: Kate, thank you so much for talking with us.

BOWLER: What a treat.

(SOUNDBITE OF LUCHS' "REVERIE")

GREENE: That is Kate Bowler. Her book is called "Everything Happens For A Reason: And Other Lies I've Loved." She also hosts a new podcast that is called Everything Happens. Transcript provided by NPR, Copyright NPR.