A Stage-4 Cancer Patient Shares The Pain And Clarity Of Living 'Scan-To-Scan'
Religion scholar Kate Bowler used to believe God had a plan for her life. Then she was diagnosed with incurable colon cancer. "I really had to rethink what trust and hope looks like," she says.
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. Here's a few of the things my guest Kate Bowler doesn't want to hear about living with her incurable cancer - everything happens for a reason. God is writing a better story. Heaven is your true home. God needs another angel. It's not that she's lacking in faith. She just wants to avoid trite life lessons. Bowler is an associate professor of the history of Christianity in North America at Duke Divinity School. Her new memoir, "Everything Happens For A Reason: And Other Lies I've Loved," is about how her faith has affected the way she deals with cancer and how her cancer has affected her faith.
She also reflects on the paradox that her first book was about, the history of the prosperity gospel, which preaches that God grants health and wealth to those with the right kind of faith. Bowler was diagnosed in 2015 with stage IV colon cancer that had already metastasized. She's married, has a young son and can't bear the thought of him growing up without her. What's kept her alive in addition to colon surgery and chemo is experimental immunotherapy treatments that helped shrink her tumors.
Kate Bowler, welcome to FRESH AIR. I want to ask you to start with a reading from the preface to your book.
KATE BOWLER: Oh, sure. (Reading) Married in my 20s, a baby in my 30s, I won a job at my alma mater straight out of graduate school. I felt breathless with the possibilities. Actually, it's getting harder to remember what it felt like, but I don't think it was anything as simple as pride. It was certainty, plain and simple, that God had a worthy plan for my life in which every setback would also be a step forward. I wanted God to make me good and make me faithful with just a few shining accolades along the way. Anything would do if hardships were only detours on my long life's journey. I believed that God would make a way. I don't believe that anymore.
GROSS: Thank you for reading that. So listen, after finishing your book, I need to know - how are you now? Where are you in your treatment?
BOWLER: Well, I'm moving from the crisis phase to the chronic illness management phase. So now I get scans repeatedly instead of having regular treatment, and it requires a different kind of mentality. Before, it felt like it was alarm bells all the time, and now it's just sort of a distant alarm sound and a general sense of anxiety.
GROSS: So what is the state of the cancer?
BOWLER: Well, I have incurable cancer, so the hope is just that it doesn't grow and that the treatment I'm on keeps it at bay. And the goal with new developments in immunotherapy is that it could be like that forever and that cancer might eventually be a chronic illness. But we're so early on in immunotherapy as a treatment that no one really knows.
GROSS: So in the book, there's a period where you're getting - you're starting the immunotherapy treatment and you get scans...
GROSS: ...I think, like every two months.
BOWLER: Yeah, yeah, that still happens every three months.
GROSS: Yeah, and so after each one, you were basically told - what? - you've got another two months or three months...
GROSS: ...For sure of life. But that was the only certainty you had. Are you in that same kind of period where you're living from short interval to short interval with no certainty beyond that?
BOWLER: Well, before it was especially terrifying because with the experimental drug I was on, if the tumors grew, I knew I would get kicked out of the trial, and that would be pretty much it for me. So thankfully, now it's - scan to scan feels slightly less terrifying because they're starting to - I mean, the longer I live, the more information there is about someone like me. There's other little cohorts of folks like me, but it still is really scary.
GROSS: OK. Well, since your book is about how your religious scholarship and religious practice is affecting how you cope with the illness and it's about how the illness is affecting your understanding of God, let's start with religion. And let's start with the religion that you were immersed in for research, the prosperity...
GROSS: ...Gospel, which was the subject of your doctoral dissertation and of your first book. So I want to start with that. And I'll need you to describe what the prosperity gospel is.
BOWLER: Sure. The prosperity gospel is a movement that grew out of Pentecostalism that said that God rewards the faithful with health and wealth within the course of their human life if they have the right kind of faith.
GROSS: So in the prosperity gospel, there's a direct connection between your prayers and how you are rewarded by God. The rewards are our money and material possessions as well as good health. So what does it mean within that creed if you get sick like you've gotten sick?
BOWLER: Well, that's the double-edged sword of a movement like the prosperity gospel. For people who experience tough times, it really can be tremendously empowering for a preacher to say, look, you might be experiencing the pitfalls, but there is a cure. You just have to speak - positively confess is what they would say - your faith aloud, and you will name and claim these incredible miracles. But, of course, the flip side is that for those who experience persistent misfortune, the only conclusion that they can then draw is that they're not faithful enough.
GROSS: So what did your friends within the prosperity church say to you about your being sick?
BOWLER: I mean, they were - I think, like any good friend, they really tried to lead with love. I mean, they felt genuinely awful for me. But in there somewhere was the hope that I really just needed to find my own spiritual power and harness it and beg God to give me a miracle. And so there was tons of compassion, desire to pray for me but also the desire to have me admit that there was something that I could yet do to fix this. And it was hard for me as the recipient of all of these spiritual diagnoses to not feel a little bit blamed.
GROSS: And you write that you'd seen people in prosperity churches who were sick or who were dealing with tragedy...
GROSS: ...And that they couldn't really grieve.
BOWLER: No. I mean, that was - I think that was maybe the most depressing part of the research was there's all these beautiful, jubilant services and maybe the best part of the prosperity gospel is the worship service. You go, and there are singers and there's often dancers and the most sort of lively exciting sense that the world is new and full of possibility. And then there's a prosperity gospel funeral. And I couldn't find anything on Earth as depressing as that because it was a - people, you know, scraping and clawing for the meaning of someone's death as they're trying to grieve. And it was almost impossible for them to say that it wasn't somehow the person's spiritual failings that had led to this untimely death.
GROSS: So when you were doing the research for your book and your dissertation, did you find any of the prosperity gospel appealing? Do you ever want to believe that you had it in your control to just, you know...
GROSS: ...Get spiritually right and then be materially and spiritually rewarded for it?
BOWLER: Well, if you'd asked me at the time, I would've said no. I mean, I am just the kind, compassionate observer. I'm sitting with the people in the pews, and I'm thinking it seems so lovely to me that people would expect more from God. I loved their sense of wonder and possibility. There are a group of people who, like, comb through the details of their own biographies and look for evidence that God was there. So, like, somebody who applies for a mortgage and gets it says, like, praise God, like, God provided. But I never ever thought that I was one of the people who thought that God really had to - like, it was some contractor deal we made - that God had to make a way for me until I got sick. And then I was genuinely horrified to realize that it was me. Like, I was the unlucky one, and somehow I wasn't actually the architect of my own life.
GROSS: In the preface to your book, you write I believed God would make a way. I don't believe that anymore. But you still believe in God. You haven't lost your faith.
BOWLER: Yeah. I mean, I'm a big super Jesus-y (ph) heart over here.
BOWLER: I do (laughter). I mean, it's so funny. It's just that I really had to rethink what trust and hope looks like if I'm just living scan to scan. Like, what does it mean to experience - I don't know - proximity to God or a sense of faithfulness without actually thinking that my life is supposed to be better because of it? Like, I don't know if a lot of people think this, but at least the hope is, like, if you're a good Christian or you're a good anybody that, like, maybe you will somehow get some sort of advantage at least in terms of spiritual enrichment or, you know, life-changing perspective. And in the end, like, I don't know if there's really any advantage to (laughter) being spiritual except that you get to know a little something about the presence of God.
GROSS: Have you asked God to heal you? Do you believe that that's something you can ask for, and that's something - that it's something that God can decide to do? Like, let...
BOWLER: I do. Yeah.
BOWLER: I like to be open to lovely things happening, just as now I'm trying to be open to the idea that terrible things happen. And I do like the - so the prosperity gospel movement comes out of the Pentecostal movement of the early 20th century. And they were all about signs and wonders and God just showing up and surprising you. And I felt like I learned something about not being so heavily - I don't know - rationalistic or something, that I assume that the world always operates in this very predictable way. So I'm open to being surprised.
And I pray for - man, from second one, I prayed for health, and I went through a very robust bargaining phase (laughter) in which I was like, dear God, comma, please, please, save me. I will do anything. But I don't also, then, expect that just because I prayed it or because I am spiritually trying hard that it's going to work out.
GROSS: So you grew up surrounded by Mennonites in Manitoba, Canada. Your husband is Mennonite. You went to a Mennonite camp. Were you offered ways from that community to understand sickness?
BOWLER: Yeah. That is, maybe, one of my favorite things about Mennonites is they sort of expect life to be grisly and grueling and horrible in some way that I find really refreshing. They always have this big coffee-table book called the "Martyrs Mirror," which is this (laughter) really gruesome 17th-century account of people's - early Mennonites' horrible deaths.
BOWLER: And I find that very compelling because they have stories circulating within memory of life not being fair and that part of the solution to that is community - is you just stand shoulder to shoulder with other people who are suffering. I mean, they drained the swamps of Manitoba in, like, the two-month summer that (laughter) that I have...
BOWLER: ...(Laughter) In Manitoba where it's either mosquito season or just this terrible winter. And, like, they drained the swamps of the piece of land they were given together, assuming, like, oh, we should probably live here. It will be the worst, but surely we will be together. I find those kinds of stories really encouraging. They were never going to abandon me the worse things got.
GROSS: And if you take a kind of life-is-hard world view, then when someone in that community gets sick, they're not the outlier. They're not disproving...
BOWLER: That's right.
GROSS: ...The presence of God.
BOWLER: Yeah. Yeah, that's right. And, I mean, they've always been committed to simplicity, pacifism, ruining jello salads with deli meat...
BOWLER: ...Just buried in there somewhere like a horrible surprise. They're really not expecting much in the healthiest way because they assume that most things have to be done together and that those who suffer are just experiencing one of the many pitfalls of this life.
GROSS: Do you consider yourself Mennonite now, or do you have another name for your own Christian practice?
BOWLER: Well, I made a deal with Duke Divinity School where I work where I said, look, I'll be Methodist here because you are team Methodist, and that's what we're doing is we're training...
BOWLER: ...Methodist pastors - God bless them - but that I'll be Mennonite in Canada where I'm from.
GROSS: (Laughter) So have your prayers changed, or has the place of prayer or the meaning of prayer in your life changed?
BOWLER: I think maybe it has because I think I don't have the luxury of being too sophisticated anymore. I mean, you just get infected with this urgency that comes with facing your death. And so I pray for very basic things. Please, God, make me kind and open to the pain of the world. Please, God, heal me. Make me less of a dink and help me be a good mom and a wife. I mean, just really basic stuff as opposed to maybe the more layered prayers that I was raised with or learned in theological school, which always have long gerund phrases like ever-loving and ever-living God...
BOWLER: ...I come to you - and, like, there's no dignity now. I just go right for it.
GROSS: (Laughter) You quote in your book something a friend with cancer said to you. They said, I have known Christ in so many good times, and now I will know him better in his sufferings. That obviously stuck with you. And it's similar to something that you say in the book, which is that you have to seek God in the darkness and brokenness now.
GROSS: So can you elaborate on that?
BOWLER: Well, I mean - and this is part of the maybe spiritual excavation project that I started to see this book as where - I mean, I didn't write the book because I thought, you know, I have a lot of really important things to share (laughter) with other people. I initially wrote it because I was trying to get down to the deepest, hardest, truest things that I believed - like, get down to those lies that I had perpetuated all along, that I needed to be shiny to be worthy of God's love and the attention of others and that I needed to achieve and be master and commander of my, you know, everything.
And so part of not being shiny - it was me coming to terms with my own frailty, the fact that I probably wasn't going to be able to piece things together and learning to feel spiritually, I guess, accepted by God and by other people when I didn't have much to offer people anymore.
GROSS: Well, I tell you what. Let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is Kate Bowler. She's the author of the new memoir "Everything Happens For A Reason: And Other Lies I've Loved." We'll be right back. This is FRESH AIR.
(SOUNDBITE OF THE MOUNTAIN GOATS SONG, "PEACOCKS")
GROSS: This is FRESH AIR. And if you're just joining us, my guest is Kate Bowler. She's the author of the new memoir "Everything Happens For A Reason: And Other Lies I've Loved." And it's a memoir about having colon cancer that metastasized, being told she had a little time to live but then finding an experimental immunotherapy treatment that seems to be helping. But everything is still very indefinite in her life. And the book is a memoir about how her illness has affected her religious practice, and how religious practice has affected how she deals with illness. She teaches at Duke Divinity School, where she also got her doctorate.
After you had your major surgery, in which the large cancerous tumor was removed from your colon, you were in the hospital, incapacitated and somehow felt the presence of God in a way that you hadn't experienced before. And you write that when you were sure you were going to die, you didn't feel angry. You felt loved. And you say, it felt as though I'd uncovered something like a secret faith and kept thinking, I don't want to go back. Is that something you could put more into words?
BOWLER: Oh, man, because it was so weird - I thought this is not a rational thought. I should want to go back. And, of course, I do because I would love to trade the life I have for one in which I imagined I could always spend it with my husband and my son. But it did feel like cancer was like this secret key that opened up this whole new reality. And part of the reality was the realization that your own pain connects you to the pain of other people. I don't know. Maybe I was just a narcissist before. But like all of a sudden, I realized how incredibly fragile life is for almost everyone. And then I noticed things like - and that felt like a spiritual - I don't know - like gift.
It's like you notice the tired mom in the grocery store who's just like struggling to get the thing off the top shelf while her kid screams, and you notice how very tired that person looks at the bus stop. And then, of course, all the people in the cancer clinic around me. That felt like I was cracked open, and I could see everything really clearly for the first time. And the other bit was not feeling nearly as angry as I thought I would. And, I mean, granted - like I have been pretty angry at times. But it was mostly that I felt God's presence. And it was less like, here are some important spiritual truths I know intellectually about God. There are four of them. I have a PowerPoint presentation. It was instead more like the way you'd feel a friend or like someone holding you. I just didn't feel quite as scared. I just felt loved.
GROSS: You write that you were afraid that that feeling would leave? Did it?
BOWLER: Yeah, yeah, it - oh, yeah, it did. (Laughter) It totally did. Yeah, it was there for like a few months. And I started to really get used to it because it felt like this nice floaty feeling where I wasn't quite scraping the bottom. And like at the time, my life was characterized by so much fear. I was a normal person before, and then suddenly I was someone with cancer. And I remember in those few moments when I would wake up, I would remember it like it was the first time I'd ever had that thought. Like I was just a regular person. And then all of a sudden, I would think, oh, no, like I might die this year. And I kept having to rediscover that every day as I entered into my conscious mind and lived my day. And so in all that fear, that sense of spiritual proximity really helped, you know, like get that kind of metallic taste out of my mouth and start becoming more rooted and grounded in the day - able to see the lives and love of other people.
GROSS: So because of that feeling of the closeness of God when you thought you were dying after the surgery in the hospital - when you were really like at the edge of a cliff.
GROSS: When you pulled back a bit from that cliff, did the experience give you confidence that you'd experience that presence of God again when you do hopefully - when you do approach death, hopefully sometime way in the distant future?
BOWLER: I can't believe you said that because that is exactly the only certainty I landed on. I mean, I gave up most of the spiritual cliches, I think - that every good thing was going to come back to me or that I could be, you know, the architect of my own life. But one of the only certainties I actually truly latched onto was the sense that in the worst moments that there can be an unbidden God and that I don't have to earn it. And I don't even have to like worry that I won't have it - but that maybe the hope is that when we come to the end of ourselves, that we're not alone.
GROSS: My guest is Kate Bowler. Her new memoir about her illness and her faith is called "Everything Happens For A Reason: And Other Lies I've Loved." We'll talk more after a break. I'm Terry Gross. This is FRESH AIR.
(SOUNDBITE OF ALABAMA SHAKES SONG, "GIMME ALL YOUR LOVE"
GROSS: This is FRESH AIR. I'm Terry Gross back with Kate Bowler. Her new memoir "Everything Happens For A Reason: And Other Lies I've Loved" is about how her religious faith has affected how she lives with incurable cancer and how her illness has affected her faith. She teaches at Duke Divinity School. In 2015, she was diagnosed with stage 4 colon cancer that had already metastasized. In addition to colon surgery, she's had heavy-duty chemo and experimental immunotherapy treatments. She's married and has a young son, who she can't bear to think of growing up without her.
Jesus suffered a lot, and there are many, like, stories in Christianity about his suffering. Of course, there's the crucifixion - the ultimate suffering. So are there stories that you find a new meaning in - like, stories from the bible, yeah.
BOWLER: Well, yeah. I mean, Jesus' life didn't turn out super well, so that was helpful for me to not feel like - quite so much like a spiritual loser. But that was one of the funnier and maybe more poignant moments for me in my research when I went to the Holy Land Experience in Florida. It was this lovely attempt to allow people to walk where Jesus walked but in Orlando, Fla.
GROSS: It's a religious theme park, right?
BOWLER: It's a - yeah. It's a real thing. And it was bought by Jan and Paul Crouch, who were the king and queen of 1980s televangelism.
GROSS: And they bought it from Jim and Tammy Faye Bakker?
BOWLER: They - Jim and Tammy Faye had their own theme park...
GROSS: Oh, oh.
BOWLER: ...And - which was Heritage Park USA, which had an incredible water slide. And so, yeah, just like that, they had this - still have this Holy Land Experience in Florida. And you could watch Jesus' grisly crucifixion at 1 p.m. and then see him resurrected very jubilantly at 3 every day like clockwork. And I remember thinking, wow. We really want to rush to the end, right? Like, we want to rush to the good part. And the second I got very sick, I started really to appreciate the joys of Lent, that 40-day march the church is supposed to take until the crucifixion without, as I came to think of it, Easter-ing (ph) the crap out of people's Lent, where we just want to make it joyful. We imagine that because everything is going to turn out, we can skip the suffering. And like, guess what? The church is historically wonderful at teaching people how to be sad because, as it turns out, life is not always skipped to 3 p.m. with the resurrection.
GROSS: So I take it Easter has taken on a new meaning for you.
BOWLER: Yeah. It is the great hope that in the end, that the kingdom of God will be here a little more. In the meantime, though, things are quite grim (laughter). That's sort of the world we have to live in.
GROSS: So you write in your book I am preparing for death and everyone else is on Instagram.
BOWLER: (Laughter) I try not to be - I was trying not to be the worst about that. But like, it was weird to be 35, and I have this little kid. And when you look at your kid, I think they just look like the future, you know? Like, everything about them is possibility and milestones and what you imagine they'll be. And everyone I knew was living in that world of endless possibility. And it was really depressing sometimes to feel like I was always mentally trying to wrap things up.
GROSS: Your son was 2 years old when you were diagnosed.
BOWLER: Yeah, just turned 1. I just saw pictures the other day. And I have to admit that pictures still make me feel really sad. Like, I think I just - like, it's hard not to remember so clearly, like, he was too little. He was too little to lose me. And it's this feeling of endless gratitude I have every time I look at him. Like, oh, he is aging. I am doing this (laughter).
GROSS: Do you think that his presence in your life affected your willingness to take on some really harsh therapies?
BOWLER: I think that's right. I think - he is the most hopeful thing I can imagine. And he is a perfect reason to try to be as brave as possible within the confines of my day. Like, every day is some possibilities and some inevitabilities. And it's really hard to figure out which are which because sometimes you're so tired. Like, chemotherapy made me feel really cold, really...
GROSS: You mean physically cold. You got - became very sensitive to the cold.
BOWLER: Yeah, just physically cold - yeah. I was freezing. I'm freezing all the time. Thanks, chemotherapy. Yeah. It makes you feel really fragile. And then you have this permanent thing, which is your love. And, like, that feeling makes you want to do anything. And so it made me write a book, like something I never would have had the hubris to do before. It made me try to make my world as big and as ridiculous as possible. And I think so much of that is just the feeling I get when I look at him.
GROSS: So at one point, you asked your sister-in-law to promise you that she would tell your husband to get remarried if you die and that you didn't want your death, if you died, to end his life as well as your own. So this is a hard subject to broach. So if you don't want to talk about that, that's fine.
BOWLER: No. It's fine.
GROSS: But thinking about the possibility of him - of you being gone and him remarrying and your son having a different mother, I just - I think that that's probably pretty unbearable to think about. I know you...
BOWLER: I think - yeah. It's impossible. I mean, it really comes across as an impossible thought. Like, not that other people can love - that the people you love can love other things. You want that. You want more of that. But the idea that they would go on without you - ugh - like, it was impossible to conceive of. I mean, part of it felt - weirdly, the part that was easy was a reflection of the confidence that I have especially in the man I married man. Man, he's so good. And he is exceptionally pretty. And I thought, oh, you'll be fine. Like, you're so good looking. You'll be fine. I give it a month before someone's, like, knocking at the door.
But I think it was - I think it's just almost - it just seemed inconceivable to imagine really coming to the end of myself. And so the hope was always that - and I mean, that's why I was begging my sister-in-law. It's, like, that people have to come alongside and try to imagine new worlds for the people that you would do anything for.
GROSS: And to put aside your jealousy and envy, the kinds of things...
BOWLER: Oh, yeah.
GROSS: ...Yeah - that kind of actually go along with imagining your spouse with somebody else. I mean...
BOWLER: Oh, yeah. No, no - impossible.
GROSS: No one wants to do that - yeah.
BOWLER: Well, luckily, I have so thoroughly just ruined my family dynamics with how involved I am. I mean, who could live without me at this point? They've known me since I was 14, so I've just ruined everything. I will be in every picture. But I'll be totally honest. Like, that was one of my saddest early thoughts is - I remember thinking, like, should I be in this picture? Like, won't it be so hard for the person after me? And like, that's the stuff you never say out loud. Like, you never say that because it is so depressing (laughter). But the truth of it is, like, you're trying - your love makes you want to imagine worlds for them even if it doesn't include you.
GROSS: It seems to me that you don't need to be worrying about how someone else in the future might feel if you're in a family photo.
BOWLER: (Laughter) Yeah. I think you're right. Like, your brain is just so - it just - yeah - because I remembered it yesterday for the first time, like, my reluctance to keep living because I imagined - yeah. You're just doing triage right away. You're just doing triage on everything. The other weird thing I think your brain does is it assumes that you can save yourself or someone else some kind of future pain. Like, I think maybe that's just what love does.
But you take on these imaginative exercises. Like, I mean, I started giving stuff away that I thought my husband wouldn't want. Right away, I felt like, whoa, we have too many books. This is stupid. I'm an academic. I've destroyed this house with books. We should get rid of all these books. And it was my attempt to start slowly erasing myself. And that is just - you know, I've talked to people who say it took them a year to buy clothes because they can't imagine still having their body. And that was true for me, too.
GROSS: And now?
BOWLER: I got to wear a dress the other day that I had in a box because it was my teaching dress. And I got to wear it at my book launch event and get my hair done. And I thought, wow. Thank you. I am so grateful to be fancy instead of just in rough cotton in a hospital somewhere. So it felt good.
GROSS: And I think it's great that you have been able not only to write this book but to be well enough to be at a book launch party and, luckily, for me, to be on our show.
BOWLER: Thank you.
GROSS: So I think this is a good moment to take a break. So let's do that. And then we'll come back and talk some more.
If you're just joining us, my guest is Kate Bowler. Her new memoir is called "Everything Happens For A Reason: And Other Lies I've Loved." We'll be right back. This is FRESH AIR.
(SOUNDBITE OF THE WEE TRIO'S "LOLA")
GROSS: This is FRESH AIR. And if you're just joining us, my guest is Kate Bowler. She's written a new memoir called "Everything Happens For A Reason: And Other Lies I've Loved." And it's a memoir about having cancer and how her illness has changed her religious life and how religion has affected how she deals with her illness. She is an associate professor at the Duke Divinity School where she got her doctorate. And her doctoral dissertation was about the prosperity gospel, which she studied and also wrote a book about. She is not a part of that church, though.
So your personal essay before the book was written was published in The New York Times Magazine on the front page of the Sunday Review. You got a huge response from readers. What was the range of reactions that you got from your readers?
BOWLER: (Laughter) I'll be honest. Like, I did not think that through. I wrote it so privately. And like, I wrote it mostly in a hospital waiting room. And then I forgot that people will read it and then email you or send you things in the mail. So I got maybe 5,000, 6,000 pieces of mail or emails. And the most - I mean, the thing that stood out to me was the sheer number of people who said, I am so afraid to - I am afraid that I have my own - I mean, they wouldn't say prosperity gospel. But like, what happens if I just can't keep this life together? What happens if my dad dies or my kid dies, and I can't control this? And I am so afraid. And that was the most beautiful part of that experience is that sense of fragility, that we're all cracked open. And then we don't know what to do, and we can't pretend anymore.
But I guess the other less helpful reaction I got was - I kind of thought the point of the essay was please don't pour your certainty on my pain. Like, sometimes pain just can't be explained. I don't know why this happened. And that's OK. And then people were like, no, no, no. You really should understand why it happened. Let me explain it to you (laughter). So that was like the most common response I got as well. And that was just - that was super tiring.
GROSS: So why did it happen to you? What were some of the explanations?
BOWLER: Oh, lots of reasons - well, that there was a spiritual process I had not adequately tried. Maybe I didn't pray with enough faith or - or conversely that these are the wages of sin and surely God is just to allow me to die. There was a lot of that (laughter). And I was like - it was hard not to be judgmental because this one guy wrote it to me on the back of a church bulletin, like, clearly in the middle of a service and then just mailed it to me, which I thought was a little lazy. So yeah. People really wanted me to know there is a spiritual reason for my death.
And then other people were just kind of fixers by nature. And they thought, well, I really hadn't eaten the right foods or there were something from Whole Foods I should try or a special essential oil. Like, there was a lot of fixers. And then as I mentioned before, like, a lot of rationalizers. Like, this was going to be you and not me, and here's my reasons why.
GROSS: Was it part of God's plan? Did you get that?
BOWLER: Yeah, yeah, yeah, yeah. I should accept that for sure. But, like, I don't know. Maybe it's just living. But it's very hard to be fatalistic like that about everything that's precious about you. So my reaction was like, screw you (laughter). I'm doing my best.
GROSS: Oh. I think you mentioned in the book that one of the letter writers said to you that the cancer was part of God's plan so that you would write this article that would help other people.
BOWLER: Yes. Well, that's the problem right with the, like, circular logic of this is immediately if I wrote the article and then it helped people then, like, this is the plan. And then if I write the article or the book and then learn something, that's part of God's plan. And I thought, well, I mean, I can't - I lose when I win (laughter).
It was - it's hard to talk people out of the idea that, like, they're seeing, like, the matrix. Like, they're seeing all the hidden logic. And I certainly don't want to take other people's experience of the divine away from them. But I do wish hopefully that the world could be slightly gentler for people like me so that it doesn't have to be this whole critic-meets-sufferer encounter when you're in pain and you go out into the world.
GROSS: So I loved reading your book. I mean, parts of it just made me really sad. Other parts are, you know, incredibly moving. It also made me laugh a lot.
GROSS: But there's a part of it that made me really angry. And that's the part where you were - this is before you had your diagnosis. You were in a lot of...
GROSS: ...Abdominal pain. You'd...
GROSS: ...Have to, like, double over in pain. You kept going to the doctor, and the doctor kept saying, well, maybe it's a gallbladder - your gallbladder. Maybe we'll have to remove it. And you kept saying, I want another test. I want another test. Do something.
GROSS: And so...
GROSS: ...Finally, because you demanded it, you got a CT scan and found out that you had this large, cancerous tumor in your colon which had already metastasized.
BOWLER: Yeah. Yeah.
GROSS: So that's the part that made me angry. I imagine it...
GROSS: ...Made you angry because you should've had a diagnosis sooner. So...
GROSS: ...Did you ever talk to your doctor about that? Did you continue to see that doctor? Did that doctor ever, at the very least, apologize to you? Did you ever consider suing? Like, I would just be so angry.
BOWLER: Yeah. I mean, it's - the anger is there. And, I mean - and that's partly why I ended up writing so much about, like, the way people frame other people's illnesses and their unwillingness to say that's awful because so often, even in the hospital - I remember one of my first appointments afterwards. They have this checklist they go through where you're supposed to check off all the things that you're experiencing, you know? Insomnia, pain, et cetera, et cetera.
And I said part of what you're saying now, which is, you know, they really should've caught this so much earlier. I had to yell at someone, and I'm not the kind of person who yells at people. And then the nurse said, well, at least you're here now. And it really - that's - what everything skips to is everything is about addressing that day but usually at the expense of grossly minimizing what you've been through. And so I think that's probably my most common experience in medicine - is maybe for legal reasons. I don't know. But, really, nobody ever sits down and just says, I'm so sorry. That was terrible. It just won't happen.
GROSS: If you're just joining us, my guest is Kate Bowler. And her new memoir about her cancer and her religious life is called "Everything Happens For A Reason: And Other Lies I've Loved." We'll be right back. This is FRESH AIR.
(SOUNDBITE OF GUY MINTUS TRIO'S "OUR JOURNEY TOGETHER")
GROSS: This is FRESH AIR. And if you're just joining us, my guest is Kate Bowler. And her new memoir "Everything Happens For A Reason: And Other Lies I've Loved" is about getting diagnosed with incurable colon cancer that had already metastasized and then getting on, like, really harsh chemo treatments and experimental immunotherapy. And the - what the memoir's really about is about how her religious practice has informed how she deals with her illness and how her illness has changed her spiritual life.
You've had a lot of, like, bad reactions to the harsh chemo that you've had to take. And then there's the experimental immunotherapy drugs. So you've had lockjaw. You've lost sensation in your hands and feet, mouth ulcers, hypersensitivity to cold. You're right. It's increasingly hard to remember that these side effects are not the same as dying. Pain like that can be so distracting at the very least. I mean...
GROSS: ...How do you get your mind off of just feeling all the pain...
GROSS: ...When you're in one of those periods when you're feeling that?
BOWLER: Yeah, because the pain - it really does feel like it's like a noise, and it's too loud. And other people are trying to talk to you, and you can't quite hear them. It's - at least that's how my pain feels to me. So part of my hope for writing and for - I've been teaching this year and parenting, and I spent a lot of time with my friends is - I need to make sure that my world stays as large as possible to minimize the space that cancer and that pain takes up.
So part of my attempts to be a bigger person maybe than I would've been before, make my life take up more space is an attempt to deal with how terrible chronic pain is. But also, I think I should just admit that I am the worst. Like, I wrote this book in an attempt to understand my own pathological need to assume everything's always getting better. And then, as a response, I never take a nap. I never take a break (laughter). I mean, I really am refusing to learn lessons that I have been trying to learn for some time.
GROSS: Are you in pain now?
BOWLER: Oh, usually. Yeah, I think so. I don't think about it but yeah. If I actually was quiet for a second and thought about it, I think the answer would be yes.
GROSS: So one of your friends is a pediatric oncologist. And he told you once you were on the experimental therapy that you needed to think beyond the concepts of being cured or of dying and to think instead about how to get from one good outcome to another.
GROSS: Was that helpful?
BOWLER: Oh, man, because it's really hard not to imagine that you're either, yeah, healthy or dying. And if they said incurable cancer, I just - I didn't have a - I mean, who has a framework for that? So it has been helpful to start to think about time and treatment that way. And that's why I sometimes take it kind of personally when people say I'm terminal like because if we know I'm for sure going to die. I mean, we are all going to die. That seems surprising still to some people. But, I mean, incurable is just a different liminal space. It's like purgatory. And I have to learn to live there with as much grace and presence as possible not knowing the future. But it will depend on someone in a lab somewhere making a better drug or - I mean, all kinds of variables I just don't have any control over.
GROSS: So your friend who's the pediatric oncologist also told you that if you agreed to be blasted with these chemo drugs and the immunotherapy and endure whatever the side effects were, that he would make the end as comfortable as possible. Was that helpful - and if so, how?
BOWLER: I guess I just needed to have that conversation with someone I really love - to say at the very end - when you walk to the end of the line, like - and he's seen it. I've never really seen it. I don't know what it feels like. But can I just try my hardest and then trust that it won't be as bad as I imagine. And it was helpful to have someone who's so experienced in life and death say that he would be there and that other people will - that there's - that the end isn't quite as bad maybe as we imagine. But the truth is like no one knows, right? Like you're stepping in mentally, physically, like, into this unknown territory. And we just - we take as much guidance as we can get.
GROSS: Do you have any concept of what happens after life? Like, do you believe in heaven and hell? Do you have a concept of what that would be?
BOWLER: Well, I believe heaven. But I have mixed feelings about it if I can say that honestly. I mean, people were so quick to say that like this is the great reward, right? Like, heaven is going to be amazing - and to maybe minimize the fear of death. But I always felt really resentful of that right away because, at least for me, if I was gone, I just thought, well, then I'm going to miss everything. So heaven wasn't - I know a lot of people get very interested in heaven especially if they've had someone pass away. But I always thought, well, that's just not here - like not with all the things I love. So I wasn't very interested.
GROSS: You know, there's one sentence in the book where you write life is beautiful. Life is hard. And I think that's a great summary statement - simple and true.
BOWLER: It's just this little loop that my brain goes on. I mean, like you can see - because it's the two things at the same moment. Like when you're in the hospital, and you've got a face mask on, and you can taste that like brine of the awful fluids that they've just pumped into your body, and you look around, and you just see something so beautiful - like the way an old man reaches over to like adjust his wife's hair as she gets her treatment. And their love just makes you stop for a second. And, like, I see it every day - like something that is just heart-stoppingly beautiful.
GROSS: Kate Bowler, it's really just been wonderful to talk with you. Thank you so much.
BOWLER: Oh, my word, what a gift. Thank you.
GROSS: Kate Bowler's new memoir is called "Everything Happens For A Reason: And Other Lies I've Loved." She teaches at Duke Divinity School. Tomorrow on FRESH AIR, how far did Steve Bannon get in his plan to deconstruct the deep state and take down the Republican establishment? And now that he lost his position in the White House and Breitbart News, what power does he have? My guest will be Joshua Green who's bestselling book about Bannon and Trump "Devil's Bargain" just came out in paperback. He's a national correspondent for Bloomberg Businessweek. I hope you'll join us.
FRESH AIR's executive producer is Danny Miller. Our technical director and engineer is Audrey Bentham. Our associate producer for digital media is Molly Seavy-Nesper. Roberta Shorrock directs the show. I'm Terry Gross.
(SOUNDBITE OF MARIA SCHNEIDER'S "WALKING BY FLASHLIGHT")
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.